Don't know what to think... SSA CFR RE: Viral Infections

I decided to do my video today, and to do a little research before I started.

I found some links to some info that makes me want to scream and pull my hair out.
Seriously. Scream. Preferably at my old attorneys, while asking them what the hell they were thinking when they prepared my case, did they not realize they were playing with my life? Years and years of my life? (Going on 6 now...)

Well, I guess I'd better explain a bit before I go on with my rant.

Here is the content of one of the pages of the SSA's Federal Regulations describing Immune System Disorders that meet the criteria for their definition of Disability.

http://www.socialsecurity.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#14_08

I'm specifically referring to this section:

D. Viral infections:

1. Cytomegalovirus disease (documented as described in 14.00F3b(ii)) at a site other than the liver, spleen, or lymph nodes;

Umm, I think with all the viral infections I have, an equivalency can be made for that. Or the CFS definition. But they haven't taken that into account either, it seems... (http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html)

I'm also wondering if an argument could be made for an equivalency to HIV/AIDS. (Thinking of an article I've read somewhere where it indicated that Dr. Nancy Klimas, an Infectious Disease specialist in FL who treats AIDS & CFS says she'd rather have AIDS than CFS if she had to choose. (I know she was talking in general, not about legal equivalents of impairments, but...)


Pretty sure I meet this one, with my two bulged discs and pinched nerves:

1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:

A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine)

Then there's also a section on Interstitial Cystitis:
http://www.ssa.gov/OP_Home/rulings/di/01/SSR2002-02-di-01.html

And then here's an actual case, I don't understand how it could have been won and mine not, I have all the same symptoms (if you replace HIV w/Enteroviruses) and more...

http://www.disabilitylawclaims.com/case_results/claimant-suffers-from-hiv-major-depression-neuropathy-gastroesophageal-reflux-disease-chest-pain.cfm

It just makes me so angry, re-reading the decision, what a shoddy job was done, most of the information was untrue (like how they said my POTS was mild and not a big deal at all and controlled by medication! NOT! I just couldn't find a specialist who would treat it!)misinterpreted, or based on incomplete information. (Like them failing to note the doctor at my Physical Therapy clinic was an Orthopedic Surgeon, so my pain must not be so bad, they said my Degenerative disc disease must not be that bad if I hadn't seen a Neurologist, which I had, and even had tests proving that I had nerve problems related to my bulged discs, as indicated under the criteria here:
http://www.socialsecurity.gov/disability/professionals/bluebook/1.00-Musculoskeletal-Adult.htm#1_01

1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:
A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);

OR

A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);

And here's the last one, for POTS:

4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c).

Agh. I'm sorry for the rant, this just makes me so angry...makes me wonder why my old attorneys didn't do a better job, why the Judges are being so unfair, why they don't care that they're messing with my life, which keeps getting tougher & tougher... I was having some major anxiety earlier, and it got better, after venting to my brother a bit, then got worse when I came back to finish this, so I think this is why. I just feel so completely helpless...wondering if my new lawyers will do their job, and if the judge is going to be a fair one for once. It just blows my mind...And I have to admit, I'm really scared this time. Just going to the hearing, I almost fell apart last time, and after the year I've had...Living with so much uncertainty... It's almost too much to bear.
I just want to get well! I'd even settle for not getting much better but not having the stress I have right now, having someone to help me clean when I'm too weak (all the time these days, I got worse just tidying up a bit, nevermind actual cleaning!)health insurance so I can get my medications and try to keep my symptoms at bay...Just a better quality of life...
Well, my upper back is burning & going numb, so I guess I'd better lay off the typing and lie down. Always with the lying down, grr. I so want to eat something disgustingly sweet and fattening right now...lol.

Sinus Tachycardia & Stuff.

I realized earlier tonight, that although I believed it to be an evil term that doctors have used to dismiss my racing heartrate, I really had no idea what Sinus Tachycardia really meant! So, being me, I had to look it up. (And also being me, I can't understand how I hadn't already? Maybe I did, but in the days when my memory was REALLY bad?) As usual, Wikipedia delivered. (Remember the days when it was actually considered quite an iffy source?)It even mentions POTS in relation to it! So here that is:

http://en.wikipedia.org/wiki/Sinus_tachycardia

Nothing much new. My heart isn't pounding as badly now that I'm back on the Beta Blocker, except for when right after I took it today, but I'm guessing that's because the Mestinon was chopped in half & released into my system more quickly then the unbroken Metoprolol pills. I did have a lot of near syncope episodes though, even after the Metoprolol should have taken effect, I think. Definitely noticed an increase in those since I started the Mestinon, although it could just be because it's close to the end of my cycle. Nasty ones, too. If they were to keep up, I think I'd have some of those nasty headaches in my future.

Well. This is going well! I was afraid it wasn't a good time to post, seeing as how I was feeling pretty cranky over not being the slightest bit sleepy. And a little bummed out that my stomach's out of sorts, because I stuffed myself with Spanokopitas a little bit ago. I tried to resist the urge to eat, but I didn't manage. I even had two, yes TWO cups of tea to try and turn off the anxiety, or quell my sweet tooth, or just put me to sleep, but nope! Well, I really didn't eat what I would call a proper dinner...I really can't decide which it was, maybe genuine hunger and then topped off with anxiety that makes me want to stuff myself silly.

Nothing much new. Well, I am doing a lot better with the holidays this year! Maybe because I've been so busy, maybe the peace of having the place to myself, maybe I'm just plain used to it not being a big deal and being broke at this point? I am about $200 in the hole this month, so that sucks, but I'm not all that worried about it. The only difference it really makes is, I feel even less inclined to make the effort to drive to L.A. for Christmas with my Mom & brother. And yes, I'm still annoyed that we can't have it here. I started decorating very nicely; managed to find where some of the decorations were stored.

The foster kitties are quite nice to have around. (Except when they start making too much noise at night, ahem, kitties, you boys had all day to play, to bed!) My allergies aren't doing nearly as bad as I'd feared.

So nice to have time to rest and not forcing myself through the motions like a zombie, trying to get to all my appointments. Last week was light, and this weekend I was just plain lazy, although I did find myself sending a fax to my attorney with some new medical records I got from a previous Primary Care Physician (For free! Yay!) as well as some input from my brother about my health and how it affects my day to day life, and Foreclosure notices for this place. Yup, they're all trying to give me the boot now. I won't budge till I have to, hopefully I'll get till Spring or Summer, so if I have to sleep in my car, I won't be freezing. I guess I'd better start finding out more about transitional housing eventually. I know there's something like that at the place where I go to the clinic, a mission, but not sure how that all works. But then, who knows what the future will bring, I'll cross that bridge when I get a little closer to it. Does that sound a bit Zen? Maybe so, I don't know why, but lately I feel quite Zen. Except when I wake up super-anxious in the mornings, but as far as the overall picture...OHHHHHMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM.