Sunday, May 24, 2009

Pain Week

Some ups and downs this week. The phantom pain - not so phantom to the one experiencing it - has become the focus of my discomfort. The amputation itself was nothing compared to the daily battle with this aggravating nuisance of an invisible foe.

As an amputee, I find so little useful information is imparted to the patient about this evil adversary. There are no specific medications that provide the relief an aspirin may provide for a common headache. The drugs that are used may not be well understood in their actions. More doctors need to subject themselves to this condition in order to spur the research into understanding it better. Yeah, I'm kidding. Maybe.

Typically in the morning the pain is nearly gone but by mid-morning at work I am struggling to find some comfortable position in my wheelchair where the pain is tolerable.

Cutie enjoying my chariot of fire

I had very little sleep on Sunday or Monday, maybe 6 hours total. I did see my CP on Tuesday and got a smaller shrinker. My calf is still at the same size; I suspect my years of running have turned most of that muscle into gristle so it may not get all that much smaller. Tuesday night was also restless, maybe 4 hours of sleep.

Wednesday evening we had some Big Excitement. I had stopped taking the Lyrica the previous weekend or thereabout but found the phantom pain was becoming more obtrusive. I decided to punt back to the Neurontin and took 200mg before going to bed, hoping it would at least make me a little drowsy so I could get some sleep before I collapsed from fatigue.

I did fall asleep and had a feeling that I was able to separate the phantom pain from myself and at least ignore it for a while. Just after midnight my old cat Little decided she needed to visit the litter box so I had to let her out of the room. Jennifer heard me stumbling about and kindly opened the door to the back porch so Little could have a direct route to her destination.

Jennifer fell back into bed and a short time later Little was ready to resume her evening respite at my side and began her plaintive meows at the door. I let her in and noticed my Blackberry's light blinking and decided to check it...the email was an alert that the server room temperature was rising. Also had an email from my tech Tim who was asking about it. I tried to call/email/text Tim to tell him to go check it out to no avail.

So Jennifer and I had to get up and drive into the office after midnight, open the server room doors and set some fans up, and drive home. What had started to be a good night's sleep turned out to be a stressful evening of little sleep for both Jen and the gimp.

Thursday I barely made it through the workday. I had considered taking it off but my tech's hours have been reduced so I needed to be there in the afternoon. By the time I got home and had dinner I was nodding off on the couch. Jennifer suggested I call it night; I was so tired I wasn't sure I could make it to bed. It took a long time to get ready, I felt like I was moving in slow motion, a fish swimming in thick, murky water.

I slept about ten hours Thursday, woke up groggy, muddled through a half day of work on Friday, then slept about two more hours Friday afternoon.

I missed at least two days of PT because I was just too tired to think much about it. Later on Friday I did a light session and then two sessions on Saturday.

We did go out to eat Saturday night to a nearby Italian restaurant, Souri's. A bit of a chore getting my wheelchair in the door. Food was good but the real attraction turned out to be something, someone else as we were leaving. Bill Murray was having dinner behind us with a larger group. Jennifer stood and was staring - is that Bill Murray? - and I was wheeling out of the restaurant, thinking the man might want his privacy. Turns out he was happy to speak to Jennifer - some comment about not being a robot - and I was the greater fool for not making his aquaintance.

Outside I did talk to the neighbor of Bill's manager, we compared conditions; his being a knee that might not be in good enough shape for a replacement and mine, at least my knee is intact and in good shape.


I have started reading the book "Phantoms in the Brain" by V.S. Ramachandran, MD., Ph.D., and Sandra Blakeslee. The main thing I want more information about is the mirror box. I am going to order one if it appears it might help with my phantom pains. I've written my CP to see if he has any experience or knows someone I can contact locally for help.

If you are considering amputation, I would highly recommend seeing what local resources you have to help you deal with phantom pain, to both prepare for it before the surgery and after. I have yet to talk to an amputee who had no phantom pain so be forewarned. In my experimentation it seems the nerve med and a regular pain killer like oxycodone may help but it is minimal, you can only tell the difference by not using any of it. Higher drug levels when you are in the hospital and under a doctors care will make it seem more tolerable, but once you have to deal with reality you cannot remain in that la-la state. I cannot be dopey and drive and do my job so the suffering continues.

I am tired of the pain and only one thing keeps me going, focused, and as Jen likes to say, eye on the prize.

I will fly again.

No comments:

Post a Comment