PBC

[uandisharing]

Hi, I just was wondering if anyone in the US has tried to be put on Social Security Disability that was diagnosed with PBC? I was just laid off. And, I can't wrap my head around not having 3 weeks vacation a year. I know, It was hard making it to those weeks off. The fatigue is terrible. Please advise. Thanks in advance.

[donna01]

I would think it depends on how advanced you are. Best to ask your Doctor

[Suekloo]

I applied and was approved within six months. I had help from a group that specializes in SSDI. I do believe each case is different. For me I had worked 35 years at same job and along with PBC have several other AI conditions. I had long term disability and they took care of getting me in touch with the lawyers and they paid their fees. Which is usually 25%of your initial payment received. I do know they don't pay on you first six months off. You will need a supportive doctor and plenty of documentation. The lawyers group can usually tell you if you have a good case.

[uandisharing in reply to Suekloo]

Thank you for your insight and sharing your experiences.

[NotorDJP]

I went out to the SS website and there is a list there of what stage you need to be at. It seemed to me you need to nearly be ready for transplant or you won't get it. What do you do if you just can't do it anymore, just can't make it out of bed etc? What stage are you at? Are you further along with the disease?

[uandisharing in reply to NotorDJP]

Awe! thanks for the research. No, I'm not that far along (Thank God). I just get tired. I don't know what were supposed to do. I guess I'll try to find another job and see what happens. I've never been fired from a job. Could be a first. lol I hope it doesn't come down to that! Take care, And, thanks again.

[ZiggyBean]

I am waiting for my final hearing with SS. I have a lawyer and they said everyone gets denied initially.

[uandisharing]

Good luck!

[CindiA]

Hi, I've been on the UNOS transplant list since 2007 through the Mayo Clinic in Phoenix. I see part of my transplant team every three - six months.

I was approved right away three years ago. I went to a lady who specializes in SSD applications (she wasn't a licensed attorney). Her fee was 25% of the first payment, but since it went through so quickly, she never charged me. I tried to pay her but she wouldn't take it.

Yes, study it online. Learn the correct terminology. The person you go to for help will tell you what you need (a lot of paperwork). If your quality of life (BIG WORDS in the pbc world) is preventing you from doing your job, go for it. Your doctor should be able to write the letter you need. If not, you're going to the wrong doctor. If you're denied, appeal until your approved and you'll get the $ from the date of your first application. When approved, you will qualify for Medicare after two years on disability no matter what your age is.

Good luck,

Cindi

[kalyhan]

I agree with others here. While I have yet to apply, I know people who went on disability for what I perceive as "less severe" health issues. Those I knew were all denied on the first try, then finally approved after a year in NC. My question would be, when do you call it quits, how bad does it get? I was diagnosed 1 year ago with PBC, barrettes esophagus, severe gurd, acute pancreatitis (2-3 years ago, high probability this too is auto immune), degenerative discs and while I won't see my PBC doc for another month, my reg doctor thinks RA kicked in big time about 4 months ago. Whew. My problem is I'm a fighter, I'll keep going until I'll fall over. I don't want to be that way with PBC and acute pancreatitis. So when do I stop?

I never whine about my health but I've encountered two customers recently who had one issue and went for disability. Both appeared in really good health...they were just diagnosed...but they constantly whined and whined like it was the end of the world. I kindly let lose on them, revealing how someone like me, working 10 hours a day, maintaining a spunky attitude had many issues. Yes I was wrong, but I couldn't stand the whining. I think I suggested they seek out a support group for people with similar issues. My whole point wasn't to rant at them (and I didn't) but really to show them that 1. You can have health issues and often times, carry on and 2. Stop whining because there are others out there worse off than them (even me!!).

Knowing that others with PBC and RA can deteriorate and knowing that disability claims take 6-12 months often times, any suggestions on when I should start thinking about filing paperwork?

[kalyhan in reply to kalyhan]

I should have added, I don't know yet what stage of PBC I am as I didn't know to ask after my biopsy and after a financial set back, had to wait 10 months before I could see my PBC doc...which is in September.

[uandisharing in reply to kalyhan]

Hi Kalyhan,

I hope this finds you well.

It looks to me, that everyone's symptoms are different. I did go back to work. I find myself eating dinner then going right to bed. Now, that I had that time off I realized what a somewhat normal life was. I'm thinking this could be the case with you. You're a doer and a goer. I knew I was tired while I was working prior. But, I didn't know how badly it was affecting my life. I go to my Doctor in October. I'm going to ask her to put me on something for the fatigue. Or, I'm asking to be put on disability. I'm in the beginning of stage 3. All these people on here say once their AMA count went close to normal they didn't experience the fatigue any longer. But, I'm still tired. I'm sick and tired of being sick and tired. My family doesn't even act like there's any wrong with me. So, I guess I don't complain enough. I actually, had people in family make fun of me for going to bed so early. Nice! I guess I don't whine enough.

I guess it's up to us, if we want to seek out disability. I know you can't earn any money while the waiting period for the approval goes through. I'm not sure how many people have those funds saved.

I hope this helped

[kalyhan in reply to uandisharing]

Hello Uandsharing!

I too am very tired. It doesn't help that I can't seem to get more than 3-4 hours sleep a night. I guess I just operate on auto pilot. I hope running on empty all of the time doesn't worsen my health but I cannot fathom going through a wait period for disability. I'm a single mom and even the disability payment would only be a fraction of earnings. Sometimes I'd like to throttle people I meet that have a smaller health issue that are already on disability. It's not jealousy. It's just why tell strangers how sick you are when A) few people really care and B) others could be far sicker and it makes them look needy. I don't generally speak of all my different auto immune stuff because I don't want people to think I'm a hypochondriac(?). If others whine, I can always say I know how they feel and say that I have multiple auto immune disorders (possibly life threatening?) but I still work (lol I'm so insensitive).

I'd like to say that whining to your family would help your case but honesty I don't think it would. If I whine to anyone, I would whine to my dr. Is it possible that he/she could speak with your family? My family does know that I'm tired all the time, but I blame it on my gross lack of sleep. I hope the dr can give you something for the fatigue and they can speak with your family. Keep us posted!

[CindiA in reply to kalyhan]

File ASAP. As I said above, even if you're denied (and you shouldn't be with everything you're going through!) keep appealing and when approved, you'll be paid from the date of your first application.

Good luck,

Cindi

New Mexico, USA

[kalyhan in reply to CindiA]

Thank you Cindi. I appreciate the info.