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
Monday, February 27, 2012
Saturday, December 31, 2011
New year's day
As seems to always be the case, it's been rather longer than intended since I've updated this blog, and there's a fair amount of news to share. Not the best pattern, I'll admit, but I guess I should just dig in and start where we last left off.
The new primary care doctor, Dr. Glynn, who is supposed to be a stand in for Dr. Ferguson until she comes back, is a putz. I'm sure he's a fabulous person socially, and has uncounted merits outside of the realm of his medical practice, but in my unprofessional opinion, he's just fabulously unprofessional himself and is completely useless with regard to actually helping me. My session with him consisted almost entirely of him sitting there with my chart and reading previous entries aloud to me (apparently because he hadn't bothered to even open it prior to meeting me). As seems to always be the case with new doctors, he immediately glommed on to my elevated blood pressure as the sole possible cause of my problems, and started me on a new Ace inhibitor, Lisinopril, despite my repeated assurances that every time I started a new blood pressure management med (Calcium channel blockers, Beta blockers, and Ace inhibitors, I've tried 'em all before), my migraines and associated side effects always get exponentially worse. As a partial response, and to try to limit the horrible spikes caused by these meds, I've given up caffeine again. If nothing else, it's trimmed my waistline slightly.
There was no help for it but to start taking the new med, in addition to my normal battalion of pills, for a while, just to illustrate that the horrific elevation of effects would take place. After a month and a half of agony, it was time to stop, despite the message passed through the nursing staff that he "highly encouraged" me to continue taking the damn thing.
Along the way I met with another putz, Dr. Wolman, who was taking over for my previous psychiatrist, Dr. Blumner (a perfectly fabulous woman, who unfortunately was being rotated to another practice). My appointment with him lasted literally 6 minutes, during which time he simply skimmed through my chart and muttered to himself, pretty much ignoring the fact that I was in the room. No response whatsoever to my inquiries about worsening memory issues (I'm now intermittently losing events entirely ala Alzheimer's as opposed to the previous mode of at least knowing that I'm missing information and simply not being able to access it), nor issues of confusion and intermittent despondency (little spikes of just overwhelming depression that is nonetheless completely without a specific focus, most of the time, that only last a little while). His only direct statement to me was "it's clear to me that your appointment was to refill your prescription for Dextroamphetamine", or something very close to that. Sure, it's nice to have my ADHD med, and it is a controlled substance requiring his approval, but that's hardly the only reason I was there. It was almost as if I was being summarily dismissed from the principal's office.
I did get the MRI that I'd been waiting for for so long in early December, which went pretty well actually. If you ever have to get one, trust the technicians when they say that the thing is LOUD. I got told this three separate times, and still wasn't prepared for the incredible penetrating tones that came through the provided earplugs. 40 minutes is a VERY long time to lie still, although I will admit that it was made significantly more bearable by the mirror contraption that they suspend in front of your face that allowed me to see out of the tube to the control room and the clock on the wall. Other than having to suppress my normal fidgetyness for such a long time, it actually wasn't that bad, even with the technician accidentally breaking off the needle for the IV in my arm (to put in the contrast fluid) as I came out of the tube. Didn't hurt much at all, but did get blood pretty much everywhere, leaving the technician a rather long job of cleaning up.
My neurologist ended up calling me the day before my scheduled appointment to let me know that the MRI showed no significant issues, so that appointment got bumped back a month and he had me up my current dose of Gabapentin in hopes of showing more effect. Thus far, it's been hard to say if it's doing anything for me - honestly it doesn't feel like it's doing anything beyond perhaps keeping away the multi-day long migraines, but it's entirely possible that it's doing wonders and my current migraines would be that much worse without it, considering the pace at which they'd been advancing. That's something I'm more than a bit terrified of, really; the thought that things will just continue to get worse with no real physical explanation ever found.
Eden ended up in the Emergency room herself a couple of times towards the beginning of December, landing with a rather useless stint at OHSU which provided no help at all, and a much shorter stay at Southwest Washington that nonetheless was vastly better for her. They hooked her up with a marvelous outpatient clinic, Elohan Place, and got us started with the appropriate paperwork and referrals to continue her care afterward without taxing our already microscopic budget. Incredibly good people there, both in staff and in patients, and Eden has already been back there to visit a number of times as well as to hold a small knitting class; an event that looks like it may become somewhat habitual for her, based on the initial response.
It's good that Eden will be getting some care through the state programs, since my initial hope for her to be covered through the VA insurance as my caretaker has fallen through for the moment. We finally got back a decision on my disability case on Christmas eve, no less. More than a little disappointing, I'm afraid - they flat out denied every aspect of the claim save for my psoriasis, which they rated at 0% (i.e. "we probably caused it, but it doesn't affect you, right?"). For Eden to have been covered, we would have needed a disability rating of at least 30%, so no luck there. So, now we'll be starting the potentially agonizingly long appeals process at the beginning of the new year. No word back from the Social Security case, but I'd imagine we'll be hearing from them soonish.
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.
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.
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.
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.
Tuesday, September 27, 2011
Perception is reality
It's really quite perverse, living with chronic pain and having profound memory issues. On the bad days, it often feels like it hasn't been quite this bad in a while (even if yesterday was actually quite awful), and on the good days, you begin to doubt that it was ever really all that bad, save for a few memorable incidents. It really screws around with your self image, because you never quite feel like you can trust either your own opinions or memories.
Since I've been working with the VA to control things, I've tried to be more faithful in recording changes and statuses regularly, but it's hard to figure out exactly what to say, and when. There's little objective value in just repeating "it really, really hurts, and makes me want to vomit", so I'm afraid that many of my entries tend to be needlessly specific and clinical, even if no one else will ever see them. Even so, it's easier for me to believe myself when I can more clearly see the trends and spikes in depression and pain. That helps, some, but doesn't hold for long. It's really, really messed up to be in the middle of a horrible attack and still feel like you might be a hypochondriac.
I'm a little conflicted right now, too, about the concern the family is showing for me. It's gotten so that nearly any time I'm in pain or look uncomfortable (she often sees me holding my head or cringing from light long before I'm consciously aware of anything more than discomfort), Eden will immediately ask me "Do you need me to take you to the ER?"
It's the right question to ask; I know she only wants to help and in turn feels the same incredibly intense need to fix things that I do when she's in pain, but at the same time, it makes me feel terribly odd, every time. On the one hand, the VA isn't really set up to do anything but send you to the ER if you don't already have an appropriate appointment, and on the other, I sure as hell don't want to crowd the only VA emergency room in the Portland area when they routinely only have 2 doctors on duty at once. So, again, I tell her "No, it's just a bad day.", which has absolutely been the truth recently, but the bad days have been coasting along at just below crisis level.
On the plus side, I'm still getting the occasional block of daylight hours that ends up relatively symptom-free, even if the mornings and evenings aren't doing so hot. The nausea had even been staying away entirely for a few days in a row last week, so Eden, Cassie, and I hopped in the car on Friday and went up to Home Valley to swim, just past Stevenson, WA. It was actually my first run there in months, even though the girls have been heading there regularly all summer, as their respective tans attest. The length of the trip and the associated twists and turns just made it an impossibility while my stomach was even slightly twitchy, as our few aborted group attempts prior will attest.
In this case, however, we actually had a wonderful time, something of an appropriate goodbye to the season on the autumnal equinox, and we even got to go by Granma's Gedunk and get a scoop of ice cream before they closed for the year. The heat in the air was much less oppressive there, and it was still pretty warm in the water (I tend to get a bit shy about just jumping in when it's icey.) My head even held long enough for me to take over driving on the way home, as Eden was just bushed.
Yesterday morning was pretty good as well; I got to accompany Eden out to see Vivian and do some housework for her, as has become a bi-Monday habit. Again, restrictions in movement ability have kept me from doing this for months, and I missed seeing her outside of the occasional family group meal. Very odd day, symptomatically, actually - much of the day was simply swept aside by massive waves of dizziness and nausea, fortunately waiting to start until we were already out for sushi with her. I absolutely love pickled ginger on sushi rolls, and it helped my stomach quite a bit for the short term.
Once we got home, we got something of an explanation for the big charge, if not a reason for it. Upon checking,my blood pressure was 30-40 below my average, starting at 57/99 at 73 bpm, and holding in that range for nearly the entire day. Normally, I run very high, staying in the 110-120/150-160 at 100+ bpm, with spikes over the 160 line (official hypertension) when I'm in active pain. Climbed back towards my normal range today, but still feeling pretty off.
It's far to early to make any definitive statements, but all the same, it feels like the new magnesium oxide and gabapentin combo that's supposed to help level out my symptoms over the long term is having some effect - at the least, my answers about the ER hasn't had to be "YES!" since I started taking it almost two weeks ago, and I'm still not quite up to the final level of dosage yet. If only I could get an answer on increasing my number of pills for my rescue meds that I'm supposed to take at the onset of an attack to blunt it (currently I'm allotted 9 pills per month... and I'm having migraines twice a day, most days), I'd actually be pretty happy with the progress over the short term. At the least, when I actually do break down and use one of the rescue meds, it does seem to help noticably, and usually within an hour or so (my last usually took about 2.5 hours to do anything, if they were going to).
We'll see how things turn out. I did receive my results back from the IGE allergen test, and if I'm interpretting the number correctly, I'm not significantly allergic to anything they test for. (Again the double-edged sword - I don't have to give up any major food group for life, but no instant fix from it either).
