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Another Dys/mcad/cfs Patient Approved For Disability! Me!


hilbiligrl
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Just wanted to let you gals and guys that I received my approval letter today. I'm 34 and the judge voted in entirety for me being fully disabled.

I never expected it, even these past 2 years its been going. I figured mine would be such an odd case. But, it was how i explained it to the judge how it affected me inside and out, who i am, what i was, etc..... and what it has taken away from me (the disease(s))...... my attorney said that was what got it. The judge truly believed every word i said, and he knew my educational background too and all.

I'm very thankful, no..... im extremely thankful for this..... but i also feel like a schmut, or a low life because where i was going to pharm school, 2 & 1/2 years later im on disability???? I'm so much smarter than this...... that's what i want to say to myself over and over.......

so, while it may be a good thing, i feel already the stereotyped negative social connotations about my own self being defined disabled..... :(

i dunno, maybe it will grow on me as i continue to be in a very debilitated state.... oh well.

nonetheless..... I am truly grateful, deeply, truly grateful. There's no doubting that.

with love

tennille

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Congrats on the approval!!

I totally get the feelings you describe. I was a type A work-aholic when all this happened. And I was the girl that fired the other people that didn't show up to work...then, all of a sudden, I was the girl that didn't show up to work! Some days the feelings of lose and shame are really bad. But, then, I remember some very sage advice my boss gave me about 2 yrs. into this issue. She said, "You need to be kinder to yourself. If this was one of your employees, you would be bending over backwards to help them. Why can't you be that nice to yourself?" So, I try to remember her words when I am feeling really bad about this situation. I hope her words help you, too.

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Congratulations! I wish I was eligible - found out what was wrong with me too many years after disability began and now it's too late to even apply. That money would be so helpful to our family. Be glad you have it, but I totally understand your feelings - we're too young for this!

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thank you both so very much! Yes, i am still in the 'weird feelings' about all of this, but so very thankful at the same time. And Katybug, i have read that saying from you on other posts.... i keep forgetting it, but when i read it on here from time to time, i try to practice it.... i do think i need to write it down and post it in my fridge...... i do need to me more kind to me, as im awefully hard on myself already.... and then this disease and all. Thank you for that and it does help believe it not!!! I just have to remind myself of it :) (and yes, i was a work a holic too..... i mean, big time!!)

Im so sorry naomi...... have you tried for SSI instead of disability? tThe disability claim thing, i think i'll only get around 400-500 a month, by the time i applied, i had been struggling in and out of school and work and had not made much money the last few years before i applied 2 years ago.... 500 is not much, but i will be extremely grateful for it, as i can buy my supplements and meds that i have to pay cash for..... right now, i end up doing with out them sometimes 2 weeks and up to 3 months till im able to buy them.....so i know that will help and im so thankful for that. Plus it will honestly, help buy food.......

I know my dad applied waaaaaay too late for disability, but he applied for SSI and got it a few years back..... i think he only gets aorund 600 a mth....... but that's better than nothing...... they do get back pay for SSI if yu are found 'disabled'......

Ok gals..... i better jump off of here a bit, i've had 2 really bad sick days.... ugh.... this is no fun.

thank you both again for your replies :)

i wish you both the best!!! love yall

tennille

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Tenille, I would not feel bad about it at all if you truly need it. I've thought about it myself because of how bad my RA can get and now having the pots on top of it. Most days i struggle through the work day. What has stopped me is that I don't agree at all with people on disability still living "active" lives. What I mean by that is if i'm too sick to work than I also better be too sick to go on vacations, walk around the mall, run around with my kids outside, and go to concerts. Since those are all things I love, I don't feel I could trade them for disability pay. However, if I couldn't do those things anymore I would not hesitate to apply. Don't ever feel bad for asking for help, if you really need it then you are just as entitled to it as anyone else! Also, think of it as temporary. Hopefully one day we will all be able to have our old lives back and that includes working how, when, and where we want to.

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Congratulations on making it through that process, Tenille! I haven't yet applied for disability, but I can totally relate to the feelings you're describing because I've been feeling like a schmuck trying to get ADA accommodations at my work. My family has always disparaged anyone who needs any sort of social program or assistance, so naturally I feel some shame about needing them myself. But these programs exist for a reason and you're helping everyone else who is in this same situation by continuing to set the precedent that this disease is real and majorly affects our lives! I try to think like Julie suggested: that this is just a temporary situation--it's what I need right now, but not necessarily the rest of my life.

