Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Soc Sec Disability- a VERY LONG read!

OK, I've been asked a couple of times re: disability so here goes... Get ready it's L-O-N-G! If you aren't interested, look away!

HH group on daily strength..

Copy and paste this into a word document, delete my personal notes, then re-save it. Print it for your files. Social security disability (SSDI) can appear to be a long & drawn out process. Most people CAN do it themselves without having to hire an attorney to do the paperwork (plus, they take a percentage of any money you are awarded... this can be a big chunk if you are awarded backpay). They can only pay backpay for the 12 months prior to the application date. My decision came months after I applied (June-October 2010). It was granted dating back 2 yrs prior to me applying (back to June 2008) and that was 4 months before I actually stopped working (which was October 2008!!! The hemochromatosis was only diagnosed one month before I applied (June 2010)!!
Soooo, I got retropay from June 2009-June2010, all in one check!

IF you need to file an appeal, read the info & decide IF you need someone (an attorney) to help you.

You will want to start a file for Social security disability. Put any of your handwritten notes, a copy of any printouts which you submitted to them online and the names plus dates of anyone you talk to. If you "save" it to your computer, you might also want to copy & paste the info, after you complete it, print it out & then "file" it in your folder.

Be sure to make notes for any of YOUR symptoms which you see on any the lists below, plus any other symptoms because you will need to be VERY THOROUGH & SPECIFIC when applying! Cover all your bases, think back to all Dr's you have seen (with their current address-
I included the fax #, too) and why you saw each of them (maybe a GI or hemotologist for your hemochromatosis... maybe a hepatologist/GI/hemotologist for Hepatitis, maybe a psychiatrist etc..) You wont need to quote anything specific that you found on the social sec website. Just describe your symptoms. Get copies of medical records from doctors, hospitals, diagnostic centers, etc . Keep a copy for your files! Provide the info when they ask because it will help to speed things up. They wont pay for any copies of x-rays, MRIs, doctors charges, etc.. In Kentucky, we are allowed one copy p/year, without charge.

You will want to read the info on this link regarding livers:

http://www.socialsecurity.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm
scroll down to 5.0 D How do we evaluate for chronic liver disease


another for diabetes:
http://www.ssa.gov/disability/professionals/bluebook/9.00-Endocrine-Adult.htm

another for cardiovascular problems:
http://www.ssa.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm

another for peripheral neuropathies, seizures, & epilepsy... neurological problems..
http://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm

another for Musculoskeletal symptoms:
http://www.ssa.gov/disability/professionals/bluebook/1.00-Musculoskeletal-Adult.htm

another for mental considerations:
http://www.ssa.gov/disability/professionals/bluebook/12.00-MentalDisorders-Adult.htm

another for immune systems (which includes FATIGUE):
http://www.socialsecurity.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm

You can search the social security bluebook by typing a word in the search box which is on the left side of the page of the bluebook references listed above.


No, I didnt feel guilty about applying for disability. Im 7 yrs from the normal retirement age of 62 (MAN IM GETTING OLD!!!) I have been paying into my social security since I was 15 yrs old. Not to mention, Id REALLY be broke if I didnt have anything coming in since I had no paycheck. You cant get SSI if you have access to any money.. IRAs, savings, investments, etc

I cant imagine that Ive left anything out.. but if I did, just ask. I may have saved that info, too!

