No Extended Warranty

Medication Vacation

2012-01-08T04:43:00.003-06:00

Chronic Pain Bites

Every once in a while I take a "medication vacation". I don't quit taking anything that would endanger my well being or vital functions, but I discontinue my pain medicaiton and any other extraneous meds that might be messing with my metabolism. I wait it out as long as I can, and then start again.

This isn't the wisest choice. Tonight I found myself after approximately 36 hours without pain meds in a heap o' pain. I had some withdrawal symptoms the first day, which lets me know that I am physically dependent on the medicaiton. The pain, which I do not medicate to the level my physicians want me to, came back stronger and stronger and stronger the longer I was off the pain medication. I always have this bizarre hope that the meds will wear off and the pain will be magically gone. This is not based on any fact or any basis of reality.

The medication vacation helps me realize how much pain I am actually in, and why I take the medication I do. With chronic pain I think you loose perspective on how much pain you are experiencing. After all, what is the difference between excruciating and untolerable? It is a very fine line that gets very blurred. I fear I will think I am in pain just to continue getting pain medications, I fear that my pain might be imaginary, I hope it has disappeared and fear it has not. When I cannot discern how intense the pain is or how overwhelmed I am because of it I try to see what life is like without the medication. It also helps my gastroparesis and my digestive system perks up for a few hours, which is the best part of stopping pain meds.

I thought my pelvic pain has increased since the cathertization marathon began but I wasn't sure. I thought that my nausea has been getting worse but I wasn't sure. I thought that the neuropathy and leg cramping has increased but I wasn't sure. I am now.

Intense pain wears me out and I haven't been sleeping well the last week. I'm not sleeping well tonight either - why I am up writing this I guess. I caved at about 2 AM and took some medication and will put my pain medication patches on in a short while. Some medication was left in my system as 36 hours was not enough to clear everything out so at least that gave me a bit of a jump start from my own idiocy. I lasted longer than the previous medication vacation I took in October - only 24 hours that time.

I knew I had to start the meds back up again when I woke up from a short nap with tears running down my face on on my pillow, and I was clutching my stomach and (gasp) my pelvic region from the pain. It is hard to describe because you can't point to a certain spot and say - THAT is what is causing the pain. It is general and it is specific to certain nerve groups all at the same time. It is enternal and external.

The Headache is not liking me tonight. Seeing as The Legs and The Belly were already in revolt, not amazed The Headache decided to flare up too. It's not too bad, so hoping I can get everything controlled before The Headache gets too riled up.

I have work to do this weekend. I had not really planned on but that is what I get for taking two days off last week, two extra days this weekend. Not really complaining, just very hard to concentrate. Not sure if I should keep trying. It gets harder and harder to work a 40 hour week, and lately just 40 hour weeks have been few and far between. Even thought I have tried very hard to communicate what I am going through, I am sure people at work are thinking about all the deadlines we have to meet and what needs to get done - not realizing that if I am not well enough to drive, I am also hard pressed to sit or stand or do anything that requires concentration. I don't think I can do this job anymore. I want to keep going very badly (or is that very badly want to keep going?? I don't want to keep going if I have to do it BADLY!!)

ALL of my doctors have told me this fall to hang up my hat and go on disability. Easier said than done. Financially I don't know how I will be able to do it. I thought my new employers had long term disability only to find out in December that although they had paperwork we signed that said we had long term disability we were supposed to read between the lines and realize it was not offered. ARGH! Well, they probably would have had a preexisting clause in it like they do in their short term disability, so I would not have any coverage anyway. sigh. My health insurance is excellent, but if I go on Cobra (and we are big enough now they have to offer it) I don't know how I will be able to afford it. I also don't know how I will be able to afford pain medication without insurance. Another reason for the medication vacation - am I paying for something I really don't need?? Bigger sigh.

Going to drag out my fentanyl patches (I can't find my Tegaderm patches to put on top of them - where o where have they gone - two BOXES of them) and slap them on and try to sleep a little while. Then up and at work again. Ah well, at least its a diversion!!!

Wishing I had a Fast Car to Get Myself Outta Here...My body's too old for working....but I know Things will get better...

Overwhelmed

2012-01-05T01:23:00.000-06:00

Toooooo Tired

Feeling more than a little bit overwhelmed today. The Belly is not cooperating - probably because of the drive Tuesday to St. Louis and back. I am exhausted by that little bit of effort - I'm such a weanie. Pain is through the roof and medication only helps reduce it couple of notches. Dreading tomorrow,or is that today??

Ah well, To Infinity and BEYOND! Can and will move forward! Standing still, while tempting, is not an option and my reverse gear seems to be stripped.

Dr. Bellyfixer Scores 100%

2012-01-04T02:11:00.000-06:00

Better Buy Stock In Miralax

Back at home after driving to St. Louis and back (five hours going and five hours coming back) to see Dr. Bellyfixer. Experiencing lots and lots and lots of pain this evening. So glad I took both Tuesday and Wednesday off because I have taken my breakthrough pain medication (dilaudid) and it doesn't seem to be doing anything. I probably could take more of it, but I think I will make a supreme effort not to, and see if I can just suck it up and bear with it.

I didn't take my neurontin Monday night or Tuesday morning because it makes me sleepy. I also took some OTC anti inflammatory but they didn't help much. Tried to stay alert, but had to pull over numerous times for 15 minute naps. I hate to drive long distances anymore because of this.

Dr. Bellyfixer and his fellow specialist in training Dr. Bowels were very helpful. I have so many things wrong with me they let me pick what problem I wanted to tackle first so I chose abdominal pain caused by bacterial overgrowth of the small bowel for priority #1. They were able to come up with a new strategy without adding any additional medications so I was thrilled.

Because I am now having electrolyte depletion and leg and foot cramping Dr. Bellyfixer wants me to start using Gatorade each day. I am to add a couple of capfuls of Miralax to the Gatorade. Dr. Bellyfixer hopes this will control the fecal incontinence a little better. Once every three to four weeks I am to purge my system top to bottom using Miralax - something like half a bottle with 32 oz. of Gatorade. Dr. Bowels said that I cannot overdose on Miralax and Dr. Bellyfixer agreed with her. He said Miralax is a large molecule preparation that causes the bowel to excrete fluids. Dr. Bellyfixer's nurse said don't go far from the bathroom on the days scheduled for purging. They said they have one patient that has to take 12x the recommended dose. Not tasty.

I will be consuming mass quantities of Miralax and Gatorade, neither of which are covered by my insurance. If buying these sends me to the poorhouse, I'll have to make sure it has a poop-house attached!

Dr. Bellyfixer asked if I would participate in a study on persons with bowel motility issues, like irritable bowel syndrome or Crohn's disease. I was happy to! They took some blood for DNA testing and some other blood tests and I have two or three information booklets to fill out and mail back. Not a big deal and I don't have to write a diary or anything like I had to for the occipital stimulator study, and it's a one time effort. Hoping it helps other people, as my issues are more bio-mechanical than genetic.

I have a March appointment to go back to Dr. Bellyfixer. I will have made progress on getting my bowels straightened out by then (a bowel joke as my bowels are kinda kinky = HA!) and maybe will be able to pick another issue to tackle.

I hope that this post makes sense - the dilaudid and the phenergan are making me "drift" so I keep snapping back to the post and then zoning again. Wish they did a bit more for the pain.

The Power of The Subconscious

2012-01-02T22:27:00.003-06:00

Suggestion or Inspiration?

I decided today that one of my resolutions for the New Year was to learn to knit socks. When I was young I was taught to knit by my mother and a pair of house slippers was the first project I was taught to knit, a very simple first project. I learned soon to knit "in the round" using four needles and then moved up to hats and mittens, graduating to gloves with five fingers. I have made afghans and scarves but really haven't knitted for years except for a disastrous doggie sweater I made for my dachshund Augie. It might have looked OK if he was a foot longer, had a large hump in the middle of his shoulders and a couple of extra legs and if his throat had been as big around as his butt. Otherwise, it was a really good fit.

I started wondering this evening why I had a sudden urge to knit. Why was this dwelling on my mind? Then it dawned on me. CATHETERS! The intermittent catheters I am using sorta generally remind you of a knitting needle. Duh. I'm handling them over and over and over and over, and I guess it has been tickling at the back of my brain. Now that I have already gone and bought the yarn and new needles and downloaded some new patterns I have figured it out. Probably should have saved myself the trouble - I thought I was being inspired, instead I was being nagged. Sigh.

Since I have some new wonderfully crazy yarn I think I am going to have to knit some socks. I know myself tho. Probably this resolution is going to go into the box with all my other unfinished resolutions. I will hit myself over the head later and say "Why did you ever start this??" - at least this time I have figured out the why!

I am on my way to St. Louis tomorrow to see Dr. Bellyfixer. With gastroparesis I have to take "Miralax" every week in order to make everything move through my system. Some weeks it is very hard to make things move. Such is my dilemma tonight. Watch - I will be three hours into a five hour drive and the Miralax Miracle will decide to happen between rest stops. I guess I'll take extra clothes. Gosh, I feel like Charlie Brown - I just can't seem to win. Drat or as Snoopy would say "Bleah." Thinking of Snoopy maybe I will go dancing in my mind with Snoopy and the bunnies; beagles are Always Happy and Joyous (at least our family beagle Max was). Wandering down memory lane a little too much lately I think, but its such a lovely lane!

Happy New Year

2011-12-31T22:49:00.001-06:00

For Auld Lang Syne

I'll take a cup of kindness - hoping that next year is going to be a better year, not only for me, but for everyone!

Time moves on, flowing around me like a stream around a boulder. I feel anchored to the past more and more. Growing older, watching the world change, watching it march onward in an ever increasing blur of speed as I look back at what was. I can see why my mother relates more to events that were thirty years ago that what happened yesterday.

Wishing I had a few fireworks to shoot off tonight as the years turn yet again. Ah well, there's always next year!!! I'll just pretend my virutal fireworks are real in my picture.

Sharing with you what I feel is one of the best recordings of Auld Lang Syne - EVER! Matches my mood tonight! Take care all!

Glad For a New Year

2011-12-30T02:54:00.001-06:00

Sorry I have been gone so long

So sorry my blogging friends that I have been out of touch so long this year. Life for me is just starting to get back to normal after a very bad year.

When I left off posting summer was approaching, my car was starting to die, I was getting sicker, I was trying to decide whether or not to retire, and I was waiting for information from my neurologist visit with Dr. House.

By the end of May I could not keep food down. My abdominal pain was increasing rapidly. My weight was dropping quickly. I started taking more and more anti-nausea medication and by June was injecting intramuscular phenergan at home trying to control the nausea.

My car broke down completely, the air conditioner at my home quit in the middle of a huge heat wave, and my hard drive went down on my computer all at the same time I was getting sicker. I had more tests, yet another endoscopy with results that I had had before - inflammatory gastritis. Nothing was found that would create the amount of nausea I was having. Everything was breaking at once, including me.

I tried to travel to a client in July and made it, but vomitted all the time I was there, at restaurants, at the hotel, just walking somewhere. The pain was becoming unbearable. My PCP increased my pain medication, but it really wasn't able to do much with the pain - all of my pain levels were rising higher and higher and higher as I was less able to control my pain or sleep. By the end of July I was eating a cup of plain rice about every third day, and throwing that up within an hour of eating it.

Finally in the first part of August I could not keep anything in my stomach at all. Everything came back up - fluids, pills, food. My list of places I have puked was getting longer and longer. Even the phenergan injections did not help. My PCP wanted me to see the GI doc at Washington University in St. Louis I had seen before, Dr. Bellyfixer. The car and computer and air conditioner were all operational by this point, but I wasn't. I couldn't drive to work, I couldn't walk across the yard, and I definitely couldn't drive to St. Louis. So inpatient at the local hospital I went. Bleh!

I think my PCP, my local GI, and my hospitalist had a plot to get me to St. Louis. After the third day in the hospital not holding down food and not able to take a gastroparesis test where you have to swallow food (I threw mine up) I was shipped by ambulance to Barnes Hospital in St. Louis. The Headache was in full swing by the time I got there  (something to remember - 4 hours of ambulance bouncing trumps occipital stimulator goodness) so the Barnes doctors treated me as if I am some kind of bizarre goofball idiot. I will cover THAT experience sometime in another post. Thank heaven by day three at Barnes Dr. Bellyfixer and his crew came by and gave me a diagnosis, bacterial overgrowth of the small bowel due to gastroparesis due to radiation damage to the nerves governing the large bowel. Well, maybe that's two or three diagnosis, hmmm. I was given some very strong antibiotics and the vomiting got better and my abdominal pain decreased. I got a free Greyhound bus ride home. Sigh.

This fall, I saw Dr. House for my followup visit. He wanted me to be followed by Dr.Kildare. I told him Dr. Kildare said I was to be followed by Dr. House.   Dr. House was aggravated by Dr. Kildare. Join the club I told him, but most doctors I see in Springfield are "hands off!" because the radiation damage is from their hospital system. Dr. House concurred that radiation damage is the cause of my neuropathy and continuing disability, and agreed to follow me once a year. I had cut my pain meds way down in August because I feared that they were causing the nausea, but Dr. House said the only treatment for my neuropathy is pain medication and neurontin. Caught between a rock and a hard place, like always. Ouch.

My company got bought out in September. I needed to travel in order to get everything caught up for the back orders of the new firm and I tried very hard to do this in late October and early November. After a few days on my feet my bladder started to shut off....completely off, as in out of business off. I started having episodes of overflow incontinence which is like having a water balloon burst full of urine. Not good. I hoped by the end of November this would improve if I got off my feet. Nope.

My bosses are trying to arrange a job where I don't have to travel. I am hoping maybe I can work from home, it's about my only hope to keep working as I have finished out the year with yet another bit of bad health news: I had urodynamic testing last week and found my bladder muscles are dysfunctional, probably from nerve damage, similar to the problems parapalegics have with their bladders. The danger is that urine can be pushed backward into the kidneys and cause permanent kidney damage. The solution is to use intermittant catherterization. Right now I am doing this three times a day. This has made the pelvic pain increase but I can't have kidney damage on top of everthing else. Good heavens, they are some of the last organs that I have that are still operating properly!! My PCP already tells me I have to retire or my health will continue to decline.  Another sigh.

I see Dr. Bellyfixer next week in St. Louis. I am steeling myself for more bad health news. I have had an abysmal health year this year, between The Legs, The Belly, The Bladder, and The Headache. Since the ambulance ride, The Headache has sent me to the ER at least once each month to be knocked out - the last time was the night of the holiday office party mid-December - so embarrassing, I had to leave without eating anything or barely being polite.  I see the A-Team at the headache clinic in a couple of weeks to see what they recommend to stop The Headache in its tracks. The Legs and feet are cramping badly, so some mornings it takes me several hours to get dressed. I have nutritional and electrolyte imbalances because I still have trouble eating with The Belly. The neuropathy is bad enough I may become a nudist because I can't hardly stand to have clothes touch me some days. Not a good thought in the winter...Brrrr.

I should be happy - I am 50 pounds lighter this December than last!! Hoping everyone has a great 2012. Thank God and Greyhound 2011 is gone!!!

Lawn Mower Blues

2011-05-08T22:33:00.000-05:00

Mom's Day at Our House

My gift to my mother was a nicely mown lawn this Mother's Day Sunday. This may seem simple - no brainer - what is there to mowing a lawn?? Well, this being my life, nothing was simple.

A couple of years ago my brother bought a used riding mower, 1970's vintage, because it was a "special" edition of a lawn tractor. It was pretty cool, had a hydrostatic transmission and hydraulic mower deck. But it was pretty old, and took almost as much oil to run it as gasoline. Last week it took a dump, as in throwing a rod. My brother, who had been using this to mow the lawn, decided to sell it instead of putting more money into it. Since repairing it would have been a chunk of change and my change is limited, I was glad he was throwing in the towel and cashing out. He was able to sell it after just a few days of advertising it. Guess it really was a special edition to sell so quickly without a working engine.

That left me with a dilemma of what to do to mow the three or more acres of lawn I have. The next door neighbor was mowing it, but when my brother bought his tractor that arrangement stopped. Buying a new riding lawn mower was out of the question - very costly. Finding a used mower in good shape at a decent price at the beginning of summer mowing season is hard to do. My brother is trying to get things together to start his own establishment, so I needed something I could drive and maintain.

Although I work with healthcare and computers now, long long ago I helped with the family farm implement business. We sold mowers and parts for mowers, so I know a little something about what to look for. I saw an auction this Saturday (yeah, BEFORE Mother's day) with an older riding mower that is a good brand. I had to stand most of the day Saturday to wait for the mower to sell. Men were hovering around it, inspecting it, giving it the once over.

I was familiar with the going price on Craigslist thanks to my brother's research. There was another unadvertised mower at the auction that was a much better mower and even more men hovered around it. They ignored the dishes and tons of Christmas decorations that took hours to sell. I waited and waited, bought a couple of sombreros that I have since given away, and FINALLY it was time for the mower I was interested in to sell. About six men bid on it. I waited until the bidding was pretty well over, and upped the bid once and BINGO got the mower. I think if the more expensive mower had sold first I might not have been able to afford the mower I bought, because I could see the guys thinking - if I pay THAT for the older mower, then I won't be able to buy the newer mower. Thank heavens I was content with the older mower. I didn't have to check it out mechanically, because surely SIX men had already figured out that it worked.

Now I had the mower purchased, I had to get it home. My older brother came to the rescue and we managed to drive it right into the bed of his pickup and get it home. WooHoo!! Then I had to buy gas. Ouch!!! I then mowed yesterday and today, with my neighbor coming over and giving me pointers on how to run the dang thing. Thank heavens for people with real volume mowing experience. I got the knee high grass mown and have quite the sunburn going on. I will have a true farmer's tan on my arms. I think it took about 12 hours to mow the lawn. And that is without doing the trimming yet. Big sigh.

I did mow part of my other neighbor's yard in addition to my own. The older gentleman who lives there with his wife recently had knee replacement surgery, but he waited so long his muscles had atrophied so he is still unable to walk several months later. His wife is hemiplegic and unable to mow the lawn, so one neighbor is taking the far half, and this week I took the close half. I got it done just before their children got there for Mother's Day.

My brothers cooked supper for Mom, and my sister and one of my brother's bought her big bunches of penny candy, a lot of it from Mom's childhood, and some of it her old favorites like Snicker bars. I'm pretty stoved up from two days of standing and driving and burning, but Mom loves a tidy lawn so it was worth it. Now I just have to try to maintain it. Argh!!!

I go tomorrow for my pre-procedure testing, to make sure I can endure general anesthesia for the bladder/kidney test thingy. I am totally bummed because my car is even worse this weekend than last week. My brother is going to drive me in his pickup, and then take me to work and pick me up later. I don't know what I am going to do on the transportation front. I live three miles from town, so I'm going to have to do something fairly quickly. Argh x2!!!

Hoping you all had a pleasant weekend. The weather was lovely for getting a sunburn here - slightly hazy at a high altitude and a cool breeze. Got my annual May sunburn going on big time. Guess maybe Dr. Skinner will have to check me for even more sun damage next year!

Assessing My Well Being

2011-05-06T03:30:00.062-05:00

My Reality Check

I have a little questionaire I run through on a periodic basis, to assess where I am verses where I was. Sometimes I get so caught up in the day to day aspects of managing my own multiple health issues and my mother's health issues, and caring for my mother, I lose perspective on the larger scale of how I am doing over time. I first wrote about this list in June 2010, and have added a few more questions since then:

Do you have a life threatening illness? No, unless anaphylaxis counts
This year to last year, health improved, worsened, same? Worsened
This year to last year, finances improved, worsened, same? Worsened
Is your family life stable? Not as much as last year
Is your work life stable? Yes
Are you not stressed, slightly stressed, really stressed? really stressed
Are you feeling hopeless? No
Are you tired? Yes, extremely so
Have health problems affected your interaction with others? Yes
Do you take yourself too seriously? Only under the cover of darkness!!!
Do you have trouble concentrating? Most of the time
Do your illnesses intefere with your ADLs? Yes
Do you feel sorry for yourself? No
Are you able to relax? Rarely
Are you able to sleep? With Difficulty
When you sleep is it quality sleep, leaving you rested? No
Are there people worse off than you are? Yes Most Definitely
Do you feel you are acting appropriately concerning your illness? Yes
Do you still have a sense of humor? Some Days More than Others
Despite your own issues do you have concern for other people's welfare? Yes
Do you misuse or abuse medications given to you? No
Do you project your feelings about your illness into your interactions with others? I hope not
Have you put life plans on hold due to illness? Yes
Do you feel illness has cheated you out of a life you deserved? No
Are you happy/content? Yes
Do you miss the life you used to have? Yes
Do you ever have a day where your illness disappears? Not anymore
Does your illness make you fearful? Yes, I fear reaching my pain endurance limit
Do you find joy in common everyday events? Yes
Do you feel your life, in all aspects, is better, worse, or the same from last year? Worse

A great list, just what to do with it after I answer all the questions is a problem. I look at my last list (I keep them in a folder on my PC) and I try to see if there is a trend with some of the questions - is my health improving, or getting worse? Is my attitude better or declining? When I figure out what is better I look at what is making it better and try to include MORE of that in my daily life if possible. When I figure out what is worse I try to see if anything that is making it worse is under my control, and if so what can I do to improve this. If something is not under my control I make a mental note to "let it go" and just let it be.

Does this method really help anything? I am not sure it does. It makes me feel like I can make a difference in my own life. It helps me identify what works and keep doing that, identify what doesn't work and find a way to change it. I'm a planner and like to have things laid out so I know what to expect. Unfortunately one of the things I cannot control is the actual decline in my health and the rate of that decline.

There are a few questions that I consider true emergencies in self care that need to be taken care of ASAP. One of them is projecting feelings about my illness into my interactions with others, so if I am feeling negative about my illness I am reacting negatively to others. This is a sneaky one I have caught a couple of times just by using this questionaire. For me, I was able to do a self adjustment, some one else may want to seek outside help or counseling, or even not do anything. Another question I consider urgent is do I misuse or abuse medications given me. Since I take some powerful pain killers this is something I need to be aware of, because I feel it is just a short step to addictive behavior from physical addiction. The third "key indicator" for me is do I feel I am acting appropriately concerning my own illness. Obssessing too frequently or just ignoring health issues are both problems I feel I need to address on occassion. This blog is my outlet for obsession, and unfortunatley lately just ignoring health issues is not possible. Big Sigh.

Hope you all have a great week, I am including my personal anthem I play when life starts getting overwhelming, from one of my favorite groups Chumbawamba, called Tubthumping. I wish with my pancreatitis I could "piss the night away" with a whisky drink or a cider drink or a vodka drink once in a while - I guess listening to the song is my next best thing!!! My life is one big "I get knocked down, but I get up again" anthem. Sigh.

Foxes

2011-05-05T23:26:00.000-05:00

New Neighbors

We have a family of foxes roaming around the back acreage. They seem to be living in the partially filled in basement where the next door neighbor's house burned down a couple of years ago. It would make a perfect fox burrow, and probably won't collapse on them when it gets wet like the last few weeks here.

Momma fox is looking a little scroungy, with scruffy fur and a trifle skinny. She has five kits that are so cute! My brother thinks she must be weaning them. Mice and other things that foxes regularily eat (I hope chihuahua is not one of their favorite meals) are in short supply right now due to the extremely wet weather conditions. Perhaps wrongly, but out of the desire that the young foxes get stronger and able to hunt on their own soon, we have been putting out high protein puppy food to supplement their momma's foraging abilities. These are red foxes, and are very pretty against the green grass. We also have grey foxes that live here, they seem to be slightly larger than the red foxes but since you can't get very close that is just a guess.

I saw Dr. Skinner the dermatologist today. He looked at my brown spots, and kept asking are you worried about skin cancer? Can you show me which one you are worried about?? I guess he didn't get the memo that I'm not worried about skin cancer. He insisted that my immunologist Dr. Calm sent me to him for an entirely different reason, and just mostly seemed to be intent on physically inspecting my skin rather than taking any sort of detailed history. I guess if your history does not include skin cancer you are on the OK list with Dr. Skinner. He prescribed some sort of steroid cream for the lesions I have been getting in addition to my hives. He seemed to think they just were hives I scratched and would not admit it.

Dr. Skinner seemed like a nice young man, but in the very short time I saw him he managed to create an unfavorable first impression. Number one, he didn't listen to me. Number two, he didn't read any of his referral paperwork from my immunologist. Number three, he assumed I was worried about something I was NOT worried about. Number four, he acted as if I was lying about scratching my hives verses the lesions I came to see him about. Number five, he charged for a 30 minute initial patient visit when he only took 15 minutes. Number six, he seemed disappointed when I said the discoloration on my skin from the hives did not bother me - I suspect it was a billing opportunity missed for skin laser treatments. I guess I should be happy I don't have skin cancer - thank heaven for small favors!!!

Maybe after I use his wonder steroid cream and all my bumps disappear I will think more highly of Dr. Skinner. Maybe after I have a recurrance of the sore places I went to see him about and he biopsies them I will be happier about Dr. Skinner. Maybe next year when I come back to be visually inspected again I will be more favorably inclined. I doubt it. Big Sigh. Yodel lay he he.....heeee.

Disaster Day

2011-05-03T01:12:00.000-05:00

Car Trouble Troubles

On my way to a doctor appointment this morning, and then to work when my car broke down on the interstate. Not completely broken down, but I had the accelerator pedal to the floor and all the faster the car would go was 20 mph. I could have run faster even with BLING. I was able to drive on the emergency strip and get to an exit to see if my brother could help. My poor old car belched blue and white smoke and back fired on the way off the interstate and THEN I could hear something that sounded like an exhaust leak or a vacuum leak. Big Sigh.

This is the bad part about everyone you know being broke - just getting someone to drive 15 miles to follow you back in your sucky car is an adventure in frustration. I was lucky, my brother was able to drive to my sisters and borrow her vehicle to come and drive behind me home. He is retired, but worked for years as a master mechanic for large equipment, so he did some basic diagnosing of the car.

Ended up changing the fuel filter, changing the spark plugs, fixing a vacuum leak and THEN finding the cause of it all - an electronic solid state gadget the spark plug wires and the fuel system computer plug into. Eighty some dollars later (I already had the spark plugs or that would have been another $45) my old Taurus was purring like a kitten and actually accelerated when I gave it more gas! No telling how long that doodad was going out. My car has about 190,000 miles on it. I bought it brand new in 2002 with my last perk from the great big giant insurance company I used to work for - a Ford employee discount. I hope that it lasts for quite a while longer as I don't know how I will be able to replace it. I told a gal at work when I called in today that if I showed up to work in a 1988 Marquis then they would know the Taurus had bit the dust, and that was all I could afford to replace it with!!!

I missed my dermatology appointment but will call tomorrow morning to rebook. Now it will probably be years into the future - the dermatologist will have to check my wrinkles for wrinkles! Dr. Calm was so nice, he called Dr. Pepper and they cancelled the IVP. Now I will have to have an outpatient procedure that requires general anesthesia called cystoscopy with retrograde pyelogram. Dr. Pepper's nurse gave me some attitude this morning when I called to make sure the IVP and the followup doctor visit had been cancelled, but then lightened up later when she figured out her own doctor cancelled the procedure.

The urologist will insert a cystoscope via the urethra into the bladder, and then up the ureters towards the kidney. The urologist's nurse assured me there would be NO contrast used, however all the literature on the web says that it is a type of fluoroscopy procedure and that a small amount of iodinated contrast will be used. I am not going to give permission for any iodinated contrast to be used. The ERCP I had for my pancreatic/biliary sphincterotomy I expressed concern about the contrast and was told it was a small amount yet I had anaphylaxis and I came out of the hospital with my permanent headache. It just isn't worth it to me.

I go in for that on May 11th. I have been so sick last weekend and today with abdominal issues. I have spikes of pain piercing my left temple as The Headache has slipped its bounds. I have terrible nausea and I have been doing the dance of pain all evening between The Feet, The Legs, The Abdomen, and The Pelvis. Hoping maybe this test will help me figure out what is happening but truly doubt it will do anything except let me meet my out of pocket maximum by May 12th.

I need to call tomorrow to check with Dr. House's staff about the rest of my blood tests. Apparently the doctors learning the trade there could not figure out what lab tests had been ordered, vs. resulted, vs. in the chart, so I have to call back this week. Another Big Sigh. I wish I was rich and had an assistant to do this for me!

Another task ahead of me is getting a full dental evaluation as my PCP and I discussed the sad shape of my teeth. Once I had very nice teeth, but now the enamel is falling off, and the enamel on the back of my upper teeth is missing, due to excessive vomiting from my digestive issues. I would like to get a couple of implants before going the false chopper direction, but due to my diminished financial circumstances fear I will have to end up at the local discount dental butcher shop and get the teeth pulled and some cheap choppers stuck on. Life in the economy lane is not very fun when it comes to dental work.

The Miracle of Angel Baby Kitty

2011-04-30T18:56:00.000-05:00

What Faith Can Do

I have been thinking a bit about faith and it's place in my life. This is not about religion but faith, faith that things will be better, faith that your heartfelt wishes can be heard and met, faith that in what seems to be a devastating and uncaring world someone cares. One of the most powerful stories of faith in my personal experience is the story of my niece and how she got her Angel Baby Kitty.

My niece loved kittens, cats, and all things cattish. When she was small, about 6 years old I gave her a toy stuffed cat - a very large white Persian kitty she promptly named Fluff. She loved Fluff. Fluff sat on her bed guarding her every night, Fluff was a pillow you could hug and tell secrets to, Fluff was a cat you could dress up that didn't squirm to get away and scratch you.

When my niece was about nine her parents separated and got divorced. Fluff came with my sister (her mother), my niece and her sister to live with my parents and me until things settled down and the really scary things that were happening (even scary to adults) stopped and they could live safely on their own. Fluff protected her throughout all this turmoil and fear. Fluff listened to all the things she couldn't talk about to anyone else. Fluff was loyal and loved. Fluff loved back without reservation without being mean without violence and absorbed any tears that went into her fur without complaint. Fluff was becoming less Persian but more American shorthair each year but Fluff was full of love and never cared.

One day the first spring they stayed with us, a white female kitty showed up. She was friendly and let my niece and her little sister hold her and pet her. We knew she was the neighbor's barn cat, in heat, looking for a mate among our barn cats. My niece however, had another idea. This cat, she told us sincerely, was an angel from heaven, because she had prayed and prayed and prayed to God for a real white kitty to be her friend and this kitty was an answer to her prayers. My sister tried to gently let her know that no, this was the neighbor lady, Dorothy's, kitten. My niece was adamant. She KNEW this kitty was a prayer answered in the flesh.

My sister had lost everything, all her possessions, all her photos, all their clothes, but through this all she had never lost her faith: faith in God, faith that life would be different, faith that circumstances would improve. When Ms. neighbor kitty had her needs met and went home, what was this going to do to her little daughter? When talking about the Angel from Heaven, my little niece's voice had wavered and tears had come to her eyes, but her mouth had been set very determined and her chin said don't mess with me!!! How could my sister stop the disappointment we adults could all see coming?

Mother tiger mode set in. My sister went into full campaign attack mode. There was not much about their present life circumstances my sister could control, but she was NOT going to have her daughter disappointed about her Angel kitty. Calls went out, family members were recruited, customers of the family business were queried - is there a spare white kitten out there somewhere?

We lived in a very rural farming community. My graduating class in high school was less than thirty students. How would my sister find a pure white cat in this sparsely populated area, even with the plethora of half wild, half feral barn kitties? Most of the kitties in the region were striped or spotted, not many fancy white Angel kitties around. As luck would have it, right down the road from our family business, the niece of of a friend of our brother had a set of kittens ready to be adopted and some of those kittens were pure white. My sister made arrangements to pick up a special white kitty.

We went down, and there was this fat cute little pure white kitten. He was obviously well loved and well cared for. The little girl whose kitten he was very sad to see him go, but really loved the idea that she was giving him to another little girl. My memory goes dim at this point, but I think my sister brought her daughters with us and my niece picked out this ornery sparkly white Angel Kitty that she was certain God had sent there to be waiting for her.

Angel Kitty was an instant hit, and soon became Angel Baby Kitty, soon shortened to Baby. He became an enormous large lounge cat, who loved to be held and petted. My niece never knew how hard my sister searched for the perfect white kitty, under extremely tight time frames. This is how I think miracles happen - someone, somewhere, has faith - faith that wrongs will be righted, faith that justice will prevail, faith that Angels come down from heaven in the form of kittens to answer prayers and THEN someone somewhere has the heart and will to see that the faith is not in vain.

What moves these persons to have faith or take action where others don't? That is something you have to answer for yourself. I already have MY answer, but it might not be your answer.

What happened to Fluff, the old stuffed plush toy kitty, in all this? Did she become neglected and in the trash bin when a real life white kitty came to live with my niece? No, this keeper of secrets, this defender against danger and darkness lived with my niece for years and years, moved with her when she got married, traveled in a luxurious shoe box across country while they moved, and waited patiently for another little girl to come along to love her and whisper to her in the dark. My great niece, my niece's niece, inherited precious Fluff and despite Fluff's diminished fur capacity and increasing baldness she was loved even more, with a whole new generation of hugs to hold.

I continue to have faith that things will be better, that life has joy and meaning left for me. I may be an old Fluff, worn out and scruffy, but I have faith that someday I will find new adventures and new challenges waiting for me, and my old broken shoebox of a body won't be a worry to me anymore.

Mast Cell Madness

2011-04-30T00:25:00.001-05:00

Another Specialist to See

Saw Dr. Calm today. I explained the IVP situation with Dr. Pepper and Dr. Calm agreed that I should not have an IVP, that it could be life threatening. I just had an anaphylactic reaction a few weeks ago over two pieces of cashew, and I have a pretty good crop of hives, so premedication for me is sorta like a drop of water in a desert, doesn't get much done.

Dr. Calm reordered a bunch of tests to check for mastocytosis. He also ordered a cashew antibody test to see if I am really allergic to cashews or if that was just my body's way to say ENOUGH. He also is sending me to a dermatologist to be checked for mastocytosis problems of the skin (maybe my big winny fat nose hive?? or the brown and red spots scattered all over my back..). He asked why I hadn't seen one before and I said it is because there is generally a year wait for a dermatologist in this town. A gal I work with had recurrent skin cancer and the local dermo's office told her it would be three months before she could see him since she would be a new patient. I don't know what mojo Dr. Calm worked but I had a call from the dermo's office and have an appointment early Monday morning. WooHoo!

Dr. Calm thinks I need to get my hiving under control, as that may be why I reacted to the cashews. So now I am on 50 mg atarax at night (H1 blocker), 10 mg singulair (leukotriene blocker), 2 doses of Zantac per day (H2 blocker), if I can tolerate it 2 doses of Zyrtec per day (H1 blocker) plus take gastrocrom again (mast cell inhibiter).

During the cashew episode I started having a really bad reaction about 20 minutes after I ate two cashews. I started hiving big time, I felt faint and dizzy (my blood pressure dropping), nauseated, in severe abdominal pain, and then the agioedema started in the throat and the allergic asthma. I self treated with 50 mg benedryl and 25 mg phenergan. I should have used the epipens, and Dr. Calm agrees with that assessment. He says never hesitate to use the epipens, but I cringe because they certainly hurt!!!

Hoping for a productive weekend. Hope you all are having a good weekend also!

Got My Tiara Serviced

2011-04-29T00:07:00.000-05:00

Now Where's My Invite??

No invitation to the royal wedding even though I am absolutely positively certain (as far as I could possibly be from cadging other people's research on Ancestry.com) I have royal blood, even if it is diluted by about four or five hundred years of peasant DNA. I've got my imaginary tiara all polished up and shiny just for the occasion, I am very sad I was not invited but I would have had to decline anyway because I have yet another doctor appointment tomorrow.

I saw Dr. Pepper today, and good news - no UTI on the urinalysis dip stick test. Bad news - he can't tell if I have a kidney infection even tho I am running a fever. He decided to poke me in The Belly. Not such a good thing for me. Now I am having periods of great pain, spasms from my picky pancreas, and spasms from my right kidney and ureter. I asked him not to poke but he wasn't listening or was just going to do it anyway. I would like him to sit for hours in this kind of hurt (even with a pain patch on) just because some decided to feel his liver. The Xray of my kidneys didn't show any stones still there, so it will take awhile for me to build some up again. WooHoo!!! Not so good news, he wants to an IVP next Tuesday to check the plumbing to make sure there are no obstructions and maybe see a reason for the fever. Sometimes soft tissue problems are hard to see on CT's and Xrays (and I can't do MRI's because of my occipital stimulator implant).

I had hives when I had an IVP in the 1990's because of kidney issues (which were really because the growing cancer in my uterus was pulling down on my right kidney). Contrast is injected in order to visualize the flow of urine. It was the first time I had a reaction to contrast media. Now I have anaphylactic reactions even to minute amounts of contrast media. Dr. Pepper ordered a pre-treatment medication protocol for me (generally prednisone and benedryl) but I am not sure if I should move forward with the scheduled test.

I am about ready to chicken out of the test. The pain and swelling and breathing problems that come from having an anaphylactic reaction are very scary. The last one I had during a MRI no one was there to treat the reaction and I had to drive myself to the urgent care a couple of blocks away, while my blood pressure was dropping and my breathing got very raspy. I managed to get myself into urgent care, and walked up to the desk and whispered (because my vocal cords were swelling) that this was an emergency reaction. I am sure the beautiful outcrop of large red hives all over my face made me quite the sight. They had me back in seconds giving me epinephrine. I now carry my epipens with me even to healthcare appointments because I could have died in the time it took me to get to my car, start it, drive 2 blocks, park it and walk into the urgent care. Just reinforced my lack of faith in the competency of local medical facilities.

I see Dr. Calm my immunologist tomorrow. I hope he can give me some guidance on the wisdom of avoiding the IVP or the efficacy of the pre-medication pack. I am hiving a great deal still, and definitely don't want to make it worse.

My sister and I were commiserating about how hard it is to arrange appointments, work with co-pays and deductibles, and just get responsible followup care. I feel that my health management is pretty much up to me to keep track of all of this, and I just get tired of trying. I'm thinking give me a $10.00 prescription of antibiotics and I wouldn't need a test at all.

Adding a nice pipe organ rendering of Felix Mendelssohn's Wedding March to fend off my royal wedding blues. However, the way I am feeling I may be up in the wee hours of this morning so maybe I will watch. Hoping you all have a Royally good time tomorrow and don't get too bored with all the coverage.

Yodarific Day

2011-04-27T23:59:00.001-05:00

How Wizened I Am

My boss The Big Guy nicknamed me Yoda on a conference call with a client a few weeks ago. I guess I have become the mysterious guru who comes and goes on a whim to whip out some knowledge on the younglings every once in a while. I certainly hope its not because I have hair growing out of my ears. As I get older I am getting more drawn up and cane dependent every day, making me even shorter and dumpier. I am going to have to start talking like Yoda now - croaking out a few words and then going Hmmmmmmm. That can only make me seem wiser to uninitiated!

Went into work today just to sit in on a conference call to a new client. They are super nice, and actually recognized my WooHoo over the phone! Since I have a voice (unlike Yoda) that can call hogs three hollers over it is not surprising. Hmmmmmmmmmm, yes??

The rains have been torrential here, with lakes overflowing and rivers flooding. Here it has been ants invading the house as their outside environment floods. I remembered a trick I picked up on PBS - flour kills ants or drives them away. We had hundreds and hundreds of ants trailing across the house. A judicious use of all purpose flour along their paths and ants disappeared. Disappearing ants, good, yes??? Hmmmmmmmm.

I see Dr. Pepper my urologist tomorrow, have been sick for a week now, pretty sure it's not the flu, think it an infection left over from the last Kidney Stone. Big Sigh...any more it's harder to pry an antibiotic out of a doctor than it is getting a pain pill. Too many antibiotic resistant infections rolling around, yes?? Hmmmmmmm. Ick.

I am stalling on the decision to try for disability. I keep thinking I will be getting better one of these days. I am still hoping I will get some blood test results back from Dr. House, although all I know so far is that I don't have a problem with my cryoglobulins (part of the blood affected by cold). I think, if I just work the perfect number of hours, maybe I can just get my body working at maximum capacity. Maybe I need more of the Force to levitate myself around....Hmmmmmmmmmm.

At least I have found my ideal theme song to play whenever I enter a room!!!

Fatigue Time with Big Nose Winny

2011-04-27T00:14:00.001-05:00

Hives Go Away!

My crop circle of hives/freckles on my nose is very shiney and noticable today. I feel like the end of my nose is HUGE. I am extremely tired, extremely sad, extremely irritated, extremely itchy, extremely ouchy. I want to go to bed, but I can't sleep. What's worse I forgot to fill my pain medication (duragesice patch 25 mcg/hr) before coming home and I won't be able to purchase the refills until tomorrow morning.

I will try and take some benedryl soon and see if it does double duty as a sleep inducer and as a hive reducer. More hives are popping up as I am typing. It's been that kind of week/month/year for me.

My pain is increasing as the medication slowly leaves my system. The Belly AND The Legs AND The Headache. Hoping some of the other meds take part of the load. I have too much to do tomorrow to worry about how bad I will be hurting. Just hoping I won't have physical withdrawal. On top of this I am running a fever and am nauseated, so feel very sick all over. Blech!

An interesting day at work, a frustrating and upsetting day otherwise. Hoping my spirit bounces back as I have excised as many outside irritants out of my life as I can today. I am trying to simplify what I can and block out what I can't tolerate and get down to where I only have to worry about the basics of life. I am hardly able to handle that!

National Infertility Awareness Week

2011-04-26T01:25:00.000-05:00

More Common Than I Knew

Thank you to my friend Jeanne who posted about National Infertility Awareness Week at her blog Chronic Healing. I linked to the organization sponsoring this event RESOLVE, The National Infertility Association (http://www.resolve.org/) and I found the page about infertility myths especially enlightening. I know a couple that has struggled for years trying to have children, and know the heartbreak and sadness that has resulted. I worry that I may have made some inadvertent comment that added to their burden.

This is a silent and sometimes stigmatizing disease that can cause heartbreak in ways I can't imagine. Sometimes there are no quick and easy scientific answers to what is happening, and that only extends the anguish. My favorite myth that was busted was "Infertility is NOT a disease":

Yes, it is. According to the dictionary, a disease is a “disordered or incorrectly functioning organ, part, structure, or system of the body”. Infertility in either the male or female partner is in fact directly due to some malfunction in the body, whether it be hormonal or structural.

Here is a link to the page with partnered blog submissions. I am reading as many as I can.

I have modified my Maslow's Hierarchy of Needs photo with the symbol for this week because I think family and children have to rank pretty high on that hierarchy. I am including a second quote from the website concerning the "hidden" emotions of infertility:

Infertility is a major life crisis for 1 in 8 couples. For these women and men fighting the disease of infertility, the infertility experience involves many hidden losses for the individuals, their loved ones and society as a whole, including:

•Loss of the pregnancy and the birth experience;
•Loss of a genetic legacy and loss of future contributing citizens to the next generation;
•Loss of the parenting experience;
•Loss of a grandparent relationship;
•Low feelings of self-worth;
•Loss of stability in family and personal relationships;
•Loss of work productivity; and
•Loss of a sense of spirituality and sense of hope for the future.

Because infertility often involves major personal life issues and decisions, it is often experienced as a private matter and is not ordinarily discussed in public forums. The personal nature of the infertility experience contributes to the failure of the public, politicians, healthcare professionals and the media to recognize infertility as a disease. This causes a lack of sound knowledge and available resources about infertility.

Hoping that society and science converge to help solve infertility issues. I know a few people that have successfully gone through in vitro fertilization, but the cost is high, often not covered by insurance, and this does not solve the problems of all infertile couples. Besides the inability to have children, there are other health issues that go along with being infertile. Many gynecological cancers (such as the cancer I had - endometrial cancer) are more prevalent in nulliparous women. Multiple miscarriages cause hormonal fluctuations that can cause brain chemical depression in addition to situational depression. Male problems with fertility can result from a variety of issues and I am sure carry their own health risks.

If you know someone who has experienced the saddness of infertility, think of them this week and spread awareness of this invisible disease.

Buffalo Herd Skating = Happiness?

2011-04-24T23:18:00.001-05:00

Knuckle Down Buckle Down and Do It

My sister reminded me today of an old Roger Miller song, Can't Rollerskate in a Buffalo Herd, we used to sing and I'm thinking that's my answer. Been in the dumps lately, can't seem to climb out....maybe all I've got to do is Knuckle Down, Buckle Down, and Do It, Do It, Do It to get my happy back.

Traveled a few days last week to a new client. Love the interaction, traveled with a great crew, but I did a dumb thing. I forgot my cane BLING. I left it setting on the edge of the table in the sunroom. Legs don't fail me now I was thinking. I could have gotten myself a new cane on the way but I thought - I will be sitting down most of the time, I won't need it. Wrong! It's been payback time since Thursday night. I couldn't even safely drive to work Friday, my feet wouldn't push against the brake pedals well enough to stop. They have been in spasms and hurting ever since.

The Legs were functional for the most part during the trip. I was able to tip myself up on the feet and once I got tromping The Legs got with the program.  Late at night and these last few days The Legs got really upset with me. Oh. My. God. Wish I had an off switch. I found some lidoderm patches I had packed in this luggage from a couple of years ago when my occipital stimulator got installed (hadn't used this particular piece of luggage for quite a while!!). I used a couple and they helped some of the cramping in my calves, so I may ask my PCP Monday if he could prescribe these for me to try. I'd like to exhaust all avenues before trying to increase pain medication again and I don't think pain meds will help the cramping muscle problems anyway. Sigh.

Last weekend a friend came over and we went to Sonic and laughed and talked and had a great time during the 50% off drink special - I had a strawberry limeade - my favorite. I needed some time to be a person instead of a caretaker for awhile and just to listen to her talk about her daughter and her grandbabies was great. Her oldest grandbaby is in high school now!!! I remember when he was born. Big Sigh!!

The cleaning rampage is continuing but at a slower pace. Thank heaven! Must have been a full moon or something to put me over the edge. For me, when I am upset I quit eating and I want to clean everything. If you saw me and my house, you would know I am seldom upset!! Ha! So maybe cleaning was a way to metaphorically clean house upstairs in my brain too.

Maybe all the cleaning and the travel has been too much exercise for The Headache. I have had to up the voltage and change the programs in my occipital stimulator quite a few times this week.   Perhaps it is the horrid wet windy weather? Just wish it would behave while The Legs are dancing in pain. The Belly has been in a fix too, I think it is because I ate some "fry bread" vegetarian taco's at the client's cafeteria last week. Delicious but way way way too much fat!! Their chef was so kind when she found out I had a mammalian meat allergy tho. She had actually heard of it, so woohoo!!!

