[Obayan]

For Rare Disease Day - my rare disease story

by Obayan on Fri Feb 28, 2014 6:48 pm

Today is Rare Disease Day. This is my rare disease story.

On June 24th, 2013 I was diagnosed with multiple myeloma. It's a cancer that lives in your bone marrow. It eats away at your bones from the inside out. It grows in the marrow where blood cells are made. The more the cancer grows, the less room there is to make good cells, like platelets that help to form clots and lymphocytes which are a type of white blood cell that fights infections and red blood cells that carries oxygen and nutrients to the body.

The bones become like swiss cheese with lesions. They hurt. They break easily. It makes life difficult.

The cancer itself is considered terminal because it can't be cured. But it can be treated. And with treatment you can live a few years but it's a painful and difficult few years. There is hope. There are always trial studies of new drugs and new treatments going on.

I am in one such study right now. I travel over 200 miles to see a specialist (this is the closest doctor to me that even knows what multiple myeloma is) and am being very well cared for. I have the emotional support of friends and family. Soon, I may even have a bit of financial support from disability but not yet.

The treatment right now is averaging about $20,000 a month. I get stacks and stacks of bills from doctors, hospitals, insurance company, laboratories, etc every month in the mail that I have to deal with on top of the disease and the depression that comes with being hit hard by my own mortality.

I have a wonderful daughter who is standing right here by my side with every step I take. Even the steps that go back instead of forwards.

It makes it hard because I have other ailments that aren't so rare like heart disease and intracranial atherosclerosis and costochondritis and hypothyroidism and copd and ptsd.

If there was anything I would want to say to someone just starting out, it would be this...

I am not my disease.

I am a mother.

I am a widow.

I am a veteran.

I am an American.

I am a woman.

I am loved.

But I am not a disease.

I am not broken. I am strong. And I will fight.

[darnold]

Re: For Rare Disease Day - my rare disease story

by darnold on Fri Feb 28, 2014 6:58 pm

Amen.

[kore]

Re: For Rare Disease Day - my rare disease story

by kore on Sat Mar 01, 2014 10:39 pm

Amen! Amen! Amen! Well said!!!

[gmarv54]

Re: For Rare Disease Day - my rare disease story

by gmarv54 on Sun Mar 02, 2014 7:22 pm

Very well said.

[Guitarnut]

Re: For Rare Disease Day - my rare disease story

by Guitarnut on Mon Mar 03, 2014 3:14 am

Amen indeed!!