Here is the page to share our stories to help other understand what we go through. If you would like to share your stories Please email them to me and I will post them. Dont add your last name please just provide either your first name or nickname. Add your state and disease. 



 My Story - Olivia

One of the first words out of everyone's mouth when finding out that someone they know has such a disease, it is always " what was it like when you first became ill"? This is how my story started. A child of 15,  I began to notice that I felt I was getting out of shape..I was always heavyset so when I started feeling this way it was over looked...I was having problems doing things like climbing on the school bus, or getting out of the tub. I lived with that for a while but slowly  became weaker and   more listless, and started missing school. After awhile I started noticing an odd rash on my arms. At this point it was winter and the rash seem to keep a purplish tint to it. The same rash started later on to appear on my face. I wore makeup everyday that I did go to school, but it didn't stop people from noticing the rash on my arms and hands. I had peers from school making comments like "EEEWW WHAT"S WRONG WITH HER THAT"S NASTY LOOKING". So naturally I didn't want to go to school anymore. On the days when I did attend school, I skipped lunch and spent that time in the library just to avoid social contact with my school mates.

   After this went on for a while my parents found a Doctor who was willing to work with our horrible financial problems. When this Doctor took a look at the my rash on my face, he described it as a Butterfly Rash. Then the doctor asked me what I felt at the time was an odd question, "Have you been feeling weak or tired?". When I answered yes, he proceeded to explain an disease neither me or my mother had ever heard of before by the name of Lupus.  The doctor then continued to proceed with a few test to pin it down to Lupus.

  One day I thought I was having an appendicitis and had to go to the ER. The pain was agonizing. After a cat scan , it was found that it was an ovarian cyst that had ruptured. At the ER I had found my next Doctor that would help me on my road to recovery. Dr. Refai explained a few things that night and asked a lengthy amount of questions. I later ended up one of his valued patients. 

The outstanding docters in my life. 

When alone in the world, cling close to your docters for they may become your best friends as well.

Dr Basil Refai 

Dr. Donna Paul (Scott) 

 After a few months I ended up in a wheel chair. This disease had truly taken its toll on me. I could not get up out of chairs with out someone pulling me up, couldn't walk up stairs or even brush my own hair or teeth. I was miserable. In the meanwhile Dr. Refai was sending me through extensive tests to diagnose the Lupus. I went through all sorts of tests, MRI, muscle biopsies, nerve biopsies, skin biopsies, you name it I went through it. The test I hated the most was the nerve induction test. In this test they stick needles in your muscles and send electrical shock through it to make the muscles "work". It was the most painful test even to this day I had ever been through. From my understanding the worse off your muscles were, the more painful the test will be.  I was exhausted, mentally and physically.  Every test came back negative for Lupus, and a waste of my time and energy.

  Finally the trip to the Dermatologist was made, just to see if I could get some cream to aid in my dry skin and rash. When the Dermatologist walked in and took a good look at the rash on my hands. With confidence the Doctor informed us that it was NOT Lupus it was indeed Dermatomyositis. Showing me the books he had, he explained that in Lupus the rash is between the knuckles, in DM it is on the knuckles. After all those test, just a glimpse from a Dermatologist determines what was wrong with me. Shortly after this information is told to us; I was tested with a positive results for Dermatomyositis.

Through many years of testing and experimenting drugs, We found a combination of drugs that sent my disease into remission. Prednisone and Methotrexate.  About 5 years passed and I stayed in remission. Now present day I am facing another flare up, and hoping to find the proper steps to get it back in remission. Now I am also the owner of Murals By Libby as well as several other businesses ... Hoping to get it rolling God only knows SSI is not enough to survive on.

Any questions you may have for me feel free to email me, I will share with you. Share your stories, it might help someone else to realize this will be a long road, but one they can survive. And to never give up hope. You are NOT alone.

Feel Free to visit all of my businesses and websites!
My Lupus and Myositis website/ support group - Pass it on
This is My photography website specializing in Pet-ography
My poetry website, You can share your poems here as well!
This is my Mural Business - bringing imagination to life
My party and event planning, Let me handle the details!



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