Oh My.

Thud, thud, thud goes my heart. Actually out of breath, ughh. Monday I had such a good day, but I think the events of the week have been a bit hard on my health.

Just mostly trying to cope with my latest SSDI decision. Lots of anger. Especially after I guess I took too much advantage of my good Monday, I got optimistic, installed a WordPress blog, scanned about 1/4 of my papers I'm filing w/my NeatDesk Scanner Trial, and did a couple loads of laundry, though couldn't fold them, and then Tuesday I was in bed all day, too exhausted to do much, and that's bad for my mood. Can't remember what Wednesday was like,probably a bit devastated to have it thrown in my face yet again that trying to work is overzealous, but Thursday I decided maybe it wasn't the judge's fault, he seemed to have such a sketchy view of my situation, and maybe the problem is that I haven't sufficiently illustrate for them the exact reality. I proceeded to begin writing them a letter, clarifying and presenting evidence for anything they got wrong, or any incorrect assumptions, reiterating that it's not that I'm contradicting myself, but that my condition is constantly fluctuating. Yes, there have been times when I've done things that I "couldn't" do if I was THAT sick, but I'm not THAT sick non-stop, and there have also been times when I've been bed or couch ridden. Many more of the later than the latter... Clarifying things like that I in fact WAS under the care of an Orthopedic Surgeon for my degenerative disc problems see files from Dr. So & So dated xx/xx/xx, and that my Mother does in fact support my case and would write a letter attesting to that fact and describing what she has seen me experience, stuff like that.
I painted a far more thorough picture of my life in the last five years; the monthly battles, the day to day fluctuations, month to month, year to year. The ups and downs. I hadn't realized, but they somehow got the impression that I was laid off from my job and THEN claimed to be sick, having showed no signs of decompensation, prior to the event, which is grossly incorrect. I have a termination letter that actually states that the reason for my termination was excess absences, and I have proof that I was actively seeing doctors trying to find a solution to stay healthy enough to work for months, and that I actually deteriorated further after having surgery 3 months before I stopped working.

Before I knew it, I had 20 pages, which was fabulous. And felt pretty ill even though I'd been in bed the whole time. (That sound thorough enough? lol.) I've often wondered if many people w/POTS have that problem, feeling ill from being on the computer sitting bed? If so, it's likely the sitting up. If not, maybe it's my c-spine problem. All I know is I have an overwhelming urge to lie down completely flat, even a pillow won't be had. Had to be at least part Dysautonmia though, cuz I felt clammy and nauseous, like I was being choked by my heart beating in my throat.

Overdid it I guess. What can I say? I'm struggling to survive. I woke up with a severe case of anxiety and had to do something because I could hardly stand it and I didn't see sleep returning, plus it seemed like an idea. And I knew if I stopped I might not finish.

Yesterday, was rough. More dealing with overwhelming anger. I want to jump kick things and punch stuff. I considered the walls, but I decided I like them the way they are. I tried talking myself into going to the gym for the hydromassager, and maybe while there I could bat my eyes at a staff member and get them to show me how to use the punching bags properly so I didn't feel so stupid wondering if I was doing it wrong, and if maybe they had gloves for rent, but I couldn't. I just felt to fragile for that public and adventure. (Scathing argument with my Mom over boundaries the night before, ending in scathing insult text messages, most of which I avoided reading or didn't even believe, but for some reason fighting with her always makes me feel so damaged. It leaves me wondering how I could possibly be sane and whole with that kind of relationship with her.)

Sometimes, I feel SO damaged, inside and out, and like even though I need people in my life it's hopeless because I end up just walking around with a big huge gaping wound for everyone to see and they all run... I don't resent the world so much for not caring anymore, I've made my peace with that. The social security judge seemed to think if I did things by myself, it was because I must be okay or people would help me. But there's no one to help me, even if I am sick as a dog, if I need to eat, I either have to go get food or make it. Even when my parents/sibling lived 2 blocks away... I've made my peace with that. But sometimes, when I'm dealing with so much it still hurts that if I reach out to my brother for example, no matter how much he says he cares about me and he'll be there and how he knows how I've suffered and how he thinks I'm brave...Well lets put it this way. Yesterday he texted me that if there was anything I needed him to do, like testify at my hearing, to let him know. Well they don't do witnesses, so I said, yes, if you could write a letter, that would be great. Silence. I sent him a couple more texts about it over the next day, and still, silence. Deafening silence. Another gaping hole, lol.

