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Kym: Diffuse, CREST Scleroderma, Lupus and Fibromyalgia

My hands started to go white in air conditioned places.

For Kym by Sherrill Knaggs, ISN Artist Hi my name is Kym and I am forty-five years old. It all started with Raynaud's in my fingers and toes when I was about nineteen years old, in 1979. I thought it was very weird but it only bothered me occasionally, so I did not mention it to anybody other than family members. My great-grandmother and my dad both had hands that turned white, but only in severe cold and they were both smokers. My hands started to go white in air conditioned places. At age twenty-three I showed my family doctor and he diagnosed the Raynaud's and that was that.

I now had a name for what my fingers where doing, but at the same time I was always going to the doctor for seemingly unrelated things; a cold that would not go away, a sore that would not heal, very irregular periods, a lot of fatigue and minor ailments.

I had my first baby when I was twenty-one years old and delivered him nine weeks early by emergency C-section. Healing took an incredible long time and my scar from belly button to groin became about a half inch thick and very deep and always tender. I settled into motherhood with great ease. I had a second child who was six weeks premature, again by emergency C-section, and I suffered from a blood infection. I was constantly fatigued after the birth of my second child in 1984. That alarmed not only my family but also my doctor. With breastfeeding a newborn, and a two-year-old child at home, I expected to be tired but I felt terribly run down.

It was discovered that I had a thyroid problem and had also not recovered completely from a blood infection I had gotten during my daughter's C-section. Fatigue and generally poor health continued for quite a while with no definitive answers. I suffered from bouts of bleeding diarrhea and intestinal discomfort and constant heartburn but no answers yet as to why. And nothing seemed to last more then a couple of days. It was like constantly being plagued with the feeling of getting the flu. I was also experiencing some ulcers on my fingers that where very painful and hard to heal and seemed to have vague body aching.

At the time I was in a very emotionally, mentally and physically abusive relationship and I think my doctor attributed a lot of my "whining" to depression and the effects of an abusive relationship. So at my doctors prompting I went into counseling which resulted in me gaining the confidence to leave my unhappy marriage.

For a short time I felt wonderful as I felt I had a new lease on life. I took my children and moved in 1990, to London, Ontario. I went back to school and got my nursing certificate, and at this point and time was starting to experience some severe ulcers on my hands to the point where I was unable to work at times.

My fingers were white almost all the time. An ANA test showed positive for lupus and scleroderma. In 1992 I had a bilateral sympathectomy where they went in under my armpits and severed the sympathetic nerves that respond to cold. Ureka! I had warm cozy hands for approximately one week and then the Raynaud's came back. This surgery was extremely painful and not helpful. This was very upsetting as this was starting to affect my everyday life.

I was then referred to Dr. Janet Pope who immediately diagnosed me with fibromyalgia and my blood work showed positive for scleroderma, but all I seemed to have was the finger and toe involvement. I had not yet attributed the aching in my body to the disease. I still just thought I tired easier then others.

I then started to see an acupuncturist but after a year there was no great improvement and it was extremely costly. By this time it was 1995, and I was starting to have trouble swallowing which was very distressful as food has always been my friend. But again nothing lasted for any length of time. After numerous tests and procedures I was not any further ahead. I was told to eat small bites and be careful with things like meat and bread.

Things stayed about the same until 1999, when I discovered a lump in my right breast and it was cancerous. My younger brother was just in remission for eleven months from Hodgkin's cancer and my emotions along with my families were way too raw.

My world had just effectively fallen in around me. It was determined that I would require a mastectomy and it was also discovered that I had some some indefinable spots in my left breast. I was faced with the most difficult decision of my life and I was only thirty-nine years old. But with the love of my two wonderful children and a incredibly awesome new husband and the family support I weathered through a bilateral mastectomy and reconstruction. I was suppose to have follow up radiation but with scleroderma it is contraindicated. It could cause severe scarring to my lungs and chest.

Cancer was much harder to deal with then my scleroderma because the result was almost immediate and scleroderma takes its good old time. I will celebrate five years cancer free on November 18, 2004. And as always I am trying to see the good in everything. The gift of cancer for me was a set of perky 36C breasts! (I was a 36A before the cancer.)