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Congratulations Tenille!! That is great news!! Every little bit helps and will make you feel more independent to have some of your own. But I know how you feel, I went to the university and had an amazing position in my field when I had to quit. Living on disability was not my dream when I went to college and started making good money. I think a lot of people on here have been successful and have all been in the same boat. And many young people had big plans to be hard working adults. But life has other plans sometimes. I have been turned down for disability since 2007, it will be a happy day when I can get approved, but I know what you're saying. It's sort of bitter sweet.

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thanks everyone!!!! Yes, 500 is better than nothing, no doubts there and with that i can pay for supplements and meds that i've not had money to pay for and have to go without for up to 3 mths.... I actually think the whole process from beginning to end only took just about 1 year and a few mths..... but they say I won't start 'getting the check' for another 6 mths, unless i qualify for SSI too and then i would get my payments sooner.... so maybe that's why they always say it takes a good 2 years.

as far as advice..... i have no clue!! that's the weird thing about all of it..... i guess over a 9 year period going back again and again to my doc (who i fired in the end) and going to the er repeatedly in a comatose state, and going to vanderbilt and many many tests over these 9 years...... well, everything was well documented...... cuz im a very persistant person. And each year I would do a fresh 'write up' of all of my symptoms and how they felt, which would be several pages long and i would submit it to my doc to put it on my record. But Honestly, my attorney handled it all from beginning to end, he only saw me 30 mins before the day of the hearing and he was like 'just be honest and explain what this has done to you'...... the judge asked me questions for about 15 mins and i was declared that there is no job whatsoever in today's society that i could ever hold down, especially with a 9 year record of all that's been going on and vanderbilt and my new rare case doc (who i've had for over a year now) have been able to piece it all together with diagnoses. So, all i done was answer questions and really explained how this all affected me, going from pharmacy school, straight As in college, and now to this in less than 3 years. I basically told him i was too smart for this and it was so very humiliating and embarrassing and explained alot of what goes on in a day.

That was it..... then i was approved. My attorney said i was his first case of this kind in over a 30 year span (he specializes in disability cases).... but he did pay me a compliment. He said it was my educational background and how i described it all and the 'speech' i gave that made them believe what i was saying was truth. I'm still kinda scratching my head. But thankful.

I am still scratching my head........ i mean, if it wasn't for this process of applying, i would have never found my integrative rare case doc..... cuz social security sent me to a reknown psychiatrist who after talking to me for a couple of hours and he said he had never talked to anyone past 30 mins in any case...... but he was curious as he had seen autonomic dysfunction but not around here..... so he knew what it was.... and was able to confirm that I wasn't crazy, that what i have is real and really messes up the body, which in return has effect on the mental state at times, in the severest flares and all/ or the constant state of illness. Alot of what he said about the diseases was right on, and he suggested i needed to fire my doc and submit my case to the doc i have now.... which was a blessing and a miracle, since he wasn't taking any more patients, but after reviewing my records and finding there was no substance abuse or chronic pain issues, he took me on and all.

the odd thing about all this.... i never saw an actual medical doctor. I was told that social security would make me see an actual doctor plus the psychiatrist. So, many things about my case, were just weird..... i only saw a psych, but it turns out his knowledge was vast and he knew what i was dealing with. So, they based their decision on my 9year medical records of all of this, current stuff from vanderbilt and my current doc and also findings from the psych doc too (of whom declared I had no mental issues other than anxiety disorder, which i've had since i was a child)......

so.... in all that.... i know its not much help, but maybe shows my process here in tn......

thanks everyone again!!!!

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I never had to see a social security doctor either. But I had several years of documents recording appointments with over a dozen specialists, abnormal testing including 2 weeks at Mayo, over a hundred physical therapy visits, etc. The judge at my hearing said that most folks try to get disability after maybe seeing one or two doctors. She said that just attending all of the appointments I'd had over the last 3 years would preclude me from doing any type of job. She said that going to a prestigious research center like Mayo (or Vanderbilt) was also helpful in validating my illness. She had no problem pronouncing me as disabled based on the volume of testimony in the doctor's records.

I also sent in to the judge a symptom diary that I'd kept for the 3 years, professional journal articles defining POTS/OI and how it affects disability, and I sent in a diary of all of the medical appointments/phone calls with doctors that I'd had over the 3 years prior to the hearing.

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