Reflections on my first Father's Day

River's now been with us for a full 46 days, and yesterday was my very first Father's day. giving me cause to stop and reflect on what has already gone by so fast, and what might be yet to come.  Regrettably, we didn't get a chance to celebrate yesterday due to the fact that Eden is still recovering from her hospitalization due to a deep vein thrombosis that had developed in her left leg, presumably due to her relatively recent C-section.  She's doing all right now, or at least closer to all right, but the whole event was just completely screwed up by almost all of the medical staff involved, causing her to have almost two weeks of steadily increasing pain and dizziness that would have been completely unnecessary if a correct diagnosis had been given the first time we were in the ER, or if anyone along the way had actually listened to our fears and acknowledged how intense her pain was.  Add to that the fact that the advice given to us by the medical professionals involved was actually horribly dangerous with a DVT (affected limbs should not be massaged, nor should she have engaged in significant exercise as a portion of the clot might have broken off and caused a pulmonary embolism or an aneurism) and it just has me completely at a loss.

We're completely flummoxed by the whole thing, but we've decided to look into changing Eden and River's healthcare to another facility once she's recovered, because this is far from the only problem we've had with them, although it is surely the most serious thus far, and we don't want to see how much worse they can do.  Her actual family physician seems competent enough, but is rarely available due to being on call for multiple deliveries most times, and the other doctors and support staff seem absolutely clueless at best, and seriously dangerous, at worst.

Enough angst on that subject; the pain is subsiding, slowly, and her mobility is increasing incrementally - she'll have to be on blood thinners for the next half year, but hopefully will come out of this without long term effects.

We were due to celebrate by going out with both sets of grandparents yesterday, and would have been able to have my brother, Tim, meet his niece for the first time, but we decided that rescheduling was simply the best option, and it should just mean that we get together a bit further down the road.  We don't often get to have both halves of the clan meet, but its always a good time when it happens - most years we've at least been able to pull together Thanksgiving, and hopefully will be able to do so again this year (have I mentioned that this is my very favorite meal of the year?) My mother got to come up with a friend last month and spend a few hours just holding her, and I did get the chance to make a very quick run down to Philomath for time with Dad, but she's already grown so much since then.

It's incredible to me that we've had nearly 7 weeks already with River in our lives, and yet so much has already happened, and changed.  I've always had trouble relating to very young kids, as I just haven't been able to see any signs of pre-sentience for the first few years, but that's definitely not the case with River.  Obviously I have had a lot more time to observe her, and might have felt differently if I'd had similar opportunities with others, but it's hard to state for certain, as I'm hopelessly biased of course. I can't wait for the next few steps towards crawling, vocalizing with a variety of sounds, and having a slightly longer attention span. And of course, there's another big change that I can't wait for: sleeping through the night!.

Its absolutely fascinating to see her evolve, just bit by bit, every day.  Yesterday was a bit of a breakthrough in that respect; she's starting to figure out what hands are for! She first showed this while I was changing her out of PJs that she'd spit up on - I picked her up after getting her in the new set and realized that her momentum felt kind of funny. Looked down, and she had an iron grip on her pacifier... which was still tethered to her previous outfit via a kind of clip on band, making a pretty decently heavy pendulum with the amount of soakage that she'd accomplished. Kept holding on for a good 30 seconds too; long enough to bring her out into the front room and show the grandparents. It probably doesn't sound like much to non-parents, but this feels like a huge step to me - as you can see, when I put her down last night, she immediately grabbed the back of her pacifier and actually held it in place as she fell asleep - she's gotten as far as figuring out that she doesn't want it to fall out, but hasn't quite mastered avoiding accidentally spitting it out!

Its funny, though, reading through the various parenting books that I've obtained - so many of them are oriented on the traditional model of a mother staying home while the dad goes off to work, and that's just not how things end up for us.  With Eden having been sick, a lot of the night time care and off hours has fallen to me, as it just hasn't been safe, much less comfortable, for Eden to jump up at the drop of a hat, or in this case, pacifier.  The texts so often reference the first time a father takes his child out on his own, or babysits alone for a few hours, etc, etc, etc, and its kind of landing with Eden in that role, which is mildly amusing.  I can't wait until she's feeling better so that she has more of an opportunity to engage with River and see the fine granulations of her progress, and not just because I'd love to be able to split the labor.  I haven't had much in the way of sequential sleep for a month and a half now.

