I am very proud of the fight my mother put up. She lived fourteen years with CREST scleroderma. She died on June 9, 1999. She died a terrible death.
She handled the disease very well for the pain she was in, but eventually it took her away from me. She got to where she couldn't even enjoy bingo, which she dearly loved. We live in cold weather, which affected her hands and feet. She was the most wonderful mother and friend I could have ever had. And she was one of the bravest women I ever saw.
When she was diagnosed with CREST, she was very scared. For the longest time she tried to get help so that she could understand what was wrong with her. It took a long time. She finally had a blood test done that revealed it. She saw a doctor in Rockford who was wonderful.
My mother had the hardening of the skin, digital ulcers and ulcers on her feet and, ears. She had difficulty swallowing and hoarseness. In the end, her insides hardened as well as her outside, right before our very eyes! It was the most awful death I had ever seen. She could not breathe at the end. She was on quite a lot of medication and nothing helped. She went and pushed on for years until it finally won. The cold got to be too much for her. Even her smoking got to be too much. She had a very strong will about her and she pushed her self to the limit. I only hope I am as strong a person as she was.
She was my very best friend. She was there for me when I buried my twenty-two-year-old son, and I was there for her until the end. The world and I lost a great woman and friend. I am very proud of the fight she put up.
I now wonder if I have it in my hands and feet as they turn very bluish black, and I get very hoarse now and then and seem to be very tired a lot. I have a lot of heartburn. I had a blood test done a few years ago and they say, “no.” But another doctor says I have Raynaud's. I cannot stand the cold or putting my hands in the freezer. My hands hurt and get cramped sometimes when they get cold.
Can someone help me?
Since my mother died in 1999 of scleroderma I have been fighting all the same symptoms; the hurting and blueing of the hands and feet, ulcers around the nose area, swelling of the feet and hands, voice getting hoarse and difficulty swallowing, and I cannot seem to get any help.
I thought maybe I was imagining it because my mom died and I missed her so, and still do, and was acting out her symptoms as I took care of her and knew all of them. But I am still having the symptoms and they are getting worse now that winter is here.
I work in an office and wear gloves because my left hand turns bluish black and hurts so bad. My feet hurt all the time when it is cold and my body aches all over. I do know that I have Raynaud's which was diagnosed before my mom died.When she was dying she told me that she suspected that I had scleroderma but she hoped not.
I cannot seem to find any help and was checked before she died with a single blood test that showed nothing, but something must be wrong for me to hurt so bad. It is not normal to wear gloves inside at work. I cannot sleep because I hurt so and my hands swell so bad and my skin is so tight. My back hurts all the time.
If this is what I have I can deal with it, but not knowing what is wrong is very difficult. It took a long time for them to find it in my mom. There is no support where I live at all!
I can fight it like my mom did if that is what I have. She was a fighter and so am I. I desperately need help please.
Hi my name is Chris. My mother died from scleroderma. I miss her very much. She was a fighter of this terrible disease. She showed me what it was to fight and be tough.
Since her death I have been fighting some of the same symptoms and found out that I have Raynaud's. They cannot seem to find anything else even though some of the symptoms are more like scleroderma. They say it is a tough disease to determine let alone live with.
I have since joined the message board on scleroderma and met some very wonderful people and real fighters of this disease. I truly hope some day they find a cure for this disease and help people to live their lives to the fullest.
I wish my mom could have lived longer to see what they have accomplished so far. She would be very pleased.
In memory of my best friend Veta Breit.
Old Email Prefix: becks
New email address needed 07-18-06 SLE
Story posted 3-23-02
Story updated 3-24-02
Story edited VH1: JTD 8-20-03
New email address needed 8-22-03 SLE
Story edited VH1: JTD 8-13-03
Story updated 12-6-03
New email posted: 12-7-03
Story updated 01-25-04
Updated story posted 02-14-04 SS
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Difficulty Swallowing (Dysphagia)
Voices of Scleroderma Volume 1
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!
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.