This Friday is actually going to be rather interesting, or at least I think so. I'm going in for a trans-esophageal echo-cardiogram (an ultrasound probe down my throat, so as to be able to get right up next to my heart and get a very clear picture of the structures.) They'll be looking specifically for a malady known as PFO, or Patient Foramen Ovale. Here's the theory on what it is and why it sounds like a perfect match, to me: When you're in the womb, your mom's lungs are doing all of the breahting for both of you, so there's an open passage in your heart that connects the right and left halves, effectively bypassing your own system. Normally, this closes completely before birth, and the halves are completely independent, with one half pumping deoxygenated blood from the body to the lungs, and the other pumping oxygen-rich blood back out.
If I do have PFO, it means that this passage is partially open again, and may be allowing some de-oxygenated blood to bypass the system, which accounts for so many things, in my head. Not only is it potentially directly responsible for the migraines, but also explains the high blood pressure/bpm (more work to do the job if it's a less efficient gas exchange), the extremely volatile and unpredictable nature of my attacks, and the sudden spikes of heart pain (asphyxiation HURTS, thanks to lactic acid build up, and if the cardiac circuit that actually supplies the heart with oxygen gets a spike of oxygen poor blood, that's just what it would feel like. The good news is that if it is PFO, it should be fixable with surgery. This test and possible explanation actually came from one of my former advisors down at Klamath Falls, as he was actually doing a study on this very phenomenon and mentioned that I sounded like an ideal match in my interview. If nothing else, it's a fascinating theory to me, almost beautiful in the elegance with which is would explain so much.
Since I've been working with the VA to control things, I've tried to be more faithful in recording changes and statuses regularly, but it's hard to figure out exactly what to say, and when. There's little objective value in just repeating "it really, really hurts, and makes me want to vomit", so I'm afraid that many of my entries tend to be needlessly specific and clinical, even if no one else will ever see them. Even so, it's easier for me to believe myself when I can more clearly see the trends and spikes in depression and pain. That helps, some, but doesn't hold for long. It's really, really messed up to be in the middle of a horrible attack and still feel like you might be a hypochondriac.
I'm a little conflicted right now, too, about the concern the family is showing for me. It's gotten so that nearly any time I'm in pain or look uncomfortable (she often sees me holding my head or cringing from light long before I'm consciously aware of anything more than discomfort), Eden will immediately ask me "Do you need me to take you to the ER?"
It's the right question to ask; I know she only wants to help and in turn feels the same incredibly intense need to fix things that I do when she's in pain, but at the same time, it makes me feel terribly odd, every time. On the one hand, the VA isn't really set up to do anything but send you to the ER if you don't already have an appropriate appointment, and on the other, I sure as hell don't want to crowd the only VA emergency room in the Portland area when they routinely only have 2 doctors on duty at once. So, again, I tell her "No, it's just a bad day.", which has absolutely been the truth recently, but the bad days have been coasting along at just below crisis level.
On the plus side, I'm still getting the occasional block of daylight hours that ends up relatively symptom-free, even if the mornings and evenings aren't doing so hot. The nausea had even been staying away entirely for a few days in a row last week, so Eden, Cassie, and I hopped in the car on Friday and went up to Home Valley to swim, just past Stevenson, WA. It was actually my first run there in months, even though the girls have been heading there regularly all summer, as their respective tans attest. The length of the trip and the associated twists and turns just made it an impossibility while my stomach was even slightly twitchy, as our few aborted group attempts prior will attest.
In this case, however, we actually had a wonderful time, something of an appropriate goodbye to the season on the autumnal equinox, and we even got to go by Granma's Gedunk and get a scoop of ice cream before they closed for the year. The heat in the air was much less oppressive there, and it was still pretty warm in the water (I tend to get a bit shy about just jumping in when it's icey.) My head even held long enough for me to take over driving on the way home, as Eden was just bushed.
Yesterday morning was pretty good as well; I got to accompany Eden out to see Vivian and do some housework for her, as has become a bi-Monday habit. Again, restrictions in movement ability have kept me from doing this for months, and I missed seeing her outside of the occasional family group meal. Very odd day, symptomatically, actually - much of the day was simply swept aside by massive waves of dizziness and nausea, fortunately waiting to start until we were already out for sushi with her. I absolutely love pickled ginger on sushi rolls, and it helped my stomach quite a bit for the short term.
Once we got home, we got something of an explanation for the big charge, if not a reason for it. Upon checking,my blood pressure was 30-40 below my average, starting at 57/99 at 73 bpm, and holding in that range for nearly the entire day. Normally, I run very high, staying in the 110-120/150-160 at 100+ bpm, with spikes over the 160 line (official hypertension) when I'm in active pain. Climbed back towards my normal range today, but still feeling pretty off.
It's far to early to make any definitive statements, but all the same, it feels like the new magnesium oxide and gabapentin combo that's supposed to help level out my symptoms over the long term is having some effect - at the least, my answers about the ER hasn't had to be "YES!" since I started taking it almost two weeks ago, and I'm still not quite up to the final level of dosage yet. If only I could get an answer on increasing my number of pills for my rescue meds that I'm supposed to take at the onset of an attack to blunt it (currently I'm allotted 9 pills per month... and I'm having migraines twice a day, most days), I'd actually be pretty happy with the progress over the short term. At the least, when I actually do break down and use one of the rescue meds, it does seem to help noticably, and usually within an hour or so (my last usually took about 2.5 hours to do anything, if they were going to).
We'll see how things turn out. I did receive my results back from the IGE allergen test, and if I'm interpretting the number correctly, I'm not significantly allergic to anything they test for. (Again the double-edged sword - I don't have to give up any major food group for life, but no instant fix from it either).
This Friday is actually going to be rather interesting, or at least I think so. I'm going in for a trans-esophageal echo-cardiogram (an ultrasound probe down my throat, so as to be able to get right up next to my heart and get a very clear picture of the structures.) They'll be looking specifically for a malady known as PFO, or Patient Foramen Ovale. Here's the theory on what it is and why it sounds like a perfect match, to me: When you're in the womb, your mom's lungs are doing all of the breahting for both of you, so there's an open passage in your heart that connects the right and left halves, effectively bypassing your own system. Normally, this closes completely before birth, and the halves are completely independent, with one half pumping deoxygenated blood from the body to the lungs, and the other pumping oxygen-rich blood back out.
If I do have PFO, it means that this passage is partially open again, and may be allowing some de-oxygenated blood to bypass the system, which accounts for so many things, in my head. Not only is it potentially directly responsible for the migraines, but also explains the high blood pressure/bpm (more work to do the job if it's a less efficient gas exchange), the extremely volatile and unpredictable nature of my attacks, and the sudden spikes of heart pain (asphyxiation HURTS, thanks to lactic acid build up, and if the cardiac circuit that actually supplies the heart with oxygen gets a spike of oxygen poor blood, that's just what it would feel like. The good news is that if it is PFO, it should be fixable with surgery. This test and possible explanation actually came from one of my former advisors down at Klamath Falls, as he was actually doing a study on this very phenomenon and mentioned that I sounded like an ideal match in my interview. If nothing else, it's a fascinating theory to me, almost beautiful in the elegance with which is would explain so much.
Wednesday, September 21, 2011
Steamed
Pissed off and right.... you really, really don't want me in that condition. Unfortunately, that's where I find myself, now. I recently got ahold of the initial results of my compensation and pension exams, and I've got to say, I've very rarely been quite this incensed.
The short version of their findings is: "You don't have any significant issues, and even if you did, we didn't do it." Wrong answer, buddy. The examinations in question were completely screwed up, and in several cases, the examiner simply assumed information that was completely incorrect, in effect falsifying information to provide answers that were more favorable to their side of the table. Seriously not good juju, there.
So, basically, I've been spending the last couple of days working with my local rep and putting together an appropriately scathing and articulate response, and gathering evidence that my issues have been acknowledged as probable effects of the toxin exposure I received in Japan, including some fun internal direction to the C&P department specifically on this subject. If you'd like a better idea of exactly what's going on, I've included the full text of my latest statement below, along with links to the evidence I'm submitting.
Also, as a special "treat" of sorts, I happened across a couple of videos that someone shot of the residential complexes on Atsugi while the incinerator was still in operation. Here they are, if you're curious as to what Jessie and I were living in for a couple of years, especially during the half of the year that winds directed the smog directly to us.
The good news is that my new nurse practicioner seems to be significantly better than my last one, and I've got a number of tests scheduled over the next few months that might help me lock down what's actually wrong a little better.
Joshua ********** – Reference – ********** – File # ********** - Statement in Support of Claim 2
(As dictated to, edited, and organized by Eden **********) September 19, 2011
As my ongoing symptoms of migraine and associated secondary effects have continued to worsen over the past several months, I recently requested a copy of my VA medical health record since March of this year, so that I might provide these reports as additional supporting evidence for my disability claim. Among the reports provided were copies of my Compensation and Pension benefit exams, and I must say that I was dismayed, insulted, and incensed by the opinions given, as well as the manner in which these examinations were given (rushed, incomplete, and in some cases, information/answers assumed by the examiner without bothering to ask relevant questions). Further, I wish to take this opportunity to respond to those opinions and to provide further evidence as appropriate prior to the VA rendering an initial decision on my case, so as to avoid the delay and expense that might be incurred by necessitating an appeal to that decision if it were to be based on these opinions alone.