Thankfully, her grandma Suzanne has been fabulously helpful in this respect - we've evolved a routine such that she watches over the baby for a few hours in the morning after waking, if she doesn't have plans of her own.  Its not much on paper, but in practice, that extra 2 or 3 hours without interruption is probably all that's stood between me and a clock tower.  Honestly, our family has been marvelous about supporting us through this rough patch, and I think it just shows how lucky we are to have them to count on.  I'm not sure how we would survive without their assistance.

 Sometimes I worry, as Eden does, about how we'll be able to transition to a more independent model over the next few years.  Its crazy how difficult it can be to navigate with minimal funds and neither of us has really gotten very far, emotionally, in accepting our respective disabilities.  That said, I do see some advantages to our situation.  As I said, we have incredible support from family and friends, and River will at least have the advantage of two readily available parents, even if we aren't always fully capable at times.  And she'll always have our love, unfiltered, even when she takes advantage of the fact that we're already completely wrapped around her tiny little fingers.

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.)

Yipes! and other stuff...

Oh my - I've managed to let this blog go by the wayside for way, way too long.  I'm going to accept the self-imposed guilt trip on this one and just state for the record that there will be a catch up post sometime soon.  I just wanted to share a note that I sent off to my VA docs yesterday with all of you, because the very first question I get in any conversation is: "How are you doing lately?"

In short, I'm doing a lot better - not sure how stable the better is yet, but definitely, measurably better.  Also, for those of you whom I haven't spoken to yet on the subject, yes, I do use medical grade marijuana (legally, I have the papers and all that) as an adjunct for pain control.  I want to go into this in detail later, since I think it's an incredibly useful tool, but the short version, since many of you will be voting on some form of marijuana bill tomorrow, is that yes, it is an incredibly effective tool for management of pain, nausea, anxiety, and depression, as well as a myriad of other disorders.  I hope that you'll join me in voting to legalize use in whatever form your state has on the bill - if nothing else, giving illegal drug trafficking a widespread, legal, and taxed price competitor can only improve the overall crime rates in your area.

(If you are a user for this purpose, or are considering obtaining a card, the first thing you should ask your grower is what strains s/he has available, what the approximate proportions of the three major marijuana strains this is derived from [neglecting any positive mutations, etc in the inter-veining generations], and what disorders each strain has shown efficacy for - if they can't answer these questions or at least point you to one of several very good databases online for this kind of thing, thank them for their time and call another grower - my current provider here in Vancouver, ReLeaf is quite good about this; had a well prepared binder with histories, symptoms, and graphs as appropriate for each strain - in fact, due to a quirk in the local laws, they're actually required to deliver direct to you, as it is not legal to have a dispensary building within Clark County.)  Personally, I find that I tend to have the best results and require the lowest dosages with indica dominant strains (tends to make you feel distant and passive) as opposed to sativa strains (tends to make you "high" and hungry).  I'm still experimenting with new strains as they become available, since the highest mix I've been able to find was 70/30 and is no longer available to me; I'd love to compare a near pure strain for efficacy.  One option that I brought up with my grower right off the bat was a well-labeled "variety" pack of what strains he had available, rather than buying a straight 1/8th, etc of one strain.  He was completely helpful and understanding in this respect (he, of course, is also a medmar patient due to a past trauma - car accident, I believe).  It can't hurt to ask for a similar deal yourself when you're getting into this to figure out what works.

Anyway, back to the meat of the post - here's what I had the privilege of sending off to my docs yesterday morning:

Oh my - I've managed to let this blog go by the wayside for way, way too long.  I'm going to accept the self-imposed guilt trip on this one and just state for the record that there will be a catch up post sometime soon.  I just wanted to share a note that I sent off to my VA docs yesterday with all of you, because the very first question I get in any conversation is: "How are you doing lately?"

In short, I'm doing a lot better - not sure how stable the better is yet, but definitely, measurably better.  Also, for those of you whom I haven't spoken to yet on the subject, yes, I do use medical grade marijuana (legally, I have the papers and all that) as an adjunct for pain control.  I want to go into this in detail later, since I think it's an incredibly useful tool, but the short version, since many of you will be voting on some form of marijuana bill tomorrow, is that yes, it is an incredibly effective tool for management of pain, nausea, anxiety, and depression, as well as a myriad of other disorders.  I hope that you'll join me in voting to legalize use in whatever form your state has on the bill - if nothing else, giving illegal drug trafficking a widespread, legal, and taxed price competitor can only improve the overall crime rates in your area.

