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?

A long one

Another holiday down. I made it through, not scott-free; got off my diet (which incidentally, I can't wait to be back on, although I couldn't help but indulge in one last biscuit!) and felt ill most of the day, which I pushed through. (Usually I need to sit in my recliner after I eat or I feel sick, it's all related to the Dysautonomia, not enough blood volume, blood gets diverted to stomach for digestion, or there's not enough to get there, which either leads to fatigue, possibly cold extremities, and tachycardia, or just plain feeling ill, or problems w/digestion and feeling sick. Worse when off the B.E.D. diet because regular food isn't as easy on the tummy; plus carbs & sugar raise blood sugar causing more ill feelings.)
Of course, couldn't get by without a little family dysfunction either. Suffice it to say I don't do well with being screamed at by someone who should be treating me with love and respect, especially after I've spent a couple hours trying not to get irritated about having to make sure the day revolves around Dad, not around anyone else. Another reason I'm dying to have my own family, just to have something go nicely and not need people who would ruin the fun to feel like I'm part of a family. Holidays and family mean so much more to me now that I've been sick for so long and it's constantly breaking my heart that even that seems to be out of my control. I'm not perfect, but at this point in time, with everything I've been through the last few years, I just can't seem to muster the serenity to not let my buttons be pushed, especially when someone acts selfishly and nonsensically and rubs salt in the wound called "life is NOT fair, and you really don't have control over anything you thought you would, even the closest people to you are never going to be there for you in the way you would like". Expectations. They're killer. Even worse if you're a writer at heart, and you thought in your head that the story had already been written and everything was supposed to happen just SO. Stories are a writer's babies, and we guard them jealously. But I've had to keep letting go of pieces of the story, as it seems The Editor keeps making shocking changes to (in my mind) the most key plotlines! Now, I don't mind a few liberties being taken, but for goodness' sake, don't throw the entire manuscript in the trash! ;)

Speaking of writing...I feel like I'm getting closer to overcoming the panic that inevitably pops up when I think about getting back to my novel. But I still feel pretty unfocused, overwhelmed, and uncentered, too much noise blocking my soul from connecting to the inspiration. But it's getting better. Maybe when I get back from my July tour of friends who will let me crash at their pads I will have managed to let go of some of the emotional pain that I know is the main obstacle. For now it overwhelms me to the point that I know it is impairing my healing, is part of what I need to heal in order to heal. But nothing to do but try the best I can to overcome it without putting pressure on myself.

To distract myself further, and hopefully get to that place more easily, I've decided to take a class. It's not a required course (frivolous, I know, and worse yet when I'm so close to being at the point where I could finally transfer to a University, but I have my reasons)and I've chosen it solely for the purpose of engaging my sometime Fibro-addled brain, and bringing enjoyment, hopefully spurring creativity and boosting my confidence. (Last time I took classes, I practically ended up having a meltdown...I was miserably sick and kept waiting for a good day to do my work, but they were too few and far between, leading to the stress of trying to finish coursework at the last minute, while STILL feeling unwell, and coupled with being extremely worn out from at least a year of struggling to keep a roof over my head and the merciless self-judgement of myself for yet another failure. Abject failure being something I wasn't very familiar with before I became ill...)
SO yes, I will be taking a course, but for fun! And I refuse to worry about how it would look on my transcript if I can't finish it or don't do well...(Partly because the subject matter leaves little room for it!) Yes, a course on Latin American Culture & Literature (taught in Spanish) is as probably as close to Heaven as I can get in a classroom, so we shall see...I don't think even a professor obsessed with symbolism could ruin a course like that, as long as it contains at least some Marquez and Allende.

In other news, I have a doctor's appointment tomorrow, with a certain well-known ID doctor who treats CFS. I haven't managed to see him since I lost my insurance, so I'm nervous both because I'm afraid of the cost, and because I missed my last two appointments and stopped taking one of the medications he had me on. $40 a unit suddenly overwhelmed me...along with the cost of my usual allergy supplements and some supplements I added in an attempt to boost my adrenals and stop feeling so overwhelmed and stressed out for no good reason. (Or perhaps with good reason but that I should have adjusted to long ago.) I'm thinking I may have to find a way to go back on them though, because I've definitely noticed a marked decrease in cognitive function (I found myself having to do this thing where I have to stop and visualize putting ideas or steps in order before I can verbalize them, because I can't seem to organize them enough to do it otherwise and end up tongue-tied. What better form of torture for someone who prides themselves on succintness?) and now that I think of it, my heart has been bothering me more than usual since I discontinued it as well...

Sadly, I doubt this doctor can do anything more for me, but he is probably the most reputable ally I have as far as proving my SSDI case goes. Plus, one of the experimental treatments he put me on has improved my immune system noticeably. It's not helping me get rid of the CFS, I don't think, but it has definitely put an end to getting sick with various infections several times a year, for which I'm very thankful...

So wish me luck...