Best Laid Plans

Why don't things Work Out??

Yesterday found out from my PCP that I probably started an inflammatory response in my spine from my fall.  He was aggravated that the ER docs just treated the pain and NOT the inflammation which my PCP says can cause some real damage.  Pooh!  Just what I needed more bummy sucky not what I wanted to hear news!!! My best laid plans are fully of kitty laughs at how poorly they have performed.

He gave me a bit shot of prednisone and a script for a three day "burst" of prednisone to drop the inflammation and hopefully stop the new onset incontinence and the new onset numbness.  Downside is that he said as the inflammation drops I will start to feel "new" pain.  OUCH!  And he was right!  DRAT!

My PCP also gave me enough meds to make sure I didn't keep moving yestersday.  I had 15 minutes to get home and then ZONK I was out like a light.  No time to call work, write work, or do much except sleep.  Sometime in my snoozathon I moved from the sunroom couch to the living room couch.  I finally stumbled to bed around 11 PM.  Sigh.

Got back to work today at around noon.  The pain in my teeth came alive - this is now day 2 of prednisone, one day left.  Everything hurts but it could be worse, better than broken bones by a long shot! Lots to do and not much time to do it in, so maybe I will be up to working this weekend.  If I do I may need to rescind one of the days off I took for the fall.  Big Sigh.

Am fearing I may have to have a new set of choppers in order to set my teeth to rights - not sure if they will be able to be saved - the pain is deep set into my spongy bone around my teeth - they feel like they are knocked loose - and with more pieces falling off every hour or so, am afraid the roots might be dead. I lost big chunks of tooth today, so hoping I have some teeth left by the time I see the dentist at 12:30 on Friday Ptoooey!

Too Sleepy

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!

Nuclear Winny

Wasted Effort

Saw young Dr. Kildare and his NP today. His NP was very nice (I'll call him Nurse Goodguy) but young Dr. Kildare was a bust. What I expected at that practice so I was not surprised, but I am truly peeved at the total waste of my time.

I had a long spiel written about Dr. Kildare's attitude, but you know what?  I've wasted enough negative energy on him today.  Let's just say I am back to square one.  Going for blood tests tomorrow to make sure I don't have a copper deficiency or vitamin E deficiency, which with my digestive problem could be possible. I did have the expectation that Dr. Kildare would have reviewed my very extensive medical records BEFORE my appointment instead of telling me to be patient and give him time to study my records before my next appointment in MARCH 2011. 

On the upside, I did put in a little quality time at work, training the new guy on some support issues.  I feel really bad because I have not been able to work with him as much as I would have liked to.  I finished up one job for a client going through the steps with him, but said next month (God willing and the creek don't rise) I will be there and he will do the same monthly process and I will watch and answer questions.  He is willing to dive in, but his experience is just not as varied as mine so there is still a bit of a learning curve.  His attitude is great, and he is very nicely documenting everything and trying to flow chart processes.  His frustration is that circumstances for software support and how to do the support is as varied as the human mind can create mistakes.  There is no one correct way to fix an error, because there is no one way to create an error, or is an error when created the same way always the same error. Sigh. 

I am trying to get him as trained as possible because I am not sure what the future holds.  I was hoping for some sort of plan or finality today with Dr. Kildare but instead just ended up with more question marks. I have had at least five years of question marks, and I am sick of it.  Today just driving caused problems.  I am pain medication free and muscle relaxant free so far this week.  Not sure if I am going to stay that way but that is what I am aiming for.

I am working some tonight from home because I don't think I will be sleeping much anyway.  Maybe Dr. Kildare will be brilliant and at least will be able to tell me what the future holds sometime in March 2011.  Probably not.

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!

Angioedema Hurts

Ouchy and Grouchy

I forget between bouts how much angioedema can hurt.  It is deep seering down to the bone type of pain, and at the same time burning through my skin kind of pain.  It hurts to move, it hurts to sit, it hurts to type, it hurts to walk.  This is going on day four of this bout.  Hoping the pain lessens.

I have not complained but I did go home early from the client's yesterday. My boss I think realized how sick I look and went in early today but I don't have to be there for a little while yet so I could sleep in!  Yeah!!  I try very hard not to complain because it was my own choice to come when I didn't feel very well.  The pain yesterday was overwhelming and today is a teensy bit less but very bad.  I could take pain medication (I have it with me) but I will be non-functional if I do.

Ocassionally I am at the "shaking won't stop" stage of pain - was there most of yesterday, but it is coming and going today.  My legs are starting to stop swelling and my hands feel normal.  I have mild facial swelling which is not noticiable (thank heaven for small favors!!).  My red nose is still red.  sigh.   I can get my feet into a normal pair of shoes today, not my fat foot traveling shoes I have had to wear for the last couple of days.  Hoping this episode of angioedema will be gone soon!

Gonna get my stuff together and get ready for work.  Happy Halloween everyone!!!

One Day's Difference

Snow Now Gone!

Really lovely weather today, can't hardly believe that the snowstorm of last weekend happened.  Left for work with snow still on the ground, covering the yard, ice still showering down from the trees.  Came back from work this evening, and only a few little bits of snow were left.  The robins are happy, and we had two meadowlarks that were very bedraggled and sad about the snow so I'm hoping they are back to nesting now.  Looks like all the leaves in the yard tried to wash up on my back porch/patio though.

At work, got a different room and desk this week since apparently last week while I worked from home it was "Moving week" at the office!  I laugh everytime it happens - we play musical desks about every six to eight months where I work.  I really don't care where I sit (except next to the lunch room when I am nauseous is not so great) but I got moved out of the office of many lights to a nice warm room (actually hot in the summer) with fewer flourescents and some soft nice natural light.  My only request this time was that I NOT be moved to the super cold conference room area.  You can practically see your breath in there, and I think I would have to wear a winter coat all year long.  I think this one will be nice and toasty.  Yeah!  At least until next moving week, eh??

The new employee the trainer trainee is EXCELLENT!  I am holding my breath that she continues to like the company and the work.  She is bright, a quick learner, good sense of humor, and a great communicator.  Woo Hoo!  She has two school age boys, so I am hoping that the travel part of the job won't be too much for her.  I have such a great crew to work with: the programmers are fantastic, and the clients are great [even when I get client fatigue from being there too long], and now finally someone trainable with the ability to do the job!  Life is good at work, if I can just get the body to cooperate with the brain!

Not a great day for me pain wise, but am just sucking it up and moving forward.  Resting last weekend helped, but still very painful for me - especially driving. Can't take the meds and drive to work, so nothing until I get ready to go to bed. The Soma takes away a lot of the nerve pain, but I am left with pretty weak legs, so not too functional lately. Ah well, maybe tomorrow all will be normal!  After all, look what happened to the snow in one day!

I'm Pixilated

Where's Harvey When You Need Him...

Thinking today about internal attitude. One of my favorite movies of all time, Harvey with James Stewart, not only makes me laugh it makes me think.  It's all about taking the alternative path through life, the road less traveled.  My favorite quote is:

"In this world, Elwood, you must be oh so smart or oh so pleasant."

Well, for years I was smart. I recommend pleasant.

—James Stewart as Elwood P. Dowd,

I would love to be able to wander through the world, pleasantly surprised by everything just as Elwood was in the movie.  I tend to veer towards the logical smart side of the world, to the point I sometimes don't connect with others as well as I should.  I have built skills over the years to shore up this weak point in my personality, but under stress I have to pointedly refresh my committment to "pleasant".  

I was a disgruntled young person when I was in my early twenties until I dissected why I was being miserable.  I discovered that everytime I was angry or disappointed I had made the decision myself to experience that negative emotion.  I decided if that was the case, why not make a concerted effort to feel happy and joyous and positive instead?  It made a great difference in my life, and still does to this day but the old negativity still creeps in when I least expect it. 

I am adjusting my attitude, putting my positive foot foward, thinking sunshiney thoughts before heading into work tomorrow. I do wish I had a Pooka like Harvey to stop time and whisk me off to parts unknown for a day of pleasant conversation, so I could rest and rejuvinate.  No R&R time for quite a while, and I'm starting to wear down.  Sigh....

Does Anyone Really Know What Causes Migraines?

Your Guess is as Good as Mine

Heather at War On Headaches stated in a comment to a recent post (MRI Results)

I'm beginning to think that headache pain is simply headache pain, and there may not be an explanation. Don't get me wrong - I'm not giving up on trying to get better; I'm just thinking that trying to find the source may be a wild goose chase!

This got me to thinking, and since my brain is on permanent circuit overload status that can be a dangerous thing. What would I find in PubMed if I did a simple search on 'causes of migraine headache'? Surely I would find some consensus, especially with the plethora of imaging techniques and genetic tests and new drug studies. Instead of consensus, I found no unified field theory of causation, and much disagreement on disease mechanism.

I only went through a few pages (sorted by most recent relevant contributions to journals) and came up with a short list. After review I wonder if what we call "migraine" is actually a catch all for several disparate diseases which all cause similar symptoms by different mechanisms. Perhaps that is why it is so difficult to manage, because there is no real "it"...rather migraine is a loose definition of a entire spectrum of disorders

A couple of surprises were a link to a specific pesticide, association with high levels of air pollution, and mitochondrial damage associated with medication, including acetaminophen. I had migraines BEFORE acetaminophen was ever marketed, so I definitely know in my case there is no correlation to that one. Here's the list I compiled:

1. Patent foramen ovale
2. Metabolic Syndrome
3. Obesity & dysfunction in the orexins pathways
4. Changes in extracellular sodium and potassium levels in spinal fluid and the brain
5. Air pollution
6. Dilation of dural vessels
7. Exaggerated or abnormal neurotransmitter responses to normal cyclic changes in the ovarian hormones
8. vasodilatation provoked by calcitonin gene-related peptide
9. Neurogenic inflammation of meningeal vessels provoked by peptides released from trigeminal sensory neurons
10. Pituitary adenylate cyclase activating peptide-38 (PACAP38)
11. Mutations in ion channels causing imbalance in the activity of excitatory and inhibitory neurons
12. Dysfunctions in the neuronal networks in the brain stem (especially in the serotoninergic nuclei) or the hypothalamus (SCN)
13. Medication induced mitochondrial damage; offending medications include acetaminophen and psychotropic drugs
14. Cortical activation, which disinhibits craniovascular sensation through the nucleus raphe magnus (NRM)
15. Inflammation of the meninges, particularly the dural membranes that surround the brain
16. Mutations of the voltage-gated K+channels of the K(V)7 (KCNQ) family
17. Pesticide Antracol Combi WP 76
18. Cytokine and immune system modifications
19. Nitric oxide and the transcription factor nuclear factor-kappaB (NF-kappaB)
20. 5-HT(1F) receptors and/or 5-HT(7) receptors

See what happens when I take pain medication and I can't sleep? I come up with simplistic suppositions of semi-scientific speculation and can't stop the alliteration bandwagon for the life of me!!!

On a personal note, no nausea today so far, so ate a small but real supper (dinner for you city folk). The Belly protested with pain, so I took a Percocet. The pain decreased slightly and I don't feel drugged at all AND so far no hives!! Woohoo! My PCP said this is a low dose, so maybe this is something I will be able to take and still be able to work.

I worked today for about six hours helping look at conversion data for a client, and working on testing some programs. It was very difficult for me as I have no energy and am very very shaky feeling (this was way before I took the Percocet). My boss announced yesterday they have hired someone as a trainer, bless his sweet heart!! I am so relieved; although I have communicated with my bosses about my illness, I have not been honest with them or myself about how difficult it is for me to work. After the last couple of weeks have been afraid that I may not be able to continue and they would not have anyone to do what I have been doing, so I am relieved they have found someone!

Working is almost more than I can do, and the last two weeks have made this even more clear. I love the work I do and the people I work with and the company I work for. I am more fulfilled at this job than any I have had in years. No matter how difficult it is to go to work, I just can't envision my life with out this, but I want to be fair to my bosses too. They have a right to a worker who can actually get through a day without getting so ill she can't continue. I am trying my best to get better, but its not happening fast enough for me.