Well, anyhow woke up in better spirits today. Less angst. Hardly any, really. Lazed around watching DVDs to turn in for more, I didn't feel too bad, even though I woke up twice last night drenched in sweat. Viruses raging I guess. (I actually had to change, because I was freezing!)
But mostly ok...did notice I was sweating for no reason if I got up to pick things up, or tried to tidy up a bit. Took a shower cuz I needed it, and then had to lie down, because I couldn't stop sweating. Heart was acting up & on off, but not too bad, so when a new friend I made called to see if I wanted to do something (had to turn him down last night) I said yes, I was feeling okay...
Until... I went to my local box store, I had an internet delivery to pick up, a cart to see if that improves things with the laptop any to help me explore work options, and get some videos next door at the video store. Not a big deal, right? Wrong. Apparently walking to the back of the store and standing there for a couple of minutes, having the guy put the thing in my cart, and walking back to my car was exhausting. Had my movies in under 5 minutes but was starting to sweat standing in line for about 2. Lugged the 15 lb box inside and was weak, had to lie down. Heartrate nutty again. Got better after a 1/2 hour, 45 minutes or so, so I made the can of soup I'd grabbed while, knowing I wouldn't be able to wash dishes, ate, it was delicious. But it flared my heart up again. (Anyone who doesn't have POTS, eating can make it act up.) I realized I probably wouldn't be going out after all, and was dreading making the cancellation, but fortunately they beat me to it! Who says I don't make the best of things? How many girls do you know who appreciate being cancelled on? hehe.
Another of my friend from my old 'hood is close by at a concert, super close. I feel bad, I can't even invite her over, the place is an utter disaster. I contemplated tidying up, hiding stuff behind couches, picking up papers & such, but...considering until a couple of minutes ago I was having to carefully control my breathing, lying down almost flat, because my heart was pounding so hard...doesn't seem like the best idea. Now I just want to lie here and enjoy my movies...So that I shall do!

Off-Label Use of H.I.V. Medications Is Catalyst for More Controversy - NYTimes

Off-Label Use of H.I.V. Medications Is Catalyst for More Controversy - NYTimes.comhttp://www.blogger.com/img/blank.gif

Lame. I don't quite buy that those people are on a waiting list, if they are, well maybe they should get priority if they're dying, but to take it away from us completely would be cruel. I am ever so grateful to my doctor for prescribing me anti-virals; before he did I was getting infection after infection, was so weak, and having reactions to antibiotics, POTS flares...I couldn't get it for awhile because I had insurance and couldn't afford the $500 an Rx price tag, so I think maybe that is their problem. But once I lost my insurance I had no problem getting it for free... (Ridculous, but fact.) I've run out a couple of times and start getting sicker right away...If I had kept getting sick I don't know what would have happened to me...

Genetic Testing for Health, Disease & Ancestry; DNA Test - 23andMe

Heard about this site the other day again, but didn't realize it was owned by Google co-founder Sergey Brin's wife. I wonder if this could help us find a cure? Apparently his Mom has Parkinson's and he's discovered that he shares a common gene that may cause it (although it's not hereditary?) and plans on "preventing it" by working out the bug in his DNA like he would in a programming...Maybe we need THIS guy working for us!

Genetic Testing for Health, Disease & Ancestry; DNA Test - 23andMe

TLC, Giving, & Tx

First, I suppose I should apologize if I've come off a bit bitter, I was going for sarcastic but positive, and somehow it just doesn't come off on the page as well as it does in my head.

I am okay. I've done nothing all year but hang on and try not to rail against it all too much. I just kept telling myself, a few more months till the hearing, a few more months till the decision...I guess the TLC I received helped, as well as what I got to give some here & there, too. I hadn't realized what a huge thing that was, what a piece of me was malnourished, it feels so good to give. Giving makes you feel useful. Yup, sick people need to feel useful, too! Let us help! (But don't get mad if we can't.)Or at least, let us love, yeah, awww!

I'm so grateful, too, that my brain has been working. Not continuously, but still better than in years. I can remember phone numbers again! If I'm really worn out, it gets worse again, like, a few weeks back I spent a couple of weeks at my Mom's and was dying to go home, because my brain was all pretzeled up trying to keep track of my toiletries & medications & things, as well as remember where her kitchen things/toiletries were located and I kept forgetting why I'd walked into rooms, which is infuriating(see, when I say I'm better, it's relative, cuz you'd think having stayed there for roughly half the year altogether I'd know where stuff was, but...I'll take it. I just hope it doesn't bail on me if I have to get a job. I'll beat if up if it does.)

