At the age of fifty in July 2001, in the middle of a mini heat wave, my hands were freezing and I finally accepted that this was not normal. I had to tell my doctor that my hands were cold. Can you imagine how stupid I felt? But I did not have to worry because my doctor was, and still is, the best. He immediately suspected Raynaud's and started me on nifedipine. Great! Sorted! (Problem solved!)
On August 13, 2001, I had an infection on my right middle finger. My doctor phoned our local hospital, and I had to go there straight away. I had to have my wedding ring cut off. I was sent for blood tests and x-rays and told I would probably have to stay overnight as they suspected osteomyelitis, but I had to wait for the surgeon to confirm. He said there was nothing wrong and told me to go home and take aspirin. I was at the hospital for seven hours.
Six days later, I was in so much pain my husband took me to the hospital and they told me there was no connection to Raynaud's. I went on holiday from August 27th to September 11th, but was in constant pain. On September 16th, my husband, Jim, could not stand it anymore either. I went back to the hospital where, at last, I was taken seriously. Part of my finger was removed as it was too far gone to save.
When my doctor heard about this he went "ape" and wrote to "the main man" at the hospital. I had to see my doctor on September 20th. He told me I would probably lose more of my finger and he was going to send letters to all concerned, and "kick arses" (his words, not mine). He was the one who told me about The Raynaud's and Scleroderma Association.
By the beginning of October, I was under the care of another doctor in the Connective Tissue and Rheumatology Department who confirmed Raynaud's and scleroderma. He also told me that nifedipine had to be gradually increased and prescribed lansoprazole for the heartburn and morphine for the pain.
When I went home and reflected on the past three months, I just could not take it all in. It must be happening to someone else. "Hey, I am just ordinary," I thought.
Well, on the 17th of September I saw a "fingers and hands" expert. What can I say about her? I think she probably saved my life if not my sanity. Yes, I did have more of that finger taken off. No, I was not happy, but at least I was not frightened anymore.
So on November 11th my finger was amputated just above the top knuckle. Unfortunately, an infection set in. I was put on antibiotics, along with all the other drugs which now meant twenty-three pills per day. My husband Jim said, "That is nearly one per hour."
Never mind, we are getting there, or so we thought. Wrong! On December 1st, I was back at the hospital with a worse infection! I was given three bags of antibiotics on a drip, more capsules to take, along with metronidazole.
The doctor said, "If there is no improvement…". Well, there wasn't. Can you guess the next bit? I have left out some of the stuff, but I have got it all in a diary if anyone wants to know about it.
On Friday February 1, 2002, I went into the hospital to have an Iloprost infusion by a syringe pump. I had to stay for five days as that is how long the treatment takes. Whilst I was in the hospital I met, for the first time, a fellow sufferer. It broke my heart. She was far worse than me. All I could do was offer support and understanding. How humble I felt.
On Thursday, the 28th of February, I had some more of my finger taken off.
With all that has happened to me, and is still happening, here I am. As you all know, it is never "over," but at least I, for one, can close that particular chapter and be ready for the next, which I am not looking forward to. But with the help of my family and friends and the wonderful medical team, rare though they are, I know I can make it.
On October 3, 2001, I was a volunteer patient for the Royal College of Surgeons examinations held at Orsett Hospital, because I was, at the time, quite a rare case. I was treated like a queen. I received a thank-you letter afterwards saying that forty-seven of the sixty-five students passed the exam, which equates to seventy percent of the candidates making the grade.
Warmest love to sufferers and treaters.
Email: [email protected]
Story posted 5-15-03
Story revision posted 5-19-03
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Digital (Finger) Ulcers
The Raynaud's and Scleroderma Association
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: