Monday, March 26, 2012

Changes

Well, that didn't go as planned...  The somewhat positional post I'd been working on for a week or so has been eaten entirely by the blogspot engine (apparently this has been a known intermittent issue with the "save as draft" functionality for almost four years), and there is no backup or undo.  So yeah, that's going to take a bit of work and headspace to get back on track.

In other news, it actually didn't take long at all to get scheduled for the pain management clinic; my first appointment is on the 11th of next month, contrary to my initial expectations of several months' wait.  Turns out its a good thing, too.  Last Thursday and Friday were almost entirely pain free, which is just bloody unheard of for me (and lead to the cautious hope that having elevated my Depakote by 50% might have helped enormously), but I've had nothing but horribly nauseated rough days since then, spanning many of my daylight hours and always making nights a foggy pain-ridden nuisance at best.  Hope is not quite lost, there, though, as semi-recent bloodwork showed that the effective level of Depakote in my system after 12 hours was only 27% of what is considered a minimum effective dose, due to lack of absorption or metabolism or whatever, and there's still a significant amount that the medication can be increased safely.  I'll be getting the bloodwork redone on this increased dose in just over a week, so we'll see where that goes.

On a more personal note, our little family is going through a rough patch, as our eldest cat, Piranha, is having some serious digestive and bowel issues, leading to distress and massive weight loss.  The thought that we may lose him soon, or even worse, have to make a decision for his comfort, is very nearly unbearable.  It's hard to know what to do in these situations, and to avoid beating yourself up about whatever decisions you do make.  Hopefully our next visit to the veterinarian this afternoon will help in gaining some direction.
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In any case, I'll try to continue updating here as appropriate, but I'm afraid that my concentration and impetus are at a stunningly low level right now, so I'm having to take the small milestones as they come.

Saturday, March 3, 2012

Tiny updates on balance

Yes, yes, I know that it's only been a week or so since I last updated this blog, and I have no realistic hope of making such frequent additions a habit, but I thought it appropriate to separate out a few personal bits of news before embarking on a broader post to follow this (which may take a few days to compose to my satisfaction, given the thoughts I'd like to share).

Firstly, I've finally received a direct response from my neurologist with regard to following up on my request for the chronic pain management program and the phone appointment that came and went without so much as a ring, as well as a few other issues - it may have taken some not-entirely-subtle hints about wanting documentation to track things down and have on hand in case alternate means of redress were necessary, but the current story as I have it is that the nursing staff had a response from my neurologist stating that he was denying my request for assignment to the program as it might cloud the results of my response to his assigned medications.  Contrary-wise, the gentleman in question states that he never saw any such request, did not respond as such, and in fact thinks that it would be an awfully good idea.  Obviously, there are some mixed stories here, but putting aside the question of who is to blame for the two month holdup/denial, I now have a referral to the program.  In point of fact, I just received the small book-sized preliminary questionnaire to fill out today.  While this is quite excellent news and encouraging, I have been advised that the wait list for the program is quite long, so it's more of a step along the way.

Another nice change is the perfectly civil response to my request to transfer my primary care to Vancouver, given that the Dr. that had been assigned to me for most of the past year had moved on (while being out of the office for almost that entire span).  Bottom line, East Portland still owns my case with the duty doctor for the time being, but my reassignment is in motion, which will help a lot in terms of gas and inconvenience (especially when I'm not in a condition to drive - the Vancouver branch is within just a few miles; conceivably I could even just decide to walk it).  In a way, I feel kind of bad about this - on the one hand, I'm absolutely not getting the care I need or expect (by my observation, the VA docs/nurses are composed of 65% useless human beings/35% competent saints), and on the other, I'm just not of the disposition to speak up - somehow the thought of even minorly inconveniencing someone else (and probably receiving their irritation/wrath for doing so) just isn't palatable.  That said, I've been the squeaky wheel pretty much from the day that the VA staff met me - I'm sure I'm not their favorite person.  Ah well, if nothing else, it helps to break me out of overly meek bad habits (used to be, I never even returned items that were sold broken or mislabeled, for the same reason, but Eden's been a big help in working through that).

I also got a chance to meet with the speech pathologist/memory specialist a couple of times.  After some testing and interviewing, we've come to a full stop, of sorts.  Bottom line, on my current medication, ADHD symptoms are still present, though milder.  He feels that that and the escalating memory issues I've been having all come back to the increased migraines over the last couple of years, both directly, and through the associated depression and insomnia.  So, the bad news is that there's not going to be much he can do to help me, but on a possibly brighter note, being able to pull that statement out of my records for the VA disability case might be useful.  He's going to talk things over with my main psychiatrist, but given that I'm no longer in school/working, we've agreed that the ADHD medication may not be necessary (at least on a trial basis) right now, so we're going to try going off of it for a bit to reduce the number of variables that I need to deal with in treatment.

While I've been really suffering with the volatile weather lately (making me think that there might be some level of sinus involvement as well), Thursday was an awfully bright spot.  Seems that the weather finally stabilized enough with the snow actually sticking on the ground that I got my first "day off" from pain in the last six months or so - just some relatively minor discomfort in the evening, not even enough to resort to ibuprofen.  Last night, on the other hand, was epically miserable; I didn't get to sleep until 6am, and spent the hour and change that I did sleep bouncing between wakefulness and nonsensical nightmares about fighting furiously with Eden.  The morning was no less agonizing, and I'm afraid that I was unsuccessful in keeping even a meager breakfast down atop the morning pills.  The good news is that the pain seems to finally be leveling off for the day, and along with it my photophobia, which should mean I'll be able to spend at least a few hours tonight actually seeing my wife.

That's all for this note - lots of little things adding up in just a few days, eh?