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.

Fun times.

Last Weekend

I wonder if this counts as shock?

Day 1 Cimetidine

Took my first dose yesterday, and I think it definitely interacted with some of my other night-time medications, as I seemed to feel extra woozy. Went to bed at a decent hour (for me, 2:30am) but woke up extremely tired at 10am. Went back to bed. Slept past noon, and was still so tired/groggy and it was such a huge battle to get out of bed, I decided to compromise by not going back to sleep, but staying in bed and trying to read. Managed that for a bit, and finally got up after around an hour or so, but already I'm feeling very tired and lusting after my bed...I have something important to do tomorrow, family stuff, so I think I may lay off this particular medication experiment for a couple of days until that's done with and recovered from, and then resume next week at half the dose. (Current dose was 400 mg 2x daily. Perhaps I took the 1st two doses too close together though?)

Re-read and read some more of the posts on the aboutmecfs.org forums (http://www.forums.aboutmecfs.org/showthread.php?2077-Tagamet-(cimetidine)-for-CFIDS-(worked-for-me)/page6) and saw some people definitely felt like they had a Herxheimer Reaction (healing crisis, dieoff symptoms, etc.) and that some people improved on a very low dose. The book I posted the link to earlier also says that improvement was reported by some people taking only a sliver of Cimetidine, so...

Well, back to bed for a nap, or whatever type of rest may come, because I will have to attempt to tidy up my bedroom, at least, for tomorrow, among other preparations...and besides feeling tired and drowsy, my Circulatory/Dysautonomic problems are rearing their ugly head, and being supine is the only remedy for that.
Which reminds me, my doctor mentioned that it remains to be seen whether those problems are permanent damage to the Autonomic Nervous System, or if they will go away if the virus is successfully treated. I truly hope it's the latter, because if not, I'm not sure there's much point in getting better, because those encompass most of what disables me currently...

Waxing and Waning

...is the name of the game.

So maybe I did jinx things by putting in print that I've been basically content and things were at least feeling up...
Or maybe it's just my darn girly hormones messing with me. The timing is right. Just out of the blue I just started feeling my mood go down suddenly, like being on an elevator w/the bottom cut out. Suddenly halfway down the well and flailing for something to hang onto. It's not pitch black but I still now I need to find something. (Don't worry, today I've found a ledge and I'm resting comfortably.)

My physical symptoms have been waxing & waning too. At the beginning of the week, I was having some mean head-rushes, newly combined with jelly legs, and of the variety that threaten headaches if they persist.

That's better, but last night I didn't realize I'd run out of Metoprolol in my nighttime pill organizer (I was forgetting what I'd just taken wayyyy too often.) and ended up sleeping fitfully for only a couple of hours before getting up at 7:30am, trying again, rinsing, repeating, and giving up on sleep. Only to realize around noon that the first time I woke up it was my heartbeat misbehaving that woke me. (It was misbehaving again at the time.) The reason I'd done nothing about it at 7 was that I had been sure I'd taken it, the pill organizer was all set up. But now I remembered that I'd run out of my rx, and hadn't had enough to put it in the last couple of slots, Friday & Saturday Day. I checked to see if I had any in there for the morning, and nope...Yup, must've taken the last one yesterday morning or Wednesday night. Grrrrrrr.

I guess I should feel lucky at least I found a doctor who knew this was a thing w/CFS and that I wasn't as crazy as some of the other docs sometimes make me feel, and that he actually prescribed me something to help, cuz I was sinking fast before beginning the Metoprolol. Spending far too much time in bed, and just plain trying to distract myself from my racing heart (if it was slow enough to allow it). It doesn't completely stop it, and now, the day I miss a dose I can usually count on my heart wigging out at full speed on a race to nowhere. But still it's been a lot better, and I'm grateful.

Lethargy. I guess that's the best word for what's kept ne from calling UC Irvine to further investigate their ALS/Neuromuscular Disorder Clinic to find out if they do indeed have the type of testing I'd like done on my Autonomic Function.
Since I still feel some level of sickness caused by what I belive is Dysautonomia on a daily basis, even when Tachycardia is under control, I really feel it's important to my Disability case to have these darn tests done (In the case of the tilt-table test, RE-done, AND interpreted by someone who knows how!) it should be a top priority. Ah, I think seeing THAT in print may have just been the thing to make me truly understand that! (As well as the lovely episode of nonsensical feeling hot, breaking into a cold sweat and feeling weak, nauseous, and really, really ill I had earlier today!)

The other thing of consequence (cuz, yes, my laundry is of consequence, cuz I have nothing (much less anything cute) left to wear but whatever I slept in, is getting my butt on the waiting list at some of the affordable housing apartment buildings around here, which are actually pretty nice!
Of less immediate urgence, but still with the potential to have a high impact on my happiness, health, and sanity in the not so far off future.

