Wendi's Story

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Hello. My name is Wendi and I live in Muscotah, KS. I have SLE, among other illnesses such as Sjogren's, Raynaud's, Scleroderma, and heart problems.

Let me start by saying that we REALLY need to get this disease out into the public eye!!! I started having symptoms of SLE around 1995. I developed a rash on my face, there were days I couldn't get out of bed I hurt SOOO bad!!! My periods were also out of whack at this time. I already had a 1 1/2 year old beautiful little girl. But my periods would be normal one month and be totally out of it the next, like I would bleed for months at a time and no Dr. could figure out why. Even though I wasn't doing anything but sitting on the couch or in bed I was losing so much weight. But we just thought I had a bug that I just couldn't shake. I was sick ALL THE TIME!!!

In 1998, I got pregnant. During this pregnancy I couldn't do ANYTHING! I was sick and I lost 45 lbs.! By the time I delivered my daughter I weighed 94 lbs.! She weighed in at 6 lb. 1 oz. 3 wks early. But she was perfect and healthy. What more could I hope for other than having the energy to take care of her. I was so depressed this time and I know now that it was a lupus flare, not just post-partum depression like the Dr. said. When she was 9 months old, I had a spell where I was so weak I couldn't pick her up. I tried and I dropped her! I felt so awful! So I went the Dr. and he ran some blood tests and immediately put me in the hospital. He said that the results of his tests came back and that I shouldn't even be alive right now! And he needed to run more some he could figure out what was going on. While I was in the hospital I had a major kidney infection and that is when they decided to test for lupus. It came back positive.

I was sent home with Plaquenil, prednisone, and K flex. I gained so much and was still so sick from all the meds my husband left me and the kids. Oddly enough shortly there after I started getting better. I got a job and insurance. So I started seeing a Rheumatologist. I wanted to know what would happen if I got pregnant again and he said that wouldn't happen. I was on too much meds to even be able to conceive and that being on birth control would be detrimental to my disease. So I carried on missing a lot of work because I was so sick I eventually got fired. So now what? I met a wonderful man, who knew about SLE. And he took me and my girls in. In less than 6 months I was pregnant. Now keep in mind 5 years had passed. So far my Rhumie had been right until now. As soon as I suspected I might be pregnant I stopped ALL meds. But as it takes weeks for the meds to take affect, so it does for them to get out of your system. So the first trimester was hell on the baby. I had a pretty normal pregnancy until the end. We knew she was breech so we already knew about the c-section. However, 2 wks before I had and ultra-sound and all was good 1 wk later the baby had started losing weight. It's called intra-uterine growth retardation, commonly brought on by the SLE or so I was told.

I had a mild flare after the surgery so I started taking the meds that I stopped 8 months before. When they ran out I didn't have the money to have them refilled. So I went on mostly in pain but to engrossed in my new family to let it get to me besides my new husband is VERY supportive and helped out a lot. 15 months later I was pregnant again! o.k. this time I was not on any meds.

So I'm 5 months into this one and I start having seizures, brought on by excessive fluid in my spinal column that is putting pressure on my brain stem. At 7 months I find out I have gestational diabetes. o.k. pretty common. A week later I am hospitalized for a kidney infection. I asked the Dr. then if there could be something wrong with my kidney's due to the SLE and he said he doubted it. So I am a week away from delivery and I fall. 9 months pregnant I fall, and break my ankle in 3 places. So due to the ankle and the seizures he opts for a repeat c-section.

It's been 18 months, I STILL have not healed. I'm still having problems and infections because of the c-section, we can't get my seizures under control, 2 months ago we x-rayed the ankle and it is still broke in 2 spots they just won't heal. So this is my story. This disease really needs publicity. And I can't stress that enough! What you guys are doing is awesome and I'm behind you 300% !!!!!

Brightest Blessings,

Wendi

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