My fatigue, it's hard to say. I feel like it's better, but maybe that's just because I choose not to think of it. I just lie down/recline whenever I feel compelled to, which is often if you're not me, but doesn't seem like a big deal to me, not sure if it's fatigue, or the weird nearly imperceptible signals of my dysautonomia pushing me to do it. The confusion is compounded by the fact that I'm feeling good, great even, the last couple of days, but in honesty, looking back the last month or so have been rough, symptom-wise, and it's not like my "great" is normal. Lots of Tachycardia, I think I ran out of Metoprolol, my beta blocker for the POTS twice this summer, and then I also ran out of the Immune Support supplement I was taking. Mushrooms. I've discovered mushrooms are VERY useful. Not that the anti-viral I am taking doesn't help, I was out of that for a few days and all hell was breaking loose, so that seems to be the keystone in my current treatment, but definitely enhanced by the Immune Balance supplement; the ingredients being Beta Glucans and a cocktail of Reishi, Maitake, and Cordyceps I believe.
I also found a bottle of Cordyceps, and found it seemed to work as well if not better for my immune system, plus I think I've seen my endurance strengthen, perhaps emotionally as well as physically. Wait, I take that back. It's more like it increases my ability to push myself, as, like I've said, I've tried to spruce the place up a bit, and that has caused some actual sweating, which felt amazing, ahh! But I have to admit that I also had more tachycardia flareups, which I got frustrated enough with to stop letting them push me around. Yes, I dared them to mess with me! As long as I'm not completely out of breath from them or getting cold, I try and go about business as usual. Before this laptop found me, I was having major issues with pins and needles and iciness in my feet, even cold sweats & nausea from sitting at the computer, but I even got stubborn with that...but pushing past it made me feel weird though, I almost couldn't sleep, I felt this tense, over-amped feeling like someone gave me meth and my muscles were too tight, breathing too shallow. I suppose it has something to do with the autonomic nervous system's control of epinephrine or something related.

Allergies, are sucking, contrary to what the SSA presumed. (That they must be non-existent because I haven't gotten treatment. MSI doesn't cover allergists, so...) I guess I forgot to mention, too, that I actually was taking 4x the normal dose of antihistamines plus natural supplements & sometimes nasal rinses to keep the excruciating sinus headaches at bay? Well, I decided to cut back on the antihistamines cuz I was running out and I felt wary of side effects at that dose, and then my allergy supplement got discontinued! Inflatrol, lovely enzymes, quercetin, turmeric, etc. I've managed to get new supplements with those in the, but they're not working the same, or my body does agree that a double dose of antihistamines is enough and wants me to make it quadruple again? It's usually like this. When I finally get them under control by about the third week, I have to stop taking the supplements because they thin my blood too much and if I keep taking them that last week, I will menstruate indefinitely, eww, I know. That time of month I'm utterly screwed. Not only do I get angry, senstive, and weepy, but my allergies are awful, my blood pressure drops and I can't have salt to raise it because I will not only bloat up but this will cause excruciating cramps and/or bladder pain. (Because my IC acts up, even if it's been good for weeks, that week, ow. (Another assumption the SSA made.) I also re-started taking an Indole 3 Carbinole supplement because my Endometriosis and other hormonal issues are acting up again, ugh. (I'd started eating soy again, big mistake as far as Endo. Another development, I'm anemic, and finally convinced maybe I need to eat meat again...but I can't bring myself to.)Been wanting to check w/my Dr. to make sure it wasn't the anti-viral causing it, but with all the family chaos in addition to my own turmoil, brokeness, and phone being cut off so I could help feed a family member, I missed my last couple of appointments :( I've been hanging on, but that doesn't mean it hasn't been emotionally overwhelming, and I have no tolerance for stress, so I've been missing a beat or two occasionally...)
Huh, you'd think all that would bum me out, but it doesn't, really, it's just my life. I do my best to try and live in the moment, because my sanity depends on it. So I will keep going to the park to take pictures of the beautiful scenery, play with and photograph my Mom's adorable doggie, get joy & satisfaction from little things, and on my never-ending quest to be a better me. Hopefully a me with more cash, and less weight! (I joined a really cheap new gym, awesome deal, under $20 gets you free tanning(?!?) & hydromassage, & a guest pass. So if I feel crummy I can bribe myself to the gym with a massage, which more than likely increase my circulation enough so I feel better, and then I'm already at the gym! Brilliant, no?)OMG, I think I'm watching Jay Leno without meaning to, and I swore I never would again after the Conan debacle! Gasp! Must go!