(If you are a user for this purpose, or are considering obtaining a card, the first thing you should ask your grower is what strains s/he has available, what the approximate proportions of the three major marijuana strains this is derived from [neglecting any positive mutations, etc in the inter-veining generations], and what disorders each strain has shown efficacy for - if they can't answer these questions or at least point you to one of several very good databases online for this kind of thing, thank them for their time and call another grower - my current provider here in Vancouver, ReLeaf, is quite good about this; had a well prepared binder with histories, symptoms, and graphs as appropriate for each strain - in fact, due to a quirk in the local laws, they're actually required to deliver direct to you, as it is not legal to have a dispensary building within Clark County, so you really can't beat them, IMHO)  Personally, I find that I tend to have the best results with indica dominant strains (tends to make you feel distant and passive) as opposed to sativa strains (tends to make you "high" and hungry).  I'm still experimenting with new strains as they become available, since the highest mix I've been able to find was 70/30 and is no longer available to me; I'd love to compare a near pure strain for efficacy.


Anyway, back to the meat of the post - here's what I had the privledge of sending off to my docs yesterday morning:


Good morning all! I am writing this note to report on some new changes that I have experienced recently, to ensure that the subjects therein do not slip my mind during my one on one sessions with each of you, and to be sure that my team is coordinated in terms of strategy going forward; with that in mind, please be sure that a copy of this correspondence reaches Dr. XXXXX, Dr. XXXXX, and Dr. XXXXX.

Firstly, I am overwhelmingly pleased to report that we may have found at least the start of a meds mix (the new cyproheptadine) that shows promise in bringing my symptoms down to a level that is much more survivable from day to day. I must firstly admit, however, that there is an additional variable outside of the VA system that may or may not be relevant, in that my father-in-law convinced me to spend a couple of sessions with his chiropractor in the hopes that she might be able to provide some additional insight and relief. While I did this more or less to humor him, having previously mentally classified chiropractics as a sort of voodoo science, its hard to argue with my current results as well as the deterioration shown via X-rays produced by her office. If someone will point me in the direction of the correct forms, I'm more than willing to authorize your access to my records there.

I began seeing Dr. Bobbie on an average of twice weekly about six weeks ago, one week prior to starting my new medication. Since it is unclear, chronologically, how much her treatments have helped, and how much is due to new medication, I have elected to take at least a month off from seeing her to reduce the number of variables we must consider and to provide a long enough sample of time that we might be able to weight her contributions appropriately. My last session with her was this past Monday and I do not have any follow ups scheduled at this point. As this decision is also in part motivated by the out of pocket cost in seeing someone outside the VA system, it may be appropriate to discuss seeing a chiropractor within the system, or to have her bill the VA for her services; this is something to discuss later, when we have a longer sample of time without her sessions.

As to recent changes in symptoms over the past month or so, I am thrilled to say that I have been having appreciably less pain over less time per day, in terms of migraine, as well as actually having a few days mixed in with almost no pain at all (whereas my previous level has allowed for a glorious day "off" of pain perhaps once every three to four months).  I have gone from sessions lasting 6-8 hours a day (and sometimes multiple sessions per day) with pain capping in the 6-8.5 pain scale range on average to maybe 3 or 4 hour sessions that range from 4-7 on the scale. My allotted dosage of Amerge/naproxen 3 times a week (so as to avoid liver damage) has been perceptibly more effective, even going so far as to effectively abort on oncoming burst occasionally, rather than just dull the pain somewhat without clouding my judgment, which, as I have previously mentioned, had relegated my usage to "saving" those three doses a week for the times when I absolutely need to be coherent or have no choice but to drive myself somewhere.

The level of marijuana use that has been necessary to bring the pain down to a bearable level outside of the Amerge applications has also gone down tremendously, going from needing 3-4 sessions with the water pipe over the span of an attack to only 1 or 2, and allowing me to at least occasionally use a vaporizer instead if the onset is slower. In short, I'm spending more time coherent, and less time absolutely miserable, which has done wonders for giving me hope that I might be returning to the possibility of having a central focus outside of my illness. On the other hand, there do appear to be some side effects, some of which may be due to the medicine's interaction, and some that may just be psychological, or perhaps a mix of the two.

The first of these is the fact that I seem to be stuck in an almost hyper/manic state, needing to constantly get things done and keep moving - I'd suspect this one is entirely due to simply having more "useable" time each day; I've gotten in the habit of trying to stuff all of the things that I need to get done into one or two hours a day, and I can't seem to consciously come out of that state. My ADHD and memory issues have also seem to have increased appreciably, leading my wife to characterize my behavior, perhaps not unjustifiably, as that of a newborn puppy.  I don't want to re-introduce my ADHD meds yet as a possible way to mute these symptoms, but it's a subject that I'd like to re-visit in the new year, when the question of what is helping and what isn't is clearer.

