I had heard that when you get in your forties, they are the best years of your life. Well, on July 3, 2002, two months after my fortieth birthday, I was diagnosed with CREST scleroderma with Raynaud's. What a fun day!
I have been married to a wonderful man for seventeen years and we have two precious daughters ages fifteen and thirteen, those wonderful teenage years, but actually they are pretty good kids. I also have been a hairstylist for twenty-two years, the last two as my own boss.
I have had Raynaud's since I was about twenty-three, with no other problems with my hands. As time went by, my family doctor noticed my hands were starting to swell. About twelve years ago he sent me to a rheumatologist and he mumbled something about possibly having some sort of connective tissue disease. He did not seem too worried.
So every year that I went to my doctor for my physical he would keep checking on my hands and every year he noticed that the Raynaud's was worse. About four or five years ago he scheduled some blood work for an antinuclear antibodies (ANA) test. It came back saying that a connective tissue disease was active.
Every year my hands would look a little worse, and then these red spots started to appear on my face. I thought they were from getting older. The doctor always asked me if I had difficulty swallowing. "No," I said, " I just had a lot of heartburn and I ate a lot of Tums."
Last May he decided that I needed to see a specialist again. Thank goodness it was not the same one!
My first appointment with the rheumatologist was a long one, three hours long. They examined me from head to toe. Just from looking at me and my symptoms they knew what I had. First thing they did was put me on a calcium channel blocker for the Raynaud's. I now take a proton pump inhibitor (Nexium) for the heartburn and an anti platelet agent (Dipyridamole) also for the Raynaud's. I always have blood and urine tests and so far so good. I have had a pulmonary function test where my numbers were a little low, and an echocardiogram that was good.
Living is day by day. I try not to complain. My hands ache quite a bit. It is kind of scary not knowing when or what will turn up next. It is like having a time bomb waiting to go off. I tease my doctors by telling them that my bathroom is starting to look like a mini-pharmacy.
I just know that I have to let go and not try to control everything around me. I am learning and trying the hard way but I will get there. In the meantime, I do thank God for the good days!
Email: [email protected]
Story posted 4-9-03
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
antinuclear antibodies (ANA
Pulmonary Function Test Raynaud's
Telangiectasia (red spots)
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.