...and I guess I'll stick around after all...

So, I think I may have mentioned that if I lost, I would go jump off a bridge. (Or was it suicide-by-cop? Nah, I scrapped that after I lost my Life Insurance, lol.)

Fortunately, thanks to the good year I've had, I've managed to scrounge up a willingness to keep on truckin', as they say. When I think of the what it took to survive before I moved in with my father, and all the hell I've been through since, and the fact that I now have no cushion for my future, I kind of feel a flicker of "please, just let it all be over!" But, then, I've also been entertaining certain ideas.

I do have a certification in Reiki, and am technically able to practice this amazing healing art, per said certficate. The question is, should I? I've been doing good, but I'm not always the most cheery person. Nor am I all that healthy, in any way... Sometimes I'm not even sure if the healing works, though when I recently began to refresh my memory reading my manual, I felt it coming back with a vengeance. (Just for the record, I put on my typing gloves, but my hands still hurt, and my shoulder area just gave a pinched nerve twinge to let me know it wasn't missing out either.)

There's freelancing as a virtual assistant, which part-time I might be able to do, but the stress of dealing with clients might be a bit much, freelance writing, which I've never done, writing a book, which I can't seem to make myself do and I feel if I did I would fall into that obsessive cycle where I get focused on something and do it obsessively, kinda like this typing right now, which although I'm using a laptop and in a recliner is killing me, so it might not be good for my pain levels but...


On the other hand, I was looking at gigs in the classifieds, and found some part-time jobs that I would qualify according to my resume. Those, are kind of overwhelming. My last job was only 20 hours a week, and it was a struggle of pure willpower that I succumbed to and let ruin my health because I didn't feel worthy not working. The memory of the guilt I had at letting my employers believe I was the person on that resume leaves a very nasty taste in my mouth. And I don't believe that would be a sustainable endeavor anyhow.

On the other hand I did the math, and jeezus christ, with a few hundred dollars a month maybe I could help myself, not like I could have if I had thousands of dollars of SSDI backpay and $700/month, but maybe I could manage some more things to make me feel like a regular human being, see a chiropractor, get a massage, treat myself to a movie, make friends w/o worrying about how I'm going to pay for my food/drinks/ticket/gas (part of the reason I quit trying, that and getting ready was exhausting!) get some paid help cleaning, buy myself some slippers...I could be less stressed trying to wrestle a couple of measly hundred bucks into enough to pay for prescriptions and supplements before I run out, not be stuck at home because I have no gas...and now that I've put the bills all in my name, begin to rebuild my credit (and, likely, file for bankruptcy, I can be optimistic, but there's waaayyy too many collection bills for me to pay off working part-time.)

In the past, I've jealously guarded the secret of my disastrous health from my employers until I couldn't. But maybe if I only did that until I was hired it would be less stressful and I would feel less guilty. Maybe if I look at it as a way to make my life easier and not a measure of my dignity and worth, and am not afraid to walk away if my health is suffering... Of course, the problem there is, that only works as long as I have a place to live rent-free, and that's not likely to last. For all I know I could be homeless by X-mas, and I know I can't pay for a place to live. Even if I was lucky enough to talk myself into a $20/hr full-time job, I probably wouldn't last for more than a week or two of willpower-propelled exertion...plus with wrecked credit?

Maybe I can try working part-time, and not think about what will happen in the future, if I will find myself standing on a ledge again, so tired. Or maybe it will give me back the hope to believe that there is a way, if not to get well, to survive without hating my life. I believe I'm here because the part of me that knows what this is all really about knows something I don't and chose for me to be here. The danger is when I wonder if that part of me is right and has a worthy cause, or if maybe it's just for entertainment purposes, cuz this ain't fun and definitely not worth it in THAT case! (OMG, I would take eternal revenge on my higher self if I found out it was putting me through this for kicks!!!!) Fortunately, I've brainwashed myself into believing there's really something all this positivity crap, and so...I just want to not struggle so much for just a little while, maybe that will be enough to replenish my willpower, because right now, my soul feels so battered...more than anything I need a reason to smile. Is that crazy? I think it's crazier that these past years, the few times I've been around people who make me laugh, my face actually hurts because the muscles are so out of use, but it hurts so good...

