"I'm not alone, after all,
and maybe I'll get the chance to cheer someone else up someday."
Hello, my name is Irja, I´m a 34-year-old woman from the land of Santa Claus, Finland. I´ve had CREST since 1998, or at least that´s when it was diagnosed.
I´m divorced and have no children, and at the moment I share my home with just two wonderful cats. I started studying in a university last autumn, majoring in information studies. I had been working as a cleaner for a firm that washes machinery and stuff in a food factory for some years, but then in 1998 things started to change and I had to rethink my future.
I often had to work in quite lousy conditions, clothes getting wet and temperatures changing from chilly to hot in a short time. I realized that my fingers were getting white and numb when I stayed in a room that had temperature near zero degrees of Celsius, and I had to keep them in a bowl of hot water to be able to continue to work. Sometimes they just turned blue and ached painfully.
My working partner told me to see a doctor when I got a deep cut out of nothing in my finger and it just didn´t get well but kept bleeding a bit and was very sore to touch. At first I just got a leave for a couple of weeks, but it didn´t help at all.
I was somewhat depressed, because I didn´t know what was going on, but I had a hunch that it wasn´t just an ordinary infection in my finger. So I went to see my doctor again. She had already gotten curious about my left hand fingers that were much thicker than the right ones. They had been like that for so many years that I don´t even remember them having been otherwise.
I had also had some dry and hard spots on my hands and wrists for at least fifteen years, but I had always just thought that my hands were just ugly as ET´s, and I had never heard about CREST or scleroderma in my life. Fortunately, the doctor wanted to send me for some tests in a hospital for rheumatological diseases, so off I went.
I was tested thoroughly and when the results came back, they told me that I seemed to have a rare disease called CREST, and that was the reason for my infected finger and all the rest of the symptoms. I guess at first I just didn´t quite understand what they were telling me, because it took a while until I started to realize that I really had a disease that had a name.
I would have wanted to ask if I had to start making my last will or what, but I had to keep it all inside of me, because I knew nobody who suffered from similar illness. When I tried to get some extra information from books, I found out practically nothing that the doctors hadn´t already said, and that wasn´t much. All those medical terms made me even more confused, let alone the fact that I would have wanted to exchange thoughts with somebody who knew what I meant. I felt like a total weirdo with my odd illness that nobody else seemed to have.
Later I started to have esophageal problems as well, and I have some difficulties in keeping the food inside, if I have just a little too much to eat (which I do, I just happen to love food and cooking.)
I also have pulmonary hypertension for which I have to take medicine regularly, and my Raynaud´s has gotten worse. Nowadays it affects both hands and toes and it often starts to bother even when I´m cozily inside and warm.
I sometimes sense a strange weakening and burning feeling in my arms which lasts a couple of minutes at a time and I think it has to do with the illness, but I haven´t been able to describe it to doctors because there just isn´t right kind of words to describe it to someone else.
It´s not until recently than I have started to search for sites on the net to get information and connections, and I find this very helpful and even inspiring. I´m not alone, after all, and maybe I´ll even get a chance to cheer somebody up some day.
Of course I don´t know what the future has in store for me or anybody else, but I strongly believe that nothing significant in this world ever happens without a certain reason to teach us something.
Through these sites I have gotten the courage to take the first step to find other people in my country, too, who have scleroderma. I just wrote a note in a health magazine asking those people to contact me, and now I´m waiting to see whether they´ll publish the lines or not, because I think this is something that I have to fully put my contribution to.
New email address needed 07-19-06 SLE
Old Email Prefix: irja.l
Story posted 4-14-01
New Email Address 03-27-05 SLE
Story Artist: Shelley Ensz
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.
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