Connective Discoveries

When I was just 14 (1989) Lupus became a part of my life permanentally. I can remember being really sore and my mother thinking I just wanted to stay home from school because she couldn't see anything wrong. I developed this rash on my face under both eyes and on my nose. My ankles and hands began to swell and I was so tired and sore, my mother ended up taking me to the ER at UW Hospital and Clinics in Wisconsin (where we lived at the time). I ended up being hospitalized for months and transported to Mayo Clinic in Rochester Minnesota for more tests (blood & skin biopsies) until they finally put their heads together and diagnosed me with Lupus.

The rash on my face is something common in Lupus patients and is called the "Butterfly Rash". After my diagnosis of Lupus, my health really failed. My kidneys were leaking protein (microscopic blood) and my mind couldn't take the pain of knowing I will be sick forever. THERE IS NO CURE FOR LUPUS.

I was in and out of the hospital, needle pokes eventually felt numb, and depression set in. My kidneys were not responding to oral meds and the doctors were running out of ideas to treat me because Lupus was so rare. I began monthly infusions of a chemo drug called Cytoxan. I would always get dehydrated so I would have to stay in the hospital a day or two. While my classmates were planning their week and all the fun it entailed, I was planning my next chemo treatment. After six months of chemo I had a kidney biopsy and for the most part the chemo helped. Eventually, I ended up doing those treatments two other times for the same reason. I missed out a lot in high school because I was hospitalized so much and home schooled in the hospital.

I finally had control of the Lupus with medication. I was planning my High School Graduatuation and for the first time in my life, setting goals for my future. Just when I thought my life had turned around, my mother became ill. My mother was in a coma for months and came home not able to eat real food and tubes coming out of her in every direction. I had to feed her twice a day through an I.V. in her chest for a long time. My mother eventually had a full recovery, but my mind still pays the price.

I decided to move to North Dakota where my mother was born and raised. The Lupus had good days and bad days. In 1996 I had trouble with blood clots in both legs and doctors ended up taking out a vein in each leg. In 1998 My grandfather became very ill and I ended up taking care of him and watching him suffer. He died in 2002. I miss his jokes and his long standing pranks! He was always telling a story and wanting to pull a prank on someone! :)~

I decided to finally do something for me and entered Cosmetology School. It was hard to go to school everyday with a smile on my face knowing the internal effects of Lupus were for me to feel and noone to see visually. The fatigue, migrains, and arthritis were my main pains in school until October 2003. In October my skin began to feel really tight and my fingers were always blue and ulcered. Once again after numerous tests and biopsies and a trip to Mayo in Minnesota. I was diagnosed with Raynauds and then Scleroderma and to sum it up Mixed Connective Tissue Disease. THERE IS NO CURE FOR SCLERODERMA. I had no health insurance and it took the help of the North Dakota Senate to get it. At that point my life stopped and my body became a human pin cushion. The Raynauds was uncontrollable and I ended up having surgery for that. The surgery was a failure and the side effects are inhumane. I now sweat from the breasts down uncontrollably like a faucet. The Scleroderma was so active that my lungs began to shrink and my muscles were being eaten (Polymyositis) as I grasped for all the air my oxygen tank would allow and my wheel chair would hold. My insurance was denying me treatment and my health was failing.