I was standing in the kitchen of my home in Seattle, Washington, talking with my daughter, when I felt numbness crept down both my legs. I said, "I can't feel my legs!" and sat down on the floor. My daughter called 911. I was taken to the nearest emergency room.
The doctor took one look at me and started asking questions about the red "butterfly" pattern on my face.
"Why are you concerned about my face, when my legs are the problem?" I asked.
"I am going to do a blood test," was his answer. A few minutes later I was informed that antinuclear antibodies were present in my blood and that I probably had lupus. I was given the name of a rheumatologist for follow-up care.
After consulting the rheumatologist, I learned I had scleroderma with CREST. I had never heard of scleroderma. I knew that I had dry eyes and I had been diagnosed several years earlier with Raynaud's, but I had no idea they were related to an autoimmune disease. The doctor handed me several pamphlets along with a couple of prescriptions for artificial tears, and I was sent on my way.
I began researching scleroderma, because I believe in meeting an enemy head on, even if the enemy is my own body. Scleroderma was considered a rare disease and information was scarce. That was in 1993. At that time my worst problem was battling fatigue. I had no energy and my joints hurt all the time. My eyes felt like they had sand in them, due to the Sjogren's.
My life consisted of going to work, coming home, and going to bed. I was always exhausted. Housework did not get done, I had no social life, no hobbies, no interests. It took such an effort to just be. If a flu circulated through the department where I worked I was not only sure to catch it, but would be slower to recover than anyone else.
Raynaud's syndrome was also a problem. My fingers would turn transparent white, all the way up to my palms. I would lose feeling in my fingers. Wearing gloves did not help. Stress, caffeine and rainy weather seemed to be the triggers. I would run warm water over my hands until the blood came back into the fingers, which hurt a lot. I learned biofeedback to bring the blood back into my fingers in a less painful way.
Degenerative disc disease, which is inherent in everyone, was exacerbated by the Sjogren's. The fluid in two discs dried up and they bulged, one of them pinching the sciatic nerve. I was unable to work and after a long, hard battle with the long term disability insurance company, I was able to quit work. Disability pay was half my regular income, so I began looking for an inexpensive place to move, someplace quiet with little stress. Stress speeds up the progression of scleroderma. I moved to a little town in Montana called Hungry Horse.
I was extremely lucky to find a wonderful family doctor. She treated me for depression and started trying out different medications, such as methyltrexate and plaquenil. Unfortunately they did not help. She also told me that good nutrition was important and that I should take vitamins and 50mg of vitamin B every day. The vitamins have helped the energy problem and though I am still tired most of the time, I have "windows" where I am able to enjoy a hobby.
The dryness in my eyes worsened to the point where I had to use eye drops constantly. Reading was out of the question and I found myself sleeping more, just because it hurt to keep my eyes open. I mentioned the problem to my opthalmologist and he suggested plugs in the lower tear ducts. This helped for a year, then the problem worsened again. I had both the upper and lower tear ducts in both eyes cauterized. There are just enough tears to keep my eyes moist without spilling down my face. I sure hope a cure is found soon, because there is no next step when the tears dry up more.
Swallowing is difficult for me, so I mostly eat soft, moist foods. Heartburn is also a problem. All the discs in my back have degenerated, so I am in constant pain and cannot sit, stand or walk for over half an hour. Some nights I hurt so much that I can't sleep.
A month ago I noticed that the inside and top of my right foot was numb. The numbness was constant, so I made an appointment with my doctor. She referred me to a neurosurgeon. After studying an MRI of my back, he told me there is no nerve impingement and the numbness is probably due to the scleroderma. There is also the possibility of multiple sclerosis (MS), so he ordered an MRI of my brain. MS is another autoimmune disease. There are cases of scleroderma plus CREST, where another autoimmune disease is present. I am hoping this is not the case with me.
Now I would like to focus on the positive side of having scleroderma. Yes, there is always a positive side. Once I got over the shock of learning that I have an autoimmune disease, I had two options. I could sit around, wait to die, and whine about the symptoms, or I could live each day to the fullest. Every day is a gift and I look for the good in each one. Watching a mama bird bring her little ones to my bird feeder, enjoying the way the sunlight plays on the leaves of a tree, getting hugs from my kitty, these things are precious.
So many of us get so wrapped up in our own bubble gum that we forget to stop and wonder at the beauty and love that surrounds us. Having scleroderma has made me appreciate the little things and my life is richer for it. I am closer to family and friends and have learned not to be judgmental, but to love them as they are, for their friendship is priceless. Everyone on this earth has something difficult to overcome. These things will make us stronger and bring out the best in us, if we let them.
New email address needed 07-18-06 SLE
Old Email Prefix: mcmom
Story posted 11-25-02
Multiple Sclerosis (MS)
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.