Firstly, I would like to address a number of discrepancies and note a few items in the two records provided to me. Enclosure #1 is my Navy Medical Record, as provided to me upon discharge. I’d like to note that my separation physical was provided by a pharmacy assistant (as noted on Page 12, 23Oct00), rather than an actual physician, and thus may be considered somewhat suspect in thoroughness. When I left Japan (as noted on page 14, 18Jan00), more frequent colds, sinus congestion, and a pattern of progressively decreasing health were documented already, although my symptoms hadn’t increased to the debilitating level that they have assumed in recent years. Pages 15-19 document that I had been given Health and Environmental Fact Sheet, NAF Atsugi #1 (included as Enclosure #3) as part of the move to on base housing with my first wife, Jessie. I should point out that this move was not optional, and was in fact required as soon as space in on base housing opened up – at no point was an alternative to on base housing made available to service members expressing concern over these environmental issues, and the potential effect of those issues was verbally minimized in every possible way by housing personnel. Additionally, my wife and I were located in building 3056, just over 500 meters from the incinerators in question, and thus had very high exposure to the pollutants throughout our time there.
Pages 10, 13, and 22 document the decrease in hearing acuity that I suffered over my term of service. Pages 13, 23-25, and 75-76 document the skin irritation and psoriasis that developed during this time. Pages 14. and 75-76 document the increased breathing difficulty and bloody nasal discharge over the same period. Conspicuously missing are records of the half dozen or so visits to the doctor that I had documenting intervals of increased blood pressure and dizziness/tingling in the extremities during my service in Japan (the headaches that I currently suffer had not increased to catastrophic level at this time, and thus were attributed to this blood pressure increase). I would like to request that copies of my original medical records from NAF Atsugi and CTF 72 Kami Seya be obtained to provide records of these incidents.
Enclosure #2 is my VA Medical Record, as printed electronically on September 14th, 2011. Pages 44 and 49 both list my habits as drinking rarely; in point of fact I have not drunk alcohol since April of this year, at which point I was asked to discontinue my already infrequent alcohol use so as to avoid additional stress on my system. Pages 24, 64, 67, 70, 73, 76, 79, 83, 86, 88, 91, 94, 97, and 101 all indicate that Topirimate is in current use at the time of respective examinations; this was discontinued on 8/01/11. Page 26 indicates that my mother has dementia and that I had lost 10 lbs; it is my maternal grandmother that had dementia, and I had lost 23 lbs at that point. Page 130 lists ADHD as being symptomatic since childhood; this is incorrect – in fact symptoms have only been present since my military service, and I was not diagnosed as having ADHD until 2006 by Dr. Julien ********** of the Corvallis Clinic in Oregon.
Pages 104-111 are the findings of Dr. Dillon on 8/15/11 for my mental health evaluation for compensation and pension. I disagree with his findings on several specific points. I do, in fact, agree with at least part of his statement on page 105, "...Mr. Byram's depression (including memory gaps) is more likely than not caused by his headaches.", and will in fact state unequivocally that my current depression revolves entirely around my migraines and associated symptoms; I would regard my depression as a secondary symptom of same. As to my memory issues, it is unclear to me how much of that issue is directly related to the headaches and how much is a tertiary symptom created by said depression, or if in fact this is an unrelated symptom created through my toxin exposure at Atsugi.
On page 107, Dr. Dillon selected the response: "Occupational and social impairment with occasional decrease in work efficiency and intermittent periods of inability to perform occupational tasks, although generally functioning satisfactorily, with normal routine, self-care, and conversation." – I would more accurately characterize my situation with this response, found on the same page: "Occupational and social impairment with deficiencies in most areas, such as work, school, family relations, judgment, thinking, and/or mood." He also states that "The veteran's occupational and social impairment is due to his psychological distress/depression." – I disagree with this wholeheartedly. My difficulties with school, work, and social life revolve entirely around my migraines, the inactive time required by them, the difficulty in thinking during an attack, lack of concentration and distraction provided by the severity of the pain and secondary effects, as well as the unpredictability of their pattern. Currently, my symptoms have increased to the point that I have migraines lasting 8-12 hours daily, incurring extreme pain, nausea, dizziness, and provide extreme sensitivity to light and sound as well as visual and spatial distortion. Friends and family have noted an increase in my general irritability, a decrease in logical thinking, and a general depressive mood, typified in the most extreme cases by some level of suicidal ideation during the most severe periods. Onset of symptoms has become both rapid and erratic, causing me to have to forgo driving for myself if at all possible since June of this year.
When I was laid off in 2009, part of the reason that I chose not to return to the workforce and instead attempt to change career fields by going back to school was as a delaying strategy to decrease the level of activity required of me from day to day in response to the increasing severity of my symptoms at that time. I had hoped to find some combination of medicine and/or avoidance of triggering effects that might allow me to decrease the impact of these issues. Instead, symptoms have only worsened since that point, eventually leading to a decision to withdraw from school in June of this year. Eventually, I came to the realization that further time at school at this level of medical control would only serve to increase my debt in terms of school loans without providing significant educational benefit.
On page 109, Dr. Dillon typifies my memory issues as: "Mild memory loss, such as forgetting names, directions, or recent events" – I would argue that the selection of "Impairment of short and long term memory, for example, retention of only highly learned material, forgetting to complete tasks", found on the same page, would be more accurate. At this point, nearly all of my memories of times before the last year or so is missing, and is only able to be mildly prompted by photos and letters from those years. The three years that I had with my first wife, Jessie, are almost entirely gone, and in point of fact, I have great difficulty in even being able to call her to mind. More recent events are, at best, blurry and indistinct, retaining only the most general outlines of experience. Insofar as short term memory is concerned, my daily life has become almost entirely dependent upon electronic alarms and aids, such as writing notes to myself for nearly any issue or concern via my mobile phone, as well as prompting by those around me.
Pages 133-153 are the findings of Dr. Tuna on 6/30/11 for my physical health evaluation for compensation and pension. While I do disagree with several of his findings, and will speak to this further later, the most concerning and immediate issue that I would like to address is that several sections of questions were skipped outright during the interview and simply marked as negative. I would like to address those here. On page 136-138, the sections “Genitourinary ROS” and “Abdominal/Gastrointestinal ROS” were skipped entirely and marked negative.
For Genitourinary ROS, I was not asked if there was a history of abnormal flow, urgency, dysuria, hesitancy, testicular pain, scrotal mass, erectile dysfunction, genital lesions, urethral discharge, flank pain, hematuria, stones, urinary frequency, nocturia, urinary incontinence, dialysis, obstructive voiding, repetitive urinary infection. Accordingly, hesitancy and erectile dysfunction are currently marked as negative and should instead be positive.
For Abdominal/gastrointestinal ROS, I was not asked if there was a history of nausea, vomiting, diarrhea, constipation, indigestion, heartburn, hemmoroids, hernia, abdominal mass, abdominal swelling, regurgitation, jaundice, fecal incontinence, post-prandial symptoms, dysphagia, hematemesis, melena, pancreatitis, gallbladder attacks, abdominal pain. Accordingly, nausea, vomiting, heartburn, gallbladder attacks, and abdominal pain are all currently marked as negative and should instead be positive.
On page 138, under Psychiatric ROS, history of speech difficulty, memory problems, and sleep impairment are all currently marked negative and should be positive. I often experience aphasia during migraine attacks, have extensive memory issues as indicated above, and currently experience both insomnia and night terrors. Both page 144 and 147 indicate that I was currently in school at the time of examination, when in fact I had already stopped going to school. Page 145 indicates no history of dizziness, which should instead be positive. Page 149 currently indicates migraine frequency during the past 12 months as “weekly”, which should be “daily”.
Page 150 asks for the effects on usual occupation and resulting work problem, to which Dr. Tuna responded: "difficulty concentrating at work when migraines occur". This is grossly understated, in my opinion, as is the response to "Are there effects of this problem on normal activities?” which is simply “No.” I must admit that I am simply stupefied as to how this is selected as the appropriate response when I am unable to make significant long term plans due to the unpredictability of my issues, am forced to spend many days simply waiting in the dark for the current attack to pass, and must currently be considered unemployable due to the sheer volume of time in which I would be unable to perform job related tasks. In point of fact, many short term trips (to the store and such) have had to be aborted due to rapid onset of symptoms without warning shortly after leaving the house. Quite apart from the “normal” level of discomfort and incapacitation that I have been experiencing up to this point, the severity of my symptoms has continued to accelerate, to the point that I was forced to seek care through the emergency department on 6/28/11 at Southwest Washington Hospital, as well as the Portland VA emergency department on 7/1/11, 8/18/11, 8/21/11, 8/22/11, and 9/08/11. I have also had increasing experiences with migraines lasting multiple days without break.
On page 151, Dr. Tuna states “The condition/disability headaches/migraines is not caused by or a result of service (and/or exposure to environmental toxins). Rationale for opinion given: No medical documentation of headaches/migraines in service (in fact veteran uniformly responded ‘no’ to headaches in all health questionnaires in service). No basis in medical fact to assert environmental toxin exposure resulted in headaches/migraines.” As indicated previously in this response, several records of medical visits documenting intervals of increased blood pressure and dizziness/tingling in the extremities during my service in Japan are missing, and my headaches at that time were within a range that were attributed to this increase in blood pressure, rather than being a symptom on their own. Insofar as these not being related to environmental toxins, I would refer you to enclosure #5, Page 23, and enclosure #9, page 3and 7, which outline headache/migraine associated with exposure. Enclosure #15 specifically indicates that among the toxins personnel were exposed to, carbon tetrachloride, cadmium, chloroform, mercury, trichlorethene, vinyl chloride, and 1,3-Dichloropropene are known to cause headache/migraine.
