Overwhelmed

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.

New Medication For Pain

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

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

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.

Priestess of The Potty

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!

Lost

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!!!

Polka Dot Winny

Ready For A New Week

I have been on a downward roll lately.   I hope that I have reached the nadir of my bell curve and am hopefully starting the long climb upwards again.  I am going to see the neuro practice tomorrow and then try to go back to work tomorrow afternoon.  The sun will be shining, the weather will be great, and my body will be cooperative!

Tonight I am hiving, polka dotted all over.  I don't know how many of you have hives, but sometimes they actually hurt and sting before they pop out.  Today has been one of those days.  Almost like being bitten by ants here and there, but there aren't any ants.  I did eat some animal protein today, but it was a piece of turkey bologna chopped up with some pickles to make a low fat mixture I put in a sandwich.  No mammalian meat, so I can't blame the polka dots on that!  I don't think the cyclosporine I am taking is doing the job.  I have another appointment with Dr. Calm the week after Christmas but not sure if the spots can wait that long before instigating another anaphylactic episode for a non-mammalian meat reason!  I  will anti-histamine up this evening and see what is left of my spots tomorrow.  Maybe I need to stop all milk products???

The pain is constant now from The Legs and pelvic areas.  I am off any pain medication or muscle relaxers at the moment, having tapered myself off.  I have also been very careful not to aggravate my issues by doing much with The Legs the last two weeks.  My brothers even went grocery shopping for me!  So nice of them (especially in this cold!).  I'll see what NP for Dr. Kildare the neuro says tomorrow.  I can't do Cymbalta or Lyrica (Cymbalta think Rocky Balboa sweating during a heavyweight bout, Lyrica think Linda Blair in the Exorcist) and have not tolerated neurontin.  Elavil and that class of medication aggravate my myoclonus (apparently I was born with that) so I won't take these.  Not sure if there is anything much left for nerve pain in these classes.  Real pain medication I have the real issues of itchiness and hives, and the fact that The Headache really doesn't like it. Arrrrgh.

I simply just won't think about it now.  I'll think about it tomorrow. After all, Tomorrow Is Another Day!

Consumed

Surrounded

No pain meds today so I am consumed with fiery nerve defining pain.  Trying to see if the nausea is from me or the medication.  So far it seems to be me.  Not having any urges or physical feelings of withdrawal so now am certain I have not achieved physical dependence on the medication yet.

Went to my PCP and met with his nurse practitioner today to see if I can get a handle on the nausea and the pain.  I don't know if I have any pain management options left as the medication I have is about the strongest you can get, although you can get higher doses.  I have gotten such different opinions on spinal stimulation I am leery about even doing the trial.  Issues like incontinence become more important if I would have an open wound for a week. 

The NP gave me a prescription for suppository anti-nausea medication (promethazine) since I am having trouble holding down oral medication.  However, with other problems I have suppositories are not a very practical solution.  She also had blood taken so she could verify whether or not I had an infection (CBC) and also took samples to test amylase and lipase levels in case The Belly and my picky pancreas are what is causing all the trouble.  She also is going to check on the results of the EMG and which doctor I should follow up with (now not only is there my PCP and Dr. Welby, but Young Dr. Kildare head of the neurology department somehow got mixed in...I can't keep up!!!  I'm running out of psuedonyms).

The Legs and the pelvic pain acted up this afternoon - I am sure it was the second there was not a drop of pain medication in my body left.  I am finding it difficult to do anything, with the pain burning along my ganglion pathways.  I am just going to try to do the best I can.  The Headache is not happy either as I think my cup of pain is currently overflowing big time.  This was one of those days when taking blood felt like being stabbed with an ice pick instead of just a little poke.  I have been cold all evening unable to get warm and I am sure this is due to the pain levels being too high.  Not really able to eat anything either, so I don't have a lot of fuel in my system to run my engines and keep me warm.

The nausea is still ever present, The Headache is pounding.  The Legs are cramping. The Belly is hurting. I am whining.  I am going to go curl up with a heating pad and see if I can rest a bit.  Afraid there won't be a lot of sleep tonight for me.  Hoping against hope if I just tough it out the pain levels will drop and I can get back to almost normal. 

