Tuesday, February 11, 2014
Well, a little more good news. Tip: if you sign up for EFT (direct deposit) right away when applying for SSDI, your payment will come pretty quickly. I called the SSDI office today to ask some questions, and it turns out that they deposited my back pay on the 6th! I didn't even think to be watching my bank account. So I got my year and a half of back pay (they don't pay you for the first 6 months, for those who don't know) and I found out my monthly checks will start next month and it's several hundred dollars more than I expected to get. Also, medicare will start in July.
I also talked with my county worker. My food support will drop considerably, but that's fine with me. I'll have a year to pay back the cash assistance I've gotten. Since I have a CADI waiver (which is totally based on being disabled, not on income), even though MA won't cover everything anymore (because of my income) CADI will still cover in-home services and that counts towards the monthly 'deductable' I'll now have with MA, so that should help with medical costs until medicare kicks in, which will change the dynamic of everything.
The bad news is they STILL haven't figured out my housing situation. I have 1 week until I'm supposed to be out and they don't know what to do! Today they told me they were thinking about putting me and my cat up in a hotel. STUPID! First, the cheapest hotels cost minimum $60 per night. Second, with a pet deposit and having a location that's safe, it'll be more expensive. Third, I can't live off fast food for 1-2 months because I have gastroparesis, which means I need a microwave, stove, and fridge so I can have at least 1 decent meal a day - which means I need an extended-stay hotel that will cost even more. Fourth, they would have to pay to keep everything I own in storage. Fifth, they would have to pay movers twice, not just once. This means that it could cost several thousand dollars to keep me there until they find a place for me to live. Yet the ridiculously stupid moron CADI worker refuses to look outside of the county for housing and absolutely is against having the county pay maybe $1000-1200 per month to rent my house from the bank until they have a place set up! Yet he talks up how freaky intelligent he is, bragged about mensa (if mensa recruited him then their standards must have fallen below 'average' or he was seriously scammed!), and shames me every chance he can. He should NOT be in this field of work.
How about more reasons why this hotel idea is ridiculous? Sixth, I keep at least 14 medications on hand at all times - some are OTC but others should not be left where a random housekeeper can get to them. This means I would have to carry all of those medications with me everywhere I went and risk being attacked/assaulted by someone who wants them. There aren't any that would typically be sold (I don't take narcotics), but no one would know that until they read the drug names and looked them up. Seventh, I faint/fall frequently so is having a hotel room really that safe? If I call 911 how long will it take for them to find me? The county won't be sending any workers in, so if I trip and fall and get another concussion, how long will I lay there before someone finds me? Eighth, let's be honest: hotel rooms are not clean. They are disgusting. The floors get a quick once-over or spot-cleaning so you should never walk barefoot on hotel room floors. The bedspreads and pillows are rarely cleaned thoroughly. The tv remotes, phones, and lightswitches are rarely cleaned (or cleaned well) and can be covered in fecal matter and bodily fluids. Ninth, has anyone ever had a hotel room shower that worked well? I have a hard enough time showering in my shower; putting me in a hotel room with a crappy shower just won't be safe/sanitary/sane. Tenth, what hotel would be willing to give up a handicapped room for a month or two when most hotels only have 1-3 handicapped rooms.
So, I'm going to go to my bank and see if there is any chance they would be willing to give me a mortgage with a cosigner to try to keep my house. It's a massive long shot, but I have to try. I also called 211 - United Way - and asked if they had some places to call that I could have a place to stay for a month or two while the idiots get their crap toether. They gave me a couple places, so I passed that info on to the CADI worker (I can only do so much of his job for him!). Heck, if I like another place better I might just stay there.
The most heartwrenching thing is if this decision and payment had come in just 1 month earlier I could've saved my house! I could've stayed here as long as needed while I find the right place to move to and then hire a company to rent this place out for me so I don't have to deal with it. Just 1 month separated me from having everything work out and living this nightmare. JUST 1 MONTH! I'm so disgusted and I blame the jerk of a lawyer who failed my case!
Also, getting this backpay doesn't make up for all the time I went without any income. It's a huge number, but I'm even further in debt and if you count how far behind I was in my mortgage, my debt is nearly twice as much as that payment. I really hope LTD comes through sometime this year to make a bigger dent in this mess.
Tuesday, February 04, 2014
I'm exhausted after spending the day doing... just doing. It's 3 am and I still have to shower before going to sleep and getting to an appointment at 2 pm to work on my advance directive again. But...
I got a letter from SSDI today. The judge gave me a fully favorable decision (the judge agrees I'm fully disabled) going back to the day I stopped working, Jan 11, 2012. I'm absolutely shocked I didn't have to go through another hearing and 6 more months of waiting. But since they ignored my most serious and incurable conditions and instead focused on my mental health conditions, I have to go through a review in a year. So I need to keep going to doctors, gathering information and records, and getting that sent into SSDI to prove the conditions they ignored in this determination so I don't have to waste time every year in the reviews.