You can apply for disability online at http://www.ssa.gov/applyfordisability/

Good Luck

Replies

YREKADC
YREKADC

ZZZZ YOU HAVE NO REASON TO BE ASHAMED OF ASKING FOR WHAT YOU HAVE ALREADY EARNED. I APPLIED WHEN I FIRST BECAME "HANDICAPPED", GOT DENIED OF COURSE. BUT I GOT LUCKY AND GOT A JOB I COULD HANDLE/PART TIME. SO I DIDN'T NEED IT. FOR NOW. MY NEIGHBOR WAS A FALL DOWN DRUNK/IV DRUG USER , NEVER PAID INTO IT, ASKED ME TO WRITE A LETTER TOO SSI SAYING HOW SHE COULDN'T WORK, LIFE WAS JUST TOO DEPRESSING. I WOULDN'T WRITE THE LETTER. SHE WAS PERFECTLY ABLE TO WORK. JUST DIDN'T WANT TO!
NO ZZ THAT IS WHAT IS THERE FOR... EVEN THE DISABLED LIKE TO EAT ONCE AND A WHILE..
MAN YOU COME UP WITH SUCH GREAT INFO. THANKS.
AND IF YOU ARE GETTING OLD, HOW OLD WOULD THAT MAKE ME? APES AGE DIFFERENTLY THAN HUMAN FEMALES!!! MUCH SLOWER I HOPE. I AM TRYING TO WAIT FOR MY WIFE TO CATCH UP TO ME..HA HA SHE REFUSES!!??
HOWEVER I AM NOT TOTALLY CONVINCED YOU ARE HUMAN. YOU SEEM TO HAVE A VAST AMOUNT OF KNOWLEDGE AT YOUR FINGER TIPS!!?? VERY SUSPICIOUS... AND YOU DO PUT COFFEE IN SOUP? HHMMMMM? THANKS AGAIN D. JOY JOY
deleted_user
deleted_user

YR, unfortunately, when I worked on a psych unit 25 yrs ago, we saw patients all the time trying to get disability. It is a large University Hospital with many, many patient visits and a trauma center. Most/many were totally capable to work and function in general. BUT, they knew "the system". They knew or were told, that if they pretended to be depressed for 2 years they could get SSDI. People in the unit would tell them they should say they were going to hurt themselves (or actually do a little cutting on their arms) and that would help their case!
CRAZY way to live when you could be productive and make more money by working, and usually with nice benefits, too!
deleted_user
deleted_user

Hi yall,
Been working on my records. You may have heard me say earlier, this is a job. I may as well go back to work. I'm going to try to get some copies of my records from my Oncologist who does my phlebs.Hope that they are cheaper than my gp, 50 cent a page. Maybe my gp will work with me. I'll see her again wed. I'm anxious to see how my ferritin level is doing. I'm driving, but sometimes I feel unsafe with this brain fog. Been having to lie down, being so dizzy sometimes. Thanks for all your help. God Bless. Mike
deleted_user
deleted_user

Mike, be sure to make that statement to your oncologist. Since it does concern you, it could also help with the soc sec decision.

Ask your hemo if HE can request all of your records from the other doc. Tell him you want to start a personal file of your records, partiallly due to the brain fog and forgetfulness (if thats a problem for you, it is for me). Good luck!
zzzzzzzzzzzz
deleted_user
deleted_user

You want to hear the whacked part of my case ..........I only applied for temporary disability and was denied ,(phelbs every 10 days for a year ,severe brain fog and fatigue) .Now that I have been deironed more severe issues have occurred , going for the full monty now !!! Worked all my life......and just needed a lil extra help I payed into ......
deleted_user
deleted_user

ZZZ thanks for all your info. ,ss disability seems to turn into silence here when I use to ask questions back in 2009 .When your brain is in severe brain fog mode these resourses are very nice to have ,keep ummm commin !!!! Queenie
deleted_user
deleted_user

U R most welcome Queenie.... It is still so fresh in my mind (plus all the "saved" websites) And... knowing what was involved, I just wanted everybody else to know so they could also apply, IF they needed to.

You should consider re-applying!! Another GOOD thing about getting approved, is that after 2 yrs, you get Medicare (for anyone needing insurance). I have good insurance thru my husbands employer BUT b/c I do, I didn't have to take (or pay) for Part B, which is the Dr's coverage part of it. Mine starts in June 1st. Not sure why it starts June 1, 2011 because they determined, by my medical records, that my disability actually started June 2008 (even though I applied June 2010).Mayyyyyyyyyybeeeee, since they can ONLY go back 1 yr from the date u apply, which would make it June2009, jump forward 2yr.......June2011. Yesh, maybe that's it.
Good Luck... try again.. Yes, we paid into it & many of us would be very close to getting soc sec anyway!

:)
D
deleted_user
deleted_user

Thank you again for this post. Adding my reply to see how many others have gotten SSDI in our group.
deleted_user
deleted_user

I also applied for SSD because I could no longer work.I was lucky It was 5 months that I was approved.I wish I could continue to work but employers do not want someone that does not know from day to day how they are going to feel HH is awful.
deleted_user
deleted_user

Glad yours came thru quickly, too, hickery!