Also on page 151, Dr. Tuna states “The condition/disability pain due to light sensitivity (causing migraines) is not caused by or a result of service (or environmental toxin exposure). Rationale for opinion given: The only light sensitivity noted in the SMR’s was secondary to a single episode of acute conjunctivitis, which resolved. The conjunctivitis was likely the cause of both the ‘pain’ and ‘light sensitivity’ noted. No subsequent light sensitivity is documented, and none is associated with headaches or pain. There is no basis in medical fact to assert that environmental toxin exposures have resulted in pain due to light sensitivity.” I am not entirely sure as to why this is broken out as separate from my migraines, but my initial headaches were mild enough and infrequent enough that I did not experience or associate light sensitivity with my migraine symptoms until some years after my military service, nor was visual aura prominent enough to be identified as an ongoing symptom.
On page 152, Dr. Tuna states “The condition/disability chronic bloody discharge from the nose is not caused by or a result of service (including exposure to environmental toxins) Rationale for opinion given: Normal nose exam, no medical documentation of any bloody noses. The veteran repeatedly responded ‘no’ to medical questionnaires asking about any nose problems, while in service. There is no basis in medical fact to assert that toxin exposures have caused chronic bloody noses.” This is inaccurate; Pages 14, and 75-76 of my Navy medical record document the increased breathing difficulty and bloody nasal discharge I experienced during my time in Japan. Insofar as these not being related to environmental toxins, I would refer you to enclosure #3, Page 2, enclosure #5, Page 23-24, and enclosure #9, page 3 and 7, which outline breathing issues associated with exposure. Enclosure #15 specifically indicates that among the toxins personnel were exposed to, arsenic, beryllium, cadmium, nitrogen dioxide, particulate matter, sulfur dioxide, vinyl chloride, 1,2-Dichlorethane, 1,2-Dichloropropane, and 1,3-Dichloropropene are known to cause respiratory issues.
Also on page 152, Dr. Tuna states “The condition/disability psoriasis L pre-tibial area is at least as likely as not (50/50 probability) caused by or a result of service. Rationale for opinion given: SMR’s appear to support the diagnosis of psoriasis in the same area identified on exam today. The total amount of skin involvement appears stable or less than initially reported years ago.” This is only somewhat inaccurate, as the psoriasis initially appeared on the upper surface of my left foot and occupied an area approximately half the size of the current area. Pages 13, 23-25, and 75-76 of my Navy medical record document the skin irritation and psoriasis that developed during my enlistment. Insofar as this being related to environmental toxins, I would refer you to enclosure #3, page 7, enclosure #5, page 7 and 23, enclosure #8, page 2 and 12-13, and enclosure #9, page 3 and 7, which outline skin issues associated with exposure. Enclosure #15 specifically indicates that among the toxins personnel were exposed to, arsenic, cadmium, carbon tetrachloride, trichlorethelene, 1,2-Dichlorethane , 1,2-Dichloropropane, 1,3-Dichloropropene, and 2,3,7,8-tetrachlorodibenzo-paradioxin are known skin irritants. In addition to the symptoms specifically discussed in Dr. Tuna’s stated opinions, the nausea that was skipped over in the questionnaire is indicated as a known issue in enclosure #5, page 24, and enclosure #9, page 3 and 7, which outline nausea as one of the symptoms associated with exposure. Enclosure #15 specifically indicates that among the toxins personnel were exposed to, arsenic, cadmium, carbon tetrachloride, chloroform, mercury, trichlorethene, and 1,2-Dichlorethane are known to cause nausea. Also skipped over were symptoms of vomiting, which are specifically indicated in enclosure #15 as potentially caused by cadmium, carbon tetrachloride, trichlorethelene, and 1,2-Dichlorethane, among the chemical toxins personnel were exposed to.
Additional symptoms experienced during or associated with these migraine attacks but not mentioned by the questionnaire are chest pain/angina (mentioned as a potential effect in enclosure #9, page 3, and acknowledged as potentially caused by exposure to beryllium and mercury in enclosure #15), anosmia (acknowledged as potentially caused by exposure to camium in enclosure #15), depression (acknowledged as potentially caused by exposure to chloroform in enclosure #15), dizziness (acknowledged as potentially caused by exposure to carbon tetrachloride, chloroform, trichlorethelene, vinyl chloride, 1,2-Dichloropropane, and 1,3-Dichloropropene in enclosure #15), irritability (acknowledged as potentially caused by exposure to chloroform in enclosure #15), insomnia (acknowledged as potentially caused by exposure to lead and mercury in enclosure #15), along with memory, concentration, confusion, and attention issues (acknowledged as potentially caused by exposure to mercury and trichlorethelene in enclosure #15).
Finally, also on page 152, Dr. Tuna states "Due to the veteran being an unreliable historian, it would be mere speculation to comment on unemployability due to migraine headaches. These headaches do not appear to be service connected in any event." I would respond that I have been as faithful a historian as has been practical under the circumstances, and have given the VA access to all available medical records, given my infrequent medical coverage over the years. The catastrophic effect of these migraines on my employability should be self evident, and the connection of these migraines with my service in Japan should be considered to be well proven, as they are listed as a known effect in several of the attached enclosures, and the latency period of associated symptoms is well documented.
Thus far, my experience with the VA health system has been haphazard at best, with some physicians providing excellent, informed service, and others simply seeming content with barely going through the motions. An example would be the experience that I have recently had with the nurse practioner initially assigned as my primary care giver. While her support staff seemed both eager and adequate, over the six months that I was officially under her care, I spent a total of 45 minutes speaking with her, the bulk of which occurred during my intake interview. Calls for follow up care following ER visits and repeated requests for referral to specialist(s) and additional testing were simply ignored, finally culminating in a necessary request for reassignment to another provider. My current referral to a staff neurologist actually came through the emergency department, after having been berated again during my third visit of the week for not following up with more qualified personnel.
Currently, I am experiencing extremely painful migraines lasting 6-8 hours per session, usually twice per day, and often punctuated by vomiting triggered by the sheer level of pain experienced during intermittent spikes of severity. Secondary effects concurrent with these attacks include dizziness, nausea, confusion, aphasia, aura, visual distortion, light and sound sensitivity. I spend a significant amount of time simply lying in the dark, trying desperately to avoid any additional stimulus that might further aggravate my symptoms, compromising my ability to participate social or productive activities, much less employment. I have also recently begun experiencing periods of crushing chest pain/angina lasting between 5-90 minutes per attack, and have experienced over a dozen of these attacks over the past two months. I’ve had insomnia for years now due to the pain interfering with sleep patterns, and have intermittent night terrors, especially during periods where I pass out while still in pain.
Frankly, at this point I’m very concerned about my situation. I’m scared that the pace and severity of these issues will continue to accelerate, and that further issues associated with my time in Atsugi will continue to surface. The extreme latency of known issues means that I will not likely know all of the long term effects for decades to come. I’m concerned for my fellow service members, who may not be aware of the health issues that have been incurred by their service alongside me in Japan. If it were not for the current severity of my own issues, I myself would not have known of the connections between the smog that bathed our housing units daily and the illnesses I have now, nor would I have known that I was entitled to care through the VA, as I found out last year.
At the time, the command made almost no effort to disseminate information, and minimized any potential risk verbally, despite multiple investigations into health risks and ongoing complaints issued to both the Japanese government and the Shinkampo operators. The sum total of guidance offered to me and my wife was a single 2 page flyer (Enclosure #3) outlining minor short term respiratory issues and a nearly infinitesimal potential increase in cancer rates for a very long length of exposure. We certainly weren’t made aware of the 240+ toxins found during these investigations, nor the additional known diseases and effects likely to be caused by exposure to these. In addition, neither myself nor any of these shipmates that I maintain contact with were contacted about these issues after our period of service in Japan, despite a directive to establish a registry of affected service members.
Further, I’m concerned about the long term effects of this on my mental status. My first wife, Jessie, had numerous health issues during her stay on base, including migraine, bronchitis, depression, and endometriosis, all of which only worsened as her time on Atsugi lengthened. She was driven to attempt suicide twice, and finally passed away in early 2001. I find myself scared that my own path will eventually follow hers, and that I will lose control of my faculties. The progress of my issues has gotten bad enough that my family have become scared of my actions during an attack, and my wife has asked that I carry her information on a prominent and easily accessible card so that she may be contacted if I am incapacitated.
In conclusion, I would invite the VA to examine the enclosed documentation, much of which was generated by the Atsugi command or under direction from the command. If more in depth C&P examinations are required, I will willingly make myself available for the appropriate testing, but would hope that the experience of having my responses to questions about my medical history simply being assumed to be negative without actually being asked would not be repeated. Thank you for your time,
Sincerely,
Josh *******
I hereby certify that the information I have given is true to the best of my knowledge and belief.
