Tuesday, February 16, 2010


*Fucked Up February.

It's been a pretty shitty month so far.  My body is not cooperating at all with the many, many plans my brain has made (like finishing the many blog entries I've started and answering my email backlog), and I'm pretty discouraged by the whole bloody affair.

At the core of it all is exhaustion.  My prescription insurance plan made my never-ending battle to get adequate rest all the more difficult by deciding that it will no longer cover Ambien CR, the only thing that's enabled me to get even a few hours of sleep each night.  At $550 a month, there's no way I can afford to pay for it out of pocket, so I've been forced to use regular Ambien instead.  It's been a disaster.   Last night, I took 10 mg of regular Ambien at bedtime.  I was quite sleepy before taking it, so I was very hopeful that a good night's sleep would finally be mine.  I slept for just under 30 minutes.  Several hours later, still wide awake, I took two Advil PMs, and got another whopping 30 minutes of sleep.  If I'm lucky, I'll be able to lay down and catch a couple hour nap in the afternoon, but three hours of sleep  day isn't nearly enough to be functional or to keep my pain levels in check.  The exhaustion hits me in rogue waves, knocking me down, disorienting me, and sucking me down into momentary unconsciousness multiple times every day.  

After being remarkably stable for the last few years, my pain situation is getting worse, too, and it scares me.  There's several new forms of severe central pain that have been making regular appearances on the areas of my body that were the most affected by neuropathic pain after my second tumor surgery -- my upper left arm, shoulder, and arm pit, and right hip, thigh, and butt cheek.  These pains started out as intermittent, but are now constant and are not responding to the pain meds I take.  The worst is the raw, burning pain in my arm pit.  I confused it at first with a severe reaction to a clinical strength antiperspirant, but there's no irritation present and the pain gets much worse when anything touches that area.  I'm fearful that these are going to get worse, possibly even progressing to the level of severity I experienced after that second surgery -- what's now my benchmark for level 10 pain.  

As if all this wasn't enough to fuck me up enough to keep me from doing the things I want to do, my lungs have gone to hell for the first time since coming to the USVI.  I'm severely short of breath, my lungs are tight, and even though they sound clear, I'm still having frequent bouts of rattling, wheezing, and bringing up a lot of green gunk (without a fever or any other signs of being sick).  Getting air became so hard that I was hitting my rescue inhaler five or six times a day at two puff per, which is not only a poor management strategy, it can be downright dangerous.  It doesn't help that I'm also dealing with more frequent occurrences of the MS Hug, a spasm of the band of abdominal muscles at the bottom of the rib cage that makes you feel as though an anaconda is wrapped around your midsection and squeezing the life out of you.  After being off of it for the last few years, I've started using the strongest formulation of Advair again in the hope that I'll be able to breathe more easily without being permanently attached to an inhaler or a nebulizer.  I was a little relieved to know that I'm not the only one having breathing problems as of late.  My pharmacist was sold out of Advair when we went to fill the prescription -- he'd sold a month's supply in less than a week. 

Something's gotta give, and soon.  I can't keep going like this.

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