I am waiting for my blood test results from Dr. House in St. Louis. I left a message last week, but was gone most of the week so I don't know if he tried to catch me at home or not. I am just guessing since I have not heard from them that my test results were normal. Generally in health care they don't waste time giving you bad news, but are in no hurry at all to give you good news.

This next week I have at least 3 or 4 doctor appointments. I see my PCP about The Legs tomorrow, and a followup on the kidney stones. I have been running a pretty good sized fever and have been off antibiotics for about five days so suspect I still have an infection. The nerve damage in my pelvic area is so bad I cannot tell if I have a bladder infection until I am throwing up and have terrible back pain, so it is difficult for me to know what is causing the fevers. I see Dr. Calm (my immunologist) for a routine followup, and since The Hives have been especially vile lately I will see if he recommends anything more than I am doing. I would like to have Dr. House's results before that appointment in case something immunological popped up. I also see my urologist, Dr. Pepper, next week for a specialist followup for the kidney stones.   Since the stones didn't move through very well this time the ER doc I saw after the infection set in suggested I see my specialist. Big Sigh Again.

I am waiting to hear back from Dr. House before really deciding about retiring because of disability. I guess I am keeping some obscure hope alive that something might be wrong with The Legs that I can fix. I want a full array of information before I try to make a life changing decision.

I will try and reach for my happiness again this week. I feel defeated, withdrawn, overwhelmed with my own issues and with handling other people's issues in my home. I need to strap on my roller skates and get out there with the buffaloes and go for it, no matter what the song says. I might just succeed!!!

The Feet Curl

2011-04-17T03:03:00.000-05:00

The Legs Revolt

Today was one of those days when you start doing something, and later you say "I should have know what would happen!". It started out with a few swipes to clean up a dirty doorknob, then the door looked dingy, then I fixed the fingerprints on the light switch and I noticed the wall needed to be washed, and now its 2 am I have the curtains down in the living room, the cushions stripped of their covers on the sectional couch and the covers in the dryer, and I have rehung and rearranged all the pictures on the walls, and still need to move all the furniture to vacuum underneath.

Why did I start? I know what I do - one thing is clean and nice and everything next to it now looks dingy and in needed of sprucing up - then I can't stop! Hours later and the room is completely topsy turvy. I also cleaned the cabinets and walls in the pantry because I went to get some paper towels and there was a smudge on the pantry cabinet and....well, you know the story by now.

The Legs are truly pitching a fit. My feet started cramping at about nine this evening. Five hours later, they are still cramping. I tried eating a banana for potassium, I tried drinking more fluids, I have my feet right now on a heating pad - nothing has helped. I suspect the nerves in The Legs have had it - no more cooperation. I have very little strength in my legs tonight as I made the mistake of climbing on a ladder to get the curtains down and to hang pictures up. For some reason that just starts the pain wagon rolling. I have had charley horses in my calves and my arches and the top of my feet now for hours. Hoping at some point this will go away. Hoping that point is soon!!!

With the pain patch on, I don't want to take any more pain killers. The Jimmy Legs don't want to stay still and my feet feel like the Wicked Witch of the East's feet in the Wizard of Oz must have. They curled up and shriveled away after the ruby slippers popped up on Dorothy's feet. Hmm, maybe some Ruby Slippers would help??? I did have some red tennis shoes, but I don't think they qualify. Sigh.

I Hates Kidney Stones

2011-04-14T23:56:00.000-05:00

Rock-a-Bye Bladder

Last week, thought I was done with kidney stone #2 for 2011. Ha! Of course, life could not be so easy. I was able to get to work Monday - yeah!!! Tuesday, I had to go to my PCP's office because I was in serious trouble from KS#2. I felt dehydrated even though I was drinking lots of liquids, and very little of the liquids was leaving my body. Signs of a very bad UTI and probably kidney infection, most probably from KS#2 cutting its way out. That explained that!!! I was nauseated, dizzy, and in pain. Stinking kidney stone!

I got my antibiotics, and got to work Wednesday. WooHoo!!! Twice in one week!!! Oh, nooooo - KS#2 pain again in the night - no sleep so I just went back into work earlier on Thursday. Got sicker and sicker and couldn't go to the bathroom at all. Around 12:30 I called it quits and went to the emergency room. I got fluids to help push whatever I needed to push out of my body. The antibiotic seemed to be killing the bacteria they found on Tuesday, so no change needed there. After three hours on an IV I was able to FINALLY go potty. I wanted to dance and clap my hands and sing the big girl goes to potty song, but I held back my glee. I did pass "debris" that was a result of KS#2's descent out of my kidney so hopefully this will be the end of that boulder.

Pain and discomfort tonight but nothing like last night. I'm going to try to sleep despite the thunderstorm overhead. Lightening hit my neighbor's transformer and he has no electricity, but luckily for me ours came right back on after flashing off after the lightening strike. Hoping to make it to work tomorrow again.

Going to a client's next week, taking a back seat while the new guy does the talking. This is difficult for me - I'm quite the talker, but I am so glad to be training someone to do this I will gladly zip it!!! I like traveling with the boss who will be going with us. This is someone I admire greatly. I worry that she is getting as burned out with all the travel and installation work as I am. It is just very hard to maintain a balance between home life and work life when you go from one intense implementation to the next.

Thinking of bosses, the Big Guy made me cry this week because he just said he was worried about my health and had I thought about just going on disability. He said he would be willing to work with me with whatever I decided. I had such a bad few weeks, with The Problem at home, my Mom, and myself and KS#2 and poopy pants and stress stress stress that the kindness just overwhelmed me. I can handle tough times much better than I can handle kindness and thoughtful consideration.

Have I ever said I love the company I work for and my job?? That even makes me sadder to think I really can't hardly keep going onward. I am going to get them through this next installation and reassess. I talked it over with my PCP this week and he said it should be a no-brainer for social security disability determination but having been a federal employee years ago I understand "No-brainer" might be more description of the process than I wish. I definitely would have bad enough luck to anger someone and make them use their "clerkly powers" against me. Sigh. I guess I shouldn't go buying trouble eh??

Health care is the conundrum I cannot figure out if I do decide to try for disability. I will make enough that the Medicaid spend down (if I qualify for Medicaid) would be so high as to be useless. I will just have to think on this. It is one of the main reasons I have not retired yet. Big sigh....

The Headache that Never Stops

2011-04-10T14:55:00.000-05:00

Hemicrania Continua: Continually Annoying

I have a headache condition called hemicrania continua. It is with me 24/7 and has been my constant companion since December 2007. The pain levels for this type of primary headache can vary from annoying to excruciating. Unfortunately mine decided right away to be excruciating. For most of us once it starts it never ever goes away, not one second of one day. Only one medicaton has found to be really effective. If you can't take THAT medicine there are really very few other treatments that work.

After struggling for several years with excruciating levels of headache agony I can say that my pain is mostly under control. Between having an experimental occipital stimulator installed, and now having to use fentanyl pain patches and neurontin for neuropathic pain, the hemicrania continua pain has receded. It is still there, but just at a faint memory of what it can be. Occassionally it decides to wake up and let me know it still can cause a great deal of pain. On those days I remember what life was like before I got an occipital stimulator. Not so good.

Although the pain has mostly gone, the physical symptoms are still occuring at the same frequency they did from the beginning. Inability to sleep, problems with my left eye turning in and dilating, constant nerve pain on the left side of my face, constant nausea (well, I have other reasons for the nausea so that could or could not be The Headache), sensitivity to temperature, light, and sound. The physical feeling of cold that pervades my life is a reminder that The Headache is lurking in the background twisting my brain in directions it shouldn't go.

I say the pain is under control but I can't do much physical activity or the pain still flares after about an hour of effort. I can't take narcotic pain killers of a certain type or the pain returns. I am constantly having to think about how much I have done, how much I have rested. It's a major pain in the patootie.

Since having the breakdown of the stimulator controller last fall, I worry about another stoppage of my technology. The remembrance of bad times past makes present pain free days sweeter but also put a shadow of fear into each day. I wish I could go back to the few headache free years I had post hysterectomy.

I try to remind myself how lucky I am to have gotten into a study, to have gotten the degree of relief I have from The Headache, and to be able to continue with my life. When I grow frustrated with the bits of The Headache that remain, I try to remember that there are people out there suffering a great deal and unable to find relief. I wish wish wish they can find some sort of answer that helps as much as the ones I found.

Finally - Dr. House

2011-04-09T23:12:00.004-05:00

Crisis Management vs. Healthcare Appointment

Life here at my house has been not only hectic but in a tizzy. I have not been blogging, and I have been staying close to home mostly because I had to help manage someone else's serious health issues and my Mom needed me close by. She does not have the coping skills to keep up when events turn sideways quickly. Tonight I have some time to blog because while the crisis is not totally past I know everyone involved is safe and well cared for at this time.

The crisis was an hangover from the prior week, so my week got even better when kidney stone #2 of 2011 decided to pass Tuesday night. I debated about calling an ambulance. The pain (even with the fentanyl patch) was so severe I could not drive, stand or doing anything but squeak icky noises. My Mom was having enough problem coping with the other issues, I just couldn't leave her at home while I went to the ER to get help with KS#2. I rationalized that the ambulance would take 20 minutes to get to my house, the ride would take another 45 minutes, and I wouldn't get any pain relief at the hospital for at least another hour - and by then the stone might have passed. I toughed it out and finally got some liquids down my gullet to help push KS#2 down the path after about five hours of extreme spasms. Not something I would recommend if you didn't have to. Big sigh.

Wednesday I wasn't eating much of anything because of KS#2, but I had a tiny piece of some cashew brittle. I don't eat cashews very often and never cashew brittle but thought maybe the sugar would pick me up and the protein in the cashew would actually digest. I started having an anaphylactic reaction - joints swelling, stomach hurting awfully, hives popping out, itching itching ITCHING. I thought - if I use the Epipen I will have to go to the emergency room, so I took two benedryls and a phenergan instead. This did drop the swelling and some of the itching and stomach pain but I had forgotten I am wearing a fentanyl patch for pain. I got a little scared because it did become difficult to breathe. With anaphylaxis it is hard to tell if the problem with breathing is asthma, anaphylactic reaction, or medication problem. I used my rescue inhaler but it didn't help much. I think this was a drug-drug interaction between the benedryl, phenergan and fentanyl. Too much too quickly. I guess next time I will use an epipen. Bigger sigh.

I had my appointment Thursday with Dr. House in St. Louis concerning The Legs and the neuropathic pain and weakness. I had planned on taking Wednesday to drive up to St. Louis (because I fall asleep so badly when I drive it takes me at least a couple more hours to drive this than normal) spend the night, go to my doctor appointment, toodle around St. Louis some, maybe eat some really good Italian food on The Hill, go to Union Station, shop at the Dillard's outlet store - my usual St. Louis jaunt - spend the night again and drive back home Friday. With The Problems at home taking precedence I decided to drive up and back on Thursday. Very Big sigh.

I left at one in the morning. The normal four and a half hour drive took me almost seven hours. I had to keep pulling over to take a nap. Nothing kept me awake. Lately driving at night has gotten me very disoriented. I seem to lose directional sense and depth perception. Just what all the other drivers really needed to have on the road with them. If I had only had the money I would have gotten airplane tickets to St. Louis, and then taxi'd it to Barnes Jewish for the appointment. Ah well, I was very cautious driving and as dawn approached my vision difficulties got better. Sigh yet again.

Fecal incontinence makes traveling a difficult problem. Normally I won't drink very many fluids for two or three days before traveling, and don't drink very much during travel. However passing KS#2 became a priority so I was primed full of fluids. I took extra clothing with me, and was very glad because mid way I had an accident. Since my external sphincter is not as functional as it should be, I just don't have pucker power. As I explained to my colorectal specialist once the poop chute is loaded the payload delivers regardless. I changed clothes twice before my appointment. I was so glad I had brought the extras!!!

My appointment with Dr. House was at 9:30 am, but I got there early and was seen much earlier. I had been to the Center for Advanced Medicine for Washington University Medical School, and Barnes Jewish Hospital before. I saw Dr. Bellyfixer about the digestive issues I had from the radiation therapy overexposure in 2004. He was quite helpful, and I found Dr. House and his team just as thorough and helpful. Wash U definitely Rocks!!!

A young neurologist took my history and did a physical exam. He did notice my permanent hive on my nose - I told him it was my Rudolph the Red Nosed Reindeer spot. I guess it helps that I had gotten some sun, because that makes it shine more perfectly beautiful. I warned him I already had several rare diseases, and if I got one more rare disease I might not believe it. Ha!! I was so tired I am not sure if I made very good sense. Good lord I had to remember who was president and do math and spell things backwards! This is a woman who just pooped her pants twice in the last 7 hours. I don't know if I was competent to do anything that required brain power... When he got out the large safety pin to poke me with, I almost pooped my pants again. Ouch!

I had brought copies of xrays/mri's/ct scans that Young Dr. Kildare had said Dr. House would need. Nope - didn't need any of them because I don't have a physical issue with my spine or hips. I brought copies of Dr. Kildare's notes, nope they didn't need any of them. They were glad that I had brought the immunology labs and some DNA testing I had done (I thought of that on my very own - take THAT Dr. Kildare!!!). Dr. House and the young neurologist consulted with each other out in the hallway, then Dr. House came in and introduced himself. Very nice, not like the TV Dr. House at all. No arrogance, no immediate attempt to blame me for my problems.

Dr. House repeated part of the physical neurological exam. Thank heavens - no current event quiz, spelling bee or math problems. I was halfway expecting him to make them more difficult - there is a train traveling east at 40 mph etc. etc. etc. Whew!!! We discussed why Dr. Kildare had sent me there, and his conclusion that I had small fiber neuropathy. We also discussed my problems with my bowels, bladder, pelvic pain, and nerve pain and that I associate the onset with my vaginal brachytherapy treatments in 2004. Dr. House said he was going to repeat the EMG and nerve conduction tests using their techniques before he decided I had small fiber neuropathy. If the tests were negative, then I might need to have a nerve biopsy. He said their techniques were generally more sensitive than the ones I had in Springfield by Dr. Welby.

I got my blood test orders and the nerve test orders and was sent directly to the EMG lab. The lady doing most of the test took her time and did much more extensive testing and also warmed up my foot saying if it was cold it could distort the test. A doctor came in after she was done and read the results of her tests. It showed a very subtle difference between the speed of the nerves in my arms verses the speed of the nerves in my legs. He said that he would probably say I had large fiber neuropathy, but did the needle part of the test which was normal first. He went to discuss his findings with Dr. House.

The lab got me admitted to their services and I gave about a gallon of blood for some tests for other causes of neuropathy. Not sure what they were but Dr. House said it would take a couple of weeks to get the results back so they may have to ship some of it off.

I went back to Dr. House's office to see if I needed a nerve biopsy. He said that they had all concluded that I had large fiber neuropathy (which Dr. Welby had not detected). I asked the cause and he did not say that it was diabetes, but he did say he just couldn't prove it was the radiation. I asked him about the weakness and the pain increasing with activity and he said that was normal with this type of neuropathy. I asked about physical therapy, would it benefit me, and he said probably not. I asked about medication and he said I was getting what he would have recommended, but that I might double the fentanyl for more adequate pain relief. He said I should call back in a couple of weeks if I didn't hear from them about the blood tests. He said I might have small fiber neuropathy also but the majority of The Leg issues are from the large fiber neuropathy. Huge sigh.

I got out at about noon, which is fantastic with everything that I did, and started home. I got home about 6 PM and ended up going to a hospital and leaving there at about midnight because of The Problem. By the time I got home I was so exhausted I was falling asleep standing up. I slept very late Friday, and a lot of the day today. Right now I am so tired I am falling asleep writing this - you probably can tell!!! Triple huge sigh.

I go back to see Dr. House in six months. I see Dr. Kildare in a couple of months. I know that I have large fiber neuropathy, which is more consistent with radiation induced plexopathy but can also be from a lot of different things as it is the most common kind of neuropathy. I also know that I do not feel cold the same in both of my feet. One does not feel cold the same as the other. Hoping the warm foot can teach the rest of my body how to feel warm instead of cold!! I know there is not a lot that can be done other than what I am already doing for the pain. Maybe a reason for the problem will come up when the blood test results are in.

The Headache behaved pretty well for all the activity. The Legs and the pelvic pain and KS#2, not so well. My mind is the same jumble it was before The Problem hit, and all the travel, and all the walking. Hoping getting more rest tomorrow will help. If this post is a little goofy, that is because I am majorly goofy tonight. Gonna try to get some sleep. Biggest Sigh Ever!!!

A Subject Dear to My Heart

2011-04-06T08:55:00.001-05:00

The Physics of Clown Cars Explained

The scientific engineering writers over at Car And Driver have been working overtime figuring out the physics of clown cars, a subject I ponder over at odd moments. Anything to occupy my mind right now as sucky as things are is a welcome diversion. Now that I understand the theory behind clown car-age stuffing, perhaps my dream of running away and joining the circus is not so far from reality. I think I need to decrease my mass somewhat to ensure I would not be crowding my fellow clowns in stuffage.

I quote from the article The Physics of: Clown Cars:

Unfortunately, and contrary to accepted folklore, clowns need to breathe. Discomfort is to be anticipated, but General Survivability demands some consideration of physiological needs. Moreover, the overriding concern of anyone packing clowns into a car must be that the result is Maximum Clown Hilarity. Not only must the clown car dispense clowns, it must also disgorge props such as expandable luggage, beach balls, and two-person giraffe outfits with spring-loaded necks.

Maximum Clown Hilarity - now that is what I need to seeking from life!!! Less General Survivability but More MCH!!!

In the video clip of a modern variation of the clown car gag from the Ringling Brothers Circus, I feel that I look like Cat Women, but feel like the Flash - I think I need the big jug of energy drink he has! And my fat feet look like his today!!! - maybe I wouldn't need much of a costume!

.

Older

2011-04-01T01:00:00.000-05:00

Ready To Trade in My Legs

My birthday was this week. I am older, but am not getting any wiser. I keep getting myself into the same painful spots I have already been in. Short of quitting walking, quitting working, and quitting driving I don't know how to stop overdoing it. Oh well....

Took my Mom to the vascular surgeon yesterday. Great news, her abdmonial aortic aneurysm is not at a danger point yet, and per the vascular surgeon she will need to come in every year for an ultrasound and a checkup. He said as slowly as it is growing, she may never need surgery. He said for aneuryisms less than 5 cm wide (hers is 4.5 cm wide) watchful waiting is the only treatment. My mother who had been building castles of disaster in the air (a lifelong habit) was very relieved, as I was, to hear this. WooHoo!!! Her aneuryism is right where the abdominal aorta turns into the left and right arteries that go down the legs, so it was lower than I thought it was.

I have had a lot of pain today, but I soldiered on and got Mom to where she needed to go. Hoping April is going to be the month this all turns around and everything is better. The fatigue is very bad, and driving is very hard to do without pulling over every so many miles and napping. I feel it will be a very long drive to St. Louis next week. Sigh....

I am going to try to work tomorrow. I have lots to do and not much time to do it in. Arriving at work is going to depend on how much I aggravated The Legs taking Mom to the doctor. Hoping I recover while I sleep!

Sad Clown Kind Of Day

2011-03-29T22:51:00.000-05:00

Wishing I Could Cheer Up

Not a good day for me. I am overwhelmed with pelvic pain and leg pain. I actually could see today where there might be an end to me being able to walk or drive. I am at the edge of where I cannot handle it, physically or emotionally. The nerve pain in my feet is curling my toes and all I can do right now is hunker down and get through it.

The increase in pain medication has been good in a way and bad in others. The background all the time pain is less, and some of the heavier duty pain has decreased - this is good!!! I am doing more with less pain at the time I am doing it. This is good and this is bad. My pain stores get overloaded later and now I'm back where it is almost impossible for me to use my feet when driving. Pushing on the brake pedal is excruciating. The pain is up the legs and in my pelvic region and then up inside my lower abdomen. Using the accelerator is almost as terrible. This is bad. Sigh.

I am not sure how I will get to St. Louis next week to see Dr. House. I guess I will just be tough and get there and somehow get back. I wish I was wealthier because I would catch a plane there and back and at least would not have to drive four hours there and four hours back. I may drive up one day and back another so I can rest frequently. Hoping I don't have some kind of bizarre leg test while I am there that will make them go wonky...it would just be my luck.

I am bummed out, on the verge of tears. I try not to break down because that doesn't help anything, and then I start the pity party, and then when it's all over everything is still the same as it was when it started. I don't know what would become of Mom if I can't keep going, so stopping is not an alternative. I think it is just a convergence of suckiness and sickness and pain all at once. I need to come up with some kind of innovative solution for it all....

I wonder if you can get a kick start for your legs, like on a motorcycle?? I could rev my throttle, get'em spinning and then off I would go!!! Just like Fred Flinstone and that car he powered with his feet! Now I'm feeling happier already. I'll have a Yabbadabbadoo time running all the way to St. Louis!

Way Too Tired

2011-03-29T02:30:00.000-05:00

Wacky Legs Don't Work Right

Very tired today. I took my Mom to see her gallbladder surgeon to be released from her post surgery restrictions and for him to visualize her incisions and say they are healing fine (they were). This only took five minutes. We were scheduled in the morning. I thought we will go get this done, come home, and I will whip into work. Uh uh...was not in the cards today.

We got there ahead of time and waited and waited and waited and waited. I was so tired I fell asleep in the waiting room. Finally we got called back into an exam room. Then we waited and waited and waited for the five minute exam. The surgeon must have had emergency surgery or something that morning because he was running WAY late. If they had just told us, go out get a snack, come back around one and he'll see you then I would not have been so aggravated, but since I was so sleepy aggravated took way too much energy. We got out of exam room limbo around one thirty in the afternoon. Augh!!!

Then I took Mom shopping for a bath chair. I had been having a hard time getting Mom to take showers lately. She has had several small strokes, and has COPD, and apparently has been having panic attacks in the shower and not telling me. I happened to be making her bed while she took a shower last night and heard her crying and hyperventilating in the shower. I went in and put a chair in the shower for her to sit in because she was shaking so much and helped her finish washing her hair, etc., and got her dried off with a towel. She kept saying she couldn't breathe, but she was hyperventilating because she was panicking. I sat and had a long long talk with her about how she needed to let me know if she was frightened by things like showers or the dark or doctors.

She had not realized she was having anxiety attacks - she thought the shower was exhausting her and taking her breath away. I told her that we would get a bath chair with a back and instead of having showers in a claustrophobically small corner shower, she could sit in the bathtub in the other bathroom and use the hand held shower. I told her I would schedule which days we would do this, and I would blow dry her hair for her if she was too tired to do her hair afterwards. I told her any steam would dissipate out in the bathroom not like in an enclosed shower stall. Hoping this will help with the panic.

I drove Mom to the doctor, I walked into the clinic and back with her, and we strolled around Walgreens and CVS pharmacy before finding the ideal bath chair. Then we drove home. It was four o-clock in the afternoon by the time I got home. No work today. Big Sigh. Mom did like the candy aisle at Walgreens so now we have a big assortment of her favorite candies. She is such a little lady she could eat candy all day with her regular meals and the extra calories could only help!

