Wednesday, January 08, 2014
A week ago, on New Year's Eve, I got a concussion and it's really made everything else so much more difficult. With my conditions, as my dysautonomia specialist said, no matter how much they try to treat me, I will always be prone to fainting, losing consciousness, falling, etc. I avoid the triggers as much as I can, but sometimes I forget or it just happens before I realize it. On NYE, I stood up and stretched, forgetting that's a major trigger. My body collapsed and when I fell backwards, instead of landing harmlessly on the couch like I usually do, my head hit the arm of the couch, with the force pushing the padding out of the way so the base of my skull hit on the edge of the wood that makes up the frame. Even through the fog of not having adequate blood flow to my brain I could hear and feel the crack as it hit. For the past week I've had symptoms of a mild concussion from it, but I know there's nothing they can do about a mild concussion (just rest, relax, be extra careful, and be seen immediately if the symptoms become severe) and I've had my head slammed against so many things in my life (floors, walls, lockers, etc) that this really isn't different.
Unfortunately, on top of everything else, these symptoms are making my life far more difficult than the awful it already is. Turning my head causes explosions of pain, my body is working a little worse, my tinnitis is worse while my (already dang near superhuman) hearing is even better, etc. Ironically, even though I'm nauseous all the time, having EDS related GP has taught me how to fight my stomach's threats to vomit, so no matter how bad my stomach wants to throw up, it probably won't happen.
In a way, it's good timing. I got a letter from social security disability (SSDI) saying they want me to be evaluated by a psychiatrist/psychologist about my physical conditions. Yes, they want me to see a psych doctor about physical conditions. My lawyer couldn't convince my doctors and I to lie and say all my symptoms were somatic (I so desperately believe I'm sick that I made my body become sick), so now the judge is sending me to a doctor they pay to say there's nothing wrong with me. I went to the same place (I'm pretty sure) a year ago, and they said there was nothing wrong with me at all and I wasn't disabled. The doctor who spoke against me (impartial my rear end!) at my SSDI hearing was a joke, as he couldn't pronounce several conditions, disagreed with the doctors who are treating me about the diagnoses I have been given, and no one in that room (including my own lawyer) believes my symptoms, apparently. So I get to go to this evaluation and deal with someone who has no idea what these conditions are so he can say I'm faking, making it up, I'm overstating my symptoms, etc. But now that I have these concussion symptoms, it might make an impact.
Part of the symptoms I have includes a personality change. Sure, I have issues (no one with this many severe, rare, and misunderstood conditions who has wasted decades of battling the medical system to find the right doctors to get the proper diagnoses won't have some issues), but lately I've noticed I go from calm and rational to outrageously furious in seconds and I have very little focus so I can barely play games I usually play online or watch a tv show without getting horribly distracted or completely forgetting what I'm doing. So I have a feeling while I'm in this evaluation I'm going to lose my patience when I can't focus on what's happening and my anger explodes. Maybe that'll make an impression about why I can't work.
The next day my house is being sold in a foreclosure sheriff's sale. I'll then have about a month to be out. I don't know where I'm going. The people being paid to help me are playing stupid games and acting like I'm normal. They told me to pack up my house and be ready to move it. I CAN'T YOU IDIOTS! THAT'S THE WHOLE POINT! So I might have to just leave a lot of my belongings behind. I was hoping to sell everything in the house than be taken out (the fridge and dishwasher are brand new after all), but I can't deal with that, so the money I could've gotten from that, or at least taking them with me in the hopes of using them again someday, is gone because no one will help me.
The county approved me for lots of services, everything from housekeeping to someone coming by to help take care of me every day, but the worker being paid to do it is refusing to do so. I was approved over a month ago, but he said he won't even try to set that up until after I'm already moved in and settled at wherever they're going to put me. But so far what they've shown me is only fit for rent-by-the-hour, and would be a SERIOUS danger for me (you can't put someone who uses a walker into a place that requires getting up like 8 dangerous stairs with a single railing that is not made being used to pull a body up stairs - in amongst dozens of other issues). Then they're telling me I have to go out more and do things and be social. Some people are so completely clueless and disinterested in doing their jobs well.
After I found out about my sister's cancer, I talked to her again the next day and found out that awhile back my mother had a stent put in her heart because she had an artery very blocked (I think she said about 86%) and was soon going to have a heart attack. Neither of us are surprised, since she's been obese my entire life and refuses to eat healthy or exercise at all like the doctors keep telling her to do. She also refuses to admit she has serious mental health issues, let alone even consider getting help for them. I'm estranged from my parents (which is why I didn't know) and a large part of that is because my mother has such serious issues she refuses to even attempt to address, and I have far to many issues myself that having her problems severely affecting me, instead of having both of them helping me the way parents are supposed to help their children, is far more than anyone should ever have to take on. So I'm not as sympathetic towards her as most people would be to their mother, and for very good reasons.
I'm trying to figure out what to do about my cat. I've had him over 8 years, since he was 2 1/2 months old. I've become allergic to him and I'm having a hard time taking care of him. Since I don't know where I'm going to be living, let alone how bad it will be on him, I've been thinking it's probably best to give him up, at least for now. It hurts so much to think about not having my little boy with me, but it's probably the best decision. I'm thinking about asking a friend to take him in, but I'm not sure if she'll be willing/able. Another friend might be able to, but she lives in another state and I don't know when she'll even be around. But the thought of giving him to a shelter where he might not be taken in and could be put down is unbearable. He's a little troublemaker, but he's so smart. If there was a way to eventually get into suitable housing maybe I could get him back, but I don't know.
I also don't know what to do about my car. It's 15 years old and has issues, but works enough for short trips around town. Disability transportation sucks, as they like to strand me or just not even pick me up, so having my car means I can get to appointments when they screw up, and allows me to run errands a thousand times easier. With my conditions, I can't sit around waiting to be picked up, it's hard to know exactly how long it'll take me at each place (and at places like the library it only takes about 5 minutes, but disability transporation won't allow a stop that short), and running several errands in an hour by driving myself is easier than running 1-3 errands in 2-3 hours then having to go out again the next day or the day after for a few more. But I don't have the money to pay my car insurance (which is due in 4 days) and if anything breaks I definitely can't afford to fix it. Both my credit cards are maxed out, my bank accounts are nearly empty, I'm almost out of cash, and I still owe money to my LTD lawyer. Plus whatever crappy place they shove me probably won't have a garage, so my car will be damaged by the elements, if not broken into, and I can't just clean off snow from my car in the winter without risking seriously hurting myself.
I feel so broken and hopeless. One month is not enough time for even a miracle to step in and help. I can't take care of myself, I'm not getting help to take care of me, I have no idea what's going to happen to me in less than a month... How could anyone have hope in my shoes?