I complain a lot about my lot in life, but there are people out there with much worse problems than mine, problems that aren't just painful but have a host of other difficulties too.  There are children who endure procedure after procedure not only with patience but also grace, making the best of the situation they are dealt.  I remind myself that my pain and my personal suffering is just a drop in the world's ocean of hurt, and I should be able to function better with the blessings I have. 

I think I am going to work tonight trying to disect my pain and nausea and figure out if I can use biofeedback more effectively than I currently am able.  Onward and Upward!!

Dejavu All Over Again

Still Sick Still Hurting Still at Home

I tried to go off the pain medication last night/this morning, but got very shakey with burning terrible pelvic pain and leg pain.  Vomiting also, with a great deal of nausea. Hoping that I have not gotten a physical dependence on this already, as I have not been taking it steadily, everyday, or on schedule.  The nausea stayed with me even after taking a dose of medication this morning, but the pelvic pain did decrease to the point I could actually think of something besides the pain.

Went to my PCP this morning to do a urinalysis since I can't tell if I have a urinary tract infection or not.  Nope, no infection.  Was hoping this was the cause of the terrible pain and nausea and vomiting.  I fear that The Belly is acting up and my pancreas is trying to get into the act again.  Not good.  Can't win for losing with pain pills.  I should take one every 12 hours but have only been taking one a day when I absolutely cannot stand the pain any longer so haven't been taking one every day.  Have been taking nausea medication but have been thowing that up too.  sigh.

Talked with my boss today about my ongoing pain issues since I am not sure when this will relent.  The Legs are being very stubbon this time.  It's like they are flat tires and I am afraid they won't reinflate and work again and I'm having to go around on that tiny little spare tire you can only drive so fast on.  My boss was so nice and understanding and I feel so sad that I can't make my legs go and whip into work and get things done.  Hoping that I will snap back out of this and the pain will be manageable again soon.

I feel this fall like I'm in the movie Groundhog Day with Bill Murray - the same day keeps playing over and over again and I don't seem to be getting the process down pat so I can escape.  Oh well, at least I like Sonny and Cher!

Screaming Inside

End of a Bad Week

Not a great week this week.  Glad to be rid of it and moving on to next week. The Legs and The Belly and The Headache and The Hives have all decided to descend on me this week.   I have been medicating more than I like to, and since I impulsively deleted data during my last hiatus in medicated Hell I did not try to work at all this week.  Not happy at all!

I am having difficulty sitting still this evening between all my oooboos and my hives.  Doing the dance of pain while trying to avoid scratching too much.  I fear it is my pain medication which is making the scratching and the hiving increase.  Just ready to sit here and scream, but I am practicing serenity and calmness so I am just screaming silently.

Everywhere my clothing touches my body, every bend and joint and wrinkle, is scratchy itchy burning lumpy misery.  I've been worse but it still is not pleasant.  My pain is less because I am medicated, but it doesn't do much good if I replace the pain with jumping nerve wracking hives.  Worried because I am almost out of pain medication options and since this reaction seems to be increasing with each dose of pain medication I have taken I fear this med is going to be off my list of remedies permanently.

I'm going to take a second dose of prednisone to see if it helps this evening.  It may be why the jitters are worse, since prednisone makes me a worse insomniac than I am already.  Oh what a tangled web of chemicals I have woven for myself.  Argh!
I woke up grumpy and itchy and in pain.  Not my usual cheerful self.   Need to do an attitude adjustment tonight in my sleep and slough off all my negativity and get back to my sunshiney normal disposition.  But even the bottoms of my feet itch so I'm definitely whiney.  On the upside my Mom is getting back to her normal grumpy self which makes my heart happy. 

If Mom has the energy to gripe then she is feeling much better!  I told her we are going to both be old grumpy seniors that sit around and complain about all the young whippersnappers and their strange disrepectful ways.  That generally elicits a laugh from Mom!  We worked on a crossword puzzle together this evening, and Mom was better at it than me.  I'm going to blame my lack of performance on my medication, but really my 80 year old Mom is fantastic at crosswords!  Hope I am that sharp if I make it to 80.

I'm going to go and slather my lumps in something to reduce the itching and go to bed. 

My Cup O' Pain

It Runneth Over

We are all born with an innate ability to withstand pain.  Some of us are born with more "capacity" to withstand pain than others.  Chronic pain effects us differently than acute pain.

