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Everything posted by CarriePan

  1. Hi, I applied and was denied 3 times in NY. Hired disability advocates and they won big for me. Scleroderma is a compassionate disease but I think becoming more common. Good luck and chart everything from day one of onset. The more facts you have the quicker your claim will get through. ~Carrie
  2. Thanks so much! What a relief! :emoticons-yes: xoxo
  3. Hi...Yay Jefa! Ohhhhhhhhh I got it!! YAY ME!! Finally after 3 years. I got a deposit but no letter yet. Still can't believe it's real. Hope ya'll are doing ok.
  4. Hey Shelley, Still nothing as of today. Wow they sure take their time don't they??? Ya think it's good news if they are taking this long on the money part of it?? Carr~
  5. Thank you all for the encouragement and kind words. As we all know this is rather frustrating. Hope you all are doing well.
  6. The caseworker called today! Yippee! She said she will mail me a letter stating how much money I will get and when it will begin. Could this be GOOD NEWS? :emoticon-dont-know:
  7. Hi, So I called the number on my full approval letter to SS. I left a message because it went straight to voicemail. The message says...please leave ONE message and I will get back to you within a WEEK! Seriously? This is for determining the monthly payments if any. I find this rather disturbing since they are playing with our lives. Shaking my head. :wacko:
  8. Shelley, I'm fighting for SSI This whole process is so messed up. You are classified as being disabled yet you need to fight for help...I just don't get it!
  9. Hi~ Got a letter today stating that the ALJ determined that I meet the medical requirements for SSI. That's the good news. Bad or iffy news is that I might make too much in child support for me to get any financial help. Does anyone have info on if your only income is CS and loans from someone else, is that counted as income? Frustrating!
  10. Hi~ mio, glad to hear you qualified so easily but sorry for the reason. The hearing went well I thought. My attorney said it was pretty much a no-brainer win. But we all know nothing is certain. The judge asked me all the questions. I answered honestly and wasn't nervous at all. The judge was the nicest one we could have gotten (per my attorney). A couple days ago I received a call from my attorney that the judge had made a decision and it was being sent to the writer. Keep your fingers crossed Carr~
  11. I am diagnosed as having Sclero, Sjogren's, unspecified constipation, CREST. I had all my records sent to my attorney since 2007. I am going in front of the administrative law judge (ALJ) next week and I am a nervous wreck. I have been denied twice already. SS admits that I have all these diagnoses but because my age of 48 is the main factor working against me. They said if I was 50 it wouldn't be a problem...what the? Ugh.
  12. Hi Jac, Welcome!! Hope you find peace here as I have. Not easy going it alone but here you can feel at home :) I was diagnosed in 2000. I also have Raynauds, Sjogrens, and intestinal flare ups. Breathing is getting harder for me when I overexert myself. t's hard to adjust to slowing down and not being able to do things normally. At least I'm not feeling guilty for napping anymore. :happy-dance: Big hugs to you. Again, welcome! Carr
  13. Howdy Barefut! Hope you're doing well! When I got divorced my COBRA cost me $680 a month. Cheaper than personal insurance actually. It went up $90 a month in a year. Hopefully my Social Security will kick in. Don't know what I'll do if it doesn't. This country is messed up on medical insurance. I thought for sure it was a compassionate disease, but in New York they really don't see it that way. Grrrrrrrr~ ;)
  14. Hi! The SSI process has been over two years already. Next month I go in front of a judge. This should be fun. :emoticons-clap: Anyone have insight on what they will ask? I've been denied twice so far. Social Security admitted that I was clearly disabled but my age is a factor. Why should it matter? I'll be 49 this year and they said if I was already 50 it would make a huge difference. 1 year? Grrrrrr. What a bunch of baloney...just because we look "normal" doesn't mean we are healthy. Any suggestions welcomed. :) Carr
  15. Hi :) I have a lot of bruising on my legs. They are painful and I can feel the calcinosis under them. My rheumatologist suggested cortisone shots. HA! That would be more painful since the bruising spots have no fat under the skin and it's bone. Sometimes it feels like they are burning from the inside and someone is hitting them with a hammer. He did prescribe dicofenac, a topical cream for the pain. Works okay but the pain is constant. Staying off my legs helps a little. Crazy how this disease manifests. Hope you feel better!
  16. People who REALLY need it have to die before they get it! Soooo not fair! Something is definitely wrong with our country.
  17. Hi, I take cevimeline 3x a day. It seems to help. Side effect is that it makes me dizzy. Don't know if it's the meds or just me
  18. Hi! I have the same thing. It started all of a sudden about two months ago, but it's only on one arm. Now my arm kinda feels heavy and tired with the burning. And when it snows now I feel it before it starts falling :emoticon-bang-head: Weird right? My rheumatologist is sending me to a dermatologist. I thought he'd send me to an ortho guy but who knows...maybe next! Hmmm I'll let you know what he says. The burning bumps are crazy! Hope you enjoy your holidays!
  19. Hi, I know the scratching wants to make you go crazy for sure. I've been on prescription creams, regular anti itch stuff, etc. I did find that when I put Eucerin cream, the thickest you can buy, for sensitive skin in the refrigerator and glob it on it feels soooo good :) just a thought. Not that it makes it go away completely but might give you some time to heal a little? CarriePan
  20. Count me in! All of the above. I can wake up and able to hold a toothbrush and move on with my day and another day, ughh I sleep the day away :emoticon-insomnia: It's nice to be around others who think you aren't nuts! Feel good!! Carrie
  21. I was on Methotrexate for over 2 years. I took folic acid with it everyday. I felt a whole lot better about a month later but nothing like you are experiencing. I was taken off it in January and now I feel horrible! All my bones hurt and my chest is squeezing again. I can feel the pain in my bones and it's not fun. I go back in April. My rheumatologist wanted to see if sclero is cyclic or not. But I'm not liking this cycle ughhh Hope you feel better :)
  22. Welcome Lori Ann~ Sorry you have all this going on. I have limited, crest, other stuff happening with it. My handds and feet swell like all the time. My one ankle is always swollen and hurts. I've been losing weight, so that seems to make my bones a little better B) Just to let you know...my cardiologist said she's going to have an intervention if I read too much on the computer LOL Hope you are feeling a little more comfortable by being on this website. Take care~ Carrie
  23. YAY for me! I have one too LOL Since being on weight watchers to lose some weight and prilosec2x/day, life is easier. I wonder what's next?!?! ugh....Carrie
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