It's been awhile...

...since last I posted. My hearing didn't give me a good feeling. The judge wanted to see my Facebook profile, and I freaked. Most people would say that it pretty much proves how I've been feeling, I sometimes whine...Most of the pics in the last years are of me, by myself, my cat, my Mom's dog, my brother, or scenery at local parks. But there are older pics, the date that shows on them is the date they were uploaded, even if they are 10 years old, and maybe sometimes I tried to make my life seem at least a little interesting and not pathetic, so I may have purposefully lied by ommission or slanted my statuses in a more positive direction. Knowing what I know from past experience with the SSA, I figured they'd take everything they could and twist it to make my case look bad. It's really weird, they call them Judges, but really the SSA Appeal Court Judges are more like attorneys for the government. I expected the SSA to look at my medical files, but I never expected them dissect my life the way they've tried to do!

Suffice it to say, I didn't give them access to Facebook. It just made me so ANGRY, the very idea made me feel violated, really. I've already had to resign myself to the idea that everyone who knows me judges me for not working, but after all, they're opinion of my medical limitations doesn't hinge on my getting thousands of dollars to pay off my hundreds of medical bills and potentially getting well, or at least, better.

So anyhow, I guess I knew they weren't going to approve me, again. Yes, I think I did. I think that's what I've been preparing myself for all summer, mentally. The couple of weeks after the hearing were the worst, and I wouldn't have made it without the support of my Mom. Yes, we still fight, and she still shoots her mouth off and says really hurtful things occasionally (which incidentally, the SSA used against me, apparently something I said to my shrink, they built a whole thing around it jumping to the conclusion that she didn't support my application, amazing!) but the only reason I've made it through this year so well is because she let me stay with her a good part of the year, not continuously, I would desperately need to come home and veg completely for a a couple of weeks a month at least usually, but it just made such a huge difference to have company, someone to hug or get hugged by when my heart was racing incessantly for no known reason, or I was sad, or exhausted to the point of tears, or feeling like I got hit by a truck. Despite our ups and downs, it was so much better than sitting at home, feeling invisible, to tired to make friends, trying not to let it hurt that my father was making a new life and apparently not planning to include me in it at all...I mean, yes it's awkward when your parents are married for almost 40 years and then they're suddenly with someone else, but that's what introduction dinners and such things are for. I guess really, it shouldn't have been a shock, seeing as how during their last separation he lived with a lady and her two daughters, who we never even met, but it was still a shock and hurtful to find out other members of our immediate family got to meet her before we did. And, in a way, a relief when he called me from the airport to let me know he was leaving the country! Yes, this is really my life!
Having the place to myself has been a godsend, so if not for the fact that he didn't make any arrangements for the bills or anything before leaving, and isn't paying the mortgage or HOA fees, it's been lovely, to feel like a grownup again. I used to get sad because it hardly felt like a home here. He made so many promises to me about how I could decorate the place that never materialized (we finally got blinds on the huge living room windows 2 months before he left, in time for his family to come visit) and then I had to beg and plead for help keeping the place in sanitary conditions. But it's like with all that anger and bad energy gone, I started to be able to see all the little things that were within my reach to make it truly a home. I just wish I could afford (physically and financially) to paint it, but the little things I've done have probably been the cause of my increased POTS symptoms. What could I do, it wasn't ALL vanity. It was a psychological crutch, a way to feel in control, making the place mine while I'm here.

So. I got the decision. UNFAVORABLE it read. (Here's another hilarity: apparently I could do work in a WAREHOUSE! LMFAO! How hilarious is that? Nevermind the fact that I've had problems with my hands & wrists since my teens ::cramping up as I type, matter of fact!:: but the Dysautonomia seems to have made me extremely sensitive to temperature changes, so, nice, icy cold or super hot warehouse? Uh uh. Oh, and my being able to take care of a pet cat is suspect, as well as the fact that I admitted going to a TUPPERWARE party for a couple of hours!They also dismissed my pinched nerve/messed up vertebraes cuz they somehow missed that my Orthopaedic Surgeon who had me do months of PT was an Orthopaedic Surgeon, and since I didn't see one it must not have been that severe. I guess the Neurologist and his Nerve Conduction study didn't figure in either.)
Ah, forgive the rant. At this point it just makes me laugh. I wonder how many other people can claim to have been denied Disability on the basis of their (recently deceased) pet cat?