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.

A Day OFF!

Finally, tomorrow, no appointments, dinners, or birthdays. I've been dying to write for over a week now but was just too tired to summon the will. Seems like every second I'm not doing something I'm trying to rest...but as I was trying to explain to my Physical Therapist today, I need a LOT of rest! Once I get exhausted like this, it takes 2-3 days of doing nothing, and I mean pretty much nothing, to get back to my "normal". I have to say, I almost didn't go today, because I knew she was going to get on my nerves, little spitfire dynamo that she is, and I was so tired, I just wanted to go back to bed or at least RELAX. And sure enough, she has to argue with me about every little thing. I tell her I need 9 hours of sleep a night to be at my best, she says no, that's too much 7-8 is enough. (Nevermind that I only got 5!) I tell her my cardiologist agreed with me that exercise is okay, but she wants me doing no more than 10 minutes on the recumbent bike to start, and Ms. PT wants me to walk & goes on a tirade about that. (Fresh air, blah, blah, whatever,I agree but I have an anxiety disorder so I hate walking around by myself in a place where everyone stares at me; just what I need, more stress?!) I tell her hopefully next time I come I will not be so tired, because I can't focus or coordinate the exercises she's teaching me and she says, no, I want you to come when you're tired and at your worst.(!?! I'd get it if I was in pain, but I'm talking when I'm so exhausted I can barely hold myself up and I can't think straight, and therefore can't learn the exercises properly, which makes me less likely to do them at home.) And this after she's talked for half an hour! Oy,oy-oy.

When she finally tried to tell me that I felt like I needed to sleep because I was depressed (which I totally have NOT been lately! Upset, frustrated, overwhelmed,at moments, maybe a day or so, but depressed, no.) I finally had a little tirade of my own. Ha, writing this I'm really fully realizing the nerve of her trying to tell me I don't know my own body! Yes, I know my health could be managed better, but I've been working my butt off on it lately, and if I'm excruciatingly tired after days of not being able to rest properly or even get enough sleep, it's because I need to rest, my body, and my psyche! It takes a lot of will power to keep going when you're feeling that bad and it wears you out mentally, too! Yes, I know feeling tired all the time CAN BE a symptom of depression, but I also know all too well what depression feels like. (And I always got out of bed anyhow.)

Oh my, this is turning into a rant, isn't it? Well, long story short, I ended up cutting her short a bit after I'd explained to her 3-4 times that I understood PT required my effort to work, that I'd put so much thought into whether I should be even trying it right now with all I have going on that I even spoke to my therapist about it yesterday, and assured her that because I finally have a break from 2-3 appointments a week (sometimes a day!) and all kinds of other craziness, I would now be able to focus my full attention and make the effort and reap the benefits. The reason is, that she kept trying to tell me about some guy my age who had been in an accident but did his exercises and saw rapid improvement despite having to work 2 full-time jobs...which is great for him, and yes, I know, PT can do wonders if you work at it...that's why I'm going, and why I'm telling her I plan to start taking advantage of it. See, anyone who's not sick reading this will probably do like my aunt, say I'm exaggerating, but being this chronically ill IS like working two jobs! And yes, I HAVE worked two jobs before, so I do know what that is really like. But just getting from day to day, taking care of my basic needs, stuff that most people take for granted, for me, that's as exhausting as a full-time job. Then add the marathon of appointments, followup phone calls with lawyers, doctors, faxes sent & received, social services issues, more faxes sent & received, prescriptions to pick up, getting records together that pertain to each specialist, figuring out how to get money for gas to get everywhere, how to stretch my budget, plan my days, micromanage myself so I can keep on doing it even if my brain fails me (thank goodness for electronic calendars and lists!) and managing all my symptoms (nausea, upset stomach, tachycardia, low bp, anemia, numb/tingly and cold extremities, near-blackouts, spells of being freezing & not being able to warm up, night sweats, allergies, pain, weakness, ovarian cysts twisting, irritated bladder, need I go on?)Add in some holidays, new foster kitties & making the house presentable, and mine and my brother's birthday (I had to get up early on mine to sell a piece of furniture I'd put on Craigslist, and then spent the afternoon trying to convince myself to go to my brother's to celebrate BOTH our birthdays and being unsuccessful until I finally gave in and took a nap...and went.)Now try stuffing random things you have to do everyday anyway in all the little cracks of free time...Like I finally told Ms. PT, I'm so exhausted from all that I've had going on and because my body is asking me for rest, my mind is so tired of pushing it, that if I push myself any harder I'll be on the verge of a nervous breakdown, lol. I then reminded her that I do have chronic infections taxing my body and am coming off medications to manage them, too...And then she tells me I need to stop thinking of myself as sick. Which I understand, am already aware of, and I actually am doing better at, but when I'm at health appointment having to explain myself it kind of does come into play... (I mean, seriously, if I sat around thinking about how sick I am, would I really have even gotten through the last few weeks?) Although it's been exhausting, and I'm glad I get a much needed break, it's been wonderful in a way, to feel like I'm living again, doing all this stuff, so despite the fact that I've been dealing with medical records & Disability cases & specialists galore, I've mostly been busy just living...no time to dwell on the bad or cry about the world collapsing around me, or people being mean, or anything, really. If I did, I simply wouldn't make it. Even when I'm busy keeping my symptoms in check, I hardly notice, it's become almost automatic. If I'm nauseous, I take some ginger. And go about my business. If it doesn't go away when I realize it's been awhile, I take some more, or try another remedy. Then continue. If I'm feeling weak, tired, cold, in too much pain, or my back or feet are telling me, I rest. Then get up & continue. I don't sit around thinking Oh no, OMG this sucks, I hate my life, I'm so nauseous/sick/blah. I mean, I probably actually took it to an extreme, which is why I stopped trying to get help, so I could think about it less, lol, and why I'm having to see all these docs now as part of taking care of business. (Well, that and it's really damn complicated and exhausting, especially when you have no insurance and have to beg for every little bit of help.) Now that may be hard to believe after reading this rant, that I don't focus on my illness, but...well, this is my place for that.

