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#1 Alice02

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Posted 21 February 2008 - 12:26 PM

Hi everyone, I'm new on this website. I was diagnosed more than twenty five years ago with Scleroderma (Mix Connective Tissue Disorder Disease). If anyone of you have any information or suggestions that can help me cope this terrble disease, please let me know?

Alice

#2 RememberingToSmile

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Posted 21 February 2008 - 01:48 PM

Hi there-

so where are you now - what are you going though?

-RTS

#3 Sweet

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Posted 21 February 2008 - 01:52 PM

Hi Alice and welcome to the Sclero Forums. I'm so glad you've joined us, but sure sorry it's due to your MCTD. Sounds like you've been battling it for quite sometime.

What type of treatments have you received thus far?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Alice02

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Posted 21 February 2008 - 03:48 PM

I'm here, I just still not familiar with using this website yet.

Alice

#5 Alice02

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Posted 21 February 2008 - 04:13 PM

Hi Pamela, thank you very much for your kind words. I had so many treatments and medications that I can't even remembering them all. However, I'm on Hydroxychloroquine for the past four wich it was decribed to me by Dr. Harry Spiera, my condiction did improve in term I stoped having too many calcium deposit infections. You probably heard of Dr. Spiera he is very well known in the world as Specialist in Scleroderma diseases. He really did help me to found out what type of Scleroderma I have, after many year of confusion. Now my condiction is getting worst, I have a lot of pain, I have so much pain due calcium deposit, is on my hips, knees, and fingers. I managed to keep working all these years, but now I'm too sick to work. Finally I decided to apply for SSA, but I heard so many negative things that it's very difficult process to go through. If anyone of have any suggestion or advise, I would I appreciate.

Alice02

#6 peanut

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Posted 21 February 2008 - 06:02 PM

Hi alice,
It's not as negative as everyone says... its just a lot of paperwork and waiting. I applied then intentionally forgot about cause I was told it would take the full 6 months for a response. Personally, I think it varies by state cause some people are approved as soon as 5 months. I didn't want to drive myself crazy and obsess over the mail box so I tried not to think about it. 3 months after my initial filing I got another stack of paperwork for my hubby and I to fill out. Detailed stuff, rating my daily activities, etc. Yeah you don't always get a ton of money but it's something and really staying home is the best thing for me. I would be in a world of hurt if I were still working.

It's also a good idea to get a hobby, volunteer or something cause it does get a bit boring putzing around the home all the time. My goal every day is: get out. That ranges from running errands to leaving to only check the mail (on bad days). This way I do get some fresh air.

Oh piece of advice when apply for SSI/SSD, think carefully about what you tell them. For example, if you write your hobby is painting and you do lots of it they may read into that - meaning oh you can still use your hands to paint so you're really not that disabled and you might still be able to work. Just a thought.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 Sweet

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Posted 21 February 2008 - 06:13 PM

Hi Alice,

I too am in the process of filling for SSDI. I have been filling out papers for 2 weeks now (as I can't sit very long at one time) and I have asked all my providers for copies of my records and a cover letter from them. I have an appt. in 2 weeks with my primary care physician to fill out more paperwork and then I have a telephone appt after that with S.S. So we'll see how it goes! Good luck to you. Just go for it and take it one thing at a time.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 relicmom1

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Posted 22 February 2008 - 03:09 AM

Welcome Alice! Definately apply for SSDI! It may take a while to get approved, but like others said, I think it varies from state to state, even though it is a federal program. I stopped working in Feb of 2004. I applied in June of 2004. It took until March of 2006 to finally get approved. I was denied at every appeal until I had the " hearing" with an administrative Judge. that was in Ocotober of 2005 and I received my decision in Jan of 2006 and received my first monies in March of 2006. Now, I had to retain a lawyer, but a good lawyer is a must. Also, when you finally get approved, they will decide when you were first actually disabled and they will have to "back" pay you from that date. Of course, being the government, they don't pay you interest on the money they owe you! Also, if you have minor children during the time you are disabled, they are eligible for payments also. They remain eligible until they turn 18 OR are still in high school. My daughter turned 18 in Jan, but she is a senior in high school, so I still recieve payment for her until June when she graduates. I do feel so much better now that I don't work, but I, too have to push myself to do things, because if I don't I do feel worse. Do be careful when you fill out the papers about what you do because they will try to find that you can do something. When I had my hearing, my attorney met with me ahead of time and coached me on how to act, what to say and not to say, etc. There was an "employment specialist" in my hearing also. It's his job to know what jobs are available in your area and what abilities it takes to do them. After my lawyer had her say about my condition, the judge asked me a bunch of questions about what I do and don't do and then he asked the employment specialist that given my condition and limitations, what jobs were there for me and he said "none"!!
Sorry this was so long! Please know that we are here to support you in any way we can, even if it's just to listen when you need a shoulder!
Peace :)
Barbara aka relicmom1

#9 janey

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Posted 22 February 2008 - 05:54 AM

Welcome Alice!
WOW - twenty five years! That's very encouraging. You ask how to cope, but it sure seems that you've been coping for quite a while. Hopefully you can give us some of your tips as well. We do have an Emotional Adjustment section that you might take a look at. You've already received several ideas, but this section might offer some more. It also will help you realize that much of what you feel is natural for any chronic illness and you are not alone.

Hope to learn more about you.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#10 Sweet

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Posted 22 February 2008 - 06:10 AM

Hi Barb,

I hope I can be strong enough to go through the entire process if I have to - and I'm sure I will. For some reason I'm going forward with his kind of negatively. I just don't think they will approve me. I know many are worse off than I am, and they were denied! Anyway, one day at a time! Thanks for your input, it was very valuable.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 debonair susie

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Posted 22 February 2008 - 07:04 AM

Hi Alice,

The dr who oversees your health issues... would he be receptive withhelping withthe paperwork?
The reason I ask is because my rheumatologist took care of any of mine that was medically necessary in receiving
SSI/Medicare. Because she had overseen my case since the beginning, she was very familiar with my illnesses
and the reality of my future in the workforce.

If your dr isn't like my dr, then the other ladies have offered the route(s) they are/have used.
At any rate, I wish you ALL the best in getting this together.

Big Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#12 Alice02

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Posted 22 February 2008 - 07:16 AM

I'm grateful for your support, advises, I appreciate. To answer Janey question on how I cope for these years. Well I have always suffer an stil do They were time when I have 9 or ten stitches on my knee and doing a job that I have to stand all day. I too sometimes I wonder how I cope, I think having a positive attitude and great friends it help. I love music and I have great sense of humor. I made jokes out my pain, medications. My doctor once described two different medications, as always I read a lot about my illness or the medications I'm on. So I checked on site effect for two medications and found out that one of them cause diarrhea and the other cause constipation. I called my girl friend and tol her "now my problem solve I'm on two medications one make it up for the other site effect" and we laugh about They are time when I cry until I get migraine. Especially when I can't do what I love to do.

Alice

#13 Alice02

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Posted 22 February 2008 - 04:35 PM

Hi Peanut, thank you for your advises. You mentioned that the money you get from SSDI is not much. I'm not even sure if I will be able to do anywork, I'm in so much pain a now that I can't even help myself on daily basis. But I do live alone, if SSDI is enough to live, can I still get a part-time job if I can manage to do it future while I'm collecting SSDI?

Thank you so much in advance

Alice

#14 peanut

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Posted 22 February 2008 - 08:05 PM

Alice,
SSI & SSD are different. You get SSI (income) if you don't make a lot of money in addition to SSD (disability). My hubby's income disqualifies us from SSI. With my SSD, I cannot make more than $900/mo or it starts to effect the amount the govt gives me. Well I'm in no condition to work + even if I did find a job my hubby doesn't think its worth the stress. He doesn't even want me to volunteer... only take care of myself and rest. I don't know anything about medicare cause I get health insurance thru my hubby... so that's something else you'll have to learn about.

I didn't get a book. I just filled out the paperwork online, printed it, went in-person to my appt, waited 3 months, filled out more paperwork, and got my result. Some people go as far as getting a lawyer in the early stages. I figured if I got rejected I get a lawyer for my appeal. Oh I oopsied on my first post... I meant to write I've heard of some people getting approved as early as 5 WEEKS.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#15 Alice02

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Posted 23 February 2008 - 04:07 AM

Hi Peanut, thank you so much for taking the time to answer my questions. I appreciate. It really help me clear a lot of confusion and give a hope that I will survive all this. I'm sorry, I made mistake about the book, is Pamela who bought the book not you. As your is wright husband, just take care of health and try to live as normal as you can.

With much love

Alice