My husband's illnesses

[Guest guest]

My husband and I have been doing our own ongoing research and investigation

about his illnesses so as to understand " what's going on in his body " for our

satisfaction and for SSDI and for his military benefits. He has a " team " of

specialists at the VA Hospital that take care of him. Some of the doctors are

great and some are mediocre. Our file goes back to in 1991 during the First Gulf

War when he first complained about his headaches, stomach aches and neasea in

the military. He was diagnosed with all the other illnesses first and Sarc in

January. He had a lung biopsy, 4 MRI's, chest XRays, skin biopsy, bone marrow

biopsy, eye tests and blood tests. He has almost all of the symptoms you all

have. He went through chemotherapy but he's refractory. Retuxin didn't work for

him. He is also drug resistant to steroids. He takes pred and just starting on

MTX. These drugs have very serious side effects, but he deals with it. He has a

great attitude about life. He even started a new hobby last summer--agate

hunting. When he is down, he is miserable. He is usually in bed for days. Then

he gets better again. His symptoms continue off and on and will continue for the

rest of his life. We have great friends supporting and loving us. My family

lives in Hawaii and my husband's family doesn't come around us. We're doing well

having our friends here. I volunteer at my kids' school and at the foodshelf. I

also joined a Stamping Up club. I'm looking forward to summer. I love gardening

and landscaping.

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> Welcome, Lyn. I'm sorry that you had to find us, but glad that you did. Does

that make sense?!? Your husband has really been slammed, hasn't he? Do y'all

have a good support system? Do you feel that his medical team knows what they

are doing? There are still many doctors who are stuck in old-time thinking

about sarc & haven't kept up with the latest research on treatment options.

What kind of symtoms is having? What meds is he taking? This is a huge

burden for you, of course. Do you have support--family, friends, church family,

etc.--who can help you with your younger kids, the house & everything else? I'm

sure you are aware that is at risk for depression; in fact, I'd be

surprised if he wasn't depressed. You are also at risk for depression; that's

why you need a solid base of support for yourself.

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>

> Ramblin' Rose

> Moderator

>

> " I child-proofed my home and they STILL get in! " (Bumper sticker)

>

>

>

>

> > To: Neurosarcoidosis

> > From: lynrebro@...

> > Date: Sun, 3 Apr 2011 20:57:15 +0000

> > Subject: New Member

> >

> > Hello everyone!

> > My name is Lyn Rebro. I am new to the Neurosarcoidosis Yahoo Group. My

husband, is a disabled veteran of Desert Shield/Desert Storm who has

developed several life threatening diseases including Sarcoidosis, Gulf War

Illness (waiting for diagnosis), ITP (blood disease), Irritable Bowel Syndrome

and Chronic Fatigue Syndrome. He spends a lot of time at the VA Medical Center

in Minneapolis, MN going through various treatments. We have four children ages

18, 9, 7 and 6. I joined this website to site to be a source of strength and to

allow you to walk with us on our journey.

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