Just days ago, my sister Michelle was diagnosed with systemic sclerosis, after being misdiagnosed for almost two years. She has all but one of the top ten symptoms. We will know in a few weeks if it has affected her organs or not.
Her symptoms started in her arms and hands, which lead the first doctor to diagnose her as having carpal tunnel, considering the only fact that she types a lot at work. It then left her hands and arms (for awhile) and started to affect her hips and legs. But, the doctor still proclaimed that it was still carpal tunnel. (I have never heard someone having that in anything but the hands and/or arms.)
Shortly after that, she had trouble grasping the simplest of objects, let alone tie her own shoelaces. She then decided to seek out a more intelligent doctor. This new doctor seemed to think that she may have lupus, which is a common misdiagnosis for scleroderma. Thankfully, this caused her to get on the right track with treatments.
I had never even heard of this disease until a few days ago when my sister called me and broke the horrible news to me. I did not quite understand that this was serious until I found it on the Internet. Then I broke down and cried like a three-year-old. She is only twenty-eight years young and I am only thirty. We lost our father in 1987, and his mom just three hundred and sixty four days later.
I have epilepsy, and now she has this. How much more can two 'kids' take? On top of all of this, she has only been married for a few years and has a young son to take care of. I feel guilty because I live over one hundred miles away and cannot be there for her every day.
In the stories that I have read that are posted on various web sites, it sounds like it takes years to develop all of the symptoms. Michelle has developed almost all of them in a period of less than eighteen months. I am not trying to dump on anyone; I just needed to vent and maybe let some other sibling know that they are not alone when dealing with this terrible disease when it has struck someone that you love. Every day I wish that I could take her pain away and make it my own. I do not understand how something so awful could happen to someone so special who is just learning what life and love are all about!
When I left my story back in January, I was still ignorant about this horrible disease. I have since learned a great deal about scleroderma. I am not saying that I am coping any easier, I just understand more of what is going on with my sister.
Last month, her doctor finally sent her to Pittsburgh, Pennsylvania, where she met with one of the best doctors in the world for this illness. I am sorry that I cannot remember his name, but if anyone would like, I can ask my sister and would be more than happy to e-mail it to them. Next time I update my story, I promise to include this wonderful man's name.
Michelle, my sister, told me that he treated her like a human being who was trying to live life and not one who was making up symptoms to get attention. She sat in his office for several hours, not waiting on him, but actually talking to him! He explained to her exactly what she had, her options, and her chances.
Unfortunately, her options and chances are slim. He told her to not even think about having another child for three to five years, because in this time period her condition would most likely worsen. But, in the event that she does beat this, she would probably be in the clear after about five years, however, he was completely honest with her and told her that he did not foresee her improving anytime soon. He did tell her though, that she was in the best hands and that he would be there with her to help her in her fight!
My sister still has her good and bad days, mostly bad. She is still holding her job at the bank, still being the best mom to her son, and trying to be the wife her husband needs her to be. But, she has finally agreed to have someone come in and clean her house once a week. It is not much, but at least it is something!
So far, the disease has not spread to her organs but she and I both know that it is probably just a matter of time. We do not speak of the disease much anymore, probably because we know what the other is thinking, and we try not to dwell on the bad, we just concentrate on being there for each other and enjoying our time together, whether it is for three years or three hundred!
In today's world people do not tell the ones they love, or even show them for that matter, just exactly how they feel, whether it is out of shame, fear of rejection, or whatever. I am not ashamed of the feelings that I have for my sister. She has been my rock through out the years and now it is my turn to finally repay her by being her rock!
I believe it is important to tell our family, friends, children, on a daily basis, that we love them, whether or not they are healthy. I thought my dad was in great health, and he passed away not knowing that I truly loved him, and I will never get the chance to tell him how I felt.
Now, whenever I depart from a loved one, or say good-bye on the telephone, instead of saying, "I love you, good-bye!", I say, "Good-bye, I love you!" That way, if something terrible ever happens, our last word will not be, "Good-bye."
Since I posted my story back in January, I have received a lot of e-mails expressing their sorrow, asking questions, and lending their support. I have even had the opportunity to make some of them my "buddies" in MSN. I just wanted to take the time to thank each and everyone of them for being there and sharing! It is greatly appreciated!
Thank you for listening. I welcome your comments or questions, and I can also be there just to listen.
New email address needed 07-18-06 SLE
Old Email Prefix: wvguy27
Story posted 1-19-04
Story updated 4-21-04 SLE
Story Artist: Judy Tarro
Story Editor: Judith Devlin
SCTC Scleroderma Experts
Judy Tarro, ISN Artist, created the digital photo to illustrate the story on this page.
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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