I have always been an active individual, but that all changed about two years ago. I am thirty-five years old and I noticed a decline in how I feel around the time that I got married in September of 2007.
I am a nurse and started experiencing generalized weakness and I felt tired all of the time. I would go to work, come home and make dinner and I was exhausted and on the couch right afterward. Next came the joint pain. I noticed it especially at night. I would crack loudly in my joints just from repositioning myself in bed. I seemed to be coming down with every cold and virus known to man. I was sick more than I was healthy.
I started suffering from upper right abdominal pain and diarrhea. I worked with gastroenterologists and have a strong family history of colon cancer so they suggested a colonoscopy. I had three polyps, one of which was potentially cancerous. I also had an EGD which showed gastritis and esophagitis. The abdominal pain and diarrhea continued.
I had a hepatobiliary scan to check my gall bladder function. They said that it was only eight percent. I had it removed in June of 2008. I still suffer from the abdominal pain and diarrhea.
I had blood tests for Lyme's Disease, hepatitis, you name it. I finally asked for an ANA test to check for lupus. My family doctor hesitated because my symptoms were all over the board. It was positive and he referred me to a rheumatologist. He ran his tests and I was diagnosed with Mixed Connective Tissue Disease, Fibromyalgia, Ankylosing Spondylitis, and Raynaud's.
Since the diagnosis, I have been on Plaquenil, which is not working. I am in pain every day and I feel as though I have become a burden to my husband and my two sons. They are fourteen and nine. If I am in bed, they are doing the housework. My husband has to be sick of me complaining about the pain. I do not take pain medication because I fear addiction. I have been to the emergency room too many times to mention for IV steroids. They are the only thing that seem to help me. However, they have horrible long term side effects. I am bruising everywhere now and I am up at night. My liver enzymes were elevated and my rheumatologist wants to wait until they are down before trying methotrexate to get my condition under control.
I feel helpless and alone. I feel like my life is slipping away from me slowly. I miss my job, I miss my life. I had never heard of this disease before I was diagnosed with it, even as a nurse of eleven years. I am praying for an effective treatment. I am here for support if anyone else may need it. I have nothing but time on my hands right now because my body is not letting me do what I want to do. Please feel free to contact me with any advice on current treatments. I will be forever grateful to any support I receive. I am here if anyone needs to talk. Thank you so much for listening.
Email: [email protected]
Story edited 07-31-09 JTD
Story posted 07-31-09 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Medical: Diseases and Symptoms
Overlap Syndrome Stories
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.