This is just the decision. I have to wait 2-3 months to get my back pay and my monthly payments processed. I have no idea what the payments will be, but I know it won't be enough long-term. So much is still up in the air, but this is a GIANT step forward. My LTD lawyer is going to work on my appeal over the rest of the week and the weekend, so hopefully that'll finally get done and sent in; then I have to wait 3-6 months for their decision and possibily litigation or mediation after that.
But hey, gotta take a win, right? At least I got a lot done today. I have more to do tomorrow, but it's far less and I plan on resting as much as I can because today took a lot out of me.
Still don't know where I'm going to be living. The county workers are apparently having a big problem finding anywhere to put me. I'm supposed to be out of my house (which was sold by sheriff's sale on Jan 14th) within 2 weeks and they can't find anywhere for me to live and get the services that I was approved for in mid Nov (and should have been set up already).
I'll try to update more when I have time, energy, and focus to write out more.
Thursday, January 09, 2014
Called my neurologist's office today. I wanted to mention the concussion while I asked if I can keep increasing the gabapentin now that the side effects have stabilized at 200mg 3x/day. Strangely, he and his nurse are the first people to care at all when I mention 'concussion symptoms'. Every other time I've had my head hit into something and had these symptoms no one believed me or cared. I've learned to just live with these types of symptoms for a few days/weeks until they go away or just fade in with the rest of my symptoms. Well, when I finally had a chance to talk to my doctor he wanted to talk about the concussion not the medication. Ugh. They're symptoms of a MILD concussion, not a severe concussion. Yes, if they get worse I'll go be seen by someone. If the symptoms become very serious I'll get to the ER. I know all that can be done is to let the body heal it on its own and there's no medications or treatments that can make it better. So I finally go him to stop with that and get onto the reason I wanted to talk to him: can we increase my meds? The side effects have gone down and I'm feeling more overall pain (and a heck of a lot of pain in my head) so I want to slowly increase it more. He said it was okay. Yay. But OMG it drives me crazy that no one has ever cared about these types of symptoms before, but suddenly they're important to talk about? But why does no one realize I am always going to have fainting/loss of consciousness issues because I've had them for nearly 20 years on and off, so let's put in the effort to give me a safe place to live so there's less chance of severely hitting my head when it would be days/weeks before anyone would even think to check on me to find if I did serious damage and didn't wake up instead of suddenly making a big deal of symptoms no one has ever believed or cared about in the past?
Yes, I'm really annoyed by this. And it bothers me more that it normally would because anger is my go-to emotion since I hit my head. But really, if it is such a big deal, wouldn't someone at some point in my life asked how many times I've had concussion symptoms before?
And now my throat is burning like I've swallowed acid. I haven't left my house since Friday afternoon and no one has been here, so how the heck am I getting sick? GRRRRR *headdesk*
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?
Thursday, December 19, 2013
I spoke with my sister today and found out she's been having some serious symptoms for the past year and kept being turned away by doctors. (She lives in the small town in WI we grew up in, where the medical staff is decades behind in knowledge and light years behind in listening to patients.) My sister isn't able to be assertive with doctors like I've learned to be. She finally found a doctor to listen to her, and in testing they found not only dysautonomia and a growth on her liver, but a 1 cm tumor in her thyroid. I know there is more she's dealing with, but she's understandably overwhelemed. Her doctor wanted to see me too, and if I can find a way to work it I will because the knowledge I have that links what she's experiencing to the conditions I've already been diagnosed with (EDS, mitochondrial disorder, possibly more) that are genetic disorders which will be in her and can explain what she's dealing with - to a point. So now I need to push some of my specialists harder and see if I can find a way to see my sister's doctor with her to try to help her. What I tell the doctor could make a big difference in her treatment. They also need to understand the EDS complications that could arise during the surgery to remove her thyroid (partial or full) to try to minimize the risks.
I feel horrible for her having to go through this. I was hoping I had gotten the worst of the health problems from out faulty DNA, but my sister was experiencing it and has kept it from me for a year. I am so angry at the world right now for giving her this struggle instead of me. I could handle this so much better than she can. She shouldn't have to go through this! I wish I could take it away from her and put it on myself. I don't care that her and I are totally opposite and can only get along when we're complaining about mom. I don't care that she has been hurtful to me in so many ways for most of my life. So what if she has not cared about or supported me during all the hell I've been living with. We already know I'm screwed and there's not much left for me, so why does she have to go through this too?
Screw the holidays. They never bring anything good.
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