Hello my name is Rose and I was diagnosed with diffuse scleroderma April 2006. It has been very fast pace for me. It seems like right before my very own eyes, I am seeing things that I can no longer do that I could have done a week ago!
I truly believe in God, but I must say I am so angry! I literally sit and cry because my hands are the worst. They are completely swollen, red, itchy, with burning sensation and in pain constantly.
Most of the medicines they prescribed are too strong for my stomach, but I have been on something recently that does take the edge off!
One thing I found out by corresponding with some of the patients, is it has been years and they are still quite angry. I have been angry all my life suffering with depression and anxiety. I worked hard to get where I was at my job working from 9,10,12 or 16 hours a day job to no job at all. I was devastated. My children are grown so that is not an issue but each and every day is a struggle.
For now, all of my organs are okay. Two things were found with my heart but they said the one is minor and the other the muscle in my heart is stiffening up but there is nothing they can do about it.
The thing that keeps me going is knowing that there are so many people worse off out there. I try to do a somewhat regular schedule every day. The whole thing, is I don't want to be angry about my diagnosis anymore. I want to turn that anger into something positive!
I just turned forty this month and I refuse to give up, but believe me some days are better than others.
My husband is not very supportive. He is used to me doing everything at home and still does not help. He does peel potatoes now and mashes them for me when I make a dinner. It is getting harder for me to cook or to stir food. I have trouble getting dressed. I can hardly open anything with my hands. They are all crippled up and already a doctor in Pittsburgh claims there is permanent damage done to my fingers. Now it is all into my arms, shoulders, neck and back, so I suspect by the end of summer, I will not even be able to drive anymore.
I am very angry at God and the world. Please, anyone who has gone through this, respond to me.
Family and friends are great and always have their "own opinion" on things, but it is like they don't have a clue! One of my friends said that maybe I ought to try to exercise them or bend them. I said, "I can't open or close them." I do get some exercise doing dishes, laundry, cooking and cleaning. I love to garden so I think I am doing the best I can.
My best saying is what did I ever do so bad to deserve this? How can God watch me just sit here and cry each and every day? I cry if I am soaking in the tub because that is an ordeal in itself getting in and out of the tub.
I love contacting friends and relatives by the computer but I am making mistakes (typos) all the time so I get discouraged. I truly do know I am not the only one going through this, but I need some help from someone.
Please if this letter has touched you in anyway, respond to me. I need advice. I will be happy to hear from anyone that knows what scleroderma is. I actually have people saying, "Your hands look like a dead person's hands or a mannequin or fake plastic hands."I get the question, "This isn't contagious — is it?"
May God bless each and everyone of you involved with this whether you have the disease or have a loved one who does.
My condition is somewhat stable at this point. My left hand is crippled up as bad as my right hand now. My inner spirit has changed tremendously!
I no longer sit and just cry about my pain. Yes I am still in constant pain, the pain never goes away. The only time I don't feel pain is when I am asleep and sometimes I actually am awakened by the pain but somehow manage to go back to sleep.
The reason for this update is to not only to thank you for this web site but I have been contacted by so many wonderful people whether they are also suffering from this disease or their loved ones are, and now they actually have become my email buddies. We ask questions back and forth all the time or just send notes.
My attitude has changed as I said my faith in God is much stronger. I am more positive about my life. It is just unbelievable how much better my thoughts are even with all the pain and changes. I feel I need to focus on what I still can do, not what I can't do! So please hopefully this update will touch all of you who are in doubt or pain or just on the edge of giving up please always remember there is a light at the end of the tunnel. In the darkest hour you too can feel some peace.
I want to help anyone who needs any kind of help, whatever I can do to help someone else is just so fulfilling. I took a lot for granted in my life and I feel while going through all of this pain, I don't want to just exist in this world, I want to make a difference, a Good Inspiring Difference, not just for myself but for others also.
When I wrote in my first letter I did not know if I was coming or going but I have good news. I intend on fighting the scleroderma until the end! Full force.
Best Wishes for everyone else. I sure hope you also find your light as I have found mine. Please contact me if you need to just talk or ask questions.
Email: [email protected]
Story edited 04-22-07 JTD
Story posted 04-26-07 SLE
Story update edited 02-19-08 JTD
Story update posted 02-20-08 SLE
New email address posted 02-20-08 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Sclerodactyly (Hand Involvement)
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
Many thanks to our recent donors, Jack and Elizabeth Lewis, Network for Good, Shirley Miller, Reata Pharmaceuticals, and United Way of Snohomish County! See ISN News for more donors. Click Here to Donate.
TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
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: