One day in October of 1998, at 11:00 P.M., I was on the phone with my sister-in-law when I suddenly got a sharp pain in my upper abdomen. Within fifteen minutes, I was really feeling ill. Two days later, after tubes and tubes of blood, MRI's and body scans, the doctor delivered the news that I was hepatitis C (HCV) positive, my gallbladder had been destroyed and needed to be removed, my liver was one step from cirrhosis, and my terrible body pain was caused by fibromyalgia. I had gone from being well to being very ill in the blink of an eye.
Only a few months earlier, I had had my annual physical exam, and all was clear. I was one of those with HCV who never had an abnormal liver test. I have no history of drinking or drugs, but I am a nurse with a history of accidental needle sticks and blood spills, and now I am the patient.
Due to the condition of my liver, I underwent forty-seven weeks of daily hepatitis treatments. It was a horrid experience! I suffered brain fog, hair loss, body pain, extreme weight loss, and fatigue. Both the HCV and the medications opened the floodgate for autoimmune disease with a fury. Within six weeks, I was in full HCV remission, but I had to continue therapy to make sure it did not return. My choices were few: cirrhosis or autoimmune disease.
My first autoimmune symptoms included the terrible facial butterfly rash of lupus. This appeared along with the nodules of rheumatoid arthritis (RA) on my legs, accompanied by neuropathy in my feet and protein in my urine. The list of symptoms and lab findings seems to be endless: short-term memory loss; facial, forearm, hands, and lower extremity skin thickening; and some facial bone loss. Sjogren's has caused many problems with my teeth. Constant irritable bowel syndrome (IBS) often keeps me homebound. The butterfly rash has settled into a permanent blush.
Two months ago, I underwent successful lithotripsy for a large kidney stone. My urine is still protein positive, and I await the results of a twenty-four-hour urine test, while they check for the cause of the stone and the condition of my kidneys. My white blood count is inexplicably high. I have a lovely new cough, and I am now on medications for heart palpitations, a dynamic heartbeat, and hypertension.
My primary care physician and rheumatologist have prescribed medicines to control the outrageous neuropathy, fibromyalgia, and rheumatoid arthritis, as well as the scleroderma muscle and joint pain. I still lose hair and have unreal scalp sensitivity. It seems like I have yet to not be in a flare, and sleep is evasive at best, but the HCV remains in remission.
Was my battle with HCV worth it? Yes! I forgive myself for those days I refer to as my daze. Now I set one goal to accomplish each day, even if it is just doing a load of laundry.
I have two great kids—the best reasons to fight on.
Email: [email protected]
Story posted 3-13-02
Story edited VH1: JTD 9-9-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Irritable Bowel Syndrome (IBS)
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.