I am finding even my cane BLING is not helping on walking expeditions. I spent my evening on the couch in extreme pain in the pelvic area, lower back, and legs. My feet started cramping and then my legs. I ate some oranges thinking maybe I am low on potassium, but it didn't seem to help the muscle cramps, so I am guessing it's not low potassium. Sigh

I need to build some endurance so I drive to work with less pain. The increased dosage of fentanyl (25 mcg/hr) is helping with the constant pain and some of the break through pain, but it does nothing for the type of pain I had this evening (and am still having). Maybe Dr. House will figure it out in April?? I can only hope.

Its 2 am and the pain is still bad in The Legs. The Headache decided to try to wake up this evening also - probably due to increased walking also. I hope Mom is not too tired or in too much pain. She took a nap and then got up for a while and went back to bed at her usual time of 9:00. I hope to get to work tomorrow, I have things that need fixing and people to help! Just need to get my jump jiving legs to be still and quit hurting and wailing!!!

I am going to try to pace myself per Diana Lee's post at Somebody Heal Me "Pacing: Just Three Things". She suggests just picking three tasks you know you can complete each day so you don't end up over tired or overwhelmed. I think I need to draw up a list of tasks by fatigue level so it will be easier to pick!!!

PS sorry for the advertisement from YouTube if it pops up - its the official video of The Brian Setzer Orchestra perfoming Jump Jive an' Wail and I guess they need the extra income from the ads???

Getting Back to My Old Normal?

2011-03-25T01:08:00.000-05:00

One Crisis Over, Waiting for The Next

I used to say my life was like living in a lower apartment and waiting for the next shoe to drop and my upstairs neighbor had a bigger shoe obsession than Imelda Marcos (I guess you have to be my age to understand THAT joke). One problem gets solved, three more jump up to get in line to be next. Big Sigh!

I haven't been blogging much this month because my Mom has been taking a lot of my attention and energy. She had her gallbladder removed laproscopically a week ago today. Seven huge gallstones were stuck in it AND it had adhered itself by all its edges to her liver because of adhesions from her colon resection a few years ago. One other issue solved by the operation - her constant runny nose seems to be gone. Wonder if gallstones can make your nose run??

Mom is 81 years old, and did not bounce back from this operation very quickly. Her blood pressure was too low for her to receive pain medication for hours after the surgery so she and I stayed the night at the hospital. I told the nurse at about 6:30 PM that I was uncomfortable taking her home in too much pain and so far away from the hospital. Mom was feeling better about one or two in the morning, and I was feeling worse. I am way past the age where I can comfortably sleep on two chairs pushed together! The Legs and The Belly and The Headache were determined to keep me awake, in addition my back needed a right angle in the middle of it to make me fit in those chairs! I stayed with Mom, determined to keep her oriented as to where she was and what was happening, and helping with technology like call lights and cell phones.

We made it home Friday afternoon, and it took Mom until Wednesday morning to feel close to normal again. I finally had to make her walk walk walk to get all her innards to work again. Even with pain medication I am sure it hurt, and I hated to do it, but things were not progressing because she just wanted to sleep and not move. After walking and drinking lots of liquids she started feeling better. Today she was as grumpy as could be, a sure sign of improvement. Unfortunately she was also grumpy Saturday Sunday Monday Tuesday and Wednesday!!! But grumpy is improving both in the frequency of the complaints and the substance of what she is complaining about, so I am glad she is grumpy. Next week we return to see the surgeon and then on another day go to see the vascular surgeon about the aortic aneurysm.

More ill health has hit members of the family since I last wrote. We have absolutely no luck in health related issues. I am wishing the tide is turning and better health and more energy are coming our way!

I saw my PCP today, and he is increasing my fentanyl patch from 12 mcg/hr to 25 mcg/hr. This is because I am still having significant pelvic, leg, lower back, and abdominal pain not to mention break through pain from The Headache. I was asked what parts of my body are working OK, and I put my hands at my eyebrow level and said from here up I'm at 100%, everything else is toast. Got a laugh but I really wasn't kidding!

I was able to wander into work today, and actually felt useful. I was able to help several co-workers with some problems and work with a client on what they need to do to set up and bill for new services at their location. Healthcare is never easy. Something you would think is simple is extremely complicated, and something normally complicated in any other type of business is generally almost insurmountably terrible and mixed up with state and federal regulations that are unbelievable.

Other countries do not have this hopelessly convoluted system we have developed here in order to capture cost and get reimbursement for services. I don't think healthcare reform will ever touch this either, as there are entire industries devoted to special areas of healthcare management and reimbursement. I guess its good that my company is very flexible - an advantage to being small, it is very nimble and able to make large changes very quickly. It is one of the things I truly love about how they/we work!

Thinking of work, I am praying that the increased duragesic (fentanyl) dosage will allow me more pain free hours and increased functionality. My PCP said today what I had already figured out - pain relief is not going to change the physical problems like weakness and leg cramps and foot cramps (I didn't know how far my feet could curl downwards until I started having these about a year ago - OUCH!) and inability to stand/walk for long distances or periods of times. Big Sigh again.

I go on April 9th to see Dr. House at Washington University in St. Louis to see if there is any unknown metabolic or other bizarre lurking illness to blame for my leg problems. I told my PCP I am not quite sure what I am going to see Dr. House for because all I can get is bad news or worse news, there is no possiblity left in my mind for good news. Just another shoe dropping from my overhead neighbor to anticipate!

Hoping you have all had good days since I last looked. I will try to get caught up on my reading in the next couple of days - I feel so disconnected. I have just not had the energy or the will to do much in the last week. Hoping for better things next week and the week after!

Digestive Enzymes and Mammalian Meat Allergy

2011-03-16T23:22:00.001-05:00

I'm Ready to Curse in Kangaroo

The research crew in the allergy department at the University of Virginia were so kind to test my digestive enzymes I have prescribed for chronic pancreatitis. They were looking for "a carbohydrate present on meat called galactose-alpha-1,3-galactose, also known as alpha-gal" and they found it. All of the prescription grade FDA approved digestive enzymes are made from pork protein and apparently the manufacturers do not process the alpha-gal out of the protein when creating the enzymes. I sent the researchers the prescription brand I had LESS hives from compared to the other brands. I suspect there would be even higher levels in some of the other brands.

I have tried a couple of different brands of vegetarian digestive enzymes since finding out I had a mammalian meat allergy last fall. Unfortunately for me, the ones I have tried seem to be using some type of herb or plant that is causing hives also. Many herbal remedies contain high salicylate plant products which for a "hiver" like me spell trouble. I guess I will need to keep trying other brands - but since they all have similar reactions I fear they share a common source for the enzyme. Big sigh!

Per the University researchers there is a prescription vegetarian enzyme alternative currently in testing for FDA approval. Knowing how long that can take I guess I shouldn't worry about ever needing a prescription for those pills!

I'm sad about the results on the enzymes because using them did help my pancreatic pain. It also helped me absorb fats and the vitamins that are stored in fats, otherwise I don't digest protein or fat very well. I pray that no one else with this allergy has pancreas issues because this is not good news.

Maybe I can contact the company trialing the vegetarian enzymes for the FDA and see if there is some type of hardship exemption.

The over the counter supplements don't tell me what they are made of nor is there any regulation that insures that the dosage on the label is actually in the pills. I tried ones first that friends said were reliable. I guess I will just need to branch out.

My Mom and I will get up at the crack of dawn to get her ready for her operation day. I am worried about the results as I know she is, but am afraid we will have continued bad results if she does not have her gallbladder removed. Praying for gallbladder goodness tomorrow. She has a very experienced surgeon who took my gallbladder out a few years ago. Hoping for the best possible outcome.

New Health Issue "Big Sigh"

2011-03-15T22:56:00.000-05:00

Just Another Reason to Have Pain

This week I have been really busy. I had "deliverables" I needed to finish for work, so got those done Monday! WooHoo! I spent today working with my Mom, getting her prepared for her presurgery interview and talk with the anesthesiologist. We went over what was going to happen, why the nurse was going to ask questions, when she was going to have the surgery, why she needed the surgery all morning. I had planned to go into work, but was glad I spent the time with her instead.

Mom seemed "with it" and was able to answer the questions from the nurse and the anesthesiologist without much help from me, AND she seems to understand what is going on much better. Whew! I was afraid of a repeat of her last ER visit. She was Stellar today! Hoping that the same will be happening Thursday!

I had a couple of specialist appointments Monday besides going to work. My endocrinology appointment went great - my blood sugar is perfect, my thyroid levels are normal, my vitamin D levels are back up, so no change is needed for a while. WooHoo!!! Then I had my gynecology appointment. Not so woohoo.

Since having a hysterectomy which included removal of my ovaries because of endometrial cancer, I have not taken HRT (hormone replacement therapy). There is debate whether or not HRT increases risk of recurrent cancer or increases risk of other cancers such as breast cancer. I preferred not to incur any extra risk since my luck stinks. In addition to NOT taking any estrogens I also had vaginal high dose rate brachytherapy (which was misfigured and overdosed) so now I am having issues with vaginal atrophy, making pelvic exams even more painful than they have been (and I didn't think that was possible!).

The nurse practitioner I saw this time (my regular doctor was out of office) said that my tissue is very friable (thin skinned and easy to injure) and shows signs of mucosal injury from the radiation and considerable shrinkage. So now in addition to the nerve damage I have tissue damage. This is not an uncommon occurrence among women, especially with postmenopausal women but I'm just tired of every time I see a doctor I seem to find out something new, something not so good. I'm definitely whiny about the whole situation.

The mistake in my radiation dosage has not been good to my body. Maybe this would have happened without the errors but there is no way for me to tell. I have my external anal sphincter partially destroyed by fibrotic changes. My bladder is shrunken, has lower capacity, and nerve damage. I have problems with fecal incontinence and urinary incontinence both due to the tissue damage and the nerve damage. I have constant pelvic pain. I have pain down both my legs that worsens when I stand or walk or use my legs in any fashion. I have non-stop diarrhea and fast motility so food does not digest, and I am on the brink of dehydration most days because I exude too much water through my bowels. I have nonstop bladder infections due to structural problems and nerve issues and I am running out of antibiotics I can take because this has been ongoing for 7 years. I have been told I will need a colostomy at some point. I am on fentanyl pain patches, and at the current dose which allows me to work I still have many many nights where I am up all night in pain. My teeth are falling apart because I have such malabsorption problems. I have other bizarre health issues that I can only wonder if they might have been initiated by the radiation or from the side effects.

Ah well, at least I have some measure of pain control. This is good!!! I am still able to work, but on a much reduced schedule. This is good!!! I am alive and breathing. This is good!!! I am still able to walk. This is good!!! I can still read, write and do arithmetic (after a fashion). This is good!!! I have my family and my pets. This is good!!! I can still use a computer. This is good!!! I have all my various Internet friends. This is good!!! Whew! Now I am off the whiny wagon I feel much better!

Hoping you all have pain free days ahead and no downer news. I am praying my Mom will have a great week and a normal gall bladder operation and will be able to eat chocolate once again! I continue to pray for the poor people in Japan (my co-worker's family members are all safe although they experienced some property damage from the quake). People locally here in Missouri are buying potassium iodide pills like they buy milk and bread before a snow storm. Wacky! That radiation would have to travel a long long way to get here.

March Headache and Migraine Disease Blog Carnival

2011-03-14T01:03:00.117-05:00

Life Hacks: Tweaking Work and Life to Deal with Migraines

Great entries this month on how we live and cope with headache disorders. Diana Lee has helped me gather the entries this month, and had a great suggestion for an addition. Nancy Bonk has asked for a call to action from migraineurs concerning the problems we have getting taken seriously by healthcare professionals. Please read her post Migraines, Stigma, Suicide - Stop! and give this subject serious thought.

Nancy has another great post This is How Migraines Have Tweaked My Life with some hints on how she makes it through each day with debilitating headaches.

A taste of South America spices up Betsy's migraine journey, described in La Migrana! at MigraineJourney. Glad there are those of us who are able to have adventures in different countries! A beautiful photo makes it look warm and sunshiney. Sigh.

Teri Roberts at Putting Our Heads Together has some great info in Migraine Life Hacks: Dealing With Migraines. Terri has some great tips on managing migraine disease and triggers with some extra tips on using technology to leverage your day and some links to extra resources.

While Tweaking Life for Migraines Migrainista has learned to be more flexible and innovative in dealing with migraines and their effect on her life. Kelly at Fly with Hope has a great post about how chronic illness and migraines have changed relationships in her life. I think we can all relate to Friendships Within and Outside of the Chronic Illness Community.

Kathy from Australia gives some great tips on how she is able to get around town using her trusty backpack! I'm thinking I may have to invest in a sturdy backpack and a barometer myself after reading her post Sydney by Backpack and Barometer. Gretchen at There Be Migraines Here has some great analogies in her Life Hacks post. I will never be able to shake up a Coke again without thinking of this post and my head!

Diana Lee at Somebody Heal Me lets us know some easy tricks about looking good in her post Simplify Life with Migraines & Chronic Illness: Beauty. Some very practical ideas and some recommended products that she has found helpful.

More Than a Little Tweaking Required is the entry from Sue at InnerDorothy. Sue lets us know how she manages her pain on a daily basis while still maintaining an active work life. I love her comment "I relegate pain to a low place on my day to day priorities of living" That's putting pain in its place!!!

I write a little about tweaking life and work environments in my post Taming Headaches. Hope you find something useful in my entry!

This has been a great bunch of posts, and a great response to Diana Lee's blog carnival. I found something new to me that I could use in every post. Join Diana Lee in April for the next carnival!

Taming Headaches

2011-03-12T01:48:00.001-06:00

Tweaking Life and Work Environments

I have had severe headaches all my adult life. There were years when I only had a couple of migraine episodes per year and years when I averaged three to five migraines a week. My migraines ceased after I had a hysterectomy but the current headache condition I have (called hemicrania continua) has been with me 24/7 since 2007. I have a few tricks or life modifications that have helped me manage my life with headaches and sometimes mitigate the pain a bit or appease The Headache before it roars into all consuming pain.

Because I am very short and I work in offices and at home on computers at desks not designed for very short people I try to make sure my work environment is ergonomically correct. Putting stress on my arms, shoulders, neck and legs from sitting in a chair that is too high off the floor for my feet to touch or a desk surface I have to reach unnaturally for the keyboard or mouse creates an unhealthy environment for The Headache.

I use some basic guidelines when arranging my workspace. As a rule for persons without bifocal or trifocal glasses your eyes should always be straight across from the top one third of your computer monitor. If you have bifocals or trifocals and you do NOT have to focus on the desk top and back on the screen I suggest getting single vision glasses at the strength you need to see the computer monitor. This way you will not be tipping your head back to see with your higher strength lenses and putting strain on your neck and shoulders. You can also have "computer bifocals" specially made for working with monitors. Instead of having a very small bifocal area ground into the lens where you have to look down through that area to use the magnification these have large bifocal areas with the line for the bifocal almost in the center of the lens. Coated or colored lenses can help if you have light sensitive eyes. Another quick and inexpensive fix for multi focal lens wearers is to put your computer monitor up on a large phone book or monitor riser so you can look through the bifocals without having to hold your head at an uncomfortable angle.

I avoid working in the dark with a computer or even watching television in the dark. Even just a smidgen of low level lighting helps me avoid the high contrast issues I have with a lighted surface floating in darkness. For some reason The Headache becomes very annoyed with extremely high contrast lighted surfaces in a dark environment.

I make sure my feet are not dangling and that I am not slumped in my chair while using a keyboard or computer. I also make sure my hands and forearms are as close to ninety degrees from my body as possible when working at a desk surface, using a mouse, or keyboarding. I also make sure that I keep my hands properly aligned with my keyboard and keep my wrists elevated. In order to keep my feet from dangling I often have to have a step stool or a support for my feet because of my short stature. Even if my chair went closer to the floor then my eyes and arms would not be correctly aligned with the computer, so supporting my feet is much more practical. This reduces body fatigue and stress on the back and arms.

I segment tasks (even tasks like sweeping the floor or doing laundry) so I can work at headache friendly intervals. Exercise is an enormous trigger for The Headache so I have learned that physical exertion in thirty minute segments or less is optimal. My sister is a sweetheart and helps out occasionally so I can get household chores caught up, otherwise it just keeps piling up with me chipping away at it bit by bit. At work I try to arrange my work in segments where I can stop and rest both my body and my eyes.

Fluorescent lighting can be an issue. Sometimes I have had half the fluorescent bulbs removed in a room so the light is less intense. There are covers you can purchase that will selectively filter the light in each fluorescent bulb. There are diffusers that fit in the fluorescent fixtures that focus the light directly downward (task oriented lighting) instead of the most common ones that spread the light throughout the room. Using incandescent lights where possible also reduces the fluorescent glare. Coated lenses or colored glasses can help with this also. Visors help also, creating a shadowed area in the upper area of your face.

My worst problem at work is odor. Food odors from the break room, scented candles, hot laser printer toner, perfume or colognes used by coworkers, soaps in the bathrooms, air fresheners, and even car exhaust fumes going to or from work are big issues. I can block out noise by using ear plugs, but nose plugs are uncomfortable and just not stylish. I avoid the smelliest rooms but in a small office odors carry. I guess it wouldn't be so bad if I wasn't so nauseated most of the time! I use mentholated rubs under my nose sometimes to cover up the other odors but then unfortunately I smell like mentholated rubs. Maybe some reader out there can give me a tip on this! I certainly can use some!

I have been lucky in having employers who were cooperative in creating a headache friendly workspace. Hoping that you can find a trick or two in this post that will assist you in creating a space where your head likes to stay!

Off subject, but worrying about the extended family of a coworker whose mother is from Japan. He said his mom had been trying to reach relatives in Japan to make sure they have not been hurt in the earthquake/tsunami but had been unable to get through. Praying that they are all OK and out of harms way.

Hoping everyone will be having a pain free weekend and a great week next week!

Preoccupied

2011-03-09T23:59:00.002-06:00

My Role as Caretaker

I haven't blogged for several days. It's not my own stinky health (which remains as stinky as always) that is the reason for my silence but my mother's health.

My mother has been having bouts of dizziness, nausea and vomitting going back almost to Thanksgiving. We were pretty sure she had had another stroke at Thanksgiving, but she has also had very sharp pain in her right side. I think she was afraid it was a recurrance of her colon cancer, so she just decided to ignore it. Certain foods she decided she was "allergic" to because they made her sick. I wondered what the problem could be a few weeks ago since she kept saying she was having a headache and then vomitting, but I couldn't get her to go to the emergency room or to her doctor.

Friday night I was up most of the night with her. I was sick myself from The Belly and a flareup of pancreatitis, but hadn't eaten anything all day so I knew it was not something we both had eaten. I tried to get her to go to the emergency room. The pain got better, she threw up, and then finally went to sleep. Similar story Saturday night. Sunday she slept until 2 in the afternoon, and then said she was having difficulty seeing. I finally convinced her to go to the emergency room. I did not go to the closest one because it is a very small hospital with limited imaging equipment. I took her to one she had gone to in the past that had full laboratory and imaging equipment and full time emergency room doctors.

We arrived at the ER and were quickly sent to triage. Her blood pressure was extremely high. She appeared dehydrated (not surprising since I could not get her to drink any liquids for two days) so the nurses immediately put in an IV start kit and drew blood for tests. The doctor saw her within 15 minutes of our arrival, did a physical exam, ordered a bolus of IV fluids, and a gallbladder ultrasound. My mother was extremely tender in the gallbladder region and the nausea and pain had been starting withing 20 minutes of eating.

Her blood pressure and her heart rate dropped during administration of the fluids and she said her vision improved so I am sure dehydration was causing these symptoms. Within an hour of having the gallbladder ultrasound done her doctor came back in and said she had a couple of problems that needed to be taken care of: her gallbladder was full of stones and showed signs of inflammation so it needed to be removed, and she had a medium sized aortic aneurysm that might need to be looked at by a surgeon. He told us he was going to admit her and had talked to a surgeon (whom I knew to be a good general surgeon) and he would come to my mother's room and talk with her the next morning. The doc then left the room.

My mother started getting agitated. Her blood pressure monitor alarm started going off again. She kept saying (like a little kid) "I want to go home to my own bed!". The more people tried to talk to her about how serious this was the more stubborn she got, the more agitated she became, the more paranoid she was, the more hateful she spoke, and the higher her blood pressure went. I talked with her, three different nurses talked with her, the ER doc talked with her twice. She insisted on leaving against medical advice, but the problem I had was that I don't think she even realized what the medical advice really was!

She accused me of conspiring with the nurses to put her "in the number 2" which is the old state mental hospital number two which has been closed for about 20 years. She said I needed to be made inpatient because I needed the surgery not her. She said the doctor was making all the results up. She said she never saw a doctor. She said a doctor told her once never to have surgery ever ever again. She insisted on leaving.

She refused to sign the AMA paperwork because they "wrote" on it, although she couldn't read what was written, understand what was written, nor could she repeat it when it was read to her. She said I had called ahead and arranged a room because they put an IV in her when she was triaged. AUUUUGH!! The doctor told her she could die from these problems, but I don't know if she ever understood what he told her. The staff was all so nice and tried to get her to stay, but she was so upset she was shaking. They finally just witnessed that she had had all her options explained to her, and I took her home.

I was flabbergasted. My mother had been like this when I brought her home from the hospital after her surgery for colon cancer several years ago. She had difficulties with anesthesia and ended up in ICU for a couple of days needing assistance to breathe. She never really reconnected with reality until after she got home a few weeks, which was about a month and a half later. This is more common than most people know, it is called ICU pychosis. It is a temporary break with reality brought on by ill health, tons of medications, drastic interventions like ventilator machines, and a disconnect from everything you know. My mother most certainly had a small stroke at the same time, which I believe heightened the effect. I just never thought about her doing this again!!!

I got Mom home, where my bothers and sister were also upset because she had refused treatment. I said I just didn't know what else to do, the only other thing would have been to leave her there and I just didn't have the heart to do it, even with her accusing me of strange things. I hoped getting her back in a familiar environment might get her calmed down and her blood pressure better. I found out that she had not taken her blood pressure medication for at least the last couple of days - probably due to nausea - but hadn't told anyone. I am monitoring her pill minder now, she has never missed doses like this before.

She slept most of the next day, but agreed to go see her PCP (the same as mine) who is a very nice young doctor on Tuesday. I told her that he could read the tests and give her a second opinion (or first opinion in her mind because she said she never saw a doctor) about whether or not surgery was necessary. Being in familiar surroundings did help, and getting her back on schedule with her blood pressure medication also was a good help.

We went Tuesday to the PCP. Her gallbladder ultrasound must not have been very good, as he got her in to see a surgeon today (Wednesday) and the surgeon said it has to come out. My mother is very passive and not agitated at all about having it out now. Next Thursday the gallbladder will hopefully go bye bye without any scary complications. She sees a vascular surgeon at the end of the month, as apparently the gallbladder was scarier than the aneursym so needed to be taken care of first.

My mom complained today about having to see all these doctors and all the trips (since she has to go in for preoperative testing). I told her if she had gone into the hospital Sunday, she maybe would have been home without a gallbladder already but now we had to go about it this way. I am hoping she will not do the mental "disconnect" again when going in for surgery and presurgery testing. She is oriented to time and place now, so hoping she will remain this way. Maybe they will give her something to keep her calm? Sigh. Concentrating on keeping her well until then. Getting old is not fun.

Friday is the deadline for this month's blog carnival for Headaches and Migraine Disease. I have mine three quarters written, and need to get it posted!!! Looking forward to reading everyone's entries!

