I was just seventeen when I was told I had rheumatoid arthritis (RA). In 1991, I woke up one morning and had aches and muscle stiffness all over. I had been out dancing with friends the night before and thought it was because of this, but the symptoms never went away. So, I went to see the doctor and he told me I had arthritis.
Then about a year later I had what my doctor thought was the mumps. I felt dreadful and my glands in my neck were very swollen. I could barely move my head! The doctor took some blood and sent me away, and then a day later my doctor rang me at home and asked me to go to the Accident and Emergency department immediately and someone would meet me there. I did not have mumps, I had thrombocytepenia (low platelets) and my platelets had all but disappeared from my system. The doctors would come and stand at the end of my bed, scratching their heads whilst the platelets that were being pumped into my body just disappeared. I was in hospital for two weeks whilst they tested me for all sorts of cancers, as they were convinced that was what was causing it. This was my first experience of a bone marrow test and the 'pain worse than childbirth' associated with it. I nearly broke the nurse's hand that day!
Eventually, they dosed me up with steroids and my body stopped killing off the platelets, so I went home. Over the next few years the doctors weaned me off of the steroids and I seemed to be okay. The arthritis was still an issue and I had developed Raynaud's, CREST (limited systemic scleroderma) and my hands had started to deform slightly, but it was manageable and I was so busy enjoying myself at university I just got on with things.
Then in July 2001 I started to feel very poorly. Initially I felt hot, sweaty and bloated and then I noticed that the whites of my eyes were turning yellow. I went to see the doctor who thought I may have malaria; he took some blood and sent me away to await the results. Over the next few hours my skin became yellow and I called the doctor. He had been reviewing my notes with regards to my arthritis and previous thrombocytepenia and he thought I may have autoimmune hepatitis, but he wanted to wait for the blood tests to confirm his suspicions.
I went to bed that night very yellow indeed and when I woke in the morning I thought I was going to die. In all of my life I have never felt as poorly as I did that morning, and I admit I was very scared. I could not lift my head from the pillow and my mouth was unable to even form words properly. I called the doctor who asked me to go to the hospital and he would meet me there and arrange a bed for me immediately.
I eventually got to the hospital and further tests confirmed that I did have autoimmune hepatitis and it was bad. They got to work on me fast with liver biopsies followed by massive doses of intravenous steroids and for ages nothing worked whilst my temperature went through the roof and would not come down, I thought it was the end, but then suddenly my body started responding and as soon as it did amazingly I started to feel better very quickly. I left the hospital two weeks later still on massively high doses of steroids. My moon-face looked ridiculous, but I was alive.
A little while later my rheumatologist confirmed that they thought I had mixed connective tissue disease (MCTD) with rheumatoid arthritis (RA), Raynaud's, thrombocytepenia, scleroderma, systemic lupus erythematosus (SLE), autoimmune hepatitis, and others that may come along in the future. I felt like a ticking bomb, and he started me on medication called azathioprine, an immunosuppressant, to keep things under control.
In 2002, I became pregnant with twins but continued to take the azathioprine throughout; the only restriction was that I could not breast feed. The babies were delivered eight weeks early by emergency caesarean as one of the babies had stopped growing. They were in special care for a while but they were fine, thank goodness!
Things ticked along for a few years, the doctors playing with my medication levels and keeping a close eye on me. I developed esophageal motility problems, shortness of breath, a 'lupus rash' across my face, neck and chest and pre-cancerous changes on my cervix (due to an HPV virus that got out of control because I was taking immunosuppressants).
Then in 2007, whilst in the middle of my second bout of shingles, I noticed I had a large lump in my right armpit. I went to the doctor and he suggested it was just swollen glands as a reaction to the shingles. The shingles went away but the lump did not. In the space of a few weeks it grew from the size of an egg to that of a large orange. I went back to the doctor, and was immediately referred to the breast clinic. After a biopsy and an ultrasound I was sent away and told to expect the results to say that I had breast cancer. However the results showed that I did not have breast cancer, I had non-Hodgkin's lymphoma, the doctor told me that this was good news as lymphomas respond much better to treatment and can be cured.
The B-cell lymphoma was very aggressive and they started me on chemotherapy within a few days, I had lots of scans and another date with the dreaded bone marrow test. Evn though my tumor was so large, the cancer had not spread to other lymph glands or areas of my body.
I had six rounds of chemotherapy and twenty doses of radiotherapy and was told to stop taking the azathioprine immediately as this can increase your chances of developing lymphoma, (you don't say!).
It is now 2009 and I have been cancer free for one year, however in the last few months my scleroderma has really kicked in. I am not taking any medication as the priority was the lymphoma for a while. My esophageal motility problems are getting worse, muscle stiffness and joint swelling is worse, I have a lot of hardening of skin and underlying tissue in my lower legs and the Raynaud's is becoming unbearable. I dread to think what could be going on inside!
To top it all off, thanks to the chemotherapy, even though I am only thirty-five, I am going through early menopause! But I am still alive!
Email: [email protected]
Story edited 02-09-09 JTD
Story posted 03-11-09 SLE
Story Artist: Jeannie McClelland
Story Editor: Judith Thompson Devlin
CREST Syndrome Stories
Liver Involvement Stories
Overlap Syndrome Stories
Skin Fibrosis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
ISN Artist: Jeannie McClelland
|Jeannie McClelland, ISN Artist, created the digital photo to illustrate the story on this page. Jeannie is also an ISN Assistant News Guide and ISN Sclero Forums Support Specialist. Visit Sclero Forums for terrific free online support, 24 hours a day!|
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
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, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Michele Maxson, John Moffett, Joan-Marie Permison, John Roberts, Margaret Roof, and Maryellen Ryan.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. 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:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.