(Closed) I finally took the first step…

posted 8 years ago in Wellness
Post # 3
Member
216 posts
Helper bee
  • Wedding: May 2011

Poor thing, I feel ya!  I’ve got a cousin of yours I think.  I was diagnosed with Multiple Sclerosis in March of 2009 at the ripe old age of 26.  With my treatment (a shot 3 times a week) I am doing pretty well.  I do experience some pain (spasticity of muscles) though I have more issues with numbness, tingling, chronic fatigue and vertigo.  My legs are numb from my knees down right now, have been since January, though I can still walk fine, just clumsy.

I am not sure how closely related our autoimmune diseases are but I can tell you what I know concerning SSDI (Social Security Disability Insurance) and pain management.  I belong to an online group called patientslikeme.com in the MS section.  I am lucky that I have not experienced anything more than aggravating pain and muscle cramps but I do know many muscle relaxers and something called Baclofen has been used to treat MS related pain and spasticity.

As far as disability, I have researched it A LOT.  Basically it takes, on average, 2 years for a person to get approved.  It’s just our lovely government putting us through the loops and weeding out the BS claims.  Get a lawyer and keep trying until it comes through.  There is a good post on my PLM forum from someone with a lawyer brother that basically explained the steps and how to become successful with it.  I will try to copy or link it here at some point today.

Hope this may help you in some way and I will keep you in my thought and prayers.

Post # 5
Member
2083 posts
Buzzing bee
  • Wedding: May 2010

I don’t have experience with an autoimmune disease, but I definitely do know what it is like to have a disease and always be worried that people are thinking the pain is for the most part in my head. I have endometriosis and right now parts of my intestines are being pulled and fused together. I am on pain medication all the time and just started getting once a month injections of hormones to try to control it.

For a long, long time I went to doctors who always made me feel like an idiot and made it seem like I was exaggerating the pain. I missed school and work all of the time. I had to quit school and my job for about 6 months… definitely sucked.

I don’t really know if there is a good way to say I “cope” with it but nobody is going to understand besides me and maybe my husband what I deal with on a daily basis (extreme pain, losing consciousness, fatigue, blah blah blah). For the most part, I just don’t tell anyone about it. I occassionally will tell my mom if I end up in the hospital but I don’t want her to worry and I know there is really nothing more they can do for me anyway. I don’t tell my friends hardly anything… I guess I cope with it best by just keeping it between me and my husband and quietly trying to go on with my daily things. It sucks, but I guess I haven’t figured out a better way.

Post # 7
Member
216 posts
Helper bee
  • Wedding: May 2011

Okay let’s hopes this works!  Here is a link to one of the SSDI forums.  It also has some SSI info on it.  Patientslikeme.com is a very good website in terms of research and treatment informatio though I tend to not post in the forum unless I have a research related comments b/c there’s a lot of drama and snarkiness.  But it also helps me keep track of my daily symptoms and any severe relapses.  I can print off my sheet and take it to my neuro that way I’m not trying to remeber EVERY little thing.

http://www.patientslikeme.com/forum/show/76193?post_id=1110877#1110877

Have you tried going to another doctor or seeing a specialist?  I’ll put my feelers out on PLM on see if they have any info on your disease that could be helpful.

EDIT to add:  I see you’re in Ohio, don’t know what part but the Cleveland Clinic has one of the TOP autoimmune disease centers.  Might be worth checking out if you are near.  I’m near Cincinnati so it’s a far drive for my mild case right now.  If things get bad I’m hightailing it up there.

Post # 8
Member
2083 posts
Buzzing bee
  • Wedding: May 2010

PS: I really hope you find a way of coping with this that works for you soon. I know for awhile I withdrew a lot and just became depressed. It is hard not to be depressed when you’re stuck at home, falling behind in work and school, and in pain all of the time but are too nervous to call your doctor because they make you sound like a whiner. I know goverment programs can be screwy, but don’t get discouraged and keep at it because if you do end up getting it it will make a world of difference I’m sure.

Post # 10
Member
4 posts
Wannabee

As far as disability, I have researched it A LOT.  Basically it takes, on average, 2 years for a person to get approved.  It’s just our lovely government putting us through the loops and weeding out the BS claims.  Get a lawyer and keep trying until it comes through.  There is a good post on my PLM forum from someone with a lawyer brother that basically explained the steps and how to become successful with it.  I will try to copy or link it here at some point today.

This is actually not true at all.  I work as an analyst determining these claims.  Lawyers only slow you down and more than once I’ve seen a lawyer get someone denied because he/she wouldn’t cooperate.  People get approved when they meet the disability criteria.  There is no timeframe involved. 

@ Potatoes:  When they tell you you can do light work, that means you can reasonably be expected to stand/walk and sit for 6 hours out of an 8 hour day.  It also limits the amount of weight you can lift. 

The younger you are, the less likely it is that you will be allowed because, theoretically, you have the  capacity to learn jobs you could perform.  But I have seen a few young people with mixed connective tissue disease get allowed, so it’s not impossible.

If you have gotten worse, apply again.  And be as honest as possible when you fill out the  paperwork.  If you don’t have the energy to cook a meal, say that.  If you used to love to go hiking and you can’t do that anymore, say that.  Don’t tryto make yourself sound worse or better than you are.  

If you need advice with the process, pm me and let me know.

 

Post # 11
Member
216 posts
Helper bee
  • Wedding: May 2011

I apologize, that is all I have found out from research on my MS.  I have notapplied nor do I plan to until I actually have a real need so that is good to know.  A lot of people on my forum are “whiners” sounds bad I know but that seems to be their time frame.  I may contacft you as well if the need should arise.  Thanks for the honest info!!

Post # 12
Member
281 posts
Helper bee
  • Wedding: September 2010

I feel for you.  I have RA, and while it can’t be cured, it can be treated.  I’m so glad I got this now instead of 15 years ago when the treatments I take (the ones that finally worked) weren’t available.  Please find better doctors.  My PCP wouldn’t give up until they found out what was wrong with me, and all they had to go on at the time was inflammation on a blood test and achy knees (what I would give to go back to that).  My rheumatologist was genuinely excited yesterday when I told him I was feeling much better on the new drug and when he saw the swelling had gone down in my hands and feet.  Please find doctors who care, even when you wish they would leave you alone and let you rest. 🙂

Post # 13
Member
4 posts
Wannabee

@courtbu17:  Sorry if I seemed snippy before.  I admit that it’s not an easy process to go through.  There are lots of people (my mother included) who have the wrong perception of the program and I like to clear things up when I can.

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