Signed 9/20/11 _______________________
Enclosures: Enclosure #1, Navy Medical Record, Joshua A. Byram, 1995-2000, 80 pages [Purpose of inclusion: To provide a complete record of my navy medical history, as given to me]
Enclosure #2, VA Medical Record, Joshua A. Byram, March 7, 2011-September 14, 2011, 200 pages [Purpose of inclusion: To provide a complete record of my VA medical history since joining the VA system on March 7, 2011]
Enclosure #3, Health and Environmental Fact Sheet #1, 3 pages (retrieved from: http://www-nehc.med.navy.mil/downloads/ep/Atsugi/FACTSHT1.pdf) [Purpose of inclusion: To illustrate the sum total of health information offered to myself and my wife upon being moved to on base housing]
Enclosure #4, Compensation and Pension Service Bulletin – October 2009, 8 pages (Excerpt, pages 1-2, retrieved from: http://www.atsugi-incinerator-group.com/CP_Bulletin_Oct_09.pdf?attredirects=0) [Purpose of inclusion: To direct Compensation and Pension personnel to their own internal guidance on this issue]
Enclosure #5 - US DOJ Petition from RADM Haskins on 22Aug97 to Governor Kanagawa.pdf, 28 pages (retrieved from: http://sites.google.com/site/srpusmc/USDOJPetition22Aug97GovernorKanagawa.pdf?attredirects=0) [Purpose of inclusion: To confirm that the USN was aware of environmental hazards at the highest levels, to confirm toxins found within incinerator output, and to confirm known health issues associated with same]
Enclosure #6, U.S. Senate Committee Letter and response from DOD & VA, 9 pages (retrieved from: http://www.atsugi-incinerator-group.com/SOCenvirotoxins09.pdf?attredirects=0) [Purpose of inclusion: Guidance for confirmation of exposure locations and times]
Enclosure #7, VA/DOD Response to Certain Military Exposures, 166 pages (Excerpt, pages 10, 21, 49-62, 76-82, 103, 118-123, 132-134, retrieved from: http://veterans.senate.gov/upload/10_08_09.rtf) [Purpose of inclusion: To provide official dialogue and responses regarding this issue, illustrate the effects on other residents and the extremely limited response by base authorities in controlling exposure]
Enclosure #8 - 2009 NAF Atsugi Health Study, NMCPHC, Executive Summary, 17 pages (retrieved from: http://www.atsugi-incinerator-group.com/NMCPHCJuly09ExecutiveSummaryNAFAtsug.pdf?attredirects=0) [Purpose of inclusion: To illustrate effects of exposure as indicated by the health study, to confirm a number of the known toxins that residents were exposed to, to indicate the inherent limitations assumed by these studies due to non-inclusion and issue latencies]
Enclosure #9, 97 Medical Effects and Pregnancy Study, 8 pages (retrieved from: http://www.atsugi-incinerator-group.com/97MedicalEffectsandPregnancyStudy.pdf?attredirects=0) [Purpose of inclusion: To provide study results for service members still working on base at the time of study as opposed to latent effects, to provide an alternate sampling of known toxins that residents were exposed to]
Enclosure #10, 98 Human Health Risk Assessment Atsugi, 47 pages (Excerpt, pages 14-15, 32-33 retrieved from: target="_blank">http://www.atsugi-incinerator-group.com/98HumanHealthRiskAssessmentAtsugi.pdf?attredirects=0) [Purpose of inclusion: To provide information as to concentrations of known pollutants provided by the incinerator]
Enclosure #11, EPA Mini-case studies, 29 pages (Excerpt, pages 3-5, retrieved from: http://epa.gov/osp/regions/minicase.pdf) [Purpose of inclusion: To illustrate pollutant concentration as derived from soil sampling at various distances from the incinerator]
Enclosure #12, Skywriter, October 10, 1997, Page 2, Captain’s Call, 1 page (retrieved from: http://sites.google.com/site/nafatsugi2/97CaptianCallNotransfers.pdf?attredirects=0) [Purpose of inclusion: To illustrate lack of concern from leadership as well as lack of information dissemination as to the seriousness of health concerns]
Enclosure #13, Email from u00pa2b@cpf.navy.mi on 8-7-98, 2 pages (retrieved from: http://sites.google.com/site/nafatsugi2/97EmaildataPeoplearenotawareonarriva.pdf?attredirects=0) [Purpose of inclusion: To illustrate that, at some level, command personnel were well aware of the seriousness of the situation and that there was a wide disconnect between that level and the level of concern conveyed as appropriate to base personnel]
Enclosure #14, Text of S.3378 as Placed on Calendar Senate, 4 pages (retrieved from: http://www.opencongress.org/bill/111-s3378/show) [Purpose of inclusion: To illustrate senate concern and action with regard to former NAF Atsugi personnel]
Enclosure #15 - Toxin Chemicals that exceeded EPA standards at NAF Atsugi, Japan, 16 pages (retrieved from: http://www.atsugi-incinerator-group.com/health) [Purpose of inclusion: To illustrate known connections between exposed toxins and associated health effects]
The short version of their findings is: "You don't have any significant issues, and even if you did, we didn't do it." Wrong answer, buddy. The examinations in question were completely screwed up, and in several cases, the examiner simply assumed information that was completely incorrect, in effect falsifying information to provide answers that were more favorable to their side of the table. Seriously not good juju, there.
So, basically, I've been spending the last couple of days working with my local rep and putting together an appropriately scathing and articulate response, and gathering evidence that my issues have been acknowledged as probable effects of the toxin exposure I received in Japan, including some fun internal direction to the C&P department specifically on this subject. If you'd like a better idea of exactly what's going on, I've included the full text of my latest statement below, along with links to the evidence I'm submitting.
Also, as a special "treat" of sorts, I happened across a couple of videos that someone shot of the residential complexes on Atsugi while the incinerator was still in operation. Here they are, if you're curious as to what Jessie and I were living in for a couple of years, especially during the half of the year that winds directed the smog directly to us.
The good news is that my new nurse practicioner seems to be significantly better than my last one, and I've got a number of tests scheduled over the next few months that might help me lock down what's actually wrong a little better.
Joshua ********** – Reference – ********** – File # ********** - Statement in Support of Claim 2
(As dictated to, edited, and organized by Eden **********) September 19, 2011
As my ongoing symptoms of migraine and associated secondary effects have continued to worsen over the past several months, I recently requested a copy of my VA medical health record since March of this year, so that I might provide these reports as additional supporting evidence for my disability claim. Among the reports provided were copies of my Compensation and Pension benefit exams, and I must say that I was dismayed, insulted, and incensed by the opinions given, as well as the manner in which these examinations were given (rushed, incomplete, and in some cases, information/answers assumed by the examiner without bothering to ask relevant questions). Further, I wish to take this opportunity to respond to those opinions and to provide further evidence as appropriate prior to the VA rendering an initial decision on my case, so as to avoid the delay and expense that might be incurred by necessitating an appeal to that decision if it were to be based on these opinions alone.
Firstly, I would like to address a number of discrepancies and note a few items in the two records provided to me. Enclosure #1 is my Navy Medical Record, as provided to me upon discharge. I’d like to note that my separation physical was provided by a pharmacy assistant (as noted on Page 12, 23Oct00), rather than an actual physician, and thus may be considered somewhat suspect in thoroughness. When I left Japan (as noted on page 14, 18Jan00), more frequent colds, sinus congestion, and a pattern of progressively decreasing health were documented already, although my symptoms hadn’t increased to the debilitating level that they have assumed in recent years. Pages 15-19 document that I had been given Health and Environmental Fact Sheet, NAF Atsugi #1 (included as Enclosure #3) as part of the move to on base housing with my first wife, Jessie. I should point out that this move was not optional, and was in fact required as soon as space in on base housing opened up – at no point was an alternative to on base housing made available to service members expressing concern over these environmental issues, and the potential effect of those issues was verbally minimized in every possible way by housing personnel. Additionally, my wife and I were located in building 3056, just over 500 meters from the incinerators in question, and thus had very high exposure to the pollutants throughout our time there.
Pages 10, 13, and 22 document the decrease in hearing acuity that I suffered over my term of service. Pages 13, 23-25, and 75-76 document the skin irritation and psoriasis that developed during this time. Pages 14. and 75-76 document the increased breathing difficulty and bloody nasal discharge over the same period. Conspicuously missing are records of the half dozen or so visits to the doctor that I had documenting intervals of increased blood pressure and dizziness/tingling in the extremities during my service in Japan (the headaches that I currently suffer had not increased to catastrophic level at this time, and thus were attributed to this blood pressure increase). I would like to request that copies of my original medical records from NAF Atsugi and CTF 72 Kami Seya be obtained to provide records of these incidents.
Enclosure #2 is my VA Medical Record, as printed electronically on September 14th, 2011. Pages 44 and 49 both list my habits as drinking rarely; in point of fact I have not drunk alcohol since April of this year, at which point I was asked to discontinue my already infrequent alcohol use so as to avoid additional stress on my system. Pages 24, 64, 67, 70, 73, 76, 79, 83, 86, 88, 91, 94, 97, and 101 all indicate that Topirimate is in current use at the time of respective examinations; this was discontinued on 8/01/11. Page 26 indicates that my mother has dementia and that I had lost 10 lbs; it is my maternal grandmother that had dementia, and I had lost 23 lbs at that point. Page 130 lists ADHD as being symptomatic since childhood; this is incorrect – in fact symptoms have only been present since my military service, and I was not diagnosed as having ADHD until 2006 by Dr. Julien ********** of the Corvallis Clinic in Oregon.
Pages 104-111 are the findings of Dr. Dillon on 8/15/11 for my mental health evaluation for compensation and pension. I disagree with his findings on several specific points. I do, in fact, agree with at least part of his statement on page 105, "...Mr. Byram's depression (including memory gaps) is more likely than not caused by his headaches.", and will in fact state unequivocally that my current depression revolves entirely around my migraines and associated symptoms; I would regard my depression as a secondary symptom of same. As to my memory issues, it is unclear to me how much of that issue is directly related to the headaches and how much is a tertiary symptom created by said depression, or if in fact this is an unrelated symptom created through my toxin exposure at Atsugi.
