I wasnt given a choice to retire. I didnt have health insurance and they cut me off the work schedule once I couldnt hide being sick anymore--so I was forcefully retired. It does have as good ending though.

IF your work is affected enough by you being ill, thats the time to file for disability. You do NOT have to be off work to file for it--You DO have to show how the illness affects your ability to work and your health.

If I have one word for you it is to DOCUMENT everything about your illness. It holds up very well when the time comes that you need to file.

I stopped working Sept 1st 2010, I filed the next month for Disability. It was granted Dec 2010 ! LESS than 4 months,and NO I didnt use or need a lawyer. There is a "blue list" for SSI.. and Mastoctosis is on that list--those are usually illnesses that are approved automatically as long as you can prove you have it.

They are sending the back amount from the day I was approved and told me it will be here in less than 2 weeks. They are starting my monthly checks March 1st and told me the amount I will get. I ill stay on Medicaid for all health coverage--no -copay, it will cover 100% of everything because I have no other resources.

You do NOT need a lawyer. I have the name of a good one that specializes in Masto cases, never lost a case..and I'll give it to you if for some reason you arent approved the first time--but you wont need it IF you do your paperwork the right way.

Contact SS office and just ask them to send you a list of benefits you qualify for at this moment--if you retired for some reason--this is based on your work--how much you made, ho long you worked and only the last 10 years count. You get "credits" for each quarter of work that you worked and to get SSD you need to have earned at least 22 credits within the 10 last years. If you didnt you would still qualify for SSI.

Again, THE MOST IMPORTANT word I can say to you is "DOCUMENT" everything--it looks great in front of a judge. Make SURE you say the word Mastocytosis or MCAD every time you go to an ER or medical visit--when SS looks into your past medical records to determine when your disability began, THIS may very well determine it--it did for me!!

I'll post some more tips soon,
Ramona

Congrats!  Am glad it went so smoothly for you.  

Deb Mc

What is the relationship between keloid scar formation and masto conditions?  i've had reconstructive surgery for several massive keloids, and I always thought it should be related -- but i haven't able to find anything except advertisements for plastic surgeons.

Hi Jaxx!  The keloid tissue comes from the mast cells again--they are part of the healing process, so you get hurt, they rush to heal it.. but because they behave abnormally, they OVER heal it and you get that thicj rissue--often times it ill even feel dry on top like  small rock,, drives me loony LOL.. and often you ill get hyper pigmentation/melatonin on that same spot--in other words, it looks light brown over that site, almost dirty. Its just the sign of over active mast cells having a party and wont stop LOL...

Hey Nik!!
Im VERY lucky, I was just approved for SSI and they gave me Medicaid along with it and food stamps too.. so soon I will be doing much better  Before that was decided, I learned VERY quickly (with zero income) that most counties have medically needy programs and it isnt that hard to apply for those, do it! There are also programs from drug companies for people who cant afford their meds.. some pharmaceuticals actually have a heart I was getting my insulin directly from the company that makes it. Also almost all hospitals have charity care type programs--ask them about it--apply for them!!

Hon, I was embarrassed too at first.. but I got too sick and tired of living without the meds I needed to live, to care about being embarrassed. Most of these people were so wonderful, compassionate and helped me through all paperwork very quickly and easily.

Thankfully most masto meds are OTC now--Over the counter.. so I bought generic meds at the dollar general store and my family paid for them... I am only now getting the actual meds I needed all along... Be patient Hon... have some faith, it WILL work out.. and ask us anything you need to know. Between us, we'll figure it out for you!
Hug and more
Ramona