My mother and family are wanting me to quit and apply for disability. In all practicality, even if I wanted to apply for disability, there is no way for me to survive financially while I wait 18 months to two years for a disability determination hearing. In the U.S.A. [note: opinion not fact] you have a 99.9% chance you will be denied disability on initial application. I wonder what this administrative intensive process costs us as taxpayers compared to the miniscule savings it initiates by discouraging fraudulent claims? A false economy that was implemented by Ronald Reagan for political mileage in the 1980's. Time for this regulating rule to be revisited! And at the same time, make disabled citizens immediately available for Medicare, no 18 month waiting period.

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.

Dream Time in Missouri

Is It The Drugs?

Feel like I spent all night last night dreaming about Boston. I dreamed about driving to Boston, taking trains to Boston, walking around Boston, finding a doctor's office in Boston, even going to a tag sale in Boston. Why Boston? I haven't a clue! The tag sale was run by wives and husbands of retired policemen and firemen. I had a great time. The weather was icy in my dream, and I feel I spent a lot of time getting places only to turn around and go somewhere else. I'll have to think about it to figure out what my brain was trying to tell me.

I have a huge case of hives tonight. Not huge hives, but lots of them. I am afraid it is my new friend hydrocodone, or else my other new friend, lots o' enzymes made from pork protein. It has been gradually getting worse since I started taking the higher dose of hydrocodone Monday. I didn't take my second dose today because of the hives this evening. I will be taking some vistaryl or benedryl in a little bit - hope it knocks em back a bit - they are starting to grow together now into bigger hive humps. And I'm super itchy - hoping I don't have to epipen myself because that then means I have to go to the ER. Double sigh.... The Headache is acting up also, not sure if it is from the allegic reaction, or if it just likes the hydrocodone...Triple sigh...

Went into work today trying to make up for time missed last week. Frustrating day, didn't get anything accomplished. Frustrating weekend - wonder if you can get an allergic reaction to frustration??

On a sadder note, my cousin Harold died last week. He had just been diagnosed a few days ago with advanced lung cancer. The nurses were attempting to remove some fluid from his lungs from the cancerous pneumonia, and he just collapsed and died in an instant. I am sorry that his warm presence is no longer in this world with us. I pray that I will be so lucky when my time comes, that God in His mercy will give me a quick decisive end. I am sad that because of my health and my Mom's health we won't be able to go to the memorial service.

Exhaustion

Ready for a New Week

I muscled through my client visit last week. I was in training mode, which for me is a high energy type of performance. When you train you are sorta dragging everyone along with you down a certain path. Some want to skip ahead and get lost in the forest, and some are just not physically up to the task and lag far behind. The skill is keeping all my little trekkers together and pointing in the same direction. You have to convey interest and energy to keep them grouped together and you have to pay attention to what they are doing so they don't lose their way.

Pacing is another energy expending effort. In order for the class to feel confident in their computer skills AND to get them up to speed, you change your pace of delivery. At first it is slow, then faster, faster faster the longer you train the same session, hoping by the end you can have them almost up to a normal speed.

At the best of times, training is very tiring for me. I tend to stand and walk around the training room so I can observe and help the students. Since the radiation therapy many years ago if I exceed standing for a half hour (and generally I am on my feet eight hours when training) the nerve pain starts up. Then having The Belly hurting, and The Headache hovering, and not daring to eat anything much I pretty well wore myself out. Hopefully my students didn't notice! I took great pains (literally!) so they wouldn't know how tired I was.

There were plenty of people to observe from work - two programmers, and two developers working on a new product - hopefully they absorbed enough that if I fall apart physically before the middle of January they can pick up the slack! My students at this client were wonderful, a true joy to train. They were interested, they were quick to learn, they brought up pertinent questions, and they had a positive attitude - all I could ask of a client and a class!

I am very tired and exhausted today. I have not been able to do much this weekend except rest, but hope I am finally on the mend. My left eye is droopy and my face hurts and The Headache is trying to attack but I am medicating it to keep it in its place. The Belly is hurting but not as much as last week. I am optimistic even though it is past 3 AM and I hurt too much to sleep that tomorrow will be better yet! Looking forward to a great week next week. Belly don't disappoint me!!

Work Day - Yeah!!!!

Dammed Demand

I waited out the pain this morning, and got myself to work. I was able to work until five, and then come home and work some extra hours this evening. Today I fielded a lot of questions while trying to catch up at the same time - it was like a torrent of flood water flowing over a dam drowing me. I was glad I was able to make sense having been off so much! I didn't take any type of pain relief with me since I knew I would be tempted to take it so tonight I am paying the piper and the pain meds are not keeping up. Ah, wishing for a perfect world where The Belly behaves!

I am trying to hold it together this week because Thursday we are going to a client to do some training. This time I will have a group going with me to observe and document the training for support purposes and future training sessions. Thank heavens! In the last two years we have had two different persons who were supposed to be my training backup and neither one worked out. They just weren't good travelers - since sometimes we are on the road for days at a time so being a good traveler is pretty important. You have to play well with others when you are stuck for days in the same sandbox as a bunch of other people.

I can travel by myself or in groups, doesn't phase me either way. When I was a project manager I traveled quite a bit by myself and it never bothered me. The worst part of traveling in groups is sharing transportation - you don't have any autonomy. I'm thinking of travel because my boss told me that we have a bunch of installs already lined up for next year, and they are strung all over the U.S. Trying to get the old pancreas back in shape before the marathon starts because I need the stamina. Hopefully we will get some new persons to help, that way I won't have to be gone as much. Hopefully I will still be able to work...sigh....

The Headache is trying to rabble rouse this evening - there is a weather front coming in and I am sure that is why it is worse. The stimulator is keeping ahead of it so far! Hoping that tommorrow will be better.

On the Road Again

Hopefully on the Mend

Tomorrow I'm back on the road for work. A day or two at a new client's location, doing some preliminary work to get ready for the upcoming installation. Hoping that The Belly and The Headache behave themselves. I am bringing many changes of clothes in case my myriad digestive problems manifest themselves with urgency.

These new clients are very organized and it is always great to go and see them, as a lot gets accomplished in a short time. I know they are nervous about the change over to our system, but they are preparing in the best manner possible and will do great!

Driving is a problem for me lately. I fall asleep at the wheel, even on my normal 45 minute commute. I have to pull over and sleep and then go again. I thought it was the occipital stimulator but now I am beginning to think it is another manifestation of The Headache. I had the stimulator turned down to the imperceptable level for the last couple of days to rest my head which had been getting sore from over stimulation - kinda like when you wear a ponytail too tight and your scalp gets ouchy - and I still almost fell asleep going home tonight. I guess I am just going to have to factor in extra time to get anywhere because of this. If it gets worse I may have to quit driving until I can figure out what is going on, as I don't want to hurt myself or anyone else from my own negligence.

My new compounded medicine seems to work just fine. I don't think I am absorbing as much medication as I should but am afraid to double dose myself. The effect of the transdermal delivery is different, very subtle as if it takes a while to get where it needs to go. Hoping this will put the whammy on the remnants of The Headache!

P.S. I can't think of this song without thinking of my Aunt Vi, who I remember in one of her joyful moments singing this song while she danced in her houseslippers and housedress at my uncle's house, swishing her skirt and doing some fancy footwork! There was a lady who lived life in the moment.

Going Down In Flames

Me and My Pancreas

I now have an appointment with Dr. Gnome in St. Louis on October 16th. I talked with his nurse, and they are requesting more records from my gastroenterologist's office since they didn't include anything from my recent hospitalization, or some of the lipase tests I have had over the last nine months.

Wasn't able to work a full day today as The Belly hurt bad enough that the mild pain killer I took at work didn't touch it, so I drove home and medicated with stronger stuff. This still did not completely kill the pain but it made it tolerable. The pain seems to increase in the evening, so the second dose I took at about 9:30 just isn't doing too much. I'm hesitant to go to the doctor about this before the Dr. Gnome visit because I run the risk of hospitalization again.

My daily meal plan at this time is one meal each day of a poached egg and a piece of toast with jelly no butter and about a third of a cup of applesauce, eaten with pancreatic enzymes. Starting to feel the effects of not being able to eat, rather weak, but I have had to do this for months before so I know it is possible. Have been hydrating much more as I was instructed in the hospital but this has worsened both the diarrhea and the incontinence issues I have from the radiation therapy.