On page 107, Dr. Dillon selected the response: "Occupational and social impairment with occasional decrease in work efficiency and intermittent periods of inability to perform occupational tasks, although generally functioning satisfactorily, with normal routine, self-care, and conversation." – I would more accurately characterize my situation with this response, found on the same page: "Occupational and social impairment with deficiencies in most areas, such as work, school, family relations, judgment, thinking, and/or mood." He also states that "The veteran's occupational and social impairment is due to his psychological distress/depression." – I disagree with this wholeheartedly. My difficulties with school, work, and social life revolve entirely around my migraines, the inactive time required by them, the difficulty in thinking during an attack, lack of concentration and distraction provided by the severity of the pain and secondary effects, as well as the unpredictability of their pattern. Currently, my symptoms have increased to the point that I have migraines lasting 8-12 hours daily, incurring extreme pain, nausea, dizziness, and provide extreme sensitivity to light and sound as well as visual and spatial distortion. Friends and family have noted an increase in my general irritability, a decrease in logical thinking, and a general depressive mood, typified in the most extreme cases by some level of suicidal ideation during the most severe periods. Onset of symptoms has become both rapid and erratic, causing me to have to forgo driving for myself if at all possible since June of this year.
When I was laid off in 2009, part of the reason that I chose not to return to the workforce and instead attempt to change career fields by going back to school was as a delaying strategy to decrease the level of activity required of me from day to day in response to the increasing severity of my symptoms at that time. I had hoped to find some combination of medicine and/or avoidance of triggering effects that might allow me to decrease the impact of these issues. Instead, symptoms have only worsened since that point, eventually leading to a decision to withdraw from school in June of this year. Eventually, I came to the realization that further time at school at this level of medical control would only serve to increase my debt in terms of school loans without providing significant educational benefit.
On page 109, Dr. Dillon typifies my memory issues as: "Mild memory loss, such as forgetting names, directions, or recent events" – I would argue that the selection of "Impairment of short and long term memory, for example, retention of only highly learned material, forgetting to complete tasks", found on the same page, would be more accurate. At this point, nearly all of my memories of times before the last year or so is missing, and is only able to be mildly prompted by photos and letters from those years. The three years that I had with my first wife, Jessie, are almost entirely gone, and in point of fact, I have great difficulty in even being able to call her to mind. More recent events are, at best, blurry and indistinct, retaining only the most general outlines of experience. Insofar as short term memory is concerned, my daily life has become almost entirely dependent upon electronic alarms and aids, such as writing notes to myself for nearly any issue or concern via my mobile phone, as well as prompting by those around me.
Pages 133-153 are the findings of Dr. Tuna on 6/30/11 for my physical health evaluation for compensation and pension. While I do disagree with several of his findings, and will speak to this further later, the most concerning and immediate issue that I would like to address is that several sections of questions were skipped outright during the interview and simply marked as negative. I would like to address those here. On page 136-138, the sections “Genitourinary ROS” and “Abdominal/Gastrointestinal ROS” were skipped entirely and marked negative.
For Genitourinary ROS, I was not asked if there was a history of abnormal flow, urgency, dysuria, hesitancy, testicular pain, scrotal mass, erectile dysfunction, genital lesions, urethral discharge, flank pain, hematuria, stones, urinary frequency, nocturia, urinary incontinence, dialysis, obstructive voiding, repetitive urinary infection. Accordingly, hesitancy and erectile dysfunction are currently marked as negative and should instead be positive.
For Abdominal/gastrointestinal ROS, I was not asked if there was a history of nausea, vomiting, diarrhea, constipation, indigestion, heartburn, hemmoroids, hernia, abdominal mass, abdominal swelling, regurgitation, jaundice, fecal incontinence, post-prandial symptoms, dysphagia, hematemesis, melena, pancreatitis, gallbladder attacks, abdominal pain. Accordingly, nausea, vomiting, heartburn, gallbladder attacks, and abdominal pain are all currently marked as negative and should instead be positive.
On page 138, under Psychiatric ROS, history of speech difficulty, memory problems, and sleep impairment are all currently marked negative and should be positive. I often experience aphasia during migraine attacks, have extensive memory issues as indicated above, and currently experience both insomnia and night terrors. Both page 144 and 147 indicate that I was currently in school at the time of examination, when in fact I had already stopped going to school. Page 145 indicates no history of dizziness, which should instead be positive. Page 149 currently indicates migraine frequency during the past 12 months as “weekly”, which should be “daily”.
Page 150 asks for the effects on usual occupation and resulting work problem, to which Dr. Tuna responded: "difficulty concentrating at work when migraines occur". This is grossly understated, in my opinion, as is the response to "Are there effects of this problem on normal activities?” which is simply “No.” I must admit that I am simply stupefied as to how this is selected as the appropriate response when I am unable to make significant long term plans due to the unpredictability of my issues, am forced to spend many days simply waiting in the dark for the current attack to pass, and must currently be considered unemployable due to the sheer volume of time in which I would be unable to perform job related tasks. In point of fact, many short term trips (to the store and such) have had to be aborted due to rapid onset of symptoms without warning shortly after leaving the house. Quite apart from the “normal” level of discomfort and incapacitation that I have been experiencing up to this point, the severity of my symptoms has continued to accelerate, to the point that I was forced to seek care through the emergency department on 6/28/11 at Southwest Washington Hospital, as well as the Portland VA emergency department on 7/1/11, 8/18/11, 8/21/11, 8/22/11, and 9/08/11. I have also had increasing experiences with migraines lasting multiple days without break.
On page 151, Dr. Tuna states “The condition/disability headaches/migraines is not caused by or a result of service (and/or exposure to environmental toxins). Rationale for opinion given: No medical documentation of headaches/migraines in service (in fact veteran uniformly responded ‘no’ to headaches in all health questionnaires in service). No basis in medical fact to assert environmental toxin exposure resulted in headaches/migraines.” As indicated previously in this response, several records of medical visits documenting intervals of increased blood pressure and dizziness/tingling in the extremities during my service in Japan are missing, and my headaches at that time were within a range that were attributed to this increase in blood pressure, rather than being a symptom on their own. Insofar as these not being related to environmental toxins, I would refer you to enclosure #5, Page 23, and enclosure #9, page 3and 7, which outline headache/migraine associated with exposure. Enclosure #15 specifically indicates that among the toxins personnel were exposed to, carbon tetrachloride, cadmium, chloroform, mercury, trichlorethene, vinyl chloride, and 1,3-Dichloropropene are known to cause headache/migraine.
Also on page 151, Dr. Tuna states “The condition/disability pain due to light sensitivity (causing migraines) is not caused by or a result of service (or environmental toxin exposure). Rationale for opinion given: The only light sensitivity noted in the SMR’s was secondary to a single episode of acute conjunctivitis, which resolved. The conjunctivitis was likely the cause of both the ‘pain’ and ‘light sensitivity’ noted. No subsequent light sensitivity is documented, and none is associated with headaches or pain. There is no basis in medical fact to assert that environmental toxin exposures have resulted in pain due to light sensitivity.” I am not entirely sure as to why this is broken out as separate from my migraines, but my initial headaches were mild enough and infrequent enough that I did not experience or associate light sensitivity with my migraine symptoms until some years after my military service, nor was visual aura prominent enough to be identified as an ongoing symptom.
On page 152, Dr. Tuna states “The condition/disability chronic bloody discharge from the nose is not caused by or a result of service (including exposure to environmental toxins) Rationale for opinion given: Normal nose exam, no medical documentation of any bloody noses. The veteran repeatedly responded ‘no’ to medical questionnaires asking about any nose problems, while in service. There is no basis in medical fact to assert that toxin exposures have caused chronic bloody noses.” This is inaccurate; Pages 14, and 75-76 of my Navy medical record document the increased breathing difficulty and bloody nasal discharge I experienced during my time in Japan. Insofar as these not being related to environmental toxins, I would refer you to enclosure #3, Page 2, enclosure #5, Page 23-24, and enclosure #9, page 3 and 7, which outline breathing issues associated with exposure. Enclosure #15 specifically indicates that among the toxins personnel were exposed to, arsenic, beryllium, cadmium, nitrogen dioxide, particulate matter, sulfur dioxide, vinyl chloride, 1,2-Dichlorethane, 1,2-Dichloropropane, and 1,3-Dichloropropene are known to cause respiratory issues.
Also on page 152, Dr. Tuna states “The condition/disability psoriasis L pre-tibial area is at least as likely as not (50/50 probability) caused by or a result of service. Rationale for opinion given: SMR’s appear to support the diagnosis of psoriasis in the same area identified on exam today. The total amount of skin involvement appears stable or less than initially reported years ago.” This is only somewhat inaccurate, as the psoriasis initially appeared on the upper surface of my left foot and occupied an area approximately half the size of the current area. Pages 13, 23-25, and 75-76 of my Navy medical record document the skin irritation and psoriasis that developed during my enlistment. Insofar as this being related to environmental toxins, I would refer you to enclosure #3, page 7, enclosure #5, page 7 and 23, enclosure #8, page 2 and 12-13, and enclosure #9, page 3 and 7, which outline skin issues associated with exposure. Enclosure #15 specifically indicates that among the toxins personnel were exposed to, arsenic, cadmium, carbon tetrachloride, trichlorethelene, 1,2-Dichlorethane , 1,2-Dichloropropane, 1,3-Dichloropropene, and 2,3,7,8-tetrachlorodibenzo-paradioxin are known skin irritants. In addition to the symptoms specifically discussed in Dr. Tuna’s stated opinions, the nausea that was skipped over in the questionnaire is indicated as a known issue in enclosure #5, page 24, and enclosure #9, page 3 and 7, which outline nausea as one of the symptoms associated with exposure. Enclosure #15 specifically indicates that among the toxins personnel were exposed to, arsenic, cadmium, carbon tetrachloride, chloroform, mercury, trichlorethene, and 1,2-Dichlorethane are known to cause nausea. Also skipped over were symptoms of vomiting, which are specifically indicated in enclosure #15 as potentially caused by cadmium, carbon tetrachloride, trichlorethelene, and 1,2-Dichlorethane, among the chemical toxins personnel were exposed to.
