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Leslie: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes

I have no control of what is going on with my body.

Yellow Flowers with Painting by Shelley EnszMy name is Leslie and I am thirty-seven years old. I am married and have three boys, seventeen, thirteen, and five years old. I am a mentor of domestic violence, and a advocate for autism, because my youngest is diagnosed with autism/pervasive development disorder (PDD).

In October 2006, I started experiencing severe stomach pains, not like menstrual cycle pains, but more like labor pains. I went to my primary care physician, and was told it may be pre-menstrual cramps. He told me to take Tylenol for the pain. The pain did not stop, it got worse and then resulted in having diarrhea. Every time I ate I had diarrhea; I could not keep anything down, and had more pain during these episodes.

I went back to my doctor and told him that my condition was getting worse. He referred me to a gastroenterologist. After four months of suffering I went to see a gastroenterologist, and had several tests done. The first test done was blood work and stool taken, the result was negative, except that I am anemic. The doctor told me to monitor what I am eating, prescribed iron, and said if I am still having these symptoms to come back to the office.

Well, nothing was working. I took over-the-counter medications for the diarrhea and pain. I watched what I was eating but was still having the same symptoms, and I lost weight because of not keeping any food down. So I returned to the gastroenterologist, and more tests were ordered. The next test was a upper endoscopy, and that result was negative. He then ordered a CT Scan. But before I did that test, I notice some discoloration of my hands, so I went to see a dermatologist.

The dermatologist did a biopsy, and said that I have vitiligo. He explain that something like this usually occurs when your immune system is compromised. He told me that there is no cure, only creams to cover the area where it is discolored. I felt that my world was spinning out of control. Usually I am the one that is always in control of difficult situations.

Everyone can depend on me no matter what happens in life. I had no control of what was going on with my body. This time I had no answers but only questions. I used to weigh one hundred and eighty pounds around September of 2006, but had dropped to one hundred and seventeen pounds in April 2007 due to the diarrhea.

So I went to do the CT Scan and that was negative. Later on I started having muscle and joint pain in my feet, hands and legs. Around the time I was moving into my new apartment, I saw another primary care physician. She was an internist also, and sent me back to the gastroenterologist.

He then had a PET Scan done which came back as abnormal lymph nodes, but not a diagnosis. He then said that I will have to see a surgeon, because they could not give a direct diagnosis. At that time I was still getting more sick, and no one had any answers for me. I started feeling frustrated and scared. I thought that doctors should have all the answers, since we live in a country that is suppose to be advanced.

I did see a surgeon, and he told me from reading my medical file, that I need to have a biopsy on my lymph nodes in my neck and groin. He said that we should get to the bottom of what is going on with me.

While waiting for a date for my surgery, I had a rash on the side of my leg, that was spreading. So I went back to my dermatologist, he did another biopsy and it was a fungus. He prescribed medications which cleared it up. I guess you can say when it rains, it really rains.

In June 2007, I had the biopsies, and removal of my lymph nodes in my neck and groin. The surgeon said that the results came back with signs of lymphoma, but still not certain. My family and I started to panic, because both families had a history of cancer. Thanks to my mother-in-law and husband they took charge of my health, consulting with the doctors, taking me to my appointments, making sure I have all the care that I need. I, on the other hand, was left with 'what if's' and 'what about our kids?' I had return to my doctor and she referred to a oncologist.

I went to see an oncologist, and he did a bone marrow biopsy. This was very painful; I ended up screaming in the doctor office. He also took blood from me to rule out cancer.

The following week I went back to my primary care physician, with new symptoms of muscle spasms, feeling so cold that my hands and feet turned color and fel frozen. My feet and hands were always felt swollen, and made it difficult for me to walk, climb, open doors, jars, or reach for things on the shelf. My appetite was very poor. I still could not keep any food down, and the stomach pains remained.

She then referred me to a rheumatologist. He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers. This was a relief for me and my family, just knowing what was wrong, and starting treatment. But this was just first step of dealing with Autoimmune Diseases. I had to do another biopsy, by the dermatologist to confirm if it is scleroderma, and it was positive.

The rheumatologist did blood tests too, and the result show that I have a overlap of lupus. I said to myself, "Why me?" I am a good person, I have been through so many rough times. How come this is happening to me? I have a family that is blessed with love. When will this come to an end? When will this go in remission or will I be cured and have a normal life? But yet I keep my faith and hope that this will come to pass.

In the last month of October 2007, I had a severe reaction to the flu vaccine and ended up in the hospital for four days. I went into the hospital with bad stomach pains. I started getting cold fast, and the doctor and nurse could not find a vein to run a IV line. I ended up having a central line in my neck, where they can administer medication. I was told that I had a bad virus.

Today I am still dealing with my autoimmune diseases. I have ten doctors; a primary care physician, rheumatologist, gastroenologist, oncologist, surgeon, podiatrist, two dermatologists, nephrologist, and sleep/pulmonary doctor. I am currently taking thirteen medications for my illness.

My condition is that I still have muscle and joint pain, and Raynaud's (due to cold); and my fingers and toes sometime curl in. I no longer have stomach pain and diarrhea. The discoloration of my skin is getting better, from the creams my dermatologist prescribed. I have ulcers on my fingers and I have to use bandaids on them; they make it difficult to type, tie my shoe laces, etc.

neck with lighter skin and groovesThe skin is tightening around my neck, arms, breast and chest. I am itching more often around my neck and chest. I cannot be cold especially at the doctor's office, supermarkets, stores, so I have to wear gloves, hat, and jacket to stay warm.

I am using orthotics in my shoe for support, because it is difficult to stand and walk. The podiatrist prescribed an orthopedic shoe to wear. I have a walker to help me get around when I go out. I use a car service to go out because I cannot travel on the trains and climb the stairs. But most of all I have my family for support, although I feel depressed sometimes.

My dream is to beat these disease, and to help other people at the same time.

To Contact the Author

Email: [email protected]
Story edited 05-06-08 JTD
Story posted 08-22-08 SLE
Neck photo by Jessica B.
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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In Loving Memory

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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