Thursday, November 3, 2011

A progress update... or lack thereof

You know, it's odd to look at the timestamp on this blog and see that it's been more than a month since I posted, when it seems like I've only been meaning to update for the last week or so; same old timewarping mind crud again, I guess.  In any case, there's a fair amount to say, even if I'm not completely happy saying it.

To start off with, the trans-esophageal echo cardiogram that I'd been looking forward to for months, that would have potentially brought a solution into range or firmly defused that particular hope, (40% of migraine sufferers have a PFO, and of those that get it closed, 70% see significant improvement in their migraine symptoms, with 20% or so clearing up completely according to current studies) has not happened, and will not happen any time soon.  The appointment was actually made for a normal echocardiogram (not diagnostically useful for spotting a PFO), and the tech that ran it had some serious problems with english, as well as attitude.  I asked him repeatedly before and during the procedure if this was leading to the trans-esophageal exam after the prep, which he said yes to.  Of course, after a couple of swipes of the transducer across my chest, he said that the test was over.  I wasn't able to make myself clear to him as to what was wrong, it seems, although I did manage to convey that a PFO was what we were supposed to be looking for, whereupon he replied that he couldn't tell with this test.  Bottom line, all that that test showed was some minor backflow from the major heart valves, which wasn't terribly significant one way or another with regard to the migraines.

Since that point, I've been trying to get things cleared up, and to get scheduled for the proper procedure.  At first, the reply I got was that this was standard procedure for the VA, that no trans-esophageal was done without first doing a normal echo cardiogram.  Fine with me, lets get that scheduled then.  Well, lets see what your primary caregiver, Dr. Ferguson, has to say.  This is where the whole thing falls apart.  Dr. Ferguson and I made some fairly firm plans together as to what the next diagnostic steps would be, including the trans-esophageal, but I haven't heard from her since then, and her notes don't confirm this (although, ironically, the secure messaging that the VA has for patients to confer with their team does have her last message, including "The trans-esophageal echo-cardiogram is ordered by Cardiology and I will be happy to order that for him .")  Apparently she's been out on sick leave pretty much since the end of September, so I guess it's something fairly serious, and I don't blame her for this mess at all at this point, but it's meant that all I've been doing has been playing phone tag with the nursing staff and whatever doctor happens to be on duty, none of whom have had more than a casual glance at the cover of my records.

At the moment, the last reply I've gotten relayed has been that the trans-esophageal is completely out of the question, because "In light of the fact that discovery of a PFO would not alter management (i.e. there is insufficient evidence to recommend PFO closure for refractory migraine with aura), I agree that bubble study is not necessary."(This is relayed from my neurologist) - apparently the VA simply will not do a PFO closure, regardless of whether or not one is present, so there's no point for them to look for one, because their own research has not been done on the subject. Totally confusing and maddening for me, of course, since I discussed the procedure in detail with both my primary and the neurologist in person.  Bottom line, I can't do anything further on the PFO front until my next neurology appointment in December.

In any case, I've asked to move on to the next treatment stratagem, since the current regimen of Magnesium Oxide and Gabapentin has only been partially effective, and have had a number of not so great side effects that I'd like to get rid of.   While it has managed to keep me out of the ER, the peaks of my pain have consistently been just below the level where I would resort to going in.  Add to this the fact that I've stayed pretty constant at the one to two migraines a day pattern, and the "rescue" medicine that they have for me to take at the onset of an attack is only usable 9 times a month (or 3 a week) maximum, and I'm spending a hell of a lot of time just trying to deal with things, and to strategize exactly when to use those meds, since they only give me a couple of hours of fairly well blunted pain at a time.  The rest of the time I'm stuck using other methods of defocusing that are only partially effective for making me functional - I need more, to be frank.

So now I have an appointment with yet another new doctor on Monday to discuss what's going to happen next (since otherwise I'd have to wait until December to make the next move).  Hopefully the fact that this regimen has been more effective than other methods will lead us to another related medicine that works better for me.  We'll see.

On the plus side, the chest pains that I'd been having fairly regularly seem to have petered out completely in the last month or so, and the cardiology stress test I had a week or so ago came out just fine and didn't show any significant problems.  So that's at least one scary symptom I can take off of the table, at least for now.  No word yet on the MRI that has supposedly been ordered for months now - I called and left a message yet again yesterday, but have received no reply.  I'll be bringing this up at the Dr.'s appointment on Monday, of course; near as I can see, it's about all I can do for that particular issue.

No progress to speak of on the VA disability front - they haven't even responded to my last addition of documentation - the word from my rep was to wait until November on this, and if I hadn't heard from them then, he'd try again to check in on what's going down, so I'll probably go in next week to get that in motion.  Speaking of motion, I did get around to starting my social security disability claim - after talking more extensively with the VA rep, this is going to end up being smarter to do, rather than waiting for the VA to make an initial decision.  Looks like the SS people have their act far more together as well - filing the case was simple, straightforward, and quick.  Honestly, I almost laughed in the gal's face when she apologized to me for the roughly 5 minute wait we had in the lobby.  The usual turn around time for decisions is much lower than the VA as well; they're posting at 4 months average vice the VA's year and change for an initial decision.  So now it's a waiting game with them as well; I'll probably have to go in to their examiners for medical and mental checkups soon, but other than that, I've done all that I can do for now.

Unfortunately, that waiting game has finally reached a point of unsustainability - Eden and I finally hit rock bottom, no cash at all last month, and our respective intermittent incomes haven't been making up the slack by a long shot.  I talked it over with the finance genius for one of my former jobs, Carisbrook, and decided that it was time to crack the 401k that I'd built up with them.  With the economy being crappy for the last couple of years, it's never even achieved parity with the money I put into it - at the time I withdrew my funds, the total was down about $2.5k.  All the same, if I was going to draw from it at any point before I reached 59 and a half years old, this would be the year to do it, since the funds get counted as income, and so far we'd be claiming almost nothing.  Another 20% got lopped off against taxes as I took the money out, but we'll most likely get the bulk of that back, by my calculations, and it won't hurt us any to have another small bump of incoming funds next April.  At the end of it all, we have another half year or so of living at our current expenditure level if we're not too frivolous, and one or both of the disability claims should have a decision before then.

The last month has actually been pretty decent for me otherwise, personally and socially.  Eden and I actually started going to marriage counseling (various big events and my sickness have thrown our mutual stress into high gear, and we needed some help not to take it out on each other), and have gotten hooked up with a fabulous therapist that we both really like.  I realize that it seems horribly straightforward and unnecessary, but having a third party to observe and direct us and essentially say "you two are obviously stupidly in love with each other and just need some help communicating that fact" has been enormously helpful.  We've both been a lot happier since we started seeing him.

We've managed a couple of escapes to Larch mountain, the gorge, and Cannon Beach during the same time, which helps us refuel a bit spiritually, just to get out of the city and share the journey together.  I've even managed to drive a bit of the time, which has been fabulous for taking some of the pressure off of Eden (she's basically been my chauffeur for most of the summer and early fall) - admittedly I've had to rely on those rescue meds for the duration and have been pressing against pain at the same time, but it's still fallen back into the range of doable for a bit.  The Cannon Beach trip was actually a piece of pretty cool timing - we got there just as the tide was out to the farthest point and left a number of really neat tide pools for us to explore.  We only got in a couple of hours there, as my head was sounding warning bells of returning light sensitivity, etc, but it was still exactly what we needed at the time.

Fairy Floss had a really neat event a couple of weeks ago; we paid in to present at "Committed - Portland's Alternative Wedding event", and got a lot of interest from vendors, organizers, and couples along the way - we'll see how it pans out in terms of return business, but it was kind of epic just as a step in the direction of more business outside of the market.

We also just had the pleasure of attending the wedding of two of our good friends recently, Vashon Bench and Jessica Hunger.  Eden was actually a groomsman for Vash, and I got to work as a backup photographer of sorts for another of Vash's older friends, James (aka Bad Mojo Photo).  He does fabulous work, and it was a pleasure to see him take control of the bridal party - I'd hope to attain that level of professionalism some day, but he's been in the photo game for decades longer than I, so I think I've got some leeway in catching up.  He's even turning out to be a pretty cool friend for us as well, just to hang out with, so that's good too.  Unfortunately, neither of us has quite finished processing our respective photos, so the couple will just have to wait to see how things turned out.

So that's about where things are at at the moment - Eden's been down for the count with an especially nasty case of the flu or somesuch since last Monday, so I've been taking care of her intermittently since then, and I'm starting to feel the inevitable onset of the symptoms myself, so that's going to pretty much take care of our weekend, I'd suspect.  Ah well, such is life.