Tuesday, December 23, 2014
Little children are always told to be good so they get gifts from Santa at Christmas. They're told if they don't behave, they will get a lump of coal instead. This rule isn't really true, we know, because there are good kids who get nothing and bad kids who get way more than they will appreciate. As adults, we don't have Santa watching us and instead are as good and as bad as we please. We also know that there is no such thing as all good or all bad and that what we get is based on the people who love us and what we do for ourselves.
Growing up I lived through a lot of hard times, and was either led to believe it was normal or that I deserved the harshness because I could never be good enough. When Christmas came around, even at a young age I knew there was something wrong with it all. I was told I was never good enough, but got presents, even while being punished for one thing or another. I wanted to do good, but because I couldn't fix everything at home and couldn't fix myself how could I do any good for others? The older I got, the worse it got. I learned that because of the wounds of childhood I was going to be a homing beacon drawing in people who wanted to harm me. I was taught over and over again that I could never do or be enough to make up for whatever others' problems were, and I would have to pay a consequence for it. Eventually Christmas has become a cruel joke, an end of the year reminder of how much of a failure I am and how I didn't deserve the magic of Christmas because I could never be good enough.
This year I've tried to do different. There's no decorations, no carols, and no festive cheer in me; but I have given gifts to a few, have been kind to strangers for no reason except I felt I should in the moment, and I've tried to find hope for myself. I don't like to have hope because it sets me up for another kick in the teeth when everything goes wrong. But I tried anyways. I know I can't do as much as I wish I could, I couldn't be as good as is expected of me, and that there are a lot of opportunities I could've found to do more. I just hoped that my efforts would count towards something, even if it just meant brightening up someone else's day.
I wish someone would explain why I received coal yet again. Why has yet another hope blown up in my face? Why did something so exceedingly important to me have to be harmful instead of helpful? After a year and a half of waiting, an intensely difficult trip to and from Chicago on a tiny prop plane, and 6 weeks of waiting culminated in my greatest fear: the paperwork from the EDS specialist in Chicago did nothing more than regurgitate the information he was given and said to do PT. There's nothing in there about the neurological issues. There's nothing in there to tell the doctors I'm not lying, I'm not making it up, I'm not looking for attention, it's not psychosomatic, and that this is related to the EDS. I could've found more information by googling EDS than is contained in that paperwork. The time, money, and effort to see a specialist who is held in such esteem by the EDS community was just a total waste for me. Now I'm even further away from trying to figure out the problems and no doctor is going to take me seriously. So many others have seen him with not as serious of issues and ended up with 2-3 times the effort from him than I did. To have this come just days before Christmas is just one huge lump of coal to add to the growing pile I am forced to haul around.
Why was this my gift, Santa? What did I do that was so bad that I deserved yet another burden on my shoulders? What do I have to do to be considered good enough to get something good from the holiday season? Why do things continue to get worse for me, instead of better? I don't think I'm asking for too much. I'm not asking for a new car to replace mine, which is 15 years old and falling apart and is needed to ensure I can get to appointments, get my meds, pick up food and necessities, run errands, get my cat to the vet, etc while minimizing the stress and strain on my body. I'm not asking for a new home, though the place I'm in is horribly dangerous to both my cat and me while being barely affordable and not at all suited to the needs created by my conditions. I'm not asking for money to ensure I have necessities like a roof over my head, food and supplies for my cat, food and supplies for me, etc. I'm not asking for new electronics or the latest anything. I'm not asking for these things because I'm trying to figure out how to do this all for myself and is far too big of items to ever ask for. It'd be nice if the road to these things (and similar things) was made easier, but I know if it's important enough I'll have to find a way or go without.
All I wanted for Christmas, and especially for the new year, is for life to be a little less impossible. I wanted to be heard and understood when I speak. I wanted to have people smarter than me to step up and help find the supports I need (housekeeper, aides, doctors, etc). I wanted to have someone in the medical field take pity on me for the hell I've already endured and believe me enough to work with me to consider some options to help at least slow the progression of symptoms. I wanted a little less stress to be piled on me and be allowed a little more joy. I wanted to be given the chance to have the same rights as those around me, instead of being treated like I'm less than human by more people than I can count. I guess what I wanted is just too difficult to deliver. It's easier to give things that are bought than to give an idea. Maybe I should just be selfish and ask for a big pile of money for Christmas so I can use it to give up on everyone and live like a shut in hermit for as long as my body can take it.
Maybe I should simplify this.
I've been a good girl. Please find a way to give me enough money to disappear from society and become a shut-in before my life becomes even more impossible. This will be a gift to me in the short term, and a gift to many others in the long term.
Saturday, May 03, 2014
No, this has nothing to do with SP, but I'm angry and hurt that I've been plagiarized elsewhere. I want to say something about it here because maybe someone who's plagiarized in the past or might consider it in the future (even on a small scale) will read this and realize how hurtful and disrespectful it is, and choose to correct the wrong or never do it.
I wrote this review on Amazon back in January. Read it two or three times so it sort of sticks in your head.
(EDIT: they deleted a significant portion of the review to remove my words.)
Now read this review that was just posted yesterday. (I've asked for the post to be removed, so if the link is broken that's why.)
Do you see the blatant plagiarism? Several sentences reversed and multiple distinct phrases are taken directly from my review. The significant portions of my review were stolen and put on tumblr then tweeted about to the movie's twitter, as well as the main people involved in the film, looking for recognition for words that aren't even theirs! It's wholly disrespectful to everyone involved in the movie to steal someone else's review then beg for attention for it instead of taking the time to put in real effort to create an original review with unique thoughts.
I responded on twitter, including the people the tweet was originally sent to, in hopes they will see it and give no further attention to this reviewer. I've commented on Tumblr and asked for an apology to me, and another should go to the writer/director/actors/crew also. If this phony reviewer can't so much as apologize and delete/rewrite the review, then they deserve to be discredited. I also sent an email to Tumblr to get involved due to their rules being broken. If the poster doesn't remove and/or rewrite the post, they should be removed from Tumblr. Of course, other parts of the review seem familiar, as if they may have taken sections from other reviews also. So disgusting!
What is wrong with some people that they think this is okay and that they won't get called out over it? Have they not learned anything from the Shia LeBeoff fiasco?
EDIT: As I said above, they deleted a large portion of the review to remove my words. It's a much thinner and simplistic post now! They also deleted the comment I left shaming them. Either they saw that my posting about it was going to get too much attention to escape (both on Twitter and my comment on Tumblr) or my complaint to Tumblr put pressure on them. While it feels better to have them give in and remove my words from their review, I believe it would be better for them to admit the wrong and apologize for the theft. There's no point in pushing for more, as it's doubtful I'll get an apology, so I have to forget it and move on. But I did screen print their original post should I ever need it. I'm also trying to remember the saying "imitation is the greatest form of flattery", though it's hard to feel flattered when they begged for attention after stealing my words.
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*
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