Saturday, December 31, 2011

New year's day

As seems to always be the case, it's been rather longer than intended since I've updated this blog, and there's a fair amount of news to share.  Not the best pattern, I'll admit, but I guess I should just dig in and start where we last left off.

The new primary care doctor, Dr. Glynn, who is supposed to be a stand in for Dr. Ferguson until she comes back, is a putz.  I'm sure he's a fabulous person socially, and has uncounted merits outside of the realm of his medical practice, but in my unprofessional opinion, he's just fabulously unprofessional himself and is completely useless with regard to actually helping me.  My session with him consisted almost entirely of him sitting there with my chart and reading previous entries aloud to me (apparently because he hadn't bothered to even open it prior to meeting me).  As seems to always be the case with new doctors, he immediately glommed on to my elevated blood pressure as the sole possible cause of my problems, and started me on a new Ace inhibitor, Lisinopril, despite my repeated assurances that every time I started a new blood pressure management med (Calcium channel blockers, Beta blockers, and Ace inhibitors, I've tried 'em all before), my migraines and associated side effects always get exponentially worse.  As a partial response, and to try to limit the horrible spikes caused by these meds, I've given up caffeine again.  If nothing else, it's trimmed my waistline slightly.

There was no help for it but to start taking the new med, in addition to my normal battalion of pills, for a while, just to illustrate that the horrific elevation of effects would take place.  After a month and a half of agony, it was time to stop, despite the message passed through the nursing staff that he "highly encouraged" me to continue taking the damn thing.

Along the way I met with another putz, Dr. Wolman, who was taking over for my previous psychiatrist, Dr. Blumner (a perfectly fabulous woman, who unfortunately was being rotated to another practice).  My appointment with him lasted literally 6 minutes, during which time he simply skimmed through my chart and muttered to himself, pretty much ignoring the fact that I was in the room.  No response whatsoever to my inquiries about worsening memory issues (I'm now intermittently losing events entirely ala Alzheimer's as opposed to the previous mode of at least knowing that I'm missing information and simply not being able to access it), nor issues of confusion and intermittent despondency (little spikes of just overwhelming depression that is nonetheless completely without a specific focus, most of the time, that only last a little while).  His only direct statement to me was "it's clear to me that your appointment was to refill your prescription for Dextroamphetamine", or something very close to that.  Sure, it's nice to have my ADHD med, and it is a controlled substance requiring his approval, but that's hardly the only reason I was there.  It was almost as if I was being summarily dismissed from the principal's office.

I did get the MRI that I'd been waiting for for so long in early December, which went pretty well actually.  If you ever have to get one, trust the technicians when they say that the thing is LOUD.  I got told this three separate times, and still wasn't prepared for the incredible penetrating tones that came through the provided earplugs.  40 minutes is a VERY long time to lie still, although I will admit that it was made significantly more bearable by the mirror contraption that they suspend in front of your face that allowed me to see out of the tube to the control room and the clock on the wall.  Other than having to suppress my normal fidgetyness for such a long time, it actually wasn't that bad, even with the technician accidentally breaking off the needle for the IV in my arm (to put in the contrast fluid) as I came out of the tube.  Didn't hurt much at all, but did get blood pretty much everywhere, leaving the technician a rather long job of cleaning up.

My neurologist ended up calling me the day before my scheduled appointment to let me know that the MRI showed no significant issues, so that appointment got bumped back a month and he had me up my current dose of Gabapentin in hopes of showing more effect.  Thus far, it's been hard to say if it's doing anything for me - honestly it doesn't feel like it's doing anything beyond perhaps keeping away the multi-day long migraines, but it's entirely possible that it's doing wonders and my current migraines would be that much worse without it, considering the pace at which they'd been advancing.  That's something I'm more than a bit terrified of, really; the thought that things will just continue to get worse with no real physical explanation ever found.

