Re: New Lupie in St. Louis MO

August 28, 2004

Hey, , and welcome. I have steadily refused to use Prednisone because of my other organ

involvlement: i.e. Heart, lungs, etc. If my kidneys kick in again, though, I may be forced to bite the

bullet. Others, here, are on Pred, or have lots of experience with it.

As for the OBGYN troubles being "all in your head", been there, done that is the answer from most

Lupies. Most of us have had early menopauses, or early hysterectomies. I had four surgeries, the

last of which was a complete hysterectomy at the age of 35. OB problems are common with Lupus,

and to be expected. That doc is an ignorant fool, pardon my plain speaking. I had menopausal

symptoms from the age of 26!

You are right in saying it is time to change doctors. Also, your wonderful internist must know a

rheumy locally who can help you. Ask him to refer you, or call the local office of the AMA and get

some information.

I live in no. California, about 50 miles from San Francisco, so if I need extra special anything, I am

sent to the University of Calif. San Francisco for it. If there is a teaching hospital near you, that is

the place to go if you can get a referral and insurance coverage for it. They are usually in the

forefront of new research, treatments, and testing.

Sorry this is getting long, but you should know a little something about me...I am the adoptive, single

mom of four special needs kids. Two are grown and gone, and two still at home, ages 12 and 16.

Both boys, and a real challenge. I am retired on disability, since I have not only SLE, but RA, Anemia,

congestive heart failure, some kidney involvement, Sjogren's Syndrome, non-insulin dependent Diabetes, chronic Lyme Disease (long story), Ulcers (Lupus related), and chronic and acute Myofibro-

sitis. Ain't I a bundle, though? LOL Most of us are a package of ever changing, ever increasing

conditions that seem unrelated, but also seem to be fairly common to Lupus patients. Anyhow,

I was forced to retire at age 46, and I am now 55. Right now, I am getting around pretty good, but

spent a week in medical incarceration earlier in the summer for CHF. They took 27 lbs. of water off

my body. It was so great to know I could breathe, again.

Anyhow, TMI, as my kids would say. Just can't seem to stop once I get started. Once again, welcome to the group. It really helps to write and share, whatever is going on and however you are

feeling. Takes away that awful feeling of isolation that chronic illness can bring. Hugs, MM aka:

Mike, one of the co-owners/moderators

August 28, 2004