Here is what I wrote on my Facebook page today, I think it pretty much sums it all up:
Six long years, and I finally won my SSDI case! Fully favorable! Feel like crying and screaming. Been sick and in pain so long, sometimes I wanted to give up hope and die, but glad I hung in there.
All those people who doubted me or thought I was just being “lazy” or “dramatic” can kiss my ass. To all those who have showed love, empathy, and encouragement, thank you so much for helping to keep me alive and fighting.
My fellow bloggers here on WordPress definitely fall into the second category of supportive, encouraging people, so thank you all so much!!!
By the way, the decision was just made yesterday and my lawyer was the one who called and told me, so it will still be a little while before I get the back pay or monthly payments started, but I’m on my way!
I’ve started livestreaming on my YouTube channel just for something to do and another way to connect with people. I’m doing most of the streams on my personal channel, rather than my toys and books channel. My personal channel has a lot less subs (around 200 compared to over 3,000), so if you are a YouTube watcher, please consider subbing to my channel! Here are a couple recent livestreams if you are interested:
The YouTube playback for the livestreams is a bit blurrier than normal vids, but I’m working on that! You probably want to watch them in the highest quality available to minimize blurriness.
That headline isn’t exaggerating. I had a horrible dental cleaning experience yesterday. Now to be fair, my teeth are extremely sensitive, just like everything else on my body (thanks autism), so cleanings are never fun for me anyhow. There are always at least a few painful nerves hit during the process.
However, yesterday the lady who regularly cleans my teeth was on maternity leave so I had a new lady who was incredibly slow, annoying, and seemed to manage to hit about every nerve on every tooth, at least on the front ones. I can’t recall the number of times I flinched from the pain. At least a couple times I teared up. I was starting to wish I was having a filling instead, because at least then I would be numbed up some.
I feel bad calling the lady annoying, but to be frankly honest, she was. She was one of those people who just talks and talks and talks, which drives me crazy. It was especially hard not to be annoyed when I was already having a bad experience. A few minutes into the cleaning I was tempted to get up and say “I’m sorry, but I just can’t do this today”, and reschedule for when my normal person gets back. I managed to tough it out though. Glad it is over and my regular cleaner should be back before my next cleaning!
Sorry I didn’t update you all yesterday after the hearing, but I was just too exhausted mentally, emotionally, and physically after the stress of the day. Overall, I think the hearing went ok. It didn’t start out very well since my husband and I had trouble locating the right building and ended up walking through the thick, slushy snow so far that I had an asthma attack, started crying, and was totally soaked from the knees down by the time we actually found the right building. The roads were bad too from the snowstorm and parking was almost impossible since none of the parking lots had been cleared yet.
Once we got into the building, I had a few minutes to recover from the asthma attack and calm down at least. I also had about 15 minutes to meet with my lawyer before the hearing to go over everything again. During the hearing itself, I was quite nervous. I was doing a lot of rocking back and forth (“stimming” in autistic terms).
I think I only had the nerve to look at the judge two or three times the entire hour I was in there. I mostly stared at the microphone and tried to block out everyone else there while answering questions. That seemed to help my social anxiety. I think I did a decent job answering the judges questions…and she asked a lot. I never lost control of myself, although in my closing remarks I did tear up a bit and got a little emotional talking about how hard it had become for me to keep a job due to my physical and mental disabilities.
Unfortunately, the judge did not tell me her decision yesterday. I will have to wait to receive the official verdict letter. On the positive side, my attorney did say afterwards that he thought it went great and even on the off chance that the judge gave a negative verdict, he thought I had a strong enough case that he would appeal that. I hope it doesn’t come to that though, God only knows how much longer that would make the whole thing drag out…and quite honestly, we need the money as soon as possible, especially since I just got a $1,500 ER bill (our deductible sucks).