I've also been having enormous troubles sleeping through the night; averaging somewhere in the range of 2-5 hours nightly, and have been having extremely disturbing and vivid night terrors nearly every day for the last month or so. Fortunately, my wife has been incredibly understanding and comforting during these times, but I am landing with at least a half hour of difficulty in sorting out real events from dream issues each time this happens, and on numerous occasions have had to be corrected as to what has actually been said or done after the fact (I.e. separating conversations that I've had with her in dream from ones I've had in real life). My body does seem to have adapted to the tiring effects of my various medications, it seems, and I am currently out of my Zolpidem - I'll be asking Dr. Smith for a refill when I see her in a few hours.

Finally, my skin seems to have increased immeasurably in oil production, leading to quite uncomfortable breakouts. On the other hand, my personal interactions and anxiety issues seem to be moving in a positive direction, so it's not all bad (that alone might be attributed to a change in self perception, as I am moving significantly closer to feeling like a participating member of society again). I do want to be clear on one point; I am absolutely overjoyed at the positive changes that seem to be coming about, and if I have to spend the rest of my life as a pimply, sleepless, wound-up labradoodle to achieve even this level of pain control, I'm more than ok with it. I just want to make sure that every one is aware of what has been going on. It's possible that all of these variations are just part of the normal wiggle of my cycles (I.e. I've gone back to prodrome expressing more as dizziness and visual distortion lately, as opposed to nausea, aphasia, and lack of co-ordination/concentration), but I have hope.

As a parting thought, I'd love to start working more on my health in terms of exercise during the coming winter months, but have always been challenged when it comes to activities that amount to mindless repetition without engaging purpose; would you happen to know of a pool that might be available free or cheaply to veterans and their dependents in the Portland/Vancouver area? Until my battle with the disability board comes to fruition, the monthly stipend provided by social security disability doesn't stretch too very far when it comes to supporting two people.

Thank you for your time,

Sincerely,

Josh Byram (503)916-9367

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.

 

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.

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?

Drifting along

There's been a lot going on in the last few months, and yet it feels as though the span has been meandering slowly from point to point to me - strange, but a nice contrast to how things have been, I guess.

We had two more scares at the ER in the intervening time, in addition to Eden's December visits.  Firstly, Eden's mother, Suzanne, had a deep vein thrombosis (blood clot) in her leg again, ultimately leading to a minor pulmonary embolism.  Fortunately, having been through it before, she recognized the symptoms and got to a hospital quick, rather than letting things fester while hoping to get better.  Aside from some really nasty pain requiring extensive medication, she seems to have pulled through the ordeal in good shape and good spirits.

Our other casualty was Eden's aunt Carol, who had a twisted colon, again with massive amounts of pain.  It actually ended up being a good thing, though, as the abdominal ultrasound that was used to help diagnose her also caught a sizable per-cancerous ovarian cyst that the doctors were able to remove without problems.  Bottom line, Carol is down a few inches of intestine, but doing fine, and already up and about.  So far that seems to have capped the expected trifecta of emergencies and things have calmed down again, save for all of us juggling finances and paperwork to try to deal with the bills from said visits.  Personally, I've seen all I can stand of ERs and patient rooms for a good long time.

My own pain has continued to be unresponsive to the latest meds prescribed by my neurologist, Divalproex and Magnesium Oxide, or at least any changes produced have been well within my normal pattern of variation - if anything the episodes have been slightly shorter and sharper.  I did end up with one unbroken migraine over 30 hours that Eden took me to the VA ER for, but that was responsive to the Torridol cocktail this time (Yay!), and the pain broke within a few hours.  Other than that, I've been sticking with the daily attacks, more noticeably aggravated by the strange weather we've been having lately, especially this past weekend (shifting from sunny to rainy to sleeting and back all within an hour).

Given that I appear to be stuck with this for the long term, I applied to the VA's Chronic Pain Management program, but was turned down, as my neurologist didn't want any changes from my medication to be masked by anything from the program - annoying as heck, I've got to say (seriously, I'll take anything that might help right now, and we can worry about _what_ works after we get things working).  I'm trying to figure out how to make things work within the system, but we'll see where it all lands.

