I was just diagnosed a few hours ago. Tears are streaming down my face and I am wondering what effect they will have on my dry skin. I am writing this story to scream for help. I do not even know how to feel right now. As I read the other stories, I find strength and hope, but only for the writers, not for myself.
I have not felt quite right for a few years. First, I was diagnosed with Raynaud's (cold hands) phenomenon. They told me to stay warm. No big deal. When the digital (finger) ulcers grew on my middle finger, my doctor was amazed. He had never seen anything like that before. On my follow-up visit, he told me to stay warm. No big deal.
When my heart and chest started to act crazy, I decided to surf the Internet for answers. When I found this website, all of my symptoms had names and faces. Oddly enough, they belonged together. Although my entire medical history was explained there, I thought surely I must be wrong. My brother teased me about my Internet diagnosis. Even though something was not quite right, I could not have this terrible disease.
Today, I saw a doctor who was familiar with Raynaud's phenomenon and types of scleroderma. Yesterday, I had insurance, but today I have to go on Medicaid because I have a life-threatening disease. And I am mad!
The most ridiculous thing about this is that I am angry because I am going to get ugly and old and because I do not have the money to be sick. I have not even begun to deal with the rest of it.
Obviously, I do not yet know the proper terminology for any of these symptoms. I guess time will take care of that. Please pray for me and I will pray for all of you.
New email address needed 7-13-03
Old Email Prefix: treesiereesie
Story posted 2-6-02
Story edited 7-13-03 SLE
Story edited VH1: JTD 8-12-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Digital (finger) Ulcers
Types of Scleroderma
Raynaud's (cold hands)
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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.