Disability

[annamc]

This expressed the saddening fact that the disabled sometimes don't get what is right while others are getting wrongfully. Either way the stress and worry is put on the people that do not need it!

[Sarah]

ouch

Hi,

I'm very sorry you are going through this. It always seems that the cheaters keep getting money and people with real problems get stuck.

Here is a link that might help you with insurance: http://www.cobrahealth.com/statehighriskpools.html

keep us posted and I'm sorry I can't be more help.

take care,

Sarah

[Rich Miller]

Annamc, I have been trying to get ssi disability since 1995 i keep losing and going back to some kind of work and work until i end up in hospital and lose job because of absences. i am due for an administrative hearing some time this year and i'll let you know how I do
Rich

[kathyn2]

I am a moderator on a forum that helps people get their disability benefits. I am on ssdi myself but not for hocm. It is for spinal problems and fibromyalgia. The basic thing you need to prove in order to win benefits is that you can do LESS than sedentary work. That is difficult to prove. With the heart problem, you would just about have to be bed ridden because if you could sit, you could do a sedentary job. I am not saying it is impossible tho. It would depend on how severe your condition is and if you could prove you can't do even sedentary work of just sitting watching people go in and out of a dressing room or something.

If you can't do that then why not? This is what you have to prove to SSA. They also don't care if you have training or not for whatever this sedentary job is. Altho the older you get (over 50) they do start taking retraining into consideration.

What were you on SSI on before? Before they can take it away from you THEY have to prove that you have improved. Did your doctors all write that you had improved in their records? Do you know what proof/records you gave them the first time that alllowed you to win? You need to prove you are just as disabled now as you were the first time you applied and won. If some doctor has written that you improved, then you need to get that straightened out and submit it to the judge. If I can help any further, please let me know. Kathy

[Lisa Salberg]

It is highly difficult and in a way that is a good thing. It is like Sarah said, the people who are in need sometimes do not get what they need and those who play the system can obtain benefits.
You must not use your diagnosis, it is your functional ability that they are looking at. If your able to work at all then they will likely dismiss your case. They are looking for those who can not function in any job, not just the one you want.
You need to sit down with a doctor and really discuss your limitations and what is best for your health. If it is found that the stress is too much for you to do any type of work, have him/her write a very strong letter..this is your key, without it you are not likely going to get SSI.
Good luck in your efforts.
Lisa

[Sarah]

hm

Go back and see what is up with that doctor. Was he assigned to you? Get fresh letters from your cardiologist and primary. Have them contact that other doctor if possible. Sometimes doctors will open up more with other doctors.

If you can sit at a computer and do data entry or write or do PowerPoint graphics or design a web page, then you can work.

How about taking on-line classes? THere are lots these days.

take care,

s

[kathyn2]

Yes, if you can do typing or computer work it is considered sedentary. There are lots of other sedentary jobs. Filing, answering phones, receptionist jobs and so many others. It doesn't matter if you are trained for them or not. SSA expects you to go to school or get training so that you can get one of these sedentary jobs. Especially since you are so young.

I am not very familiar with childhood SSI and the rules for getting that. It is always a bad sign when SSA sends you to one of their doctors. That means that your doctors did not give enough info to grant your benefits. So they send you to one of their own doctors to get the info they needs. Usually their doctors stink! It is much better to get SSA to get the info from your own doctors. You need an attorney to help you. No doubt about it. You need your own doctors to write a letter or report for SSA explaining all your symptoms and why there is no work you can do in the national economy. SSA doesn't care what the title is of your illness. They need to know how and why your symptoms prevent you from working. How many pounds can you carry (it had better be under 10) how long can you sit (It had better be under 30 minutes) how long can you stand (no longer than 15 minutes) can you bend or stoop? Can you lift your hands over your head? Can you walk? How far? These are the questions that SSA wants answered.

BTW, I got some of my disabilities answered by Dr. Shah. He told me no heavy lifting, no standing still, no bending. Maybe your doctor can add these sorts of things to your file. I also told him it exhausts me just to get dressed some days. All these sorts of things need to be in your record. Always answer SSA questions like it is the worst day of your symptoms, not the best day or an ok day. Kathy

[Sarah]

school

Dear Anna,

http://www.phoenix.edu/ has the biggest and oldest on-line diploma program.

S

[Lisa Salberg]

OK this is a little different then many of the DI posts on the board. Most of the other posts are older people who have declined in health while working and can not continue.
Your situation is different. As a child SSI is given in many cases to provide income to assist with your medical care and to provide health ins. It is easier to get SSI as an "ill" child. As an adult we are looking at different issues. CAN YOU work. That is the question. What type of work that is a seperate issue. Can you stand? Can you walk? can you do basic functions such as read, grab, move, and such... These are the issues that will be evaluated. If you are able to work part time hours that is good enough for SSI to turn down a claim.
I will move off of this point for a moment. You are VERY young and HCM is a disease that is compatable with normal life span. I would highly recommend you see a specialist in HCM for an evaluation as I really think you can have a better quality of life than you are currently explaining.
I recall a young lady who I met about 2-3 yrs ago who was much in the same situation...NOW..she is feeling better, has a nice job and just got married and is very happy. When we first spoke she was FAR from happy she was not LIVING she was just getting by each day.
Give it some thought and give me a call if you want to talk.
Best wishes,
Lisa

[Sarah]

coumadin

Dear Anna,

You didn't mention being out of rhythm before. Are you in atrial fibrillation? If your heart is in a normal rhythm, then you would not normally need warfarin. However, if you are in afib, then it makes a lot of sense that you are really tired.

However, there are a number of very good anti-arrhythmia medications that control afib. Have you tried any of these? Norpace, Betapace, Cordarone?

Just trying to get a handle on your situation so I can help as much as possible.

There are certainly some people on DI with HCM, and I suspect they will be posting soon. Not everyone reads the board every day like Reenie, Lisa, Linda and myself.

take care,

S

[Lisa Salberg]

Anna -
I am sorry I misunderstood your statement about driving I thought you were unable to stay awake and took that for not having any energy.
Sorry for that!
Lisa

[Lisa Salberg]

Anna, why are you on blood thinners? Are you in A-fib?
Lisa

[Lisa Salberg]

Blood thinners are only used in those with A-fib, and those with artificial valves ... most HCM patients do not take it and it is not needed. Have you had A-fib?
You may be able to get off of it. It s very common to have some palpitations with HCM but they are not going to cause blood clots in most cases...A-Fib is the reason those with HCM take blood thinners in nearly 90% of the cases I have seen.
I really think an evaluation by an HCM center would do you a world of good.

Lisa

[Sarah]

Hcm

Dear Anna,

Please read the rest of the web site (not the board, but the site) for more info on HCM itself.

What you describe for your warfarin is standard practice.

HCM varies from person to person in how thick your walls are and what kind and frequency of arrhtyhmias you have. Your symptoms, your abilities, etc.

While it does vary alot, there are still stanards for treatment and medications that work for most things as well as treatment protocols that the HCM centers follow.

What Lisa said about afib is true for everyone.

S

[Lisa Salberg]

It is not standard to give blood thinners to everyone with HCM..I just wanted to make sure that was clear. It is odd to see younger people on it... Yes HCM is a little different case by case the basics are the same, the book does cover this rather well.
Lisa