I think a lot of the time now...well, it's been so long that it's seemed like no matter what I do right, how I prepare, try to plan, find ways to move forward, I can't get there...I kind of feel like it's pointless. My life has been on some type of hold for 7 years now. Almost total hold for the past two.
I've had to let go to survive and stay sane. So I'm not as on top of things as I once was, and that's frustrating on the days I care, and as I've mentioned before, I have trouble deciding if it's for the best or a sign of an impending depression sneaking up to envelope me...but as I just said, it's a necessary conecssion for sanity, so I guess there's my answer.

Did I mention I'm starving? Sharing that is my way of excusing the perceived previous rambling. I had a yummy shredded carrot/ginger/lemon concoction with some Young Coconut Kefir pudding a couple hours ago, but I'm starving and so tired of chopping and cooking veggies. Microwave baked potato to the rescue! Here I come!

Cortisol Testing

I got to see a cardiologist this week. (The GP at my new clinic sent me to him so he could manage the POTS & all that.) Thankfully, he was very sweet; an older gentleman. He listened. He had no answers, but he tried, he listened, he examined, and best of all at least he didn't give me the impression he thought I was a loon. (he didn't tell me what I needed was exercise,like the last one I saw, a suggestion so far off base it drove me to tears...because at the time I could barely stand!)

His only idea was to have my cortisol tested. When the do that test though, it always comes back normal. However, last year, I had the other version, the one where they have you collect saliva a few times over a 24 hour period and compare the measurements to what they should be at those times. Mine was low in the daytime, and high at night, which explains my insomnia and the fact that I feel quite energetic at about 1am...And any little thing stresses me out in thee early afternoon (I don't even get up in the morning anymore! Lucky me? Not really, it kinda sucks!)

Anyways, found this article that describes it & thought I'd share.

http://www.nutritionalmedicine.org.uk/phdi/p1.nsf/supppages/franklin?opendocument&part=6

On the bright side, I asked him if I could find a place that did Autonomic Nervous System Function testing, he would give me a referral. :)

A Not-so-good Day Post

I woke up feeling pretty good, all things considered. I was ready to go, even planned to do some cleaning, which for me, is a very big deal.

Except, I guess I stayed on the computer too long (maybe an hour?) and kept ignoring the nagging need to lie down until my heartbeat joined in the internal chorus, threatening to smother me if I didn't listen.
I lay down, but it was going crazy, my feet got cold, my hands, my head even, and my lips tingled along w/my heartbeat. (Even heat from my Thermophore pad wasn't helping. I'd hoped it would not just warm me up, but get more circulation to my upper body so my heart would quit working so hard.)

I'm so annoyed. I had some Celtic Sea Salt and a couple of glasses of water, which helped a little, eventually. But I don't want to spend the day in bed. I made the choice to go on another day, and I wanted to make the most of it.
I'm so tired of all of this I don't even feel the disappointment anymore, it's a strange, numbed, dampened version.

I'd planned out my day but it was too much to begin with and now it seems pointless to try. I'm tempted to go at the kitchen floor anyway, give my heart something to flip out about. I really want to lie down though...

Mystery Diagnosis Dysautonomia Episode: The Woman Who Kept Falling Down

Talked to my brother tonight, and he told me he saw this episode of Mystery Diagnosis on the Discovery Channel over the weekend, about this lady with neurological disorder, and her symptoms sounded like mine.

(Ironically, I was lying down in my car in a store parking lot at the time, because I've been sick the past week or so, and just running a couple of errands was threatening to set off a POTS flare, was sweating, weak, shaky, and seeing spots, and having slightly funky heart rhythms.)

I learned something new from his telling me about the show, actually. Funny, because just this weekend when it was acting up, I was telling my Dad how I felt like someone had their finger on my carotid artery. My brother started saying how the woman on the show said she "felt like her neck..."and I interrupted him and said "had a finger on her carotid artery!?" And he said

"Yeah!"

I hadn't known that was a common thing until then!

So anyways, that was cool to get to talk with him about that. Now if only I could be as lucky as that lady and find a doctor who will help me get it under control.

Actually, I may have...I went to see an old doctor of mine, a really fabulous man who is a holistic doctor with an M.D.. (The only reason I haven't seen him continually is that I haven't been able to afford long-term treatment with him.)
He thinks the key lies in my adrenals, and I tend to agree...I had another holistic practitioner who helped me at my sickest treat me for that too...So maybe in me that's what triggers it. The adrenal is a very tricky thing, because for some reason most of the medical community doesn't believe in adrenal dysfunction other than complete failure (Addison's Disease.)

He had me do a Saliva Cortisol test, and also ran another Thyroid panel, since my T4 came up low. (It's my understanding that adrenal problems would in turn affect my Thyroid, so...)

I have an phone appointment with him tomorrow afternoon to go over the results, so I'm keeping my fingers crossed we'll have some confirmation of all that, as well as tangible PROOF for the SSA that I am as sick as I say I am. So wish me luck!

Here's the show schedule for the Episode of Mystery Diagnosis. It's on tonight (2am here in the Pacific Time Zone) as well as again on October 3rd. Spread the word!