Additional symptoms experienced during or associated with these migraine attacks but not mentioned by the questionnaire are chest pain/angina (mentioned as a potential effect in enclosure #9, page 3, and acknowledged as potentially caused by exposure to beryllium and mercury in enclosure #15), anosmia (acknowledged as potentially caused by exposure to camium in enclosure #15), depression (acknowledged as potentially caused by exposure to chloroform in enclosure #15), dizziness (acknowledged as potentially caused by exposure to carbon tetrachloride, chloroform, trichlorethelene, vinyl chloride, 1,2-Dichloropropane, and 1,3-Dichloropropene in enclosure #15), irritability (acknowledged as potentially caused by exposure to chloroform in enclosure #15), insomnia (acknowledged as potentially caused by exposure to lead and mercury in enclosure #15), along with memory, concentration, confusion, and attention issues (acknowledged as potentially caused by exposure to mercury and trichlorethelene in enclosure #15).
Finally, also on page 152, Dr. Tuna states "Due to the veteran being an unreliable historian, it would be mere speculation to comment on unemployability due to migraine headaches. These headaches do not appear to be service connected in any event." I would respond that I have been as faithful a historian as has been practical under the circumstances, and have given the VA access to all available medical records, given my infrequent medical coverage over the years. The catastrophic effect of these migraines on my employability should be self evident, and the connection of these migraines with my service in Japan should be considered to be well proven, as they are listed as a known effect in several of the attached enclosures, and the latency period of associated symptoms is well documented.
Thus far, my experience with the VA health system has been haphazard at best, with some physicians providing excellent, informed service, and others simply seeming content with barely going through the motions. An example would be the experience that I have recently had with the nurse practioner initially assigned as my primary care giver. While her support staff seemed both eager and adequate, over the six months that I was officially under her care, I spent a total of 45 minutes speaking with her, the bulk of which occurred during my intake interview. Calls for follow up care following ER visits and repeated requests for referral to specialist(s) and additional testing were simply ignored, finally culminating in a necessary request for reassignment to another provider. My current referral to a staff neurologist actually came through the emergency department, after having been berated again during my third visit of the week for not following up with more qualified personnel.
Currently, I am experiencing extremely painful migraines lasting 6-8 hours per session, usually twice per day, and often punctuated by vomiting triggered by the sheer level of pain experienced during intermittent spikes of severity. Secondary effects concurrent with these attacks include dizziness, nausea, confusion, aphasia, aura, visual distortion, light and sound sensitivity. I spend a significant amount of time simply lying in the dark, trying desperately to avoid any additional stimulus that might further aggravate my symptoms, compromising my ability to participate social or productive activities, much less employment. I have also recently begun experiencing periods of crushing chest pain/angina lasting between 5-90 minutes per attack, and have experienced over a dozen of these attacks over the past two months. I’ve had insomnia for years now due to the pain interfering with sleep patterns, and have intermittent night terrors, especially during periods where I pass out while still in pain.
Frankly, at this point I’m very concerned about my situation. I’m scared that the pace and severity of these issues will continue to accelerate, and that further issues associated with my time in Atsugi will continue to surface. The extreme latency of known issues means that I will not likely know all of the long term effects for decades to come. I’m concerned for my fellow service members, who may not be aware of the health issues that have been incurred by their service alongside me in Japan. If it were not for the current severity of my own issues, I myself would not have known of the connections between the smog that bathed our housing units daily and the illnesses I have now, nor would I have known that I was entitled to care through the VA, as I found out last year.
At the time, the command made almost no effort to disseminate information, and minimized any potential risk verbally, despite multiple investigations into health risks and ongoing complaints issued to both the Japanese government and the Shinkampo operators. The sum total of guidance offered to me and my wife was a single 2 page flyer (Enclosure #3) outlining minor short term respiratory issues and a nearly infinitesimal potential increase in cancer rates for a very long length of exposure. We certainly weren’t made aware of the 240+ toxins found during these investigations, nor the additional known diseases and effects likely to be caused by exposure to these. In addition, neither myself nor any of these shipmates that I maintain contact with were contacted about these issues after our period of service in Japan, despite a directive to establish a registry of affected service members.
Further, I’m concerned about the long term effects of this on my mental status. My first wife, Jessie, had numerous health issues during her stay on base, including migraine, bronchitis, depression, and endometriosis, all of which only worsened as her time on Atsugi lengthened. She was driven to attempt suicide twice, and finally passed away in early 2001. I find myself scared that my own path will eventually follow hers, and that I will lose control of my faculties. The progress of my issues has gotten bad enough that my family have become scared of my actions during an attack, and my wife has asked that I carry her information on a prominent and easily accessible card so that she may be contacted if I am incapacitated.
In conclusion, I would invite the VA to examine the enclosed documentation, much of which was generated by the Atsugi command or under direction from the command. If more in depth C&P examinations are required, I will willingly make myself available for the appropriate testing, but would hope that the experience of having my responses to questions about my medical history simply being assumed to be negative without actually being asked would not be repeated. Thank you for your time,
Sincerely,
Josh *******
I hereby certify that the information I have given is true to the best of my knowledge and belief.
Signed 9/20/11 _______________________
Enclosures: Enclosure #1, Navy Medical Record, Joshua A. Byram, 1995-2000, 80 pages [Purpose of inclusion: To provide a complete record of my navy medical history, as given to me]
Enclosure #2, VA Medical Record, Joshua A. Byram, March 7, 2011-September 14, 2011, 200 pages [Purpose of inclusion: To provide a complete record of my VA medical history since joining the VA system on March 7, 2011]
Enclosure #3, Health and Environmental Fact Sheet #1, 3 pages (retrieved from: http://www-nehc.med.navy.mil/downloads/ep/Atsugi/FACTSHT1.pdf) [Purpose of inclusion: To illustrate the sum total of health information offered to myself and my wife upon being moved to on base housing]
Enclosure #4, Compensation and Pension Service Bulletin – October 2009, 8 pages (Excerpt, pages 1-2, retrieved from: http://www.atsugi-incinerator-group.com/CP_Bulletin_Oct_09.pdf?attredirects=0) [Purpose of inclusion: To direct Compensation and Pension personnel to their own internal guidance on this issue]
Enclosure #5 - US DOJ Petition from RADM Haskins on 22Aug97 to Governor Kanagawa.pdf, 28 pages (retrieved from: http://sites.google.com/site/srpusmc/USDOJPetition22Aug97GovernorKanagawa.pdf?attredirects=0) [Purpose of inclusion: To confirm that the USN was aware of environmental hazards at the highest levels, to confirm toxins found within incinerator output, and to confirm known health issues associated with same]
Enclosure #6, U.S. Senate Committee Letter and response from DOD & VA, 9 pages (retrieved from: http://www.atsugi-incinerator-group.com/SOCenvirotoxins09.pdf?attredirects=0) [Purpose of inclusion: Guidance for confirmation of exposure locations and times]
Enclosure #7, VA/DOD Response to Certain Military Exposures, 166 pages (Excerpt, pages 10, 21, 49-62, 76-82, 103, 118-123, 132-134, retrieved from: http://veterans.senate.gov/upload/10_08_09.rtf) [Purpose of inclusion: To provide official dialogue and responses regarding this issue, illustrate the effects on other residents and the extremely limited response by base authorities in controlling exposure]
Enclosure #8 - 2009 NAF Atsugi Health Study, NMCPHC, Executive Summary, 17 pages (retrieved from: http://www.atsugi-incinerator-group.com/NMCPHCJuly09ExecutiveSummaryNAFAtsug.pdf?attredirects=0) [Purpose of inclusion: To illustrate effects of exposure as indicated by the health study, to confirm a number of the known toxins that residents were exposed to, to indicate the inherent limitations assumed by these studies due to non-inclusion and issue latencies]
Enclosure #9, 97 Medical Effects and Pregnancy Study, 8 pages (retrieved from: http://www.atsugi-incinerator-group.com/97MedicalEffectsandPregnancyStudy.pdf?attredirects=0) [Purpose of inclusion: To provide study results for service members still working on base at the time of study as opposed to latent effects, to provide an alternate sampling of known toxins that residents were exposed to]
Enclosure #10, 98 Human Health Risk Assessment Atsugi, 47 pages (Excerpt, pages 14-15, 32-33 retrieved from: target="_blank">http://www.atsugi-incinerator-group.com/98HumanHealthRiskAssessmentAtsugi.pdf?attredirects=0) [Purpose of inclusion: To provide information as to concentrations of known pollutants provided by the incinerator]
Enclosure #11, EPA Mini-case studies, 29 pages (Excerpt, pages 3-5, retrieved from: http://epa.gov/osp/regions/minicase.pdf) [Purpose of inclusion: To illustrate pollutant concentration as derived from soil sampling at various distances from the incinerator]
Enclosure #12, Skywriter, October 10, 1997, Page 2, Captain’s Call, 1 page (retrieved from: http://sites.google.com/site/nafatsugi2/97CaptianCallNotransfers.pdf?attredirects=0) [Purpose of inclusion: To illustrate lack of concern from leadership as well as lack of information dissemination as to the seriousness of health concerns]
Enclosure #13, Email from u00pa2b@cpf.navy.mi on 8-7-98, 2 pages (retrieved from: http://sites.google.com/site/nafatsugi2/97EmaildataPeoplearenotawareonarriva.pdf?attredirects=0) [Purpose of inclusion: To illustrate that, at some level, command personnel were well aware of the seriousness of the situation and that there was a wide disconnect between that level and the level of concern conveyed as appropriate to base personnel]
Enclosure #14, Text of S.3378 as Placed on Calendar Senate, 4 pages (retrieved from: http://www.opencongress.org/bill/111-s3378/show) [Purpose of inclusion: To illustrate senate concern and action with regard to former NAF Atsugi personnel]
Enclosure #15 - Toxin Chemicals that exceeded EPA standards at NAF Atsugi, Japan, 16 pages (retrieved from: http://www.atsugi-incinerator-group.com/health) [Purpose of inclusion: To illustrate known connections between exposed toxins and associated health effects]
Friday, September 9, 2011
Yesterday, or, a time when records were set, new friends were met, but no long term answers, yet...
