Remembering back to when my illness began is painfully easy for me and my husband. It began when the baby of my family of four was only five years old. I was the mom that baked cookies, attended every sports game, sewed pajamas and knitted sweaters for my brood with great love and affection for my family.
In the early spring of 1994, I started having painful finger joints and extreme fatigue. I sought out help. I figured a few blood tests and a quick diagnosis of maybe Lyme disease or rheumatoid arthritis with some medications would help me get back on the mommy fast track. My tests came back normal findings.
So, when the blinding headaches and swollen knee joint presented themselves I thought, "Now the doctor will have something more to work with." After aspirating the knee fluid and again no definitive answer to my problems, my resolve sank. At the age of thirty-three I found myself struggling to function with the knowledge that nothing was physically wrong with me and so it was not long before I became quite depressed.
I missed my daughter's outdoor field day at the end of kindergarten because I had been rushed to the hospital with a racing heart. I was tachying away at 160 bpm with numb hands and feet. The attending doctor diagnosed Raynaud's of the feet, hands, nose and possibly the heart. After a few days in the hospital I was released with a diagnosis of a panic attack and no abnormal heart findings.
I am now forty-eight years old and continue with the occasional crazy heart beat. I don't go to the ER anymore. My arthritis symptoms progressed to severe osteoarthritis of the basal joints. Very difficult to work with limited thumb movement, but I have learned how to use my hands in unusual ways so as to reduce the pain. My neck, in the last few years, has developed stenosis. My lower spine has developed arthritis also with slight scoliosis. My rheumatologist, who has been great from day one, told me honestly that connective tissue diseases can take many years to fully manifest. He knows I am in pain and he validates my symptoms. My right hand recently has begun to contract painfully into a claw when I am very cold or have used it too long. It is fleeting but excruciating. My esophagus has been checked out by way of barium swallow. There is a very slow wave abnormality as the contents are trying to make their way to my stomach.
Last week I was caught off guard in the car without my bottle of spring water. I had two gummy bears stuck in the very center of my chest and the pain was horrible. Even after I got the water the pain hung around for a few days.
My next appointment with my doctor is in August so I have to keep a symptom journal as new things crop up. The only abnormal findings that he sees all the time now are an ANA >640, below normal white count and an unusually high group B strep culture in my urine. I can't feel patches on my back, hip and forearm. The sensation is very dull and just slight as compared to normal skin. My tongue has constant ulcers on the tip. My hands swell, then get shiny, tight and smooth. The flesh on the right hand has become somewhat atrophied as compared to the left. My body is in constant pain especially my spine. I have moderate hearing loss in my right ear and mild in my left. No one knows why. After last year's diagnosis of thyroid cancer I thought, "Hey, maybe this was my problem all along." Silly me, it was just an add on. At least the cancer is curable.
For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is. I have become a grandmother and am happy to still be able to change diapers, even though I am a lot slower at it than I used to be. Snapping up those little sleepers are impossible so when I babysit I have my husband help with that. I take a lot of ibuprofen as prescribed by my rheumatologist. It helps somewhat but my primary care doctor keeps telling me that it is not good for my stomach. There always seems to be a trade off.
The high dose of thyroid replacement hormone to keep the cancer at bay has increased my heart rate further so I now take a beta blocker. My weight has dropped recently and I think I am not absorbing my food well. Truthfully it hurts to eat so I find I skip meals. Not good I know and I am going to change that with food modification. Now that I have baby food in the house again I might as well treat myself to some.
I keep my chin up and I try to enjoy each day. When I am exhausted I listen to my body and nap. Work is something I hang onto because it helps me get out of bed every day. Typing a lot at work is not easy but I can handle it so far. Life goes on and adaptation to changes can be a big help both physically and mentally.
Email: Withheld by request
Story edited 06-17-09 JTD
Story posted 06-30-09 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Difficult Diagnosis Stories
Dysphagia (Difficulty Swallowing)
Overlap Syndrome Stories
Skeletal Involvement Stories
Undifferentiated Connective Tissue Disease (UCTD). Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
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.