Discovery Health :: TV Listings :: Mystery Diagnosis

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Fun with weird symptoms...

Well, I guess they would actually fit into the broad spectrum of Dysautonomia. I haven't checked my blood pressure today, mostly because I didn't want to see how fast my heartrate was, but I'd be willing to bet it's pretty darn low, and dropping steadily the more I stay upright.

I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.

But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.

This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.

I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.

This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.

It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.

I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...

Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!

What a WEEK!

And thank goodness it's over! Even though I've been sick for several weeks now, this past week was the roughest yet. Antibiotics for my kidney infection weren't working, so I had to go get more. At that point, I was overheating, having hot flashes and cold sweats, and feeling nauseous. Somehow, I got myself to the doctor's and even got in a good mood. It was weird. I honestly think after spending so much time home in bed sick and not seeing anyone but my Dad, and briefly, my brain was just craving some human interaction like mad!

I guess that's part of why this whole "sicker than usual" spell has been so tough. Prior to it, I had at least 3 doctor's appointments a week. (No, I'm not some kind of crazy, it was physical therapy, or my allergist, or a therapist, lol. Just trying to treat as much as was treatable any way I could. Physical Therapy did wonders btw, I'll have to talk about that!) So, pathetic as it may sound, at least I got out and got to talk to real LIVE people at least a couple of times a week and feel like part of the world. I used to be okay with sitting at home alone, but it's just so great to be around people, get distracted, joke, laugh...But lately, I've had to give up on that. First because of financial issues, I had to cut back to bare minimum appointments, and of those, I ended up asking to be billed for most of the co-pays. I'm in such a hole!
Then, I've actually, without a doubt, been far too sick to do much. I kept trying, and trying to do stuff, because I'm stubborn, pig-headed, and that whole guilt thing, but after a few weeks of being sick...I could almost say it broke me a bit...but on the other hand, there was some of that whole "if you can't beat 'em, join 'em" thing going on.

I just had to come to the realization that, okay, I'm really, really sick right now. Nothing else to do but face it, especially when it's so bad I was starting to avoid even checking my e-mail because being upright was making me feel so ill.

Ah, yes. Dysautonomia. My blood pressure was no lower than it has been since I started on the Beta Blocker, but I could tell it wasn't staying up. I was having headrushes galore, to the point where I was starting to get headaches again, and being upright, sitting at the computer was making me feel just plain ill. It's almost like this anxious feeling, it seems like it's hard to breathe, the muscles in my upper body get completely tensed up, and I just feel sick. And an overwhelming urge to lie down.
It got to the point where I was getting all shaky, like a few weeks back, so I decided I'd better listen and keep lying down, cuz that stuff unnerves me.

PLUS, the UTI was getting so bad, my back was killing me, all the way around actually, and my stomach was swollen enough so it looked like I was pregnant, though I was hardly eating. (Eating made the pain worse, kidney infections seem to screw up one's digestion; at least with me they do...)

I started to get better after a day or so of antibiotics, but then the Dysauntomia flared back up, complete with a resting heartrate of 130. It was so bad I felt out of breath, like I'd been running. I figured, I've gone up to 150 on the eliptical trainer before (back when I was well enough to do that for 20 minutes or so) and there's a hospital less than a mile away, so if it got worse than that, I'd go.
(I think it may have partly been because I ran out of my Beta Blocker the night before, plus, in retrospect, I now see that infections always trigger the Dysautonomia symptoms.)

So all that was fun. I medicated myself any way I could. I had some Celtic Sea Salt, extra pouches of Emergen-C, and vitamins/supplements galore.

I've come (back) to an old conclusion. I need to help my adrenals. Yes, I may have chronic enterovirus infections, but they don't usually make me this sick. And in the past week, I've had different types of infections...so I knew it was my immune system that was having issues. Plus, the Dysauntomia always gets better when I treat my adrenals. I've had a couple of different holistic doctors tell me I was having adrenal troubles, and I KNOW one supplement for them that was key in getting me out of a Dysautonomia flare that was the worse ever (after my last "real" job).

So even if the virus is the cause of everything, treating my obviously exhausted adrenals SHOULD help right? Adrenals regulate your immune system, your digestion, blood sugar, BLOOD PRESSURE, electrolytes, stress response...all of which I've been having trouble with...I am happy to report, that I was pleasantly surprised to find that w/the purchase of some Whey Protein and a box of Emergen-C, I actually have many of the supplements that can help support my adrenals already! (At least for a couple more days...)

So I'm going to work on that, but most of all, just relaxing and accepting that I need to rest, and it's ok to be lazy. Sheesh, that Catholic guilt really does NEVER leave you! Hoping to start some chair yoga tomorrow. Must find my Zen, wherever or however my life is destined to be...

12 More Pages: Great Dysautonomia Info on Facebook

Just wanted to quickly share the Facebook page of Tyler Gurney, which I have been finding very useful and enjoyable. It's always great to have a young person share their experiences with Chronic Illness, and he is doing a great job :)

Here is his website as well:

http://www.12morepages.com/