Alright. No more dwelling on this negative stuff. Whatever. I'll do my PT exercises from now on, I shall get my rest & be ready to go, and if Ms. PT tries to lecture me again, I will cut her off again, cuz I'm over it. I know I'm doing my best, and also that my best will be better next week. My next post (oops, did I say that before?) is about the awesome cardiologist I found who can and is actually going to try and treat my POTS! How's that for an awesome birthday gift? I'm so grateful that this little marathon of doctor's visits has been fruitful, so very grateful for all of my docs, and yes, even Ms. PT, because I know she means well, that tiny little dynamo.

On NOT Living

Music used to be a passion of mine. More perhaps, the oil that kept me greased and running, that fueled me in a million small ways, barely perceptible from the outside. It got me going in the mornings, inspired me on long drives, was the soundtrack to passion and love and heartbreak, to every important memory...

I hardly listen to it anymore. I have to go out of my way. I tell myself it's because of the cashflow issue getting sick has bred, just now I was listening to something I hadn't heard in awhile, and I realized maybe it's not.

See, music affects me very deeply, always has. I've escaped, drowned, reveled in the lyrics and melodies. I used to work at the college library and I remember walking around shelving books, playing an entire album back in my head in order... I listen, and I don't just think, oh cool sound. It fills my very soul and moves me some way or another. I may think, I want to dance, and find it hard to restrain myself from doing a little boogie. Or I may identify with the lyrics and feel compelled to learn every last word, and become lost in thought. It was like my lifeblood in a way.

So I'm listening now, I hear the lyrics and the rhythm and I get tears in my eyes listening to the stories the singer tells, the life snapshots in his lyrics, in his tone and inflection. And it makes me desperately want to live. It reminds me of all the potential I had, have, trapped in this defective body. It makes me want to LIVE so badly, not just be alive like I am now, but to LIVE like I always did before...taking the bull by the horns, seeing and doing, and to experiencing...being around people and loving and vibing and feeling and just BEING part of the world, a world, something. And I feel so full of angst because I can't. It makes my head want to explode... I try and think of things I could do, but reality is far clearer now than it ever has been before, and it is ugly...but I also have a sneaking suspicion that if the right circumstances presented themselves, maybe I could live again, the way I was meant to...but it's too hard to even hope.
I feel hopelessly tangled and clogged inside, and I can't seem to clear the cobwebs away to find it within myself to overcome it.

Every thing is so hard and I'm so tired of trying so hard and for so long. I don't mean to sound dark...that's not what this is at all. I will keep going, no doubt about that, as long as I can keep the tiny glimmer of hope that I have locked away far, far, deep within, I will try and believe there's a reason to hang in. I have at least a couple of years left in me I think, before my spark is completely extinguished...I've resolved to give it that long simply because I've known that's how long I might have to wait, so it seems childish to give up now...

Sometimes I think I'm silly to hope anything else good could happen that would end that timeline, and bring happiness sooner. Something good. But recently I've hoped...and honestly, I'm getting tired of hoping, and I kind of want to just withdraw back into my cocoon and hide and wait till the storm has passed and the sun begins to show again...But I seem to lose more and more of who I was each day I do...I feel like I'm regressing in so many ways, unlearning, some things that were things I wanted to be and learned to practice, other things unbidden, so much so that I sometimes wonder if my brain really is being slowly damaged...Some people say illness has made the more compassionate people, better people. For me, I sometimes think it has worked the opposite. With attention span and memory sometimes go thoughtfulness, tact, consideration, even politeness, sometimes, all once treasured qualities. Always hardship and never any reward. It's too hard. Not to say I'm not grateful for what I do have, and the small graces bestowed upon me on occasion...But it's just not enough to balance it out. I need something to balance it out. It's not just my body that's ailing, failing me. It's my soul. It wants to live. And love. And begin to learn again...

What a mindf@$# this all is...