The question I ask myself, what "switches" me over from having pain I can tolerate and work with and deal with to having pain that makes me shake, get "shockey", unable to think?   It literally can feel like one minute I am dealing with pain just fine and the next I am past my limit.  I don't know how to plan for this, how to prevent it, or when in the midst of it I sometimes can't even think of anything but the pain.

I have decided that I have a cup, like a teacup, that holds my pain. 

If everything is going fine, I don't overdo anything, The Headache behaves, The Legs are OK, The Belly rumbles onward, I am able to sleep and rest, the pain drips into the teacup but then gets emptied every day, and I start off the next day with an empty cup ready to fill it up again.

If something happens, and I have acute pain (like The Headache) instead of dripping pain into my cup, it POURS into the cup in great gushes.  If I medicate, or get my stimulator set just right, or am able to sleep (or maybe combinations of all three) the gushing stops and the teacup holds at that level, and if I'm lucky empties.   If I can't stop the gushing, the teacup overflows and I am at the point I can't walk, talk, or think from pain.  If the teacup just holds and doesn't empty, I am still at risk of overflowing it, since now I am working with a cup that is half full, three quarters full, or to the brim instead of the nice empty cup.

If the cup doesn't get emptied, and the pain just drips onward with my normal levels of pain (instead of gushing full with acute pain) I come to a tipping point.  One more drop, and it is overfull.  Being overfull, my body doesn't seem to care if the extra drop of pain is from a too tight blood pressure cuff, a needle stick trying to start an IV, or an extra bright light boring into my brain - it just starts the same shaking, not able to think, freezing cold reaction it does when I have great gushing extreme levels of pain.  The only difference seems to be that I am not as agitated as I am when the pain comes too quickly and overflows my cup too fast.  Perhaps my body and mind has had more time to adjust?  Or the physical shock is not as great? Just not sure.

My PCP tells me that allowing my pain to stay uncontrolled puts me at risk for "overflowing my cup o' pain".  Not enough sleep puts me at risk.  Doing too much without controlling the pain puts me at risk.  He gives me plenty of medication so I CAN control my pain. He worries that I WON'T control my pain.

Here is my dilemma:  I am not afraid of addiction, but I fear not being able to "function" on the pain medication.  I am sleepy.  I don't think right.  I have poor impulse control. I have poor balance.  My nausea gets worse.  I won't drive because of these side effects.  I find it difficult to be productive because of these side effects.  I like being productive.  What to do? 

I can't function at all when my cup o' pain overflows, and I can't function well with the pain medication.  Logically I know the answer.  It is the same answer my PCP tells me.  Not functioning at all is not acceptable.  Not functioning well is not optimal, but it is better than not functioning at all.  I probably am not functioning with the pain as well as I imagine, because the "drip drip drip" into the teacup does take a toll.

I hate having to change, having to admit I am not in control, having to deal with this.  I'm a big wuss....and a complainer....and a griper.  Determining this weekend that next year will not be the same as this year.  I will take a hard look at what works, and what gains the most ability verses the least disability, and I will make permanent changes.  I am positive that I will continue to endure and there is either going to be a way to upgrade my teacup o' pain to a bucket, or a way to keep that cup empty more often.

Here are some links to more information on Chronic Pain, Chronic Pain Syndromes, and Pain Management (I hope none of them are wackydoodles - I visited all the websites but didn't research their bonafides):

American Chronic Pain Association
International Association for the Study of Pain
Alliance of State Pain Initiatives
American Fibromyalgia Syndrome Association
American Headache Society
American Pain Foundation
Chronic Pain Association of Canada
The Endometriosis Association
The Facial Pain Association
International Pelvic Pain Association
National Headache Foundation
National Pain Foundation
The Reflex Sympathetic Dystrophy Association

Next year will be better, tomorrow will be better - there is always tomorrow!  (PS I am thinking of capitalizing on the poor impulse control while on pain medication - what kind of whacky behavior can I just have fun doing and THEN blame on the medication?  Hmmmmmmm....)

Revolt of The Legs

Living in Quandary

Have I mentioned lately I love my job?  Even with the travel, even with the pain, even with the fatigue I love doing what I do.  It's hard to define why I love it because what I do is not set in stone, it varies from day to day, sometimes it's not easy or pleasant, and physically even though it is a desk job it is becoming difficult to do.  I enjoy everyone I work with.  My bosses are great and supportive - plus they know what they are doing and are passionate about what they do.  It's intellectually stimulating and mentally challenging. I work with healthcare administration and healthcare finance which is a field I chose to work in approximately 20 years ago. I get to work with small hospitals all across the United States many in rural areas, and advocating for rural healthcare is another passion of mine.

My sister said when I got this job over eight years ago that I had found my dream job.  She was right!  I campaigned for this job.  I could tell from my first interview with them that not only did I want to work there I HAD to work there.  It was a big change for me.  I went from mega corp to tiny corp; from tons of direct reports and fiscal responsibilities to no direct reports and no fiscal responsibilities.  I went from exasperated and aggravated to excited and engaged.

I am sad tonight, not about my job or my work, but about whether I am going to be able to continue with my job, my work.  My body is not recovering well from my last trip.  I fear increasing disability, increasing medication, increasing pain.  I am wondering, am I now really disabled?  Is there someway to absolutely know?  I have great amounts of will power and have been using it to keep going but now even that may not be enough.

I experienced a great deal of pain in Michigan, and medicated and kept going even when I shouldn't have.  Even getting in and out of cars was becomming difficult. Coming back, in addition to the adventure of the flying puke fest, I experienced a great deal of difficulty walking and standing.  Flying is always an issue because of the walking necessary, and the standing necessary, and getting on and off planes while hiking a PC and a carryon full of medication.

Last weekend was frightening as the leg malfunctioning continued to evolve.  Saturday walking was very difficult.  I felt like I was shuffling along or using my thigh muscles to scooch the legs where they needed to go.  Saturday night the pain was pretty bad.  Sunday morning I woke up with big round numb areas in the bottoms of my feet and my legs tingled all the way up to my hips.  Before Sunday, the tingling only reached about six inches above my knees.  I felt very tired.

It is now difficult to get up from a couch or a chair.  I feel my legs are very weak.  The pain increases and decreases throughout the day but I ended up going home early today because of it.  Driving is hard, sitting is hurtful, and walking is an ordeal.  My incontinence issues started increasing almost two weeks ago and have settled into a new kind of normal that is worse than it was before Michigan.

I saw my PCP today and we discussed these issues.  I could not move my left leg, my left knee, my left ankle, my left foot against resistance.  I could barely move my right leg against resistance.  My reflexes have been gone almost a year now, and I think the damage decided to take another leap forward (or perhaps that would be a leap backward??).  I am much worse than I was a couple of months ago.

My PCP wants me to get EMG testing, even though I told him that Dr. Sassypants said there really wasn't anything anyone could do. I don't have structural issues that can be fixed. He also wants me to go back to the local neurology group which I really don't want to do.  I have issues with that practice, and he really doesn't have anyone else he can refer me to.  He knows why I don't want to go back there but felt like this is urgent enough it wouldn't pay to try to get established somewhere else out of the area.

When The Headache was in its full undiagnosed horror I had a neurologist, Dr. Dense, in that group that not only did not listen to ME, but also ignored the advice of the neurology group she sent me to in St. Louis.  She refused to prescribe the only medication that works for The Headache which they had prescribed in St. Louis for a few weeks until I could get back to her. After a month without any pain relief she told me she would only prescribe the medication that worked (indomethacin - NOT a narcotic)  if I signed a paper saying I would move my care to another practice! Totally unethical. I'm not thrilled at the prospect of seeing her again.  My PCP says he will speak to the head of that department but I don't think I will have any luck getting reassigned to a different neuro.  sigh. I have absolutely no confidence that Dr. Dense will be able to help me at all.  A waste of time, money and effort that I can ill afford.

Per my PCP, I am to stay off my legs as much as needed to keep the pain at bay.  Unfortunately that would preclude walking at all.  I am to let them know if it gets any worse.  I was told that I may need a fancy schmancy rollerator walker soon, and may have to retire BLING.  I fear even that would be a stop gap measure until I am forced to full out wheelchair time.

My PCP has modern views on pain management, and wants me to keep him in the loop if I need stronger narcotics, and told me to keep taking the Soma also.  With so many people having issues getting adequate medication for pain relief, I am very grateful that my PCP understands and is willing to prescribe.  I am very sparing in my use of pain medication (although I did take some tonight) and am still working on prescriptions I filled last spring.  He would like me to take more and do it on a schedule in order to stabilize the pain, but right now I am willing to be in some pain in order to function at a higher level.