I am going next Tuesday to Washington University in St. Louis to be seen concerning the long terms effects of radiation therapy. I found information while researching this for radiation neuritis in the lower spine, and this seems to match many of my leg symptoms. The problems are not resolving, but keep getting worse and I am concerned about what the end result will be. The weakness is a big issue, since continued standing and walking make it worse, making it harder and harder to travel and to do my work when I am at a client location where I have to walk and stand a great deal. I'm hoping these physicians will have some new ideas on what I can do to make the symptoms better tolerated even if we can't make them go away.

ERCP Gnomes

Yet Another Specialist

Before The Headache, I had problems with pancreatitis. The problems started in 2006, got worse in 2007 and then I had a pancreatic and billiary sphincterotomy for papillary stenosis (Sphinter of Oddi Dysfunction Type I) done by ERCP in November 2007. I came out of that procedure with The Headache, but the pancreatitis seemed to resolve itself.

I was hospitalized this month for acute pancreatitis, and now am told I need to see the ERCP specialist again. This is my third bad flare up of pancreatitis in less than a year, and my second hospitalization, so I guess something needs to be done, but I'm not looking forward to another procedure. I was hoping the pancreas would calm down after I quit taking the indomethacin and the toradol, but no such luck. I'm not sure what can be done at this point. When I had the sphincterotomy I was told that 100% of these would need to be redone at some point. Just wondering if I have gotten to that point....

The ERCP specialist (nickname Dr. Gnome) is very well-respected and skilled. From the demerol drugged memories I have of him from 2007 he looked like a little yard gnome - apple cheeked, happy, with a cute little curl on his forhead. I was sitting way up in the air on a flouroscope table so he is also foreshortened in my memory, making him yard gnomishly small. He had a surgical hat on, not a big red pointy hat, which was a disapointment. I sure hope I didn't tell him how cute he was, but knowing me and demerol I'll bet I did! My brother told me that Dr. Gnome was not short at all, but I just can't get that image of him standing there in his fluoroscope apron with his tidy surgical garb on looking like he was about three feet tall, out of my head. He was soooooo cute!

Dr. Gnome's office is supposed to call my gastroenterologist's office to get this scheduled. The last time I went to see Dr. Gnome I thought it was just a consultation but nope, the next day I had the ERCP and pancreatic manometry and the sphincterotomy done. I wasn't prepared for that, but this time I am going to ask more questions about the appointment.

I'm not as down this week as last, have just a little more energy and not quite as exhausted. Wasn't able to work yesterday, but worked today, and hope to work a full day tomorrow and the rest of the week. I'm just sick and tired of being sick and tired.

The Headache is behaving itself so far this week, with every day having some painful jabbing spikes of pain, but overall pain levels are way way way down. Wishing I could say the same for The Belly.

Worked All Day for the Sugar In My Tay

Looking Forward to Tomorrow

Whipped out several projects today, including one that has been bothering me for a few months. My poor old brain was so overloaded with The Headache the logic circuits where flaking out on me. Now that The Headache is fading the logic is coming back - didn't know if it would!

Perhaps my logic wasn't working because I wasn't able to do my "thinking" walks. Since I began working many many moons ago when I am stuck on a problem I take a "thinking" walk to mull over my options. If the problem is really bad I will wait overnight, and give my brain instructions to fix the problem while I sleep. Until The Headache came along, my brain was a pretty obedient instrument that responded well to these techniques. The Headache bolloxed all that up.

One of the bosses today said I was becoming more and more of a coder (as in programmer). Sigh. I enjoy the problem solving bit of coding because it is like a puzzle, but to sit and spin out code every day is not my forte. They are such nice folks to work for I just can't complain. We are short handed while some people are on vacation and others are on FMLA and others are working conversion projects. At least my mind is working at almost my old pace. I think by next week I may be up to speed. Woo Hoo!!!

