Sunday, May 11, 2014

Timewarp

Ok now, that really has been an obscene amount of time between updates.  Silly how I keep on letting it slide, and more and more dreading the incredible amount of filling in I'd have to do to really bring things up to date.  So, enough of that.  I'm just going to start in here, and if past events don't get mentioned until later posts when they come to mind, that's that.

Point 1:  We were pregnant, and should have shouted that fact to the world here the second we were sure things were sticking.  Long story short, we had a number of semi-minor scares along the way, that all seem to have pretty much resolved uneventfully, and Eden just gave birth to a lovely little girl, River Danielle Scheans Byram, on May 8th.  Due to a few iffy medical concerns, we induced and gave birth about two weeks early, and are actually still in the hospital just to make sure everything lands alright (officially, Eden was discharged today, but River is still on the hospital roll-call and thus we're all still staying here for at least the next day or two.)



Point 2: Migraines continue to be a daily fact of life for me/us, and we're still adapting to making things work.  Three positive bits to bring up on that front - I started Botox therapy in concert with my other medications about 8 months ago (there's a booster every 3 months), and I've got to say, it's helped a great deal - subjectively I'd say that it's nearly on par with medical marijuana for pain control (in terms of overall dimming of pain, as it's a long term effector rather than an interventional that only lasts a few hours), and is easily more effective than all of the rest of the pills I take in concert, so I'm getting a few days in here and there where the pain stays low enough not to need interventionals, and it seems like the maximum level is still lower than it's been - I've only been to the ER for a multi-day event once since starting this therapy.  Obviously, I'm still doing the balancing act of trying to save enough of the prescribed meds for when I absolutely need to be able to drive (they really only dim the pain to let me concentrate just enough to be safe for an hour or two, and they're horrible for my liver and thus limited in how often I can take them), along with over-the-counter anti-inflammatories (also not great for liver and taking too often can lead to rebound migraines), and taking caffeine and marijuana only when in pain and as sparingly as possible to keep my sensitivity up (fortunately both seem to have a short half-life within the body and thus regain efficacy with only a day or two off).  Hrmm... quick side note to those considering medical marijuana for their own issues, if I haven't already preached enough on the subject - for the most part, the cannabinoids (various chemical complexes within the marijuana plant) relevant for medical use are not the same bits that are relevant for recreational use.  As such, the breed that works for you, and the amount you need may be dramatically different than is indicated in common references on the web.  (As an example, most cannabutter recipes I've found use a rule of 1 oz of marijuana to 1 pound of butter - for my own use, I generally only go with an 1/8th for one pound, and that lasts me for a fair bit!)  Short version, go easy to start with!  On the other hand, THC, the single most commonly referenced component, does have its place in treatment - while it doesn't seem to do much for pain directly (based on my own experiences with the more recreational breeds), it can certainly make it functionally less important to you, as most opioid medicines seem to.  Definitely worth having on hand for the really really crappy nights where you just can't seem to catch up to the pain otherwise.  Enough on that for the moment, I think.

The "de novo" review of my case with the VA finally completed a month or so ago, regrettably with no change in decision (I'm still 0% disabled/service-connected, and they're only admitting responsibility for my psoriasis, which is of course maddeningly irritating, but not significantly disabling in itself.)  This has led to a recent search for a lawyer to represent me for the actual appeal (which has in fact been found and contracts signed for representation, etc, etc) - it does mean that she'll get a 20% bite out of my back pay when the appeal is ruled on, but at this point its worth it to be sure that the VA finally listens to what's actually going on here; functionally this ruling will have a huge impact not only on my life, but on Eden and River's as well.  The good part that came from that review and a thorough run through of my VA medical record is that we now have as part of their own internal documentation statements to the effect that I am disabled and that working or going back to school would not be significantly productive.  Effectively, the only remaining sticking point is to conclusively connect the dots and show beyond reasonable doubt that this is most likely a result of my chemical exposure.  The evidence is there, and there are numerous other sailor in similar situations, it's just a matter of time at this point.  Honestly, it really shows how differently the VA system works as compared to a regular health care system; bottom line is that we vets are a cost center and a liability, not a source of profit for the organization entrusted with our care.  There's just not a good way to reconcile this that I can see, and its pretty evident that the overall strategy for cases like mine has devolved to devoting as few resources as possible (they actually reduced their personnel working appeals cases last year while delays in processing continue to increase) to the issue and essentially hoping that we'll give up and go away (functionally a vet that passes on while waiting out the process lands as a win for them.  Boo.)  At this point, according to all of the current information I've been given, I should be standing in front of a judge in somewhere around 2 years and 11 months from now.  There is a minor potential upside to that though; the backpay will have built up enough that even with the lawyer's chunk taken out, a darn good chunk of the cost of a house for our family should be abruptly available.

Other than all of that, our family as a whole is doing well.  We're still trying to figure out what the future is going to look like, but we can't wait to get there (and maybe, just maybe, I'll eventually be able to go back to being able to pass by a kid without having weird flash-forward moments of how life is going to be with River when she gets to that age - the last few months have been crazy with catching myself daydreaming about such things.)

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