I have an appointment with Dr. Calm to discuss the cyclosporine and The Hives tomorrow.  I took blood tests for that today.  All these appointments are crammed together because I had to reschedule while in Michigan because we extended our stay.  Already tired of seeing docs!

Going to bed soon, as my pain meds and my antihistimines are making me sleepy.  Hoping that maybe The Legs will be better by next week.  Sigh again. This way I can delay making any decisions I don't want to!!

Hey, at least the cankles are better!!!  And if I have to get a rollerrator walker, I'm gonna trick it out with spinners, rear view mirrors, and a special paint job - and maybe curb feelers and some fuzzy dice, and one of those horns that plays songs!!

Legs Legs Legs

Need Magic

Have been using my cane BLING and taking pain medication in order to get by this week. As the pain increases, the time release medication lasts shorter and shorter periods of time. Instead of 12 hours, it seems to lose its umph at about 4 hours. Attempting to sit as much as possible but it is difficult.

My legs are on fire this evening. I decided to rest in my hotel room this evening, not going out to eat with my co-workers. The pain is not good, but I am waiting until 12 hours have passed before taking another pill. It is becoming hard to get in and out of cars in addition to having issues with walking standing and sitting. Sigh....

The client would like me to stay another week. I am willing to stay, just not sure how I will force my body to my will. They are wonderful people, and I understand their wish to have someone here for another week.  Working on problems for other clients from the hotel room this evening.  I need a magic wand - bippity boppity boo - and all will be well. Wishing I had a fairy godmother!!

Feeling Fifty

Bad Time On The Road

Went this week to train at our new site. They are wonderful, easy to train, eager to learn. I however was not so wonderful. I worked Sunday, worked until about 8:30 PM Monday, took until about 11 to get my work clothes ready and medication packed, got up at 5 AM drove two hours - tried to without pain meds, had to stop and take pain meds, and take a half hour to be safe to drive, so then that was two and a half hours, got to the client.

Instead of nine students I was expecting they had gotten enthusiastic and I had about 20 and they had seemingly overnight created a bigger classroom, which was great (even exceptional) - except I didn't have enough training sign ons or training licenses to accomodate this large of a group. I am anal about these things, and test everything before hand, but no way to test what I don't know. After an hour and a half delay to get this all setup, I whipped into training mode.

They were fantastic, but the organization that training large groups requires and the timing of how you train, and your "patter" (fill-in talk) while you try to observe what is going on is different. I would not have attempted to train such a large group by myself - normally that is a two man job. One to talk, one to observe and help. Ah well, we got through it, and they got trained, and The Belly protested, and The Headache reared its ugly head. I had three more sessions, one unplanned where a lady just came at the wrong time - I just trained her on the fly - why not?, and the first one I finally ended up breaking into two sections AND still got done on time. Am I a miracle worker or not? But I was wiped out by five o'clock. Generally I am the person who determines the class size, gets the particpants signed on, etc. This site has been chaotic for me because I do not have control of this. Serenity Now!!!!

I have let go of being in control months ago, but days like Tuesday and yesterday happen because bless their hearts my clients don't have any idea what goes into creating a training class (like licenses and sign on's and special data). I just try to be professional (my clients are not trying to create distress to my perfectionist training persona - that is all self inflicted) and go with the flow. I am a teacher in the fourth generation of females on my father's side, possibly fifth, so I just take the schoolmarm mojo and make it work.

I spent from six PM Tuesday to five PM yesterday (Wednesday) vomitting. I think the culprit was The Belly, but I can't rule out The Headache. I am so dissappointed in myself. I am working so hard to be stronger this year, and this - my first challenge - I managed to muscle through, but not without my clients knowing something was up yesterday. I had to rush out of training classes a few times to pake in the bathroom nearby. I managed to time it by the time 10 AM had rolled by and have class breaks so they wouldn't have to stop. Auuuugh!!! Poor clients!

I love the people I work for, and my Big Boss even told me he is trying to hire a training expert to take the load off of me. They are just the nicest people. God was steering me in the right direction seven years ago when I was searching for a good place to work, for good people. I was tired of corporate shennigans, outsourcing, protecting my people from downsizing, trying to do the right thing when the coroporate muckidemucks were determined to do the things that made them (personally - not the company) the most money. Soul weary I found this company, and they hired me!!! They keep me renewed even in times like this week when my body tells my mind it is time to quit.