The Headache is still getting more painful at certain times of the day/night. Not sure if any remedy will completely rid me of that. The Headache wakes me in the wee hours of the morning and sometimes I can't sleep. Last night and tonight and Sunday night have been problems. Then I fall asleep getting dressed in the morning. This plays heck with me getting to work on time. I wake up in the oddest places, but mostly I fear falling asleep while driving. I almost went through a red light yesterday morning because I was so tired. Next hurdle to jump - fatigue.

Life's Been Good to Me So Far

Singing at Work

Worked a nine hour day today! Woo Hoo! And I'm still doing good! Joyous day!

I realized this afternoon that I was singing while I worked. I used to do this all the time but its been over a year since my natural bubbliness had come perculating out unforced. What was I singing? Joe Walsh's "Life's Been Good".

Being spontaneously happy made do my crazy dance down the hallway at work. Ah, if you could only have seen the footwork! A fantastic day all around.

My Ford Taurus doesn't do 185, but if I hadn't paid my speeding ticket from last winter I would have lost my license and not been able to drive!

So Far So Good

Another Day in Headache Land

I think The Headache is trying to foil my plans this week. Despite changes to stimulator settings, and much ice on the noggin (I even took my ice bag with me to work today) I would just call today a semi success. Yes, I managed to work 8 hours today, but just barely. By the end of the day I turned off the lights in my office and was having a hard time concentrating on anything.

We had a meeting on some QA testing I had been doing, and that went well - at least I think I was coherent! The kids that have been working on the new product have been doing a fantastic job. A definite drawback is that healthcare is a funny industry, and there is no where you can really get the business background other than working in healthcare, so they had a few misses but mostly they were hitting the balls out of the ballpark. Their product looks great, is fast, and just a tad bit too mouse driven for me, but probably great for the majority of users. I got some keyboard tips from them so I can try the screens with keyboard shortcuts to see if I can get faster yet.

Called Anthem about the non-network payment. At first the rep suggested I get Cleveland Clinic to resubmit the bill. I suggested they check their own paperwork, since all other claims paid as in network. The rep then tried to say they used the wrong NPI number. I suggested again that someone at their location had processed the claim incorrectly. The rep then said hang onto the check, we will want our money back, I'll give this to an adjuster. The last time I had that happen was not good. Nobody, and I mean NOBODY at Anthem did what they were supposed to do until I raised the roof. I realize they are constantly reorganizing and revamping things, but hopefully not at the expense of doing daily business accurately and completely. I've worked in the industry so I have some notion of what goes round and round on their carousel of claims. I don't know how consumers ever know that something was done incorrectly when you have to fight to get an answer for anything.

I'm pretty tired this evening. Haven't taken any medication yet, as The Belly decided to start throwing a fit today because I fed it some fast food. I know better, but The Headache was making me feel pretty lousy and I didn't feel like packing a lunch. That's what I get for being lazy! I have jumpy legs this evening which tells me I'm probably in more pain even than I realize.

Tomorrow is Friday, and if I can get eight hours of work in it I will have more than met my goal for the week. Going to put my brain to rest, and medicate The Headache and The Belly. No more fast food for a while! I have set a second goal for myself: canning some green tomato pickles this weekend. I hope I have the brain power!

Not so good today

The Bongos are banging at my head

Going to work today, had a great last two days, today maybe not so good, but who knows where the day may take me? It only takes a little reprieve for my natural optimism to bubble to the top!!!

At Work...Yeah!!!!!

Joyfulness of work

I was able to work again today. Yeah!!! Another five and a half hours in! The bosses prepay us for Thursday and Friday based on work estimates and then we can adjust it the next payperiod if needed - this works great because 99% of us are salaried. However, my work schedule has been soooo bad the last two months, I didn't even try to estimate any time. I'll just take the hit on this paycheck, and if I work any time in the next couple of days, just add it to the next.

The Headache didn't want to be at work, but I made it go. The Headache tried to interfere all day long. I am trying the "just ignore it" method that my cat uses when you try to show her a mouse. If I put my back to it, it just doesn't exist in my universe. It doesn't work so well today, but I'm just not good at it yet, I need practice. I'm sure The Headache will cooperate and give me many more chances.

The Belly was better today, probably because I let it dominate my day yesterday. Not eating or drinking much works pretty well for The Belly. I gave it some vegetables today. Hoping for a good night's sleep!