Eden actually pointed out a simply brilliant post from a webcomic called "Hyperbole and a half", recently, which highlights the plain inadequacy of the traditional pain scale used in doctor's offices these days. Unfortunately, I had entirely too much of a valid reason to use the proposed new scale, yesterday.
As it turns out, my respite from pain was a lot briefer than I had been hoping as of last post. Migraines, chest pain, and vomiting all made intermittent appearances over the last few days, culminating in the mother of all horrible experiences yesterday. I still don't know exactly what was going on, but I woke up in absolute agony shortly after midnight, with immense pressure and a sensation of fluid shifting around in my head - every change of angle for any reason whatsoever kicked the already nearly unbearable pain into extra high gear. Being absolutely exhausted, and frankly unable to face the thought of the movement involved in getting up and finding something to take the edge off the pain (not to mention not having the slightest idea what medication would be appropriate, as this felt so different from my normal modes), I spent the next few hours drifting between lying awake and getting just far enough into sleep to have absolutely terrifying dreams - somehow sleeping while in pain always seems to be about the only thing that produces dreams that I remember, and they're always just scary as hell; perhaps my normal sleep cycle just runs right past REM on the way to deep sleep in a desperate attempt to make up the many hours of sleep I tend to miss.
In any case, one of the dream cycles I landed in was just profoundly disturbing (this among dreams of being fired from working at Costco and being trapped in an underground apartment). For some reason, I ended up in a sequence that essentially had me convinced that my little brother, a man whom I've known, loved, and respected for approximately 28 years now, was a figment of my imagination. Now, I know that this sounds odd and unbelievable, but you have to understand, my normal memory is absolutely shattered at this point, most especially the memories from my childhood and early adulthood. Often, when my thoughts turn to my first wife, Jessie, for whatever reason, it's hard to feel that those years were real, given how little of our life together that I can recall. Kind of tragic, really, and not a fact that I care for, but I use it now as a comparison, because the dream had me feeling exactly the same way, that maybe the experiences I recalled with him were really all in my head. Regardless, I woke back up, still in horrible pain, and spent the better part of an hour and a half recounting the experiences I'd shared with him, and trying to convince myself that Tim actually existed. Perhaps this will give you some idea of how tenuous my hold on reality is at times, especially when I'm hurting for sleep.
The remainder of the night flowed by in much the same way, with dreams becoming less and less logical and pain continuing to get worse. I'm afraid that by the time Eden woke up, and eventually talked me into going in to the ER (I had myself quite convinced that they wouldn't be able to help me, that they would commit me for being suicidal, and that I wouldn't survive the trip to the ER due to the movement required), I had scared her quite a bit. Normally I'm a pretty stoic fellow, as I don't see the point of crying in most cases, and really don't have access to much emotion most of the time (left overs from the military and various traumatic periods, I think). This time, however, I managed to get myself into a hell of a state, somewhere between screaming and sobbing (Scrobbing?), as crying only made the pain that much worse, and of course, once started, it was awfully hard to calm down enough to stop. Surely unfairly scary to those around me, and I'm sorry for having exposed them to such a thing.
In the end, Eden did get me to the ER, with me holding on desperately to the seat and handle the whole way, trying valiantly to minimize movement from the most miniscule of bumps, with my eyes hidden behind both sunglasses and a wet washcloth. As I told the intake nurse, my pain was holding at a 10 ("the worst pain you've ever experienced" - prior to this point anyway) without movement, and was simply making up brand new numbers with any aggravating movement, crying, or the wondrously unpleasant experience of vomiting, which I'm afraid I had to dash away for twice while waiting for a bed to open up in the ER.
Of course they threw blood tests at me, and even took a CAT scan to be sure that there weren't any suspicious blobs showing up in my head to explain the nastiness, but in the end, they weren't able to come up with an explanation, other than possibly meningitis. Given that my temperature and other stats were in a normalish range, and that my pain was eventually managed, we decided to hold off on the spinal tap required to test for that against the symptoms returning in the next few days. Of course, to get my pain under control, they ended up piping in some Dilaudid, a morphine derivative that I hadn't been introduced to previously, along with a varied witches brew of anti-inflammatories and anti-histamines in my IV. Let me tell you, that's some pretty powerful stuff - quite unpleasant waves of sensation when first given, but insofar as A. covering pain, and B. making the remaining pain unimportant, that stuff is amazing. I went from pain quite literally off the scale to perhaps a 4 or a 5 in a matter of hours. Granted, I surely would have preferred some kind of answer for why things hurt so dang much, and I'm more than a little scared that it will return, but failing that, I'll take it. They even sent home two pills of it just in case, along with a few other meds, which I'm given to understand is quite unusual for that level of narcotic. The pain hasn't returned bad enough to make me resort to it yet, thankfully.
Actually, today hasn't been half bad - I woke up with very low static pain, but extremely high photophobia this morning, and so didn't accompany the girls to the swimming hole today, but even that faded for the most part in the afternoon after a dose of the anti-inflamitories and anti-histamines that the ER gave me to hold out until I can see my new doctor.
In point of fact, I don't have a new doctor - while the VA approved me leaving my previous nurse practitioner, they've simply assigned me to another one, as I mentioned last post. Oh well; I did get set up for an intake interview with her next Tuesday, so we'll see how that goes. I still do have some hope for the results of the MRI that my neurologist ordered - it should show much more soft tissue definition than the CAT scan, and thus may show different results. I have, however, given up on the elimination diet - it seems clear that dropping the major allergen possibilities from my diet had no significant impact over the week or so I was on it, although technically I suppose I could still have some environmental factors kicking in as allergens, so I'll still be asking for a test for that kind of thing.
So yes, that's where I'm at now - quite impressively horrible over the last few days, but at least today wasn't too bad at all. As Eden said, it's awfully nice to see me smile and laugh again (and it's awfully nice to have the attention span to do so - the fact that Ed Byrne is brilliantly funny helped too - we spent the evening watching some of his standup.)
Tuesday, September 6, 2011
Sitrep: So Far...
Well, I've got to admit to some confusion. It's Day 6 of my new elimination diet, and, as of yesterday, I was assuming that it wasn't bearing any fruit. The weekend was actually somewhat nice - horrible pain in the morning and evening, but I did get a few waking hours off in the afternoon to actually have some time to myself (pity it couldn't have been time that Eden was home). Yesterday was agonizing; woke up in pain at 3:30 am, and the darn thing didn't quit until 6pm - I was quite afraid that I'd bounced right into another multi-day cycle. All of this could easily be part of my normal variations in cycle; when I'm in the headache every day mode, it tends to shift by a bit off of a static 24 hour cycle, scrolling earlier or later at a whim, but generally somewhat stable.
Today, however, I woke up dizzy and nauseous, but with quite minimal pain. Still within the purview of my normal variation, but it seems to be tapering off somewhat, and I don't appear to be too very photophobic.
Long story short, I don't know where I'm at, but I guess there's something to be said for lack of negative confirmation. I'll be sticking to this diet (and lusting madly after soda and normal food - it probably doesn't help that I've been spending at least a little of my "useless" time reorganizing ebooks, and that I'm now in the cooking section) for another week or so, then will evaluate whether further investigation of allergy potentials is warranted.
Secondary thought: I did get a letter to the effect that I'm confirmed for being able to drop my useless nurse practitioner from the VA. The not so great news is that they've just switched me to a different NP. While I certainly have hope that the new one is going to be more useful and professional, part of the reason I had petitioned for the change was to get to an actual doctor; my understanding of the nurse practitioner program is that they are intended largely to handle the bulk of the "normal" cases; flus, upset stomachs, and the like, while freeing up the full MDs to handle the more esoteric cases, like mine. Ah well; it would be hard to have her be worse than the last.
The new Gabapentin hasn't arrived yet, so no news on how that's working. I'll keep you folks updated when I have more news.
Best wishes to all!
Today, however, I woke up dizzy and nauseous, but with quite minimal pain. Still within the purview of my normal variation, but it seems to be tapering off somewhat, and I don't appear to be too very photophobic.
Long story short, I don't know where I'm at, but I guess there's something to be said for lack of negative confirmation. I'll be sticking to this diet (and lusting madly after soda and normal food - it probably doesn't help that I've been spending at least a little of my "useless" time reorganizing ebooks, and that I'm now in the cooking section) for another week or so, then will evaluate whether further investigation of allergy potentials is warranted.
Secondary thought: I did get a letter to the effect that I'm confirmed for being able to drop my useless nurse practitioner from the VA. The not so great news is that they've just switched me to a different NP. While I certainly have hope that the new one is going to be more useful and professional, part of the reason I had petitioned for the change was to get to an actual doctor; my understanding of the nurse practitioner program is that they are intended largely to handle the bulk of the "normal" cases; flus, upset stomachs, and the like, while freeing up the full MDs to handle the more esoteric cases, like mine. Ah well; it would be hard to have her be worse than the last.
The new Gabapentin hasn't arrived yet, so no news on how that's working. I'll keep you folks updated when I have more news.
Best wishes to all!
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