Eden ended up in the Emergency room herself a couple of times towards the beginning of December, landing with a rather useless stint at OHSU which provided no help at all, and a much shorter stay at Southwest Washington that nonetheless was vastly better for her.  They hooked her up with a marvelous outpatient clinic, Elohan Place, and got us started with the appropriate paperwork and referrals to continue her care afterward without taxing our already microscopic budget.  Incredibly good people there, both in staff and in patients, and Eden has already been back there to visit a number of times as well as to hold a small knitting class; an event that looks like it may become somewhat habitual for her, based on the initial response.

It's good that Eden will be getting some care through the state programs, since my initial hope for her to be covered through the VA insurance as my caretaker has fallen through for the moment.  We finally got back a decision on my disability case on Christmas eve, no less.  More than a little disappointing, I'm afraid - they flat out denied every aspect of the claim save for my psoriasis, which they rated at 0% (i.e. "we probably caused it, but it doesn't affect you, right?").  For Eden to have been covered, we would have needed a disability rating of at least 30%, so no luck there.  So, now we'll be starting the potentially agonizingly long appeals process at the beginning of the new year.  No word back from the Social Security case, but I'd imagine we'll be hearing from them soonish.



20111224-Happy Holidays


Christmas has been a rather long, but enjoyable, season so far, starting with a run down to my parents' place on the 23rd to celebrate with Tim, followed by Christmas eve at Vivian's and Christmas day at Pat's.  Eden wasn't feeling recovered enough to travel, unfortunately, so she ended up staying in Oregon while I flew out to Minnesota and the Byram clan at Bugbee's on the 27th.  We moved on to Duluth on the 30th to spend some time with Betsy and Jerry, and celebrated New Year's eve with them last night.  Thus far, my migraines have actually been fairly managable during the vacation, staying mostly to evening and night hours while we were at Bugbee's, and being fairly well managed by medication at Betsy and Jerry's, save for during the drive up.

Even with trying to keep my activity level low, so as to keep the migraine demons at bay as best I could, there has been an awful lot to do.  I finally got around to joining the domino addicts at Bugbee's, got some great shots of the girls in the pool (I think!), and got to visit the feral cat colony that Eden and I discovered last year.  I made sure to capture a bit of the experience for Eden, since she couldn't make it - perhaps a few of you that were also unable to attend might enjoy a peek as well (Please disregard the sappiness - I miss her!)





I actually transferred an old audio tape that grandma made back in 2000 to digital format and cleaned up the background noise, one of all of us passing around the microphone and reflecting on years past, so that I could reshare it with the group, but unfortunately the speakers on my laptop just weren't up to providing clear audio at a volume that could be heard, so I'm including it here for people to download if they like.

Christmas 2000 audio file

I also recorded grandma's annual question and answer game this year.  Unfortunately, I didn't think about the fact that I had the video camera set to 60 frames a second, so I unintentionally cut the already horrible lighting levels in half.  I'll try to bring up the lighting a bit in Adobe Premiere when I get home, but for now the audio is pretty good, at least.





I also got to take a few quick group shots of the various family groups - obviously I have more pictures to share than this, but even processing these with just a bit of retouching taxes this poor netbook horribly, so I'll probably leave off the rest until I can get to a real processor and a color balanced screen.



20111229-Lucielle's Group Portrait 120111229-Lucielle's Group Portrait 220111229-Lucielle's Group Portrait 320111229-Bob's Group Portrait20111229-Sue's Group Portrait20111229-Bruce's Group Portrait20111229-Tim's Group Portrait



Finally, mom and Mejken posed for just a moment before we left Bugbee's - aren't they cute, especially mom in her fancy new hat?


20111230-Two cuties, captured!

Time at Betsy and Jerry's has been semi-blissfully quiet - there's been just enough snow to dust the ground and it hasn't been around long enough to turn to dirty slush.  For New Years, we went out to dinner and a movie (the new Clooney film, "Descendants".)  I had to duck out after that due to increasing skull pressure despite repeated medication, but the rest of the group went on to see the Fractals at a local bar, which I hear was quite good.

And that catches us up, for the most part.  Life is strange, confusing, wonderful, and terrifying (especially during the night terrors inflicted by migraines that last through bedtime).  For the most part, I'm in a good place, and so is Eden, although I miss her terribly after only a week away.  I head home in only two days, and though I love spending time with my family, it can't come soon enough.


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