Monday, February 27, 2012

Drifting along

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

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

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

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

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

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

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

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

Disability - VA - SIS3 - VA Initial Decision_Redacted.pdf

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