Another Day

Optimism, schmoptimism.
I just hope the weekend's over soon before I shoot my ears out from having to listen to my Dad chat up his Internet girlfriends that he made on the computer I hooked up for him.I tried to explain to him that this being how he cheated on my mother, it tends to bother me a bit, and I've received numerous apologies and assurances that I won't have to listen to the bullcrap, but I'm still hearing it all loud and clear, whether I want to or not.
Most of the time, he won't even do me the courtesy of closing his bedroom door.

Then on Monday, I can sit here at home waiting for him to bring back my car, perhaps on time for an appointment, perhaps not. (He's been using it since he got his repo'd.)I used up most of 3 weeks worth of good days trying to get to one appointment last month.

I keep trying to tell myself I should be grateful for having any help at all, but the pricetag it all comes with makes me sometimes think maybe being homeless wouldn't be so bad. I'm cute. Some guy would let me crash on his couch.

No, I don't feel trapped. Living with irresponsible children disguised as parents is fun. We still don't have a dining room (or any) table, or blinds, either.

Another Tough Day

I'm so frustrated with these symptoms. Today, I slept until the phone ringing woke me up at 12:30! Even for me, that's a bit much. I must've been tired. And this is the one day I have nothing scheduled, so I wasn't worried about it.

I got up, made something quick to eat, came to check my e-mail & Facebook, checked out some new articles from the NFA, and that's about all the time I had, an hour or so, before I felt my body telling me I needed to get horizontal. It just seemed like too much though. After an hour? So I resisted the urge to lie down and kept doing stuff. My reward: a racing heart, more heart palpitations. After checking my BP & pulse and finding my pulse was 118, I decided to lie down. Besides, my shoulders were burning w/discomfort already too, calling for my heating pad, or massage pad (but that involved my sitting up, so I went w/the heat).

So frustrating. I put on a show, commercial free of course, because otherwise I'd zone out during the commercials and start thinking too much or thinking of things that needed to be done. But it didn't make a difference.

I got to thinking about Christmas. I feel so left out of it all...Yet another year with no Christmas tree, no Christmas shopping, no opening the presents at midnight Christmas Eve surrounded by family, seeing their faces when they see what you got them, or dancing until late in the night. Hell, I'd settle for watching people dance until late in the night. Just to be around that kind of happiness would be nice.

I start thinking what I could do, and problem solving mode tells me, Well throw your own party! Oh wait. Broke. Have hundreds of dollars of medical bills I need to pay, and can't even do that.

And THAT is the main problem. Money. I've tried as hard as I could to work around my illness, but I can't keep it up. This last week alone, I've spent every day either doing something; running crucial errands, going to appointments, or in bed, trying to rest this thing out. I keep thinking there has to be a way to fix it all. I'm already doing the best I can though.
I just keep encountering one roadblock after another, and my mind & my spirit are worn out, sometimes it feels like I can barely think straight anymore, and my emotions are bossing me around, I just don't have the strength to summon up to be strong and sensible and stop the negative thought patterns. Two years ago, I could manage to pull the silver linings out of anything...but they seem to be all used up.
I've just about used up all the hope I had in me it seems. I don't believe next year will be any better, that hasn't worked in too long.

Well, I got a good useful talking to and managed to stop thinking so much, and things didn't seem as bad. I'm still torn though. Part of me is half convinced I should get over not feeling well and do something to either make some money, or at least get out and spend some time in the outside world. If that makes it worse, then the bright side is, I may finally have proof convincing enough for the government to believe I'm ill enough for them to help me. But on the other hand, I don't like people seeing me ill.
I remember one of the last Christmases I had that was good, shortly before I had to quit working full-time, I'd been going downhill for weeks, but I'd met this guy, and was really into him. So when he asked me to go to the mall with him, and help him do his Christmas shopping, I totally said yes. I was exhausted, but I had been for weeks, so I just pushed myself, but I guess all the makeup and the cute clothes didn't hide it. I broke out in a sweat and I guess I was probably pretty pale, honestly, I think I was having trouble catching my breath too, but wasn't saying anything. He noticed though, and made me sit down, was very concerned. I just said maybe I needed to eat, and he got me some food, and I think took me home after that. It didn't end well.

Ha. Maybe that's why I'm not too excited about dating these days. And my answer about trying to push myself. So much guilt with these illnesses. It seems so ridiculous to get so tired so easily...Worse, when no one seems to see that you need a helping hand. It's like being in purgatory. So torn between what to do. Always second-guessing myself. I've gotten better, but it's still hard. I had someone tell me today I should try exercising. Right. My heart is all whacky, I keep getting tired for no reason am in pain and having an overwhelming urge to lie down and I should go jump on a treadmill? It's enough to make you want to do it, just to prove that it was a bad idea. But really, I'd be the main one to suffer from that.

So anyways, I had been doing better with the not thinking so much stuff, really!

This is so definitely a rant.

Maybe if I'm good, and rest, and stop thinking, I'll be well enough to celebrate New Year's. I think that will be my happy thought. Haven't been to a good party in awhile...

Off to watch yet another episode of Fringe. It's my answer to the demise of The 4400. Thank bro.