March Headache and Migraine Disease Blog Carnival

2011-03-01T21:33:00.000-06:00

Helping Diana Lee Out

I am hosting the March Headache Blog Carnival, giving Diana Lee a rest from Carnival hosting duties. After realizing the amount of spam sent to the blog carnival address, I can see how she needs a rest. Whew! Below a description of March's theme that I hijacked off Diana Lee's website!

The theme of the March 2011 Headache & Migraine Disease Blog Carnival will be "Life Hacks: Tweaking Work & Life to Deal with Migraines." As always, feel free to interpret this topic however you like.

Feel free to post comments or contact me directly to ask any questions you might have. Please spread the word to any migraine or headache, pain or chronic illness bloggers you know and consider posting an announcement on your own blog if you have one.

For more information about the carnival please visit the main carnival page: Headache & Migraine Disease Blog Carnival.

Entries are due by midnight (the end of the day) on Friday, March 11, 2011. The carnival will be published here at No Extended Warranty on Monday, March 14, 2011.

Thank you for your continued support of the Headache and Migraine Disease Blog Carnival!

I want to do Diana Lee justice and hopefully pay it forward for her dedication to educating the public about all aspects of migraine disease. Looking forward to reading some real entries, however I now know of a great number of sites that will educate me to be a nurse over the internet OR get me a job as a judge OR increase my sex drive OR maybe all of the above. WooHoo! Win win!

Too Sleepy

2011-02-28T23:52:00.001-06:00

Driving is Difficult

Went to work today for a half day. Yeah!!! I would have had MORE than four hours work but it took me over two hours to drive my normal 45 minute commute. I would drive a couple of interstate exits, and then I would have to pull off and sleep, then drive a couple more, and then pull off and sleep. Not entirely safe, although I felt I was able to judge the amount of sleepiness (I have had this problem before) and quit driving as soon as sleepy thoughts were crossing my mind. Going home I did not have this problem. Hoping tomorrow will be better.

My mom refuses to go to the doctor and she feels fine today so convincing her is even harder. I give up. I will wait for another time or other symptoms and see if I can get her to go THEN. Arghhh!

We had our weekly television viewing of Antiques Roadshow this evening. I don't know what we find so fascinating about that show, but it is the one television program we all enjoy watching. It is much more interesting to watch it in a group for some reason. We discuss different objects and comment about them like "I don't care how much that is worth, I wouldn't have it in my house" as if we have the type of home where you hang $100,000 paintings over the fireplace.

The duragesic patches are here to stay unless I have some drastic side effect that I can't anticipate. I know that the patch is part of my sleepytime problem. One of my bosses suggested I try working from home using Skype. Hadn't thought of that. Hoping my internet service stays up reliably so I can give this a try. My pain levels are up tonight but that is after three days in a row of increased activity, so bring it on I say! I'm so glad to get out and do something productive today.

Am hoping for two days in a row for getting to work. I'll be WooHoo'ing big time if I get that done tomorrow!

Today is rare disease day, and The Mastocytosis Society put together a really good video of what it means to have a rare disease, particularily Mastocytosis and mast cell disorders. I seem to have more than my share of strange, rare or unusual diseases so I am celebrating today as a good day to be alive!

Migraines in The Elderly

2011-02-28T11:19:00.000-06:00

My Mother

Yesterday evening I had a scare with my mother. She has had numerous mini-strokes so I try to pay attention to little things that might be going wrong. She started feeling really seasick at about 5:30 in the afternoon. I had phenergan she had been prescribed for nausea (she had a bowel resection a couple of years ago for colon cancer) so I gave her one. She couldn't stand the smell of food, and had a terrible headache that seemed to be only on the right hand side of her heada and wanted to go lay down in a dark room. Migraine sufferers, sound familiar?

She threw up despite the phenergan at about 6:30 PM and soon after the headache which had been getting worse and worse dissipated. She was very very sleepy afterward and wanted to go to sleep in a quiet dark room. I checked her two or three times last evening to make sure she had not had another stroke. She seemed OK except for other symptoms of stomach upset, and is up and around this morning, with "sore stomach muscles" from throwing up and a weak all over headache.

I tried to get her to go to an emergency room last night. I tried to get her to see a doctor today, but she is very stubborn and does not want to. I am worried because she has never had migraines that I can remember in my 52 years on this earth. She had some sisters who did but she never had migraines, unless she had them much younger and just never told me. New onset anything in someone her age (going on 81) is not always a happy occurance. I found some articles about migraines in the elderly but worry that it might be something more serious. The progression she had was almost identical to my migraines when I had them, but I am afraid I may just be projecting my experience onto her symptoms.

What do you do with an elderly parent who refuses to go to the doctor, to go to an emergency room, or to urgent care? I am upset and worried, but don't know what to do. I want to bundle her up in my car and just take her but I am afraid she wouldn't even get into the car. Big sigh.

Day 6 Duragesic

2011-02-27T15:03:00.000-06:00

The Patch

I have a picture of the duragesic patch. It is tiny. I have some tegaderm patches I am putting over it to help hold it on, as the first one wanted to pop off (I think because it is so small). I tried also securing the tegaderm ends with some paper tape that is supposed to be hypoallergenic but I had to take it off as I started breaking out everywhere it touched.

It is amazing that this little bitty drug delivery system is helping me so much. It doesn't appear that it could hold enough medication to make a difference. Another benefit for me is this drug bypasses my defective digestive system entirely. I can't throw it up, or have it pass on through without digesting.

I have slept the night through the last couple of nights. I haven't been able to just lay down and sleep since I don't know when. Hoping I can get caught up on my sleep deprivation reservoir and be able to have some stamina again.

The Headache just seems to be ignoring the duragesic medication. It is still marching on with it's worse every three or four days pattern BUT the medication is not making it more severe than it generally is. WooHoo!

The Belly seems to like the pain relief very much. My shortness of breath has stopped, as has my rapid heartbeat. My blood pressure has dropped, not back to it's normal 110/70 but at least out of the stratosphere where strokes happen. My hives are a little better because I am not constantly aggravating them with pain medication they didn't like. The itchiness is there but is much less than it was with dilaudid. So far, the duragesic patch has been a winner.

I still have significant pain (probably why my blood pressure is still not normal) but I have stopped the kind of hurt I could not fight against. I did not have the willpower or strength left to push myself time and time again into the lavapit of pain that physical activity has become.

I am hoping that this relief will continue, and maybe this year I can actually put out flowers and a garden and maybe go swimming a few times. Last year I had dropped even these few pleasurable activities I had left because of pain issues. I hope I can increase hours at work, and dare I say it, travel again?? I had to give up going to church several years ago, and before that I had to give up the nursing home ministry I participated in. I would love to get some of that passion back in my daily life also.

A grey Missouri winter day, not too cold, and not too warm. A good day for trying to do some house work...I hope I will be able to sweep and mop the floors and dust the furniture. Not too much to ask of my body.

Hope you all have a great Sunday and a fantastic next week!

Day 5 Duragesic

2011-02-26T23:03:00.000-06:00

A Wonderful Day

Had a great day today. The pain has been in the background, but I have been able to function much better today than I have in months and months.

I was able to cook lunch, go to the pharmacy, shop for groceries, put up the groceries, cook supper. This doesn't seem like much to most people but to do all those things in succession without having to rest for hours is something I have not been able to do for a long time. I am not even too physically tired tonight.

I wonder how much uncontrolled pain has cost me in energy and functionality over the last few years. I had to get to the almost non-functional point to realize that I needed to treat this seriously. I am almost floating with happiness at being able to function almost at a normal level. WooHoo!!

Hoping you all have a great day, and pain stays away in whatever form it manifests itself in. I am more than a little tired and the neurontin makes me really loopy for a while after taking it since I have been using the duragesic patch, so I hope this post makes sense and my spelling is not too bad.

Things are looking up a little for my family members who were having health issues so I very much appreciate the thoughts and prayers. Someone somewhere must have heard! Many hard days and nights left for them but any improvement in very ill persons is great!!! Hope you all have a beautiful morning tomorrow!

Day 4 Duragesic

2011-02-26T01:16:00.002-06:00

WooHoo!

I have started on my second duragesic patch. I think I am finally becoming physically accustomed to this. Not sure why my eyesight is so problematic but I think it must be related to my very very high blood pressure going down. Most of the day I have suffered from a lack of depth perception. I tried twice to drive, once to the gas station about three miles from home, and it was not a great success. I decided to not put everyone elses' lives in danger by me driving on autopilot 45 miles to work. I think the curbs are thanking me, as I ran up on a couple at the gas station.

I did drive over to my sister's house this evening and we had a pleasant meal and watched a show on television with her and my brother in law. This has been a harrowing week in many ways for our family healthwise and since some of the problems are not mine to share just please keep us in your thoughts and prayers. We all enjoyed an evening where for a few moments we could relax and forget all our problems.

My mother has not been weathering all the stress (not related to me and my multiple issues - these are old hat for us!) well. I was glad to get her out of the house (and yes we took all our house doggies with us to play with my sister's puppy Gracie) to just wind down, have some tea, and chit chat.

With me out of commission much of this week, it seemed like the timing for other problems just stank. I guess there is no good time for bad news but if I was feeling well and mobile I guess I would have felt like I was more capable of helping. My mind has just been floating along most of the week. I think I have been typing some things I am not sure even make sense. Uh Oh, I just realized you might not be able to tell the difference between that and my regular writing!! Sigh.

I do think the duragesic patches are going to be a keeper. I'll let my PCP know Monday as he was concerned because of my uncontrolled pain. It seems to be semi almost (but not quite) controlled now - plus today The Headache went back to sleep instead of getting worse yet again. WooHoo!

Day 3 Duragesic

2011-02-25T00:37:00.001-06:00

Double Vision

I think the pain control has stabilized with the duragesic patch, and I no longer navigate by lurching throughout the house. Today the problem has been double vision. Increase your screen magnification to the max and wear two peir of glasses to sorta see kind of double vision.

The nausea is off and on not very good, but the overall pain levels have gone from an eight to a six, which is huge for me. My PCP wants it down to a four but I don't think I want to try stronger patches just yet. I am thinking that I may be able to increase the neurontin again since the duragesic is slowing my digestion down a bit. I may give it a try this weekend.

I was super emotional yesterday, and almost chipper part of the day today. Rollercoaster emotions from this stuff - not used to mood swings like this. I didn't try to get to work. I spent a good part of the day sleeping again, but the nerve pain woke me up this evening so I am waiting for it to calm down again before I try to go back to sleep. The Belly is hurting too but hoping maybe everything will calm down at once. Sigh.

I'm ready to wake up tomorrow as close to normal as I can get. Tomorrow will be better! WooHoo!

Day 2 Duragesic

2011-02-23T23:10:00.000-06:00

I'm So Dizzy

Did not go to work today - tried driving but my coordination was not good. I did not feel right driving 45 miles when I was having a hard time driving just down the road. Then I slept for several hours, waking up with The Headache hurting quite a bit this evening.

I am quite nauseous. I am not vomitting which is a plus, but wondering if it is the duragesic building up in my system. I tried taking phenergan and a couple of tylenol and changing the programs on my occipital stimulator to help with the nausea and The Headache. The Legs and the pelvic pain is a little better under control which is a plus, but kinda hard this evening to think about eating anything. Glad the pills are staying down!

The shortness of breath is gone, so I guess my PCP was correct - it was from the systemic issues that come from being in severe pain. Just not sure how I am ever going to be able to balance The Headache against pain relief for nerve pain and stomach pain. Wishing life was just a tad bit less complicated.

I will try again tomorrow to get around and get myself to work. Hoping this calms down tonight, the nausea is a little better since taking the phenergan but The Headache is not cooperating. I'm ready for this merrygoround to stop and I can get on with my life.

Day 1 Duragesic

2011-02-22T22:27:00.000-06:00

So far so good

Started my day with no pain meds in my system. I kept my specialist appointment (actually saw their PA [endocrinology])and the meds were in at the pharmacy when I got there after the appointment. The pain was godawfully horrid by then so I was glad to get the patches and relieved they are cheap.

The patches are tiny - about an inch long by a half inch wide. I also bought some tape/tegaderm to hold in it place since you wear it for three days. I took phenergan before putting the patch on my shoulder. I was glad I did because I got a chemical taste in my mouth and some dizzy feeling nausea. As the day went on I noticed these side effects less and less. No vomiting no hives so I am pleased.

The pain relief is not as good as a full dose of the dilaudid but I don't have the side effects either. It seems to take enough of the edge off so I can function. The pain has been so overwhelming that I have had great difficulty getting dressed or moving. The Headache seems to be tolerating it so far, and The Belly has calmed down a bit. Hoping this is the med that does the trick in stomping out the nerve pain.

A secret fear I have is one shared by anyone who has had cancer: what if this is cancer related pain? It seems so awful and unremitting that I find it hard to believe that there is not some dreadful disease process ongoing. I guess I will find out more answers when I see Dr. House in April.

Hoping that tomorrow the patch works as well as it did today. I feel confident I will be able to drive into work. Yeah!!!

New Medication For Pain

2011-02-21T22:51:00.000-06:00

Sinus Tachycardia?

Went to my PCP this afternoon to talk about better pain control and my problems with shortness of breath. My pulse rate was over 120 bpm and my blood pressure was quite elevated. I was not surprised as I did not make it to work today because The Legs and the pelvic pain was terrible. The pain was so bad I could not hardly tolerate driving because I had to push the pedals: I wished I had a car with hand controls.

Per my PCP the shortness of breath is most likely from the elevated heart rate which is aggravated by the elevated blood pressure which all come from elevated pain levels. I told him the problems I am having with dilaudid - primarily hives and extreme nausea, and after three days The Headache wakes up. I had the same problems with oxycontin, oxycodone, hydrocodone, hydrocodeine, and trammadol. He decided we should try Fentanyl time release dermal patches. I told him I don't have good luck with pain killers so please give me the lowest dose possible. He said this will bypass my digestive system, hopefully causing less nausea, and I had taken this drug in ER settings without any hiving so hopefully I will not have any allergic reactions.

The dosage prescribed is 12 mcg/hr which is the lowest dose made. My pharmacy had to special order it probably because most people need HUGE doses. I just want to tip the pain scales in my favor, not drive my brain to la la land, although after a day like today la la land sounds pretty great! I guess I will see what its like after I get the prescription. Apparently each patch lasts three days which is just enough time to know if The Headache is going to object or not.

I told my PCP my goal is to reduce the pain enough that I can function but not in a drugged manner. He said his goal is to get my pain consistently down to about a 4 on a 10 point pain scale (Distressing pain: Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt) from the level eight (utterly horrible) it has been at for a while.

My PCP also asked if I was having weakness. I said I felt weak but I was able to walk. I told him I could not tell if I really was having increased weakness or I was just having aversion to pain. Lately it has been hard to tell. When driving today it really hurt so bad to accelerate the car using the peddles that I couldn't make myself drive for 45 minutes. My willpower is waning or my get up and go has already got up and went without me. Ready for this episode in my life to be OVER.

The Headache is not playing well this evening. I am looking forward to another sleepless night. It is throbbing and thrumming with pain. Maybe the elevated blood pressure has something to do with it. Sigh.

I have a specialist appointment tomorrow I may have to cancel. I don't know if I can drive myself there with the pain the way it is, and I definitely don't know if I should drive anywhere when I try using the fentanyl patch. It is my endocrinologist and I am sure I can reschedule if needed.

With so many narcotics floating around here I am glad I invested in a safe to keep these scheduled narcotics in. Temptation is a situation I don't like subjecting other people to, just leads to disappointment and resentment if someone succumbs.

Bad Weekend

2011-02-21T00:50:00.000-06:00

Blah

Have rested most of the weekend trying to get better. I ended up taking some pain medication last night. I just have no perspective on how bad I am hurting any more. Apparently it was much much more than I thought.

I have become habituated to pain. I have NO pain free days even with medication. Unless I pay attention to physiological signs like tremors, inability to sit still, rapid heartbeat, or high blood pressure the difference between some pain and more pain doesn't seem to matter until I pass the threshold of too much pain. I have cognitive difficulties some days - not sure if it is just The Headache or just too much pain all the time.

I am losing track of the days. I did manage to haul my butt to work Friday and do some prep work for my coworkers who are going traveling next week instead of me. I am so tired right now it is difficult to get up and get dressed. I fall asleep doing things. I am still short of breath and I have started getting night sweats. Not menopause - I got through with that within a year post hysterectomy. I think it is probably just the breathing. The pain meds did help the pain I feel when I breath so that was a good thing.

I slept semi sitting up last night on the couch. That seemed to help as I felt I couldn't breathe laying down. The pain meds helped with the burning sensation I had when exhaling - maybe it wasn't asthma making me feel that way. Chronic pancreatitis can cause pain in the same region.

I'm not taking any pain meds tonight so I can make it to work tomorrow. I am not looking forward to the increased pain levels at all.

I told my boss last week that I fear my body is giving out and I am feeling even more of a sense of urgency in getting my coworkers up to speed. There are somethings I just won't be able to communicate that come from working twenty years in this industry. We have another install coming up this spring so I am wanting to get everyone as up to par as quickly as possible for this. My biggest fear is letting my company down.

I think I am going to file for short term disability again. I actually had the qualifying event late November but I have been hoping I would be better and not need to file. I hope there will be no complications with the paper work.

Sitting here with my little chihuahua buddy Emmitt re Squeaks re Baby WaWa asleep in my lap. He is now three and a half pounds and my vet says he doesn't think Squeaks will get much bigger. I am used to big dogs that grow for a couple of years. I guess chihuahuas only grow for a short while. He likes to sleep a LOT so I guess we are a matched pair.

Hoping that next week finds you all well and hale and hearty. I'm hoping it finds me at work.

Bronchitis Breath

2011-02-18T04:05:00.000-06:00

Gasping for Air

I am now off antibiotics a few days for The Lungs. The bronchial spasms have been gettin worse and worse. Tonight I may sleep sitting up if I sleep at all because I feel very breathless. I feel s tickle in my left lung but have not been able to cough the problem out. If it gets worse tomorrow then I will have to go the emergency room since my doctor is not at the office on Fridays.

Trying to compose a post tonight (or morning) but coherant thought is hard to come by right now. I hope to be able to go to work tomorrow I have way too much to do to be sick.

Lost Day

2011-02-16T23:50:00.000-06:00

Sleeping The Day Away

Yesterday The Headache was very active, so I took benedryl and phenergan. Maybe a touch more than I was able to handle. Today I could not stay awake. It might be because I did not sleep very well due to The Leg pain and pelvic pain (because I did not take any narcotic pain killers yesterday) or it might be that I took too much medication. I took what was a normal amount of medication for me - a total of 50 mg of phenergan for the day and 50 mg of benedryl. Maybe it was a combination of both too little sleep and too much medication??

I have not taken any pain relieving medication today. I have slept most of the day again. I got up at 6 am like I do when I am planning to get to work at a regular time. I fell asleep taking a bath. I got dressed but fell asleep when I sat down to put on my slacks. I sat on the couch to put on my shoes and fell asleep again. I then got my stuff together to go out to the car but thought I need to sit and rest a minute. The next thing I know its NOON. I tried to get awake but I could only go a little ways and then rest and fall asleep again. I gave up and called in.

I am trying to teach and train the new gal and guy as much as possible as quickly as possible. I fear my body just isn't going to keep going no matter how much I want it too. My will power just cannot overcome this any longer. Things like today keep happening that I cannot plan for. It is making me extremely aggravated...if I wasn't so durn sleepy!

Trouble breathing today too. I am off the antibiotics but still using the inhaler. Maybe that's why I was so sleepy? I am still sleepy even now and I have slept and slept and slept. The Headache is still way above normal but much better than yesterday.

Praying for a good night and a great morning tomorrow and a full day of work. I have things to do and this lethargy is in my way. Maybe the sleepiness will put me to sleep tonight because I am hurting quite a bit from The Legs. I could use a great side effect tonight. Yes sirree Bob!

Bad Headache Day No. 2 2011

2011-02-15T22:19:00.000-06:00

My Pain Gauge is Getting Full

This is typical for me. The pelvic and leg pain has been horrid. I had been avoiding straight narcotic pain killers because of the complications from using them - notably the nausea and worsening of The Headache. My blood pressure was going way too high because of the pain. I thought "Stupid you, use the medication you were given" and started using narcotic pain killers regularly, but in teeny tiny doses. I hoped to avoid the unpleasant consequences by taking much smaller amounts. I thought I had succeeded until today.

The Headache has come roaring back today. I have switched up my stimulator programs a few times and will try one more time before bed. I am getting ready to pack The Headache in ice for awhile and see what happens. It is almost a month to the day since my last bad headache day.

I am at an eight (utterly horrible) on my personal pain scale and working my way to excruciatingly unbearable, but hope to avoid the unimaginable unspeakable level. It has been getting worse all day. I am full of antinausea medication but still am nauseated. I have had no pain meds today because I don't want The Headache to wake up completely and pain meds just annoy it. The leg pain is utterly awful. Hot needles are piercing the soles of my feet and in the joints of my feet.

My eyeballs hurt, my head hurts, my teeth hurt, my face hurts. I am able to concentrate in little bits but I can't sit still very well as the hurting makes me want to move. This is a major way that The Headache differs from my old migraines. With a migraine I just wanted to go into a dark room and not move. With The Headache as the pain increases I want to pace, move - do something! If I don't get it stopped I will soon be at the head banging praying to God for it to quit stage. The worst part of The Headache is that the praying to God for it to quit stage lasts for hours and hours and hours and hours.

Off to iceland to fill up my ice pack. If that doesn't work I will try heat. Hoping to avoid an emergency room. Have tried to spell gauge about 15 different ways, a sure way to know the noggin is not in good shape!

On Fire

2011-02-13T23:36:00.002-06:00

Neuropathic Pain
Have tried to rest and recover the last few days. The pelvic and leg pain has been fairly bad. I have been cutting up my dilaudid pills into smaller and smaller sections to see the minimum I can take with the least amount of side effects and will take the pain down to barely tolerable. I had to give up and take it more often today (I figure the dose I am taking each time to be about 0.5 mg) as the pills have not been keeping up with the pain adequately. The lower dose of neurontin just does not seem to be doing much for the pain at all. My lower legs feel like they are on fire this evening.

I am still having to use inhalers for my breathing problems. I have trouble breathing if I walk too fast or go outside even in the warm spell we have had the last couple of days. Still feeling short of breath, but will wait until Wednesday or Thursday to see if I need to go back to the doctor. Hoping to get to work bright and early tomorrow morning. I am soooo ready to get out and do something!

Hoping that the hives the dilaudid gives me won't get worse. I am taking benedryl with the small doses I have been taking (I called the doctor's office first to make sure it was OK) but the itching and hiving continues.

I am having trouble sitting still which I know is from uncontrolled pain and compounded by the benedryl and the itching and the hiving. Instead of shake rattle and roll it is fidget itch and hive. Sigh. Wished I looked so mellow and fine like in the song.

Low Dose Naltrexone

2011-02-12T02:13:00.000-06:00

Wonder Drug? I Wonder. I Wish.

Naltrexone is an opioid antagonist used for treating addiction to alcohol and opiates. The doses used for this type of treatment are around 50 mg once daily. Reason would tell you that something that counteracts opiate pain medication would also be something that does not help pain.

There are some doctors now prescribing this in a very low dose to treat a variety of disorders (off label - meaning it is not the reason this drug has FDA approval). The dose recommended is between 1.5 mg and 4.5 mg per day. The website that touts this drug states that this must be compounded at a compounding pharmacy (where they build the pill from other components in the strength desired) and must be prescribed by a physician. It seems to be fairly inexpensive and at that very low dose hopefully side effects would be minimal.

I learned of it through a discussion group I belong to. One of the ladies who has a very destructive autoimmune disorder is giving low dose naltrexone (LDN) a try. I don't know her success yet with it as I am not sure even how long she has been taking it - maybe just a few months. I looked it up and read about it and am intrigued, though skeptical.

There are anecdotal claims and a few scientific studies that LDN can stop the progression of certain cancers, help with multiple sclerosis mood disorders and pain, help with fibromyalgia pain, stops the inflammation in Crohn's disease, and works to stop the immune response of autoimmune disorders. Instead of working by suppressing the immune system (as prednisone, dexamethasone, prednisolone and cyclosporine do) it seems to work by boosting the immune system.

How does this work to decrease pain? According to the authors of the website low dose naltrexone taken before bedtime produces "a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production." Endorphins are the body's natural opiates - pain killers manufactured by your body. Enkephalin is a specific type of endorphin that is sensitive to certain types of stimuli that might damage your body. Enkephalin is also thought to be part of the cascade that creates an autoimmune response.

Since I rarely am asleep in the middle of the night, I can see how my body might be missing some nature endorphins and enkephalins. Maybe this is what my PCP means when he says lack of sleep creates a build up that increases pain?

In treating cancer some think that in addition to increasing endorphin and enkephalin LDN targets the opioid receptors on certain types of cancers and thus somehow inhibits reproduction. My interest in this is because the type of cancer I had (endometrial cancer) is hard to treat with a recurrence. I am keeping LDN as a treatment possibility in case my cancer ever decides to return. I believe in using conventional treatments, but this would be an option you could take with the conventional treatment.

Do I believe all the hype? Not really. The studies done are just for small cohorts under controlled conditions. Most of the evidence is from patient stories and physician use which of course are not a controlled scientific blind study. The studies seem to all agree there is no harm from taking LDN and that if LDN is taken concurrently with opioids it seems to boost the opioid effect instead of suppressing it. The one study on fibromyalgia said a significant gain of 30% reduction in pain was found. I guess that is another disease where people are not able to have restful sleep! I do find it hard to believe that one drug treats all these disparate diseases with the same mechanism, but that's the logical me talking!

Will I ever try it? Definitely if my cancer returns (knock on wood!) because I won't have anything to lose. If my neuropathic pain and The Legs get worse or The Headache or The Belly pain are not controlled I might give it a whirl. I've tried a bunch of other stuff that didn't work so why not this? Just more money down the drain! After all, I bought HeadOn and applied it directly to my forehead - directly to my forehead - directly to my forehead - in a desperate attempt to quell The Headache!

Below find a link to a blog entry skeptical of most of the claims at the low dose naltrexone website. Some points made agree with my conclusion that there are not enough real scientific studies to sort it out yet.

LDN - Medical Revolution or Psuedoscience?

Articles from peer reviewed journals concerning low dose naltrexone - most of these are for very small studies or a single case.

LDN and Pancreatic Cancer - a case study
DN and IL2 in Metastic Cancer Treatment
LDN and Crohn's Disease
LDN and Multiple Sclerosis 2010 (fairly lukewarm review)
LDN and untreatable solid tumors -2002- a study
LDN and fibromyalgia 2009 study (favorable)

Lean on One Another

2011-02-10T01:19:00.010-06:00

I Murder Hate

Robert Burns (1759–1796). Poems and Songs.

304. Song—I Murder hate

I MURDER hate by flood or field,
Tho’ glory’s name may screen us;
In wars at home I’ll spend my blood—
Life-giving wars of Venus.
The deities that I adore
Are social Peace and Plenty;
I’m better pleas’d to make one more,
Than be the death of twenty.

In illness, I only have energy in my life for what is important. My family, my pets, my friends, my work, my internet family come first. Sometimes my priorites get a little mixed up, but these are generally where my focus and my effort are given.

Hate filled rhetoric is something I don't listen to, I don't read it, I don't spend energy on it. I find it deplorable, sad, and often the sign that an argument has no basis EXCEPT an emotional one. Hate is a powerful emotion and conjures up fear, paranoia, anger and often gives the hater an adrenal rush - a physical high from the "fight or flight" response:

fight-or-flight response, response to an acute threat to survival that is marked by physical changes, including nervous and endocrine changes, that prepare a human or an animal to react or to retreat. The functions of this response were first described in the early 1900s by American neurologist and physiologist Walter Bradford Cannon.

When a threat is perceived, the sympathetic nerve fibres of the autonomic nervous system are activated. This leads to the release of certain hormones from the endocrine system. In physiological terms, a major action of these hormones is to initiate a rapid, generalized response. (http://www.britannica.com/ - Fight or Flight response, 2011)

These primitive responses to perceived threats or stress are born into all of us. Hatemongers use these physiological signals to heighten our reactions to their speech and actions, whether in a negative or positive manner. Some may not be aware that our hind brains and autonomic nervous systems are giving more credence to their thoughts than rationally they are worth, but I am sure that most of the higher profile "shouting heads" we see and hear spouting devisive and corrosive opinions in all types of media are very aware of what they are doing. This goes for both liberal and conservative, religious and secular talk. There are no artificial boundaries for people who use this type of manipulation.

It is a shame that those with the least ability to resist the illogic of the arguments are also those who are more vulnerable both to the emotional overtones and to the fear and the rush that fostering hate gives one. Shame on persons who know they are agitating the unstable among us with fear and hate. Shame on the networks and radio stations and political parties and celebrities that build their reputations climbing over the bones of victims while proclaiming innocence and no intent to incite.

What can we do about stopping this deluge of malintent and misinformation? For one thing, I refuse to give it credence. Arguing back, trying to convince these people they are wrong is just feeding into the "fight" response. Ignoring it entirely is not an option either. This has been done throughout human history and atrocities and genocide have been the result. Education with a forum like this (Love Beats Hate Blogging Event) is a start. Analyzing what you are hearing or seeing, not responding on an emotional level helps. Or we can all do as Robert Burns suggested almost three hundred years ago: concentrate on creating a peaceful society with plenty for all; instead of killing one another, love one another.

In 1972 Bill Withers wrote "Lean on me when you are not strong... for it won't be long until I'm gonna need somebody to lean on". These words ring as true in 2011 as they did then. Let's lean on one another and not tear each other down. Don't waste your energy on hate and negativity. I won't.

Bronchitis Breath

2011-02-09T23:25:00.000-06:00

Feeling A Little Better

I am on day two of antibiotics and inhalers for bronchitis. I still am having quite a bit of difficulty breathing and am extremely short of breath, but it is better than Monday. I did not go into work today, spent most of my time just resting. I get out of breath just walking across the room. It hurts to breathe but that could be The Belly in addition to bronchitis.

It snowed again today, but Saturday it is supposed to be up in the 50's so hoping everything will melt off permanently then. We just don't have this much snow here as a rule. The cold is making the bronchial spasms go crazy when I go outside.

The Legs hurt really bad today because I tried not to take pain medication again. I finally gave up and took a tiny amount of dilaudid again tonight. It did take the edge off the pain. The hives started breaking out worse within fifteen minutes of taking the dilaudid. I am afraid I am becoming sensitized to this, and because it is one of the few major pain killers they use for acute pancreatitis I fear getting that level of pain without being able to take it. I don't know if there is anything left to prescribe that I can take.

The Headache is not happy today either. I fear that the pain medication is making it worse. It is so frustrating because I treat one symptom and two more pop up.

My friend called me that is on the respirator/trach. I was so surpised she could call. She has another infection so is on antibiotics again but she had her speaking tube in and had a much stronger voice. Bless her heart, she called me because she was concerned about my health, since she knew I had been sick and was not going to visit her until I knew I was over whatever I had. Her abdominal wound is almost closed and she has been sitting up and standing with assistance. The extensive decubitus on her backside was surgically debrided and is finally starting to heal. She is feeling stronger but still cannot move her legs by herself or roll over in bed without assistance. I was so happy to hear her voice!!

Tomorrow I will have a blog post to contribute to the "Love Beats Hate" blogging event. Check out all the posts from bloggers all across the world.

Emergency Room Blues

2011-02-08T02:30:00.000-06:00

Ready To Start Feeling Better

Went to work today. I had been undermedicating The Legs because I wanted to be clear headed to talk to my boss about my inability to travel and my declining health and work. I did take some "minor" pain medication this morning (trammadol) even though it makes me very very nauseous because I don't think I could have been able to take the pain of driving to work without it.

I got to work and got busy very quickly. I trained the new guy on how to fix some things in the system, and with a few people on several projects, and spoke with the clients up in Michigan. They are very nice people up that section of the country. If it wasn't so durn cold I would be tempted to move there! I made a mistake by hitting ENTER too soon and then was able to show the new guy "Look this is what happens when you aren't paying attention and this is how you fix it!"   I don't think database maintenance and pain killers are a good mix. I suspect if I checked the information the pharmacy gives me with my meds it would be there under cautions: "Use caution when operating machinery or when working with large groups of data".

I had a talk with my boss. (Did I ever mention how much I love my job? My bosses (three active and two retired) are a big part of that.) I explained about how I just am not able to travel anymore, and how I don't feel I am pulling my weight, or doing my part. I stated that I am disappointed in myself and feel that because I cannot tell from day to day sometimes how I will be able to function I am letting the entire company down.

The Big Guy let me know that he thought that I was doing pretty well despite my misgivings. He said that he would make sure I did not travel this year, and that it was time for the Junior Varsity team to step up to the big time with traveling. I said I could travel if they absolutely needed me to, but that he would need to expect that I would miss work recovering from the trip after I got back. He said, no I could stay back at the office, and just be available to them on site by phone.

I told him I could not say what the future holds with my declining health, and that I could not even say to any certainty what kind of schedule I could handle. He said to just do what I can and that would be good enough for them, and he would let me know if it wasn't. He said he was satisfied with my work even if I wasn't, and that I was always able to keep going at what he considered a great level of quality. I guess I'm glad I'm not my own boss because I would be chewing my butt right now because I just feel like I'm struggling. By the way, have I mentioned I love my job lately?? Well, I do! And it seems like I will be keeping it for awhile longer...and I won't be traveling. Big sigh of relief!

I guess all my worrying and doom and gloom was for naught. I just have awful luck (as you can tell from all my health issues) so I was just certain that my ride was over at work.  I could not concieve being able to continue working at my reduced hours. I just felt like I was not able to think and perform at the levels I am accustomed to. I tried to lay it on the line warts and all and was told let's just take it as it comes and do my best, and that my best was generally much more than they expected. That was so nice to hear because my morale really needed a boost.

All my coworkers were glad to see me too, even when I feel my abscences put much more pressure on them. I don't want to work anywhere else - I want to be able to retire from here. I was ready to do it today if my boss felt it was time. I'm glad I can hang around a little while longer because there is always something new and challenging for me to do!

I worked seven hours today but didn't really feel well. Driving home this evening I was still in town when I felt like I couldn't breathe. I pulled over and tried to breathe slowly. If felt like an asthma attack. I had several cold induced asthma attacks in Michigan, and this felt like that also. My PCP had thought that I may have had pneumonia with the flu a few weeks back but had gotten over it. My chest and ribs hurt in addition to the pain I was already having with The Legs and The Belly and The Head. I decided to go to the emergency room to make sure I didn't have pneumonia because the pain didn't seem to be decreasing.

Once you have had cancer every time you go to an emergency room they are going to run blood work and possibly x-rays. Once you have chronic pancreatitis every time you go to an emergency room they are going to run blood work for elevated enzymes, especially if you are having abdominal/chest pain. Giving a health history is time consuming and tiring. I have noticed that the electronic medical records used by my in-network emergency room has eliminated some of the repetition.

I got an IV set installed, although I did not receive an IV. The nurse listened to me after the first dry hole and used a pediatric set in my wrist and it went in the first try! Then she did a trick I had not seen before to get the four vials of blood for the labs ordered. She pulled the tops off the vacutainer tubes (what they put the blood in) and took the end off the IV lock and then let the blood pour out of the unrestricted IV site. Mine didn't really pour out but she was able to get three vials, and then used a syringe to suck the rest out for the fourth vial. She said you need to twirl the vacutainer as you spill the blood into it since vacutainer tubes are coated with an anticoagulent on the inside. She said she worked with babies and this is how you had to do it with them if their veins were too tiny.

I wasn in more pain than I realized. The Legs were especially bad at the jumping can't keep still stage. My blood pressure was 168/96 when I arrived and soon climbed to 208/102.    This makes the automated blood pressure cuff monitor alarm start beeping. It beeped for almost three hours! That caused The Headache pain to increase and the position I was on the ER bed made The Belly pain worse. Augh! Finally the pain overload I was experiencing started to decline and by the time I left at midnight my BP was back down to 170/86. The doctor offered me pain medication and I told him that I had plenty of pain medication at home but it doesn't work if you don't take it. He said maybe I should review my pain management strategy as my blood pressure was proof that not medicating was a bad idea.

The end result of a nuclear lung scan, blood tests, and a chest XRay was a diagnosis of bronchial spasms and a bronchial infection. I came away with scripts for new inhaler medication and antibiotics. I am sure this will help me breathe and feel more energetic. I had a borderline high test called D-dimer which is why I had the nuclear lung scan to make certain I did not have a pulmonary embolism.

I made it home, and I did take some dilaudid in addition to my regular evening meds. I am now tired, but in less pain. I think I am going to bed soon. Hope you all have a great day today!

Shark Bait

2011-02-06T03:14:00.000-06:00

Swallowed Whole

I am icky and yucky and erpy tonight kinda like the bait they use when fishing for sharks. The Belly is giving me fits, and I am broken out in hives in several places tonight. The Legs are dancing, and The Headache has me wandering around in brain fog. I am trying to cut back on medication for The Legs so I can actually get to work on Monday to talk things over with my bosses so The Legs are very very VERY unhappy tonight. That might have to do with everything else feeling worse too. It is hard to tell when everything is just a mixed up mess of chum.

My health problems are like a great white shark, and my future is being protected by a little fishing boat. I can just hear that Jaws theme getting faster and faster as the shark comes after my sorry slow shark bait rear.

I think I need a bigger boat. Sigh.

Communication

2011-02-05T02:12:00.000-06:00

Conversation Started

I let one of my bosses know how disappointed I am in my current ability to work and contribute. I said I committed myself to seeing the business through the stream of installations and conversions last year, I am just very unsure how I can do that again this year.   I am not sure yet what I am going to decide, but I know that The Legs are my major obstacle right now.

I hope to talk with them next week, and see what they want to do and let them know what my limits are and if that is still acceptable for them for work. I have thoroughly enjoyed my work with them. I love their company, I love what I do - or rather did since I have cut back this fall. I believe in their vision and feel that it is just going to take a little tip forward and things are going to take off even better than last year, which was a very good year for them for new business. If my bosses think that we need to make a parting of the ways I will be sad, but they have been more than fair to me.

I just can't in good conscious continue to be so unreliable and so illness prone as an employee. I have ended up ill or unable to walk after the last two trips and have missed a couple of weeks of work each time. I ended up in the hospital last summer probably as a cumulation of not taking care of The Belly properly while doing installs. Not only do I feel bad about missing work, but it costs me money and it costs my employers money especially with insurance premiums and for lost man hours. I hate that I have just gone from one illness to another the last few years; I had gotten a clean bill of health before I started this job nine years ago.

Incapacitated by this or that during the last seven years I have been injured financially also. Co-pays, deductibles, out of network deductibles, travel to specialists, medication costs, missed wages have worked together to ruin whatever little credit I had. I am lucky because my home has no mortgage, but even paying real estate taxes has been a struggle.   Not only do I have my own financial medical issues, I have my mother's also, and have been helping my brother pay for his prescriptions.

I am terribly whiney tonight. The lower dose of neurontin is not helping The Legs very much, and I am reluctant to keep supplementing with pain meds.   Feeling tired and woozy, think I will sign off and go to sleep!

Fighting The Inevitable

2011-02-04T02:09:00.000-06:00

Time to Throw In The Towel?

In boxing, throwing in the towel means you give up, you've been whupped, you are not able to continue, you concede the fight. I feel I am almost at that point. I get to this place just to revive myself and fight onward for another round or two.

I am so fatigued right now I fall asleep sitting up and it is scary to drive. I am in enough pain from so many sources that I am almost willing to give up what little coherent thought I have left for adequate pain relief. I can't digest food. My incontinence issues are not improving. My ability to walk continues it's worsening path. I want to quit trying to keep my forward momentum going.

This is probably just late night pain talking. I had a reality check today that started me down this path again. The roads are still ice and snow covered around here. I decided to go to work this morning waiting until noon so the roads would be at their optimal cleared levels for the day. I only made it 15 miles, and then exited the interstate and headed back home. I used to love driving, no matter the conditions. Today the pain levels from driving were too much and my concentration and reflexes were too poor for the road conditions. I feel like a dunce, a failure, a wuss.

Where is the old Winny who would let neither rain nor snow nor dark of night stay her from her appointed work hours? My poor health has drained my energy, stamina and strength for the last seven years. I think it has drained my determination too. Tonight I am debating what I should do. I have been trying to delay any drastic decisions until I see Dr. House in April. I just am not sure if I should wait. I wonder if it is fair to my employer and my fellow co-workers and my company's clients, if it is fair to myself, to keep trying. I love my job, I love my work but I don't even have the brain power to think right now to be effective.

I'm going to have to give myself an old fashioned pep talk. I think I need Burgess Meredith from Rocky to tell me to "eat lightning and crap thunder". On second thought, for someone with incontinence issues this may not be such a good idea....but I guess it would make me a "very dangerous" person!

Snow Storm

2011-02-02T00:30:00.000-06:00

Blizzard Conditions

Having a bit of snow today. I live in southwest Missouri. Our major weather problems are tornados and ice storms. We really don't know what to do with snow. People who live or grew up in more nothern areas (as I did) can find it hard to understand that everything here comes to standstill with TWO inces of snow, so when we have 18 inches of snow in one day it is major league chaos.

I did not try to go to work. Have had some issues with the internet today and phones (I am on a DSL) going down and back up, so I didn't even try to work via the internet. Everything seemed closed today including the interstate I use to drive to work. Apparently Oklahoma closed the interstate going westward, then the traffic started backing up into blizzard territory in Missouri, so the Highway Patrol closed the westward bound I-44 lanes from Springfield Missouri to the Oklahoma line. Since that would have been my homeward route I am super glad I did not try to go to work.

I have a personal way of know when to not drive around here. Three cars or trucks off the road and I pull off and wait or turn around and go back home. That many vehicles off the road mean that people are driving in conditions they are not prepared or experienced in driving in, and I don't want to be on the road with them either. My understanding is that there were trucks and cars sliding off everywhere. Sigh.

A nice neighbor cleaned our road and my driveway after dark this evening but I am pretty sure it will be drifted right back by morning. Of course it should be melted in a day or two but those will be a miserable couple of days. My outside dog is in her insulated dog house and we have her heater going full blast. The cat asked to go outside and we saw him sneaking inside the dog house too! I guess Bingo will have a full house! I wish she would come inside or go in the garage but she won't stay in a building with the doors shut. Her house should be very warm and kitty cat will make it even warmer!!!

My dachshund is very sad about the snow as his legs are not very long and he can only navigate where we have scooped the snow away. He definitely does not like snow or cold or ice.

I am now on a lower dose of neurontin. I was supposed to get the prescription Monday but I came home from my PCP to wait on the perscription and fell asleep sitting up in a chair. I woke up around 6 PM - I had somehow during the day wandered over to the couch and knocked out there. Don't remember anything other than sitting down in the chair. Guess I'm still not over the flu. Didn't get the prescription today because of the blizzard.

I am taking 300 mg of neurontin now because that is what I have on hand, but the script is for 400 mg so maybe that will help the pain a little more. The 300 mg dose is not doing much. My PCP said I will have to balance my tolerance for side effects against pain relief. I said I really wanted to double the neurontin, but the diarrhea is just not workable as I am getting dehydrated. So less neurontin, more pain, less diarrhea, less dehydration.

Going to bed soon, The Legs are not happy at all. Not sure if I will be able to sleep. To tell you the hard truth, some nights I simply lay curled up in a ball and cry when the pain gets too bad, especially the pelvic pain. Why pain gets worse at night I don't know. I suspect it is because there is less to distract me. I will have to practice my deceptive distracting ninja skills in order to perfect this as a pain relief strategy. If only I had a grappling hook, because my nephew in Florida told me that if he had a grappling hook he could become a ninja. I think I could too, at least a ninja of distraction, or at least grappling WITH distraction!!

Don't Fence Them In

2011-01-30T22:32:00.000-06:00

Amish Iron Curtain Started

My neighbor has begun the building of the Amish fence (at least that is what we are calling it). Not an Amish built fence, but a fence to keep our neighbor's Amish enterprises to a degree of ambition equal to the state of the private lane that leads to their property. Since they drive by here with lanterns on their buggies at all hours of the night, I am glad that my neighbor has left the brand new gate open tonight so there won't be any drastic buggy accidents.

Since my neighbor is a retired truck driver, he has cleverly designed the gate so it will require a trucker to turn his rig on a dime to get into the lane. I'm not sure most truckers can even make the turn without ending up in the drainage ditch on the other side of the farm road. I guess they shouldn't have kept running over his yard. The welder was here with his portable welding rig and the gate seems to be finished.

The gate is painted a low visibility blue which looks great in the daytime but is not too visible at night. I am thinking my neighbor is trying some stealth tactics against the 3 AM drivers across his yard. Again, I am glad he has left the gate open so we don't have a buggy disaster tonight. I don't know what a buggy crash would sound like but I would think there would be a lot of horse neighing.

For the last several days Amish traffic has been down. None of the Amish drivers or passengers stopped and asked what was going on, although every other neighbor and passerby did. Maybe the Amish are gathering their collective legal fees and planning on filing in court. Not sure if they have a leg to stand on if access is not restricted. Since their horses and cows have escaped several times due to their inability to keep a decent fence on THEIR property I guess trapping their livestock in the lane before they get out into traffic is not too bad. I guess we will find out as the drama unfolds. With my luck I'll get dragged into this, although the fence is on the same property line it has been for 30 years on my side. I'm sorta feeling fenced in myself. Sigh.

Took my brother to Walmart for a prescription and The Legs gave out on me. Having a bit of pain tonight. I just can't walk very far any more. The coughing from the flu is pretty bad when I move also so a double whammy of pain and lack of air! Durn those Walmart pharmacy bargains and the large emptiness of the Walmart Parking Lot. I probably should have used a handicapped spot to park but there had to be people in worse shape than I am. I am pretty sure I saw a few jazzing around in their sleek shiny electronic chairs.

I was glad though that there was no pukiness today and The Headache is better also. Glad that episode is over! Now if I can just stop coughing I will be in seventh heaven.

My brother-in-law who had a very bad stroke a couple of years ago has been told he needs to have an operation to open up the carotid artery on his non-stroke side. It has closed an additional 10% in the last three years. This is a life threatening operation for my BIL since they had difficulty getting his carotid artery sewn back together on the other side a few years ago and may have the same or worse problem with this one. I am not sure what my BIL and my sister will decide. They are going to meet with the surgeon and find out what options they have other than surgery. It may be there are no other options than just wait for the next stroke. My BIL has a hereditary condition with premature hardening of the arteries which makes these kind of issues more difficult than for the average person. I worry for them and am praying for guidance to help with this difficult decision.