But it was only five days after my mastectomy that I started with incredible indigestion and heartburn to the point where I was belching nonstop for days and days but no one could tell me why. I again had a battery of tests and a hospital stay indicated that I now had severe acid reflux and esophageal motility problems. Quite possibly from the introduction of tubing during my lengthy eight and a half hour cancer surgery.

After my mastectomy I had an incredible time getting on top of the pain. I went from an achy body to all out full blown pain. I was taking plaquenil but had an allergic reaction that turned into a rash all over my chest and was then diagnosed with vasculitis and I was back to the hospital again for antibiotic treatment of a skin infection from this. At that time I was also having great pain in my right rib area and was later diagnosed with chronic pancreatitis. Manageable but uncomfortable. I was started on medication to help with the motility problems but today they are mostly ineffective and I eat one small meal a day of about three or four ounces and eat a lot of pudding and drink Ensure (a meal replacement drink.)

In May of 2002, I also started experiencing increase menstrual flow and irregular bleeding and pelvic pain. I was already taking medication for pain and ended up addicted to them by the time it was determined that I had endometriosis. In 1989 I had a hysterectomy with removal of both ovaries, so was thrust into menopause.

I was terribly unprepared for that. I had been concentrating so much on the actual surgery and concerned about the healing process which I was afraid of it being so unmercifully long as I am a slow healer. I did not even think about menopause until I was between bouts of hanging from the ceiling like a scared cat or I would be terribly depressed. So now I was in full blown menopause at forty-three and feeling like I was one hundred years old. I am now on some hormone therapy that helps a great deal. And am no longer addicted to pain medication.

Experiencing daily pain is fatiguing and constant. I started taking Vioxx (a COX-2 inhibitor which has since been withdrawn from the market) but I had a stroke in 2002 while on it so that did not work and, thank God, I have very minimal damage from the stroke, just a little bit of drooling and some weakness on my right side.

Now my biggest challenge is eating as I vomit and feel nausea whenever I eat. My gastroenterologist is talking of a J-tube but I will put that off for as long as possible. My days are very unplanned as I never know how I will feel from day to day and on bad days hour to hour.

I try to keep a good attitude but sometimes get very frustrated with my body and its failure to be able to do all the things a young forty-five-year-old woman can do. I no longer grocery shop or do laundry as my Raynaud's has become very bad. One thing that I have discovered quite by accident is that if I keep artificial nails on my fingers that I do not get ulcers. I have had nails now for three years and have been ulcer free. I do not know if it is just coincidence or not.

I did join a breast cancer support group and found their stress management and imagery very helpful and cancer did put a very different spin on my disease. I feel that my cancer diagnosis fueled the scleroderma, all though I am also sure it would have gotten worse in time anyway. I am starting to experience shortness of breath and some heart palpitations as of late so I am booked for more tests this week.

This is the first time I have actually felt really bad for any length of time, at least six months or more now. It use to be just for a few days or a week. It seemed that I was able to keep it manageable before, or perhaps like my daughter states, I was in denial about it and simply cannot deny anymore that my body and my life are not what I expected at this age.

I do not fear the disease but rather the prospect of what it does to you. Some days I think, "Wow do I really feel this lousy or am I being a baby about all this?" Thank goodness for antidepressants. It took me a long time to decide to take an antidepressant, as I already take eleven medications to get through the day now. It was hard for me to accept that depression was part of the disease, menopause and some hard life experiences.

It took me a long time to accept that I was not giving up or giving in which was helping me cope with the day to day of what was starting to happen. I had to get over the stigma of taking an antidepressant. My doctor and family have been very supportive and loving.

I can no longer clean my own home and I have lost a real sense of well being. I think that I am doing okay, but I do not look forward to where this may lead. I am very glad to have found this site and look forward to exchanging stories, trials, tributes and triumphs with other people with this disease.

To Contact the Author

Email: [email protected]
Story submitted 11-15-04
Story edited 11-15-04 JTD
Story lost in cyberspace SLE
Story finally posted 05-27-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Acid Reflux
Cancer and Scleroderma
CREST Scleroderma
Dr. Janet Pope
Diffuse Scleroderma
Digital Ulcers
Dysphagia