Tomorrow morning is my SSDI hearing. I’m super anxious about it. I feel a little nauseated just thinking about it. I’m afraid I’ll do or say the wrong thing. I’m afraid I’ll burst into tears and feel embarrassed. I’m afraid I’ll somehow misrepresent my reality. I’m afraid the judge will say no and ruin my foreseeable future.
I know the judge probably won’t even give a straight “yes” or “no” answer tomorrow, but that makes it even worse because then I have to wait who-knows-how-long in suspense and worry. I hope I’ll feel better when it is over, but knowing me, I’ll probably spend the next few months picking apart the experience and everything I think I did wrong until I get an answer.
I collect too many things. I collect tons of toys/action figures/dolls/squishies/stuffed animals/minifigures (Barbie, My Little Pony, Sesame Street, Looney Tunes, Lego, Nickelodeon, Disney, Schleich, Funko Pops, Reborns, Cabbage Patch Dolls, Coraline, etc.) I have an entire room for all my toys and collectibles. I collect books, especially children’s books and books about subjects I am obsessed with, ranging from Michael Jackson, Nirvana, and Dance Moms, to art/artists, writing/writers, poetry, comics/manga, and antique books. The books also have a room of their own, which they share with my husband’s smaller but still sizable book collection (mostly history, true crime, and science fiction grace his shelves).
I have a huge collection of art supplies and stickers (which also get shoved into my extra “toy room”). I have a large collection of cds, especially from my favorite artists (MJ again, Nirvana, Foo Fighters, Enya, Simon & Garfunkel, The Beatles, 60’s 70’s & 90’s hits, Disney soundtracks, etc.)
I have an entire dresser drawer full of bookmarks, a wide selection of cute or nerdy notebooks/journals/stationery and a cabinet full of magickal/pagan themed objects I use for my little ritual altar. I also have a large collection of sentimental items I have saved ranging from photos to cards to letters to objects from loved ones who have passed on.
I am emotionally connected to many of the things I collect and the idea of parting with them is traumatic. I figure this need to collect things is part of the autistic side of me, but sometimes I become overwhelmed by the size of my own collections!
You ever go to a doctor’s appointment and feel like you somehow disappointed them? That’s how I’m feeling today. I went to see my psychiatrist and while he didn’t say anything overly negative or mean, I just left with the feeling that somehow he was a little disappointed in me.
Perhaps I am projecting here, but I kind of feel like he isn’t quite as supportive as my other doctors about my going on SSDI. Not because he doesn’t think I have real problems and medical conditions, but because he seems to think I have a lot of potential and maybe he thinks if I get disability I’m just going to sit around and do nothing the rest of my life.
This may be partly my fault if he has that impression. After all, I don’t normally talk about all the stuff I do enjoy doing while there. I only see him every couple months for a short visit, so I tend to focus on what is going wrong, not what is going right. I don’t talk about all the art I make and sell or the books I write and sell. I don’t talk about my blogging. I don’t talk about all the people I correspond with on social media. I didn’t mention that I was recently made a board member on the International Board of Sensory Accessibility. I didn’t tell him about the art contest I submitted three artworks to this month. I don’t tell him about the online communities for chronic illness, chronic pain, autism, and other conditions that have given me a chance to support others and receive support myself.
I kind of wish I had mentioned some of those things now. Maybe next time.
Well, my one-day migraine from Wednesday turned into a four-day migraine that I finally had to go to the emergency room to get rid of this morning. They pumped me full of a bunch of drugs that did take the worst of it away, although I must admit I’m scared it will come back once those wear off. They did give me a steroid shot to help stop rebound migraines, so hopefully that will work.
I’m exhausted and somewhat depressed about the whole situation. I went at least a couple years with barely any migraines and then this just pops up out of nowhere. I can’t help but think part of it might be all the stress about my upcoming SSDI hearing. I try not to consciously think about it, but that doesn’t work so well for obsessive minds like mine.
I’m sure you guys understand that this will be a short post since I’m not feeling too great, but here is a picture of an extremely ugly, grumpy stuffed lion for you to enjoy:
This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:
Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.
Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!
Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.
Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.