Meet with my PCP tomorrow, will see if there are any steps (ha ha) for The Legs before seeing Dr. House in April. Hope you all have a great week - it looks to be cold and maybe stormy here.

Places I Have Puked

2011-01-29T22:17:00.001-06:00

Adding Dollar General Checkout Counter

Nausea has been my companion throughout my life. I was a car sick youngster, a pukey adult. Many things can set me off: motion, odors, dizziness, migraines, headaches, pancreatitis, gastritis, allergic reactions, medications. Today was no exception.

I took pain medication last night at about 3 AM and woke up at 9 AM and promptly tossed my cookies. Since what I tossed was undigested food (I know TMI) from what I ate at approximately 7 PM the evening before I know the pain medication was not the culprit. I had actually stopped digesting what was in my stomach approximately eight hours before taking the pain medication. This is typical for me and The Headache. I did wake up with The Headache poking needles through my brain so I am guessing the pain started getting worse the evening before and I didn't notice. Sigh.

I took 50 mg of phenergan orally, and after a brief nap I tried eating some lunch. Mission accomplished, or so I thought. I waited a little while and drove into town with my brother to pick up some meds and buy some cleaning supplies. While at the checkout line at the Dollar General store I thought - oooo not good. I had the familiar world is tipping sea sick feeling. I silently willed the super slow checkout lady to hurry up. I then took three steps from the counter and said "I don't feel too well". I hyperfocused on the bright yellow bags in the turnaround bagger device. Slow checkout lady was ignoring me, but I saw in my peripheral vision all the people in the line behind me take three steps back in horror. I grabbed a yellow sack and started ralfing in it. The checkout lady noticed and speeded up. I kept throwing up in the sack and finally quit. My brother kept saying "She's had the flu, she's had the flu" - he just did not have the fortitude I do to puke and not bother to explain. I closed the bag and mumbled something like "At least I didn't puke all over the counter". My brother grabbed my puke bag from me and started grabbing bags to take to the car.

I turned to pay and then had to grab another bag and puke again. All the counter lady could do is keep saying "are you going to pay?" I guess thinking that it was a ploy to run off with valuable Dollar General cleaning supplies. I finished with my vomiting spell and calmly turned to the debit/credit card machine and swiped my card and input my pin number. I mumbled "At least I didn't puke on your floor" as she frantically grabbed my receipt and almost threw it at me.

I stumbled out into the sunlight (it was a beautiful day in the seventies here in southern Missouri) with my bag o' puke and my receipt and my brother rushed to my rescue, grabbing my bag and disposing of it somewhere, I hope in a dumpster. I managed to drive home and have spent the entire remainder of my day sick and napping on the couch. My pancreas is hurting quite a bit so The Belly might be somewhat to blame for my malaise. That's what I get for eating some take out Chinese food the day before I guess. I may have to go visit an ER if I can't get this under control. Big Sigh.

I have no shame or embarrassment about puking in public anymore. I not only vomit, I projectile vomit!

I have puked at:
Formal Christmas Parties (pass the extra garlicky garlic mashed potatoes please - BLEH!)
Restaurants
Right in front of a family having a picnic in their yard
In front of a highway patrolman (I was speeding a bit trying to get to a turn off in order to puke)
On the dashboard of my car (Have done this one more than once)
At my desk at work
Running down a hallway to get to the bathroom at work
At other people's desks at work (using their trashcan)
College classes
On airplanes, both in the restroom and using the bags
in airport restrooms
At client's - thank heavens hospitals have lots of restrooms!
In hotel rooms
On the interstate
In parking lots
In ambulances
In hospital rooms
In emergency rooms
In church
While Shopping
In every room at home
At the doctor's office - Note: Don't poke me in the stomach.
At the grocery store
Of the loading dock of a pharmacy

There are probably more, but I'm a little too nauseous to remember. After all it is a thirty year legacy of persistent puking to commemorate! I sorta feel like Stan from South Park, throwing up everytime he sees Wendy, but for me it could be anything. Hoping you all have a great non-vomiting weekend.

Priestess of The Potty

2011-01-29T03:17:00.000-06:00

Incessant Incontinence

Day 3 of going back on the neurontin has the digestive side effects taking front and center, or is that to the rear and at the bottom??? Wasn't able to get to work because I couldn't get away from the toilet long enough to go. I have a 45 minute commute with a couple of opportunities to pull off the road and find a bathroom, otherwise it is hop out by the side of the road time. Unfortunately with already having diarrhea from the radiation treatment in 2004 when I crank up the motility making food move even faster through the digestive system I become a one woman poop machine.

I can't hold anything back because the radiation has ruined my pucker power so I had to make many clothing changes today because I didn't get to the bathroom in time. I am trying to keep the liquids going but have to balance that with increased output - I get to where the more liquids I take in the faster I dehydrate.

Thinking with envy of getting a big diaper butt from disposable incontinence britches, but got to thinking - what kind of huge-mongrously large diaper pail would you have to have?? That would take even more room in the luggage if I traveled for work than my extra large bag of meds. I might try these though because they do wick moisture away from the skin. I have to watch it because the skin starts to degrade after a while if you don't keep everything clean and dry, just like a baby behind.

The Legs are a jiggling this evening, so most of my neurontin power has gone into my gut and seems to be ignoring The Legs. They don't seem to like that. I may have to take a pain pill tonight, since it is three am and all is still in turmoil. One advantage of pain medication is that it sloooooooows down the digestive system which for me is a welcome side effect. The eyes have behaved today.

My next door neighbor has been measuring, marking, and getting ready to fence the private lane. I don't think the Amish know (or maybe don't care) that my neighbor grew up here, is related to almost everyone and knows everyone else, is a reserve police officer, and his wife has worked at the hospital on the hill for about 30 years so she knows everyone too. I watched (in between bouts with the bathroom) pickup after pickup stop and visit with my neighbor as he supervised the marking of the underground gas lines, phone lines, and power lines before getting ready to dig. I am sure word is out about the fight over the semi traffic. I have noticed a slight decrease in vehicle traffic going to the Amish property but that could just be a non-related lull. In small town America this type of thing is like throwing a pebble in a pond - you don't know where the ripples will end up but you sure know something was dropped in.

Going to bed. Hoping for a better tomorrow. Will have fun watching my neighbor get to tell the story of the fence and the gate over and over again as traffic continues to stop to visit. Hope you all have a great weekend!

Daylight Eye Trouble

2011-01-28T00:07:00.001-06:00

Scary Scotoma

Woke up this morning feeling mighty fuzzyheaded. Sure now it is the neurontin that I have started up again. Trying to get ready for work this morning I experienced almost an hour of a visual scotoma that took up my entire peripheral vision fields, leaving the middle part clear until the very end. It was like a fluctuating curtain surrounding my central vision. I was not able to really see what I was doing so I just sat in the bathroom where I was showering until I was able to see again.

I was very confused afterward so I sat around for about an hour or so to see if the confusion would clear and it did not. I may be having a worsening of The Headache and just not feeling pain as my left eye was not wanting to behave either. I gave up around noon and called in and told work I would not be able to make it. I am so tired and done in I just want to give up entirely but I will recuperate this evening, brush myself off, and try again tomorrow.

I never had a visual scotoma in my life until I took Topamax. I was very droopy and tippy on Topamax and I started experiencing scintillating scotomas. They disappeared after stopping Topamax, and I associated these with the intense eye pain that Topamax induced as a nondesirable side effect. I now occassionally have an episode of scintillating or non-scintillating visual scotomas, so not sure if Topamax made a permanent change somewhere in my hardwiring or if The Headache just likes to mess with my vision to throw me off stride. I don't seem to have an increase in The Headache pain when I have these - I probably should check my blood pressure the next time (if there is a next time) this happens although I doubt if there is any physical reason for these other than The Headache.

I slept most of the day today. At least I remember what I did today!! Yeah!! I'm ready for my brain to reboot and start functioning in neurontin mode again. The Belly is not happy tonight, but I'm happy because The Legs are still - no dancing in pain for me this evening!! Yeah again!!!

I have an appointment with Dr. House at the Washington University Neuromuscular Clinic on April 7th at nine AM concerning The Legs. This is in St. Louis, a good four hour drive away, so I guess I will go up the evening before and stay at a hotel. The Great Big Corporation I worked for had a base of operations in St. Louis a few blocks further downtown so I am very comfortable finding a hotel nearby. I used to go there on a regular basis when I was a project manager for them. I could fly in and back but flights to St. Louis from Springfield Missouri are terribly expensive - I guess because business customers will pay whatever the rate may be if there is a need for the flight. I think this will be another dead end for me concerning The Legs but I promised myself last fall I will be persistant in trying to find a solution to The Legs. Washington University has a world class neurology department so hopefully if there is anything to be done Dr. House will find it.

I go to see my PCP next Monday for a followup on the neurontin, and to see how I am doing otherwise. I am glad he is a great advocate for me with other doctors. He tries different approaches if one is not working, something I have not had good success with convincing specialists to do. Just wish I didn't have to see him as often as I do. There was a day (pre cancer) when I only went to the doctor a couple of times a year to have my synthyroid dose checked. Now I go to the doctor way way way too often in my estimation. Too many systems not working right. Big sigh.

Fading Away

2011-01-27T02:19:00.001-06:00

Disappearing Into Shiiiiiiininess

Long day today. Very tired, tried to get myself together to go to work and just couldn't think right. I couldn't get my act together to do much, and was "drifty" (that was how it felt anyway). I fell asleep a couple of times just sitting down, and have had trouble breathing and walking although it is better today than yesterday. I don't remember calling in to work, but I also don't remember making lunch for my Mom and apparently I did that. She said I made her some soup and tuna salad sandwiches.

I am not sure if the problem today is from being sick with the flu or from restarting the neurontin. I had discontinued it last week because I was getting so dehydrated I needed to slow down my digestion a bit. I wasn't able to keep fluids in no matter how much water I drank. The neurontin makes my very fast digestion go even faster, so I hoped that not taking it would make things a little better. Couldn't really tell. I restarted it last night because I noticed I couldn't sit or lie still because I was jittery from pain.

The Headache is a bit ouchy tonight and my legs are jumping and jiving as I have tried to hold off on the neurontin. I am going to have to take it soon and just give up. I really really need to get to work but I also have to be able to drive safely and THINK!!!

The Belly threw a fit this evening. Sometimes the pancreatic pain is like having a steel tipped cowboy boot kick you right under the ribs pushing all your innards around! Not pleasant, but it did go away so I am happy.

The Legs are not happy at all. It is amazing when you are really acutely ill like I was with the flu all other aches and pains drop into the background, but as soon as you feel better they pop up again. Sigh.

Feeling insubstantial and ephemeral. I don't think I am tethered to the real world very well today. Wishing the floatiness would disappear and I can stomp my two ouchy and numb feet in the reliably stable workaday world and get on with business. It has taken me five hours to compose this little piece because I keep getting distracted as in - "oooooo looooook at the shiiiiiiiiiiiiiny liiiiiiiiiiiights, ooooooooooo shinnnnnny" then "was I doing something??" then "wow, maybe I'll go over here, but where are my glasses??" then "ooooooooo...." ad infinitum.

I'm going to take my neurontin and go to bed. I think I started some dishes in the dishwasher that need to be put up but I'm not sure. I'm afraid to look because they might be clean and shiiiiiiiiiiny....

New License Plates

2011-01-26T00:04:00.000-06:00

Handicapped Parking

My brother helped me get my new handicapped license plates and placard this week. I meant to get these before going to Michigan last week because of the airport parking lot I had to use, but the funeral messed up my timing. I already had all the paperwork ready, it just was a matter of getting everything finished.

I don't plan on using the handicapped spaces very often, but the Branson airport has a very difficult parking lot. For whatever bizarre reason the airport terminal is uphill from the parking lot, so you have to hike your luggage up a slope and then another slope to get it into the terminal. I just can't do it with The Legs as they are. Coming back on a round trip, you are downhill to your car so that is not so bad but trying to get up the slope with a load to catch a plane is almost impossible for me now. My sister said I should be glad I was able to get the plates, but instead I am sorta sad. I wish I didn't need them. I wish no one ever needed these kind of plates.

I am glad I have what health I enjoy, and I am glad my mind while foggy is basically sound. I met an old friend at my uncle's funeral. She and I are only a few weeks apart in age, and we share the same middle name. She was one of my best friends growing up, and I was friends with her older sister and her brothers. She told me that she had suffered a stroke last summer, and had moved back in with her parents. We will both be 51 this spring. Not only did she have a stroke, but lesions were found on her brain and she is now diagnosed with early onset Alzheimer's disease. Her grandmother died of this (as did mine) and her physician told her she has an inherited version. She is taking two drugs to slow down the disease process, but has been denied Medicaid (they say she should be working) and has no health insurance benefits as she is unable to work. She said the worst part for her has been losing her independence and her apartment, having to put almost all her things in storage. She is very frustrated because she has worked all her life and now when she needs help she is unable to get it.

She recognized me while I didn't recognize her at first. She is much too thin now, and her hair color is lighter - more the color of one of her younger brother's, and of course she is wearing the over 40 glasses in order to be able to see. I suppose if you squint and unfocus your eyes and ignore my grey hair I don't look that much different than I did in high school - and despite all my trials and tribulations I am definitely not too thin. I think of all my complaints about my health, and my doctors, and the tests, and work and then I think of her. I still have avenues to go down. She doesn't. And that stinks.

Amish Aims

2011-01-25T00:20:00.000-06:00

Neighbors not being neighborly

I have Amish neighbors. When I moved into the area over 23 years ago, there weren't any Amish in the area. Then some of the dairy farms brought in very hard working and dedicated Amish families to run their local dairies. Then more Amish people moved in. Then there is an Amish school. Then we started having road signs up warning about horses and buggies. Than a few years ago, a newly married Amish couple bought the farm at the end of the private lane that goes between my property and the neighbor's property. Then they moved a furniture factory there. Then another young Amish couple built a home on the property and moved in.

For the most part they are quiet neighbors. However, traffic up and down the private lane has increased from a car or two a day to a steady stream of horses and buggies, and hired vehicles and drivers with pickups and van loads of Amish. Now they have started a discount grocery down the lane with a hand letter sign with a red arrow pointing down the road. Now semi trucks come in the wee hours of the morning making deliveries to the discount grocery and we have even more traffic.

I live in a rural unzoned area. I really don't mind that the Amish want to make the most of their investment in their land. Yes, I was relieved when I heard they decided against putting a sawmill right behind us, but other than the increased traffic everything has been pretty OK until the big truck traffic started a few weeks ago.

The private lane is a one lane gravel road. Its purpose is for access to two properties behind me. It was never intended to carry semi truck traffic or two lane traffic. My next door neighbor that shares the easement is fed up. Semis have been turning into my yard and across the corner of his yard and tearing up the unprotected lawns because the turn INTO the lane is way too tight for a semi to make. My neighbor went to talk to the Amish neighbors about the semi tearing up the yard issue. Our Amish neighbors have always been pretty OK to talk to - I only see them when their horses or cows get out in my yard. They are cheerful and friendly if in a sort of distant way. My neighbor reported that he was told that he could let the Amish buy him out, or take them to court but the semi's were going to keep pulling across our yards regardless. He is not happy at all.

My neighbor is a retired truck driver and a Vietnam veteran. He is a take action kind of guy. He said for the non-violent sort the Amish are really aggressive. Who knew?? So now he is going to fence the lane to the boundary of the easement and put a gate across it. The semis can still come and go, the Amish can still come and go, the neighbors behind me can still come and go, they will just need to open and shut the gate every time.

Since I don't use the lane I don't care if it is fenced (it was when I moved here - we removed the fence because it was in bad repair) or gated. I foresee crushed fences from wide turns and lawsuits commencing, but I fear an accident on the hilly one lane road with the increase in back and forth traffic too.

I'm more of a "if you can't beat them join them" philosopher and thought maybe I should put a discount bakery, and a discount tobacco store, and a discount liquor store and a discount animal feed store and a dollar store right on the edge of my property. That way everyone who visits the Amish discount grocery store will already have spent all their discount money at MY stores! I think it would be just too much work now opening and shutting that gate. Another dream gone. Sigh.

The Amish neighbors have more than one set of roads in. I think they like the private lane by me because it is only about a half mile off the state highway. I am hoping they will rethink their road position and go for the path of least resistance - annoying the neighbors on the other side of their acreage. I think my Vietnam veteran neighbor has put his Missouri mule foot down about using his yard as a roadway.

Health wise with the flu, I am better. I am still sleeping sitting up tonight. My fever has gone down some but is still there. I can't breathe if I lie flat. I can't breath if I walk, I can't breathe even now just typing. I sound like I have one of those squeaky toy wheezers stuck down in the bottom of my crunchy crackly lungs. I have increased my fluids hoping maybe I will start coughing up my squeaky bits soon.

Hoping to get to rest a few hours tonight, better than last night. Hoping you all have a great, non truck in your yard kind of week. Who knows, by next week I may have fencing like a prison with barbed wire topped defenses holding back all comers!

Down for The count

2011-01-23T11:18:00.000-06:00

Up and Ready for Round Two

Caught the flu either on the flight to Michigan or at my uncle's funeral. Have had a week that is just sorta hazy right now. Respiratory virus I am sure. My sister who had this a few weeks ago was told it was a cold, not a flu, so the flu shot doesn't cover it. Bummer.

I hate that I was stuck traveling, spewing virus everywhere I went. I would have been sick at home or at work, so the sick part doesn't matter, but I hate possibly exposing people to this. I ran high fevers Friday night after getting home, and all day Saturday, so sick I didn't want to move. Today I am still very sick, but the fever is down some and I can breathe a little better. I sincerely hope I have not given this to anyone else. I tried to be SO careful, kept cleaning my hands with sanitizer, covering my mouth but I must have been a large bag of escaping viruses on Friday coming back on the plane. Just hoping the lower respiratory part doesn't get worse that is where it seems to be stuck now. Plenty dehydrated, trying to stock up on fluids having a hard time getting them down.

Had some unnecessary drama I won't go into here when I got home from the funeral. That on top of traveling, on top of being sick, on top of being on my feet, on top of not being able to breathe, on top of having to drive drive drive makes me feel like I have been run over by a steamroller. The IM phenergan did keep me from throwing up all through the central United States on a plane, but giving yourself those shots sure hurts! I am getting tired of being everyone's solution to every crisis, but maybe that's because I'm SO DARNED SICK! I guess I'm just whiney today. sigh.

At least I am at the spot in the cartoon where (after being run over by the steamroller) you come out pressed flat and pop back to three dimensions!!! Woo Hoo!

My Uncle Pood

2011-01-15T02:15:00.000-06:00

Another Relative Gone Home

My mother's brother died Friday morning. He had been on hospice care at home since last fall. My heart aches for his children and their families and his wife of 50 some years. My heart aches for my mother, who is the last surviving sibling of her family.

My mother came from a very large family. The oldest children in the family were enough older that they could have been my mother's parents. My mother and her younger sister Retta and her younger brother Pood were very close. Raised during the Great Depression they knew what hunger was like and sometimes went days without food or with very little food. Pood never forgot what it was like to be a hungry child. I think this is why he always had hard candy or a candy bar stashed away in some pocket ready to give to any child he might run across.

Pood (real name Ralph Allen) had a wonderful sense of humor, something all his children have in common. He could see any situation in a way that seemed funny but his comments often were thought provoking in addition to being amusing. He was a veteran of the Korean War - going into the Army just out of high school and leaving it as a sergeant. He didn't speak of the war often, but I think it was a heavy weight he carried with him all the time.

Music was a passion for Pood. He had a wonderful singing voice which his children also inherited. He has grandchildren that are passionate singers also. I think Pood knew the words to thousands of songs. He was especially fond of country music.

Pood had a nickname for everyone. Snake and Fox and Head (after Edith Head the fashion designer) were his children at home and his wife. I was Sissaroo and my younger brother was Grinder (as in tougher than a mull grinder).

Pood was a 5 year survivor of metastasized colorectal cancer before his body said no more. I hope anyone reading this starts getting screening colonoscopies at the recommended intervals/ages. Colon cancer is very curable if caught in the earliest stages. Don't put having a colonoscopy off!

My bosses were fantastic as usual since I will be taking my Mom up "home" to the funeral on Monday, the day I was supposed to be flying to Michigan. They redid my tickets so I can leave Tuesday instead! I have the new guy some literature to take with him so hopefully he will be prepared for questions.

I am hoping for a great drive up there (the town is about four hours northwest from here) and a great drive back, then I will be hopping a flight to cold cold Michigan the next day. I am very sad today; everyone who knew Pood is very sad today. My mom doesn't travel well, but she is determined to go and I am glad she feels well enough to go! As for my health problems I am just going to suck it up and go.

Bad Day No. 1 2011

2011-01-13T00:58:00.000-06:00

Have Had Worse

Bad Day today all around. Never made it into work. Had to have a phenergan injection to stop the nausea. Finally able to keep liquids down. Hoping kidney stone #2 is now through gnawing its way through my innards. In pain from The Legs and The Belly and The Headache.

No pain meds today as I was not sure if they are increasing the head pain and nausea while decreasing others. I am hurting, but the blessing of the phenergan injection was that I slept most of the day again.

Am going to try my best to get into work tomorrow. I can't afford many of these days off. Not sure what to do. I have things that have to be done there. I was so hoping this year would be better, but so far it's not so great.

I had many more hives last night, will take some benedryl in a bit to see if I can make this crop go back to where ever hives come from. I didn't think the cyclosporin was doing anything but I might have been mistaken.

I am looking forward to getting up tomorrow and making my way to work. Hoping it will happen! Gotta get my mojo back someway this winter. Sigh.

My Emesis Center Is On Overload

2011-01-12T00:21:00.001-06:00

Seasick to the Max

Not a good day today for me. I seemed to not be able to wake up today and slept until about 5:00 in the afternoon. I think my body needed that, but now I have the erps. Living in upchuck city this evening.

Moving my head makes the nausea worse. Moving my eyes makes the nausea worse. Closing my eyes makes the nausea worse. Swallowing anything makes the nausea worse. Uck.

Not sure if the kidney stone is causing this problem, the UTI or UTI antibiotics is causing this problem, too much dietary fat causing this problem, or medication (especially pain killers) causing this problem. I am out of phenergan pills. I have suppositories I could use and I guess I could use one of my IM vials, but I hate to sacrifice one of those before my trip next week. I am having a bit of right flank pain, so thinking kidney stone #2 is on the march...sigh.

Thinking if this is still going on in the AM I will go to my PCP and get an IM injection there of phenergan. I am already slightly dehydrated and it won't take long this evening to make me really dehydrated. I am extremely dizzy and terribly fatigued STILL after all the sleep I had today.

I feel like a bobble head tonight - going to go soak my big old bobble head and see if I feel any better. Bleh.

Lost

2011-01-11T00:19:00.000-06:00

No Plan

I'm a person who always has a plan, a direction, course correction, a goal. These last few months I have felt lost - feeling my way down an unknown path towards an uncertain future. Trying to move forward with my life but without enough information to know if I am going forward, standing still, going backwards or maybe just taking the scenic route. I have lost my points of reference; I am afloat in a sea of possibilities and impossibilities with no way to tell the difference.

I keep putting off decisions because I keep thinking I will get my health straightened out or stable and I can make a decision then. I focus on the next thing and then the next and then the next and pretty soon I am like Hanzel and Gretel in the forest - the birds have eaten my breadcrumbs and I don't know where I am or how I got here!

I am resolving (once again!) to reconnect with my friends. I want to recenter myself around my inner needs just not my medical needs. I need to do some things just for myself for fun. I want to reevaluate what I can and cannot do. I always surprise myself because I can do more than I think sometimes, and more than is wise other times! I need to nurture the spiritual side of me. I need to stop just existing and start living again.

Work is a big concern for me. I feel so ill lately. I know I am not concentrating like I should. I hope that I am getting the two new guys/gals trained to the place if I fall by the wayside the company and my bosses (who have been so good to me) will not suffer. The company is suffering enough right now with me not able to carry my workload as I should.

I started taking dilaudid in the evenings, as small a dose as I can take and still handle the pain. The neurontin helps some of the pain, the dilaudid is helping more, but I probably should be taking it on a regular schedule rather than 1x per day. The kidney stone pain is not good, but hopefully that will "pass" soon and maybe I can drop the narcotics out of my medication regimen again.

The Headache is bad this evening possibly due to the dialudid which aggravates it. I hate having to wait until the middle of spring to see the next specialist about The Legs. This is where I lose my way. The Legs have become a major problem. sigh.

The Migraine and Headache Blog Carnival for January is published. Check it out over at Putting Our Heads Together! This month's theme is "Taking Charge in 2011", as always there are interesting and thought provoking posts to read!

I am going to go hold Mr. Squeaky (Emmett) and think happy sleepy puppy thoughts and take my meds and maybe go to sleep. Good night all!!!

My PCP and Injectable Phenergan

2011-01-08T20:59:00.000-06:00

A New Puppy and A New Plan

Saw my PCP Thursday morning.  I had only slept about 30 minutes that night and was very nauseous. I hadn't eaten a meal in at least four days, mostly intake of fluids had kept me going. I had probably only had a few hours sleep for most of the week. He agreed that I had probably passed a kidney stone, and that I was now somewhat dehydrated. My digestive issues, now exacerbated by the neurontin, are part of the problem with managing dehydration. The more fluids I drink, the more fluid is put out by my bowels - bypassing the kidneys - and the faster I dehydrate. IV fluids will actually stay in my tissue longer than drinking fluids, even the ones like Gatorade that contain salts and electrolytes.

He ordered 25 mg of IM (intramuscular) phenergan to help manage the nausea because I was at the point I couldn't keep anything down, and I have issues with suppositories becuase of the radiation damage. Sigh. I also expressed my concern at my next trip to Michigan in a couple of weeks. Bless his heart, he put a standing order for IM phenergan at his office so all I have to do is call and go get a shot. He also got me two vials of phenergan and the filter needles, needles and syringes to use before my flights. His nurse, who is a sweetheart, told me the proper way to break off the top of the glass vials, and where to inject. Now as long as it doesn't delay me too much with the TSA agents...sigh again!

I also finally have decided to face reality and asked for the paperwork for handicapped license plates. The airport I will have to go to has a parking lot that is ALL uphill, and I just couldn't bear dragging luggage across it again. My PCP marked my application as "permanently disabled". Not sure why, but I was expecting him just to do it for a temporary basis, as in "180 days".

I have a new member of my family, a little chihuahua mix puppy named Emmett or Emmitt - have trouble reading the handwriting on his paperwork, so not sure of the spelling - I'm sure he doesn't care!

Recently in my area an animal shelter burned. This shelter accepted about 50% of the animals from the local humane society. The animals at the humane society had to be reapportioned through all the other shelters, plus a new state law had dog breeders dumping excess puppies and older breeding stock to shelters so everyone was a bit overcrowded.  I decided to look for a small dog that would fit in with my dachshund. A lady I know from a discussion group and facebook has rescued several chihuahuas that were sooo cute! There seemed to be a lot of chihuahuas at the local shelters so I found one that fits with my family and with me. He is supposed to be yorkie and chihuahua mixed but he looks all chihuahua to me!

I know from experience that I will focus less on myself and my misfortunes if I have a "project" to focus on instead. Although Emmett is only two months old and weighs a tiny bit over a pound, getting him potty trained and obedience trained will be something I can work on outside of my problems. He is very calm and well socialized and seems to be very sweet natured and my mother loves him. Augie my dachshund has already offered him one of his treats which is a great sacrifice for Augie!

The neurontin side effects seem to have stabilized by now (day 10) to be mainly digestive with some dizziness. I don't think now they are going to morph into any different side effects as Dr. Kildare and my PCP both say I won't be able to tolerate a higher dose. Rats! The pain relief is far from complete and my PCP wants me to start taking Dilaudid with the neurontin at night. I haven't yet, but may tomorrow night if the pain does not get better tonight.

I called Dr. House's office (the neuromuscular specialist) to make sure Dr. Kildare's staff had sent the medical records to them, and to verify that they accepted my insurance. Pluses on both counts, but the negative is they have not made an appointment for me, and they are currently booking appointments in the March to April range.  Big Sigh...

Emmett is squeaking, his way of protesting - not much of a barker, mostly a squeaky boy. A little bit whiney - just like me! I guess I'll go tend to his puppy needs (which mostly seem to be hold me, cuddle me, pet me) and rock him to sleep. Kidney stone #2 is on the move - I may try some parsley tea a reader suggested to see if I can get it to move along!!!

Winny Vs. Dr. Kildare

2011-01-06T02:50:00.000-06:00

Round 3 - I'm Pissed

Had my follow up visit with Dr. Kildare. Now that he has taken the time to read my medical records, he seems to think I am not a well person. No duh! His exact words were "You are a very ill person" and my reply was "I realize that", and I don't think I said that in a pleasant tone of voice.

He hem hawed around about small fiber neuropathy and that the test I had done there over a month ago could only detect LARGE fiber neuropathy. Instead of saying I do not have a problem because the test was negative, as it was implied at my last visit, this time he said well, after close review of my records I do seem to have some sort of problem. Huh.

Although I have "a problem" he does not know what it is or what caused it, nor does he have a treatment plan, a pain management strategy, or suggestions on possible lifestyle modifications to help me cope. He then said, well - we are just a small town - we don't have the resources of larger hospitals like Washington University/Barnes Jewish in St. Louis. "Your case is very complicated, and I'd like you to go see a specialist at Washington University." Exactly what I told them a month ago - cut to the chase and refer me somewhere else. I don't think I looked pleased. After all this was probably a $450 visit to be told I need to see another specialist, wait more time, take more tests because everything I had told them was true and now I needed to have another set of eyes look at my case. Augh!!!

He then said I seemed angry. Hmmm. I told him he was correct, I was "pissed". He said this could be a sign of depression. I said "This isn't a sign of depression. I am PISSED." He then said depression comes in many forms, and anger was one of them. I told him, "I am just a very direct person and I am pissed off! That's how people behave where I grew up. I am tired of going to doctors and not getting any answers and going to more doctors." He then tried again with the depression ploy and anger being a trait of depression. I said "This is a personality trait that goes back 52 years. When I am angry for a reason I let you know why. This is NOT depression." Has he never met a type A personality in a woman before?? Get a clue!

He then wanted to talk about my health condition and my mood, which had deteriorated by that point. I said I preferred not to talk about the impact of my health issues on my daily life. I already knew his solution would have been to refer me to somebody else, and I was getting to the huffy point. I said I needed a plan to keep on working, or to make a decision NOT to keep on working, but nothing, nada, zilch, except send me to yet another doctor. Argh!!

So my "plan" at the moment is to see Dr. Kildare every 6 months for a checkup, for what purpose I do not know. He told me that there was no cure for what ails me (whatever it may be - he seemed to think he had a diagnosis hidden back to be confirmed by the Washington University doctor). Enough said. Not really interested in contributing to his retirement fund. Right now I am only jumping through these hoops in the hope I will actually get a "real" diagnosis. Dr. Kildare has already marked "diabetic radiculopathy" off my diagnosis list - didn't even know I had gotten that one! He said he would coordinate my treatment with the Washington University specialist.

The plan for the Washington University specialist is for me to get an appointment there (which is probably going to be another month or two) and hand carry the radiology CD's of all of my CT and MRI scans to the appointment. The doctor there is a specialist in neuromuscular diseases especially autoimmune neuromuscular diseases. I have not met him yet, but I am calling him Dr. House - since he is going to have all the answers. I suppose I could have autoimmune neuropathy, I have several different autoimmune problems. I suspect it will be more money thrown down the rabbit hole never to return.

I am not sure if I have the fortitude left to go on with this charade. I told Dr. Kildare that I was at the last tiny bit of pain tolerance I had left. The pain has been difficult enough that I have had to steel myself just to put clothes on my legs and pelvic area. The neurontin is helping the pain but Dr. Kildare says I won't be able to tolerate a higher dose. I'm pretty sure that must be true because that was the only treatment level comment I got out of him in an hour. My blood pressure was still very very elevated today. Maybe they believed me about the pain because of that?? It probably was because I was pissed, rather than the pain!

I'm complaining, but at least Dr. Kildare was not overtly obnoxious like the last time where he tried to sincerely convince me that since the nerve conduction test was negative every thing was just fine. I did have to cancel my March 2011 appointment and now I have a late June 2011 appointment. I'm not sure if I am going to bother keeping it. Maybe I'll be in a better mood tomorrow.

Neurontin Day 8 600 mg at bedtime.

No sleepiness - it is 2:23 AM and I am still wired. The Headache seems to be trying to make a comeback tonight. I think the neurontin is aggravating it. The hives are not happy either, but I don't want to take any benedryl since it is so late already. I am somewhat dizzy. Not sure if its the meds, the kidney stones, or the fact that I have not eaten solid food (except for a grapefruit and I don't know if that counts as a solid) in several days. The nausea is very bad.

I am off to Michigan in a couple of weeks, and praying that my legs will hold out for one more trip. I was hoping I would have some different treatment to try before I needed to go back up North. Big sigh.

I'm going to get my heating pad all warmed up and see if I can get myself off to sleepy land. Hoping you all have great days the rest of this week. I was wishing today that I had Spanky McFarland with me to go "Pow Right in the Kisser" and give Dr. Kildare the smackdown. One more remark about anger and depression and I was ready to give Dr. Kildare a depression on his skull with my cane! But I am a civilized being and although extremely "pissed" I did not act on my thoughts physically. Besides, I value BLING too much to inflict damage on it.

Kidney Rocks

2011-01-05T00:30:00.000-06:00

Passing Stones = Wishing You Passed Out

I know today what I did not know yesterday: My terrible stomach (and I thought pancreas) spasms were due to a kidney stone making its escape from my left kidney. This explains why two syringe fulls of fentanyl at the ER yesterday morning didn't seem to do anything much for my pain..plus why my blood pressure was at 162/110!

I last passed kidney stones about a year and a half ago - there were three of them. I know from the CT scan I had yesterday that I have a kidney stone in my right kidney. Since I got rid of all my stones in 2009 this must be a new stone. I suspicion that my left kidney HAD a stone, probably a small or sandy stone, that was not detectable by CT scan.

Besides the "colicky" pain, the clue I had today was (its icky) lots of blood in my urine. I was prescribed an antibiotic yesterday by the ER doc. I was offered prescriptions for heavy duty pain killers, but I already have plenty of those on hand. I was angry at my body so just went to work after getting out of the ER and toughed out the pain. This was not easy to do, as the pain was god awfully godawful. Today I am still in pain but it goes in spells. I fear that the stone in my right kidney will decide to take a sled ride down to my bladder too.

The Headache is not happy tonight. The pain is very bad. I think my pain cup is way overfull. I am hiving everywhere and itchy. I am not sure if the hives are from the kidney stone pain (yes I sometimes hive if I am in tons of pain!) or the neurontin or the antibiotic. Itchy Itchy Itchy! I have taken benedryl so maybe it will get better soon.

Neurontin Day 6 & 7

Yesterday was Day 6 of taking neurontin and today is Day 7. I am dizzy and have a hard time setting still since taking tonight's dose. The diarrhea (a second icky thing) is much worse. I still have fairly significant leg and pelvic pain, but it has faded in comparison to the kidney stone pain!!! Guess that's a plus for the kidney stone.

This maybe TMI for most of you but I have a compromised anal sphincter from fibrotic changes from radiation. I already have chronic diarrhea and quick motility for the same reason. So neurontin seems to have increased both the number of stools and how quickly I have to hit the bathroom. Yesterday I had two "accidents" and I am up to four tonight. I simply cannot hold back the stool before I can get to the bathroom. And today I have had zero, nada, zilch to eat - just liquids because of the abdominal pain - so right now it seems to be - urge, get up walk three steps, uh oh bad news, try to get to the bathroom to clean up. I have adult diapers or as one of my friends insists - disposable briefs - and may need to break these out if this keeps up. Incontinence pads are just not sufficient. I generally regulate this by going to the bathroom on a schedule but neurontin just doesn't care!!! :(

I see Dr. Kildare tomorrow, so I guess I will see what he has to say. [Keep an open mind Winny!] It's going to be another long night! One of these nights I will have a regular night's sleep.

Not Sleepy At All

2011-01-03T00:09:00.000-06:00

Neurontin Day 5

My hoped for dream of neurontin invoked sleep is dashed. Maybe if I get my dosage increased I will get sleepy? Last night I took benedryl to help with sleep and headache pain and hives - it's a triple whammy type of drug. Tonight I am trying to avoid extra sleep aids because I need to go to work.

The neurontin is making me bright eyed and bushy tailed. What happened to the "I can't stay awake five minutes" side effect I had when I took it in 2006? I am disappointed - my body has betrayed me again! I was counting on this so maybe I could get some really restful sleep.

I am getting pain in the region of my pancreas tonight, coming in spasms that are slowly starting to get closer together and worse and worse. I had a little twinge or two yesterday, but today its more like getting shocked by a bad electrical cord. I am taking two medications which can aggravate the pancreas - one is neurontin and the other is Januvia (for diabetes). Hoping that I haven't irritated THAT organ because it is really ouchy when it gets grouchy. Maybe it is like a bad knee, predicting bad weather. I can see me now at the old folks home "Snowstorm coming in, the pancreas is kicking a fit!"

One good thing about the neurontin, besides its ability to help with my nerve pain, is that it seems to be causing urinary retention. For most folks this would not be a desired side effect, but for me with my irradiated overactive neurogenic bladder it has been a relief!

The wacky eye problem seems to have resolved. I am still nauseous after taking neurontin but much less than I was the first two days. I am taking omeprazole (prilosec) 2x a day now, trying to get The Belly to behave better. There seems to be no further improvement in nerve pain, and I have increased my potassium intake hoping to prevent further leg cramps. I am still itchy and hivey especially since I have not taken any benedryl or vistaryl this evening. My short term memory seems to be hiding somewhere I can't remember so if I type something twice just know I am impaired!

The Belly and The Picky Pancreas are trying to accelerate the timing of the spasms and the degree of pain. I am hoping to just bear with it for awhile longer, else I will be heading to the ER to have it checked out. My PCP has instructed me to not wait for a doctor appointment if I think it is the pancreas. The spasms have gone from one every 15 minutes to one every two minutes at present. I think I will go meditate on calm pancreas vibes and pat The Belly to appease it.

Neurontin Day 4

2011-01-02T11:25:00.000-06:00

Finally Slept!

Less side effects (other than digestive issues and the wonky eyes) last night from the neurontin. I think my nerves in The Legs are on to me. They have decided to send my legs into massive muscle cramps during the night, and also my feet. I didn't realize your feet could curl downward and backward like that. It doesn't seem anatomically possible unless you are a professional contortionist with the circus but I have found out differently. OUCH!

My friend on the trach got a new speaking valve yesterday and we were all overjoyed. It is a very tiring way to speak but it is so empowering! Hopefully this will help her with some of the anxiety and fear. Think of yourself if you were in the same situation - you are dependent on others for EVERYTHING. You don't even have the strength to lift your arms AND you can't speak. What if something goes wrong when no one is in the room? Scary. Today I will go in this afternoon, but next week I will go in after work. It is hard on me because of The Legs and The Headache and The Belly, but I tell myself "BUCK UP!" thinking how hard it is on my friend when she feels too anxious and afraid. But why oh why do hospitals (and I have worked in a lot of them) always have where I want to go way way way down at the end of several loooooooong corridors??? sigh.

The Headache is grumpy this morning, probably because of the neurontin and the fact that I benedrylled up last night so the hives wouldn't gang up and I could go to sleep. It could also be that its just 3-4 days since it last decided to interfere in my life. My fingers are tingling - maybe the neurontin is deciding to work on them - I have a touch of carpel tunnel in each wrist so maybe the meds are attacking that after working on the legs. One big advantage so far - my feet feel warm. Yeah!!!

I can't be satisfied but I have to gripe - neurontin has decreased a lot of the minor pain but that just seems to have magnified the major pain. What's up with that?? Can't my brain be happy to just have less pain? I think my pain receptors are masochists.

Happy New Year 2011

2010-12-31T23:45:00.001-06:00

Thinking Happy Puppy Kitty Thoughts

Listening to New Year broadcasts on television, thinking happy puppy and kitten thoughts with rainbows and sparkles. I'm sure I am now too old, because I am thinking with fondness of Guy Lombardo and His Royal Candians playing Auld Lang Syne. Sigh.

Spent part of my day with my friend who is very sick in the hospital - well actually an LTAC - long term acute care. She is on a trach and can't speak but we put on silly hats and I told her to toe tap Auld Lang Syne as part of her physical therapy. Pancreatitis is a serious disease and can cause organ failure and worse - she has been on a ventilator/respirator for two months. It takes a while to get weaned off the equipment after being on it so long. Praying that she is close to getting on the fast track to healing. I am spelling her daughter this weekend, since her other daughter could not make it. Makes my problems fade into nothingness when I am around someone who is so profoundly ill.

Neurontin Day 3

Some of the side effects of the neurontin are fading today, hopefully my body is getting adjusted to the medication. Unfortunately the ONE side effect I was sorta counting on was excessive sleepiness. That one just doesn't seem to be evident. Rats!!!

My eyes are not so flippy after taking the neurontin but they have been sorta flippy all day. By flippy they seem to take off on their own for a microsecond and I have to bring them back to attention. I am hoping this will fade by the end of the weekend.

The worst of my pain is not being changed by this medication, but it has altered a lot of the low level burning and skin pain I have been experiencing, especially in my feet. Maybe Dr. Kildare will have some other magic that can be thrown my way to reduce my overall pain levels further. Maybe pigs will fly. [Winny - behave yourself!!!] I guess maybe I need to be more optimistic but it's not very easy tonight.

I think doctors must get complaints about pain a lot. They seem to discount what people say about their pain, assuming they must be exaggerating or that they don't report pain properly. If I am complaining of pain to a doctor it is because it is way past my ability to cope or handle. It may be a personal prejudice, but I also think doctors pay more attention if a man complains of pain than if a woman complains of pain.

Have a safe and happy New Year's Eve and New Year's Day!! Hoping for a fantastic and wonderful 2011!

Working Towards Better Attitude

2010-12-31T00:46:00.001-06:00

Neurontin Day 2

Galatians 5:11
...the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness
Bible, New International Version (©1984)

Trying today to focus on positive aspects of my life. I need to reach down deep and start moving forward again. I really feel like I am on a treadmill - running and running but getting nowhere fast. I have the scripture above hanging on the wall of my office where I can glance at it throughout the day. I remind myself that I need to be patient and kind, steadfast and faithful in my dealings with customers and with my coworkers and family.

Day 2 Neurontin

The leg pain has been flucutaing throughout the day, sometimes not bad, sometimes horrendous. I have had to do the dance of pain several times today. The pelvic pain is a little improved, but remains excruciatingly present. The neurontin has increased the diarrhea and nausea is constant. I am dizzy and having trouble focusing my eyes. The burning is almost gone in my feet, but the sharp stabbing pains persist. I am having new pain in The Belly and pray it is not pancreatitis again. I am sleepy but I can't fall asleep.

Having hives again this evening, not as bad as yesterday. Am going to bed in a few minutes. I feel really brain damaged this evening, suspect it is the medication, so I hope what I have written is comprehensable. I will try to sleep it off tonight Hoping you all have pain free days and restful nights.

Neurontin for Nerve Pain

2010-12-29T23:16:00.000-06:00

New Try for Old Med

Saw my PCP today and agreed to try taking neurontin again for The Legs. This will be my third try with neurontin, the first two were flops. Instead of titrating up, he wants me to start at 300 mg or 600 mg at bedtime. The second time I tried neurontin it made me excessively sleepy, but not so tonight. I had a few moments of sleepiness, but other than feeling tired (which I should - I've had about three hours sleep in as many days) I am not too sleepy.

I could not take Lyrica (for me a Dr. Jekyll and Mr. Hyde type of drug) but neurontin (gabapentin) is the precursor for Lyrica and can be used for nerve pain. I took 300 mg at 7:30 and waited until 9:00 to take the second 300 mg. I am very very very nauseous. I will take some phenergan soon if I can keep it down.

Neurontin so far has taken away most of the burning pain in The Legs and almost all of the pain from touch. The pelvic pain is still bad, but about an hour after the second dose I quit having the leg jitters from pain. I was actually able to get up and push a swiffer mop around the kitchen without a lot of pain, which is the best it has been in months and months.

I am noticing my left eye is turning in - which it does when The Headache is bad. The first 300 mg did rile up The Headache but I turned up the amps on my occipital stimulator and have been able to buzz it down a notch or two. The Headache is not really happy, and I want to always keep The Headache happy and asleep!

I did not expect neurontin to effect my digestion, but it seems to have increased my intestinal motility - which is not a good thing for me, as I process food too quickly anyway. The first 300 mg took a tiny bit of edge off the pain but I still was having severe pain in my legs and pelvic region. The second 300 mg really worked better for the pain, but that is when the nausea started. Now three and a half hours from the first dose and two hours from the second dose my eyes are acting really funky like they can't stay looking at something very long. I keep having to blink and redirect the eyes. Hoping this is just temporary and will wear off. The pelvic pain is still there, a little less than it was which is a blessing. I don't feel very coordinated and feel a little short of breath. Hoping this is temporary also. I really need a pain solution that does not include narcotics. The Headache and The Belly absolutely refuse to cooperate with narcotics.

I saw my immunologist Dr. Calm today. I am off the cyclosporin. Yeah!! He told me that my hives may not be connected to the mammalian meat allergy. Bummer. I asked him if anaphylaxis from the mammalian meat allergy could cause pancreatitis. The first acute pancreatitis attack I had was about six hours after I ate two or three Slim Jims for lunch because I was running errands on my lunch hour.

I have a definite appointment with Dr. Kildare on Wednesday Jan 5th at 1:00. My PCP said Dr. Kildare did call and talk with him about pain treatment options, which is the "why" for the neurontin. At this point, I don't care what I take, as long as it works.

I feel right now like my lips are swelling and my nose is swelling and having a bit of trouble with wheezing. Good heavens, I surely can't be allergic to neurontin. My eyelids are itching, and my ears feel hot. Better sign off, and take some antihistamines. Maybe I ate something or took something OTHER than the neurontin to do this?? I did have some real butter with my low fat meal this evening. Arrrrrgh. And now The Headache is starting to spike forward through my brain from the back and come out above my left ear.

Can you run away from your body??? Wish I could!!! Gonna antihistamine up and hope it helps!!