Sclero and I
Tuesday, June 19, 2012
By: Jerri Sue DeTray

having scleroderma

Hello, my name is Jerri and I am a thirty-eight-year-old mom. I was twenty-one years of age when I first noticed that my fingers, toes and lips were turning colors. It scared me at that time. I went over to my sister's house and grabbed her medical book. My sister was going to medical school. I finally found something that was just like my symptoms. It was Raynaud's.

I showed my sister and after a discussion she told me that I should notify my doctor. My doctor sent me to the hospital for some tests and the tests confirmed that I had Raynaud's. Then Dr. Roode wanted me to see another doctor, Dr. Harmon, a rheumatologist. She discussed with me that I could eventually have lupus or scleroderma. I just thought 'like you must be kidding,' I really did not pay any attention to what she was saying. Her words went in one ear and out the other.

It was not until my diagnosis of scleroderma that I knew I was in for a long haul. My mom said that she had thought it was their fault for my having this. She made the remark that their blood did not match, and that from day one of my life I had health problems. I was allergic to everything, even water. My doctor was worried but said I should be getting some nutrients because the water would stay down for awhile before it would come back up. Finally I guess I outgrew that allergy.

Growing up I can remember being really tired all the time. I would go to school and then come home and take a nap. My mom told the doctor what was going on. He simply told her I must need the extra sleep and not to worry. I always seemed to catch colds a lot. I had pneumonia a few times and always had sore throats.

One time in junior high school I had gotten up out of bed and I could not walk. The doctor could not explain why. He thought maybe I had hit my knee on something as I was a teenage girl who loved to run and climb trees, anything an active teenager would do. Eventually the pain in my right leg went away. Then one day my right knee started giving me problems. I could not join the track team because of it. It was so painful but that also went away.

I had my children at the young age of seventeen. My parents could not believe that I wanted to try and have children knowing I would be too tired to take care of them. But I fooled everyone. I thought I was in love and wanted to get married and have children. I have three children. All my children were born prematurely. My oldest son, Michael, weighed three pounds and five ounces and is now twenty-one years old. Joshua weighed four pounds and five ounces and is now nineteen, and Andrea weighed in at four pounds and seven and a half ounces and is presently eighteen years old. They all deny that anything is wrong with me and get scared when something goes wrong with me. I am the only parent my children have as their father committed suicide at a young age. I was not married to him at that time.

Over the years nothing seemed to really go wrong until 1992 when I started to have pain in my knees again. I went to a doctor in California after I had remarried and moved to California. The doctor ran some tests and thought I had a connective tissue disorder. He gave me medicines for the Raynaud's like Dr. Harmon and Dr. Schoomaker did back in Ohio. I felt a little better.

Then we moved back to Ohio in 1994 and I started having problems with my right knee again. I had developed calcium deposits and they wanted to come out; nasty white stuff, which lasted a few weeks and cleared up. These infections in my knee happened on and off for years and would clear up until 2002. I also started experiencing reflux and had to see a gastroenterologist, and had the endoscope exam done. I was told I had Barrett's disease, so I was given medicine for that.

Well, I had enough of all this so I quit going to the doctors, except to my family doctor who I began seeing when I first moved back to Ohio from California. After I started having more problems with my right knee in 1996, I was told I had scleroderma and I chose not to see that rheumatologist ever again. I was in denial. During that year the movie "For Hope" came out. I watched that movie and was terrified by it. My mom could not believe I had watched it knowing it would upset me, which it did. I called my second husband who was in the military (USMC) and told him that I had been diagnosed with scleroderma. I tried to explain what it was. Two weeks after that he came home and asked me for a divorce. That is when I went into a severe depression. I was losing someone I loved very much and thought was my soul mate. He told me it was not me or my children, but that it was him. Later I found out there was another woman involved.

Then I met my third husband through my children and his. We dated for six years and got married on October 25, 2002. Then the my health problems started happening again. I had to have knee surgery this past February 2003. They removed the calcium deposits because it would not heal. I was taking a lot of antibiotics. That is when I started having problems with my bowels. I now have ulcerative colitis, a hiatal hernia and high blood pressure and thyroid problems. Life is so grand right now! I had a lot of problems with the bowels and we thought it was diverticulitis at first. I spent a lot of time in the hospital during February through April 2003. I was in the hospital for my thirty-eighth birthday, which was not what I wanted. Finally they did a colonoscopy after the second time of going into the hospital for bleeding and diarrhea. They told me I had ulcerative colitis. I was so scared and thought I was going to have colon cancer. But I don't. Then I had to have another scope down my esophagus. The Barrett's was no longer there but they told me that I had a hiatal hernia. They also told me I could not have the surgery for this hernia, because of the colitis.

I also had a lung test done in April 2003 and found out my lungs are starting to harden. Right now I am on an inhaler and I really do not think it is helping. My chest feels heavy. I am waiting for the doctor to call. I am so very tired every day and my right hand and foot are bothering me also. I am so tired of feeling run down every day.

I think that is all I can remember. I will update later. I wish I could twinkle my nose and this would be gone. My nickname is Sam (that is why I say I wish I could twinkle my nose.)

~ Update 06-08-04 ~
A lot has been going on since I first posted my story. I finally found a new rheumatologist that I really like. His name is Dr. Bashar Kahaleh. He has run a lot of tests on me. I had another pulmonary function test (PFT) done back in the early spring. It was showing something going on. I had another heart CT scan and x-rays of my lungs.

I am having a heart catheter done on my right side of my heart this Thursday, June 10, 2004. They told me that I have some scar tissue in my left lung. I have been having a lot of shortness of breath. In the early spring I also found out that I have fibromyalgia. Dr. Kahaleh wanted me to go do water therapy and I did for awhile. At first I was doing really good. I could tell the difference in me in two weeks. My muscle strength was getting better.

Then I started having problems with my left hip and knees hurting. I had finally told the doctor that I cannot get rid of the pain in my hip so he gave me a shot. The pain went away but I was sore for s few days from the shot.

I was also at a sleep study place as we are trying to figure out why I am so tired all the time. I wake up about five or eight times a night. Dr. Kahaleh put me on some medicine to help me get into the deep sleep. It helped out a lot the first two weeks then I was waking up like before, but this time I am not so tired during the day. I still take my naps during the day but not like I use to. I have some sleep apnea but not enough to do anything about it.

I go back to see that doctor on June 24, 2004. My only concern now is that my lungs are not doing what they are suppose to do. That scares me to some extent. I had met a lady recently that told me that I did not look like anyone who has scleroderma. (Whatever that is supposed to mean.)

I also want to say that I have a support group going in my area where I live. I really enjoy doing this, meeting and helping people with scleroderma has helped me to grow and understand that I am not alone. That is what I needed in my life. I had never seen anyone else with scleroderma except on television when they showed a lady on Oprah. Now I have met twenty-five people who I see each month and each one of us is in different stages. For the first time I actually got to touch someone with skin tightening and wow are they tight. Some of the members have curled hands and tightening on both arms and face involvement, but they still are going about there lives.

To me I am sort of lucky in some ways but in other ways I am not. Well, I will write more after the heart cath and let you know what is going on with me.