On the plus side for the VA, I did get set up with my new psychiatrist, Dr. Smith, who seems quite competent and caring, judging from our initial consult, who in turn has referred me to Dr. Sullivan for some evaluation and work on memory and ADHD issues.  Both have given me a bit of hope that I'll see visible improvement from their work.  I've also just gotten my decision from the social security administration, who have approved my disability.  Seems awfully strange to be happy about being disabled, but hey - it nets out as enabling us to live, a bit.  The backpay from that actually let us knock out an awful credit card that we've been paying on for years (at 26%) that was left over from Eden's first divorce, which significantly helps with our monthly bills.  We also are back to having enough money to have a tiny budget, which is almost perverse.  Among other things, this has allowed us to start having some planned dates again, which has been fabulous for our relationship.  We're still adapting, however - even though we're budgeting for some savings and personal funds, and in the month and change that we've had cash again, I'm pretty sure we've only spent out of our personal funds at all for Valentine's day - still stuck in a bit of a starvation mindset, I think.

There have been a few bright spots as well, including Cassie's birthday party at the local watering hole/pool hall, Sam's - given that we haven't been able to socialize all that much recently, it was an awfully nice chance to catch up with everybody.  Fairy Floss had quite a nice event this past weekend as well, catering cotton candy for a local Bat Mitzvah and making quite a few contacts for new business, from the sound of it.  Other than that, a good portion of the family's free time has been spent sorting through years of treasures that have been amassed at Vivian's old house for an upcoming estate sale.  Lots of work to do yet, but still interesting to see all of the amazing ephemera that she's collected.

Finally, I've officially put together my Notice of Disagreement with the VA's initial decision on my disability and sent it off.  If you're interested in the case, you might like to read through the notice below (which has relevant sections of the enclosures quoted) - I've included the enclosures in their entirety as well for others that are pursuing claims for Atsugi, who will hopefully have a slightly easier time getting their cases heard.


Disability - VA - SIS3 - VA Initial Decision_Redacted.pdf

Disability - VA - SIS3 - Notice of Disagreement_Redacted.pdf
Disability - VA - SIS3 - Enclosure 1 - Joshua A. Byram - Treatment and Medication_Redacted.pdf
Disability - VA - SIS3 - Enclosure 2 - SS Initial Decision_Redacted.pdf
Disability - VA - SIS3 - Enclosure 2 - SS Decision_Redacted.pdf
Disability - VA - SIS3 - Enclosure 3 - 1989Study.pdf
Disability - VA - SIS3 - Enclosure 4 - 1990OnsiteInvestigationIncineratorEm.pdf
Disability - VA - SIS3 - Enclosure 5 - 91_Government_Relationships.pdf
Disability - VA - SIS3 - Enclosure 6 - 1999ArmedForcesEpidemiologicalBoard.pdf
Disability - VA - SIS3 - Enclosure 7 - NAVINSGEN1998.pdf
Disability - VA - SIS3 - Enclosure 8 - APPENDIXFAcuteeffectstable.pdf
Disability - VA - SIS3 - Enclosure 9 - Is this a poisons coverup_ _ The Japan Times Online.pdf
Disability - VA - SIS3 - Enclosure 10 - USDOJPetitionStatements.pdf
Disability - VA - SIS3 - Enclosure 11 - atsugiailments - www.atsugi-incinerator-group.pdf
Disability - VA - SIS3 - Enclosure 12 - Tox Town - Dioxins - Toxic chemicals and environmental health risks where you live and work - Text Version.pdf
Disability - VA - SIS3 - Enclosure 13 - lists.essential.org_pipermail_dioxin-l_Week-of-Mon-19991220.pdf
Disability - VA - SIS3 - Enclosure 14 - 'Do the Right Thing' - Salem-News.pdf
Disability - VA - SIS3 - Enclosure 15 - An Open Letter to President Obama _ Veterans Today.pdf
Disability - VA - SIS3 - Enclosure 16 - Environmental Exposure Claims and Senate Bill S.3378 _ Veterans Today.pdf
Disability - VA - SIS3 - Enclosure 17 - The Migraine-Depression Connection _ Psychology Today.pdf
Disability - VA - SIS3 - Enclosure 18 - PsychiatryOnline _ Psychiatric News _ News Article.pdf.pdf
Disability - VA - SIS3 - Enclosure 19 - Statement in Support of Claim - Louis_Redacted.pdf
Disability - VA - SIS3 - Enclosure 20 - Statement in Support of Claim - Teresa_Redacted.pdf
Disability - VA - SIS3 - Enclosure 21 - Statement in Support of Claim - Chris_Redacted.pdf

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.





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.






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?



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.