I have gone off any pain medication today, didn't have any since Tuesday evening since I couldn't keep anything down. I'm going to see if I feel better even with more pain. I can't go around not able to take in fluids because I will end up in the hospital for sure. In quite a bit of pain - going to get dressed and head into work, even though I am late today. Push push push and see what breaks is my motto this week! Feeling all of my fifty years and then some today.

Feeling Better

Sprinkled with StarDust

Feeling better even though very hard to stay asleep. Couldn't get enough sleep today, so no work, now medication has worn off a little, my friend pain has come to visit and can't go back to sleep. I will be glad when I get my medication roller coaster flattened out.

Tonight I'm just hoping that the stardust will help me put myself back to sleep, and the pain to bed too!

Good night Belly. Good night Headache. Good night pain. Good night pancreas. Goodnight Hoagy. Good night stars. Good night moon.

No More Pain Spikes

Working Towards Normalcy

Last year I spent in desperate pursuit of getting an occipital stimulator installed to mitigate my headache pain. The degree of daily nonstop pain I was in was more than I could handle, and medication did little to assist control. The diagnosis I have, hemicrania continua, only responds well to one medication [indomethacin] and that had started to ruin my pancreas so I was being forced to discontinue it with no real replacement for pain relief. By a miracle of some sort I got accepted into a trial study of occipital stimulation for headache control, and to my amazement the stimulator did what it was supposed - controlled my pain! Not 100% but close enough at this point I'm considering the daily pain problem fixed.

What I am left with are spikes of extreme pain - they come in bunches, piercing through my head on the left side, burning their way back to my hind brain where they disappear as quickly as they come. All I can do is bear down and hunker through the outburst. I don't think any medication I take will stop these, as my headache specialist, Doc Optimist, said that indomethacin is the medication of choice to control these "spikes" also.

My hope for this next year is to achieve pain control: for the daily headache, for the pain spikes, and for my now chronic pancreatitis. Last year The Headache did not respond well to pain medication, the only relief I received with pain medication was when I was given enough in an emergency room to send me to the sweet land of oblivion. With the main part of The Headache now being gently tingled out of my skull by my electronic headache zapper, I hope that the pain medication I am taking for the pancreas problem will also take care of The Spikes.

I have only been on a pain medication regimen for a handful of days, but I am getting over the sedating effects, and have noticed a decrease not only of The Belly pain but have only had one Spike episode in this time. It is too soon for me to know if this is just fortuitous circumstance or a real benefit of the medication. My worst fear is that the medication (time release tramadol and vicodin) will create the dreaded Monster: Medication Overuse Headache.

My PCP assures me that the level of medication I am taking verses the level of pain I am experiencing will not lead to addiction. He feels that even with the new regimen I am undermedicated. I prefer to take baby steps with new medication - my roller coaster experience the first year The Headache manifested has made me a cautious consumer. I only want to improve my health situation, not worsen it.

With better pain control I plan to increase my activity levels. I have let contacts with friends slide the last couple of years, as it was a struggle just trying to keep working. I miss my friends. Email and phone calls are great, but they are not a substitute for human to human interaction. I need to start getting out regardless of how I feel, but getting the energy to do so will be hard. Thank goodness my family is here and they don't care if I'm a limp dishrag some days!

Looking forward to a year full of surprises. I could not have predicted how well 2009 turned out, so I am hoping for an even better 2010.

Winter Weather

Icy Winds Do Blow

1923 New Hampshire
Dust of Snow
by Robert Frost

The way a crow
Shook down on me
The dust of snow
From a hemlock tree
Has given my heart
A change of mood
And saved some part
Of a day I had rued

A snowy day, an icy night - dreaming of warm summer breezes. Still up at three in the morning, medication not much help tonight. Hoping tomorrow will be better.

I am growing more used to the pain meds, not nearly as drowsy feeling. Could use some medication drowsiness this late or early in the day. Am thinking of taking another dose so I can lay down in some comfort without The Belly interfering and sleep. The Headache is acting up tonight - may just be the weather, or it could be the new medicine. I think I am ruing tomorrow already.