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