Hi. My name is Deanna.I started having a lot of pain while working in a factory. I went to the nurses, who sent me to the doctors, who said it was
tendonitis, bursitis and such. Physical therapy helped for a while. I changed jobs to an easier in the deli of a convenience store. I did fine for a while, then the pain just got worse and worse. I would get up in the morning and couldn't bend my hands to dress. I couldn't pick up a glass. At the time I smoked and it was painful to lift a cigarette pack. I knew
something was horribly wrong but, unless there is blood and guts hanging out, people can't see pain, so they can't realize what you are going through. I went for test and test and test. They said arthritis, maybe lupus. I was then sent to Mayo Clinic and was told it was scleroderma. They told me there was nothing they could do, except manage problems as they happen. They couldn't tell me if I would die or not, for sure...just to wait and see. I had other doctors tell me there was no hope whatsoever.
Then my husband and I saw this thing on TV about chronic illnesses... don't let them get to you... you get control of it. One day at a time. God has allowed me to take more time to smell the roses. I see things better now, I can see more now what is important. I have been doing great for the last few years. I have had pain, which is just the way it is...I live with it. I don't even remember what it is like to not have pain. But I have been able to do plenty over these years. I even wonder now if it has been sort of a remission of sorts. I have painted, sewed quilts...even tying them together, made cakes for all the kids, baby-sat my new grandson. I am so thankful to God for these great
opportunities.
Lately, I'm not sure if the "remission" is over or what. I have been hurting so bad. My hands again, do not want to open, are very swollen. It has been very painful to do the
simplest things... q-tip to clean my ears is painful. Only people going through this will understand. I'm trying not to be discouraged...but to be honest, I'm not doing very well at it. I feel changes going on all over again, I am tired all the
time, which my family just knows that is the way it is now. I've
changed to another, easier job.
It sure doesn't take much to take for granted what we can do. Adjusting the sheet in bed, pulling up your pants, getting a glass of milk, pouring a cup of coffee, blowing your nose, holding a book in bed...running a brush through your hair. Yes, a good cry can help, writing this is helping, because I haven't shared what's going on these last few months with my kids...I feel almost like I am starting over with this disease. It is very humbling to have my husband help me dress and tie my shoes. But...it shows me how much he really loves me. If you are just diagnosed...you are not alone, there are people who understand what you are going through, and do not give up. I have talked to people who were diagnosed 25 years ago and are still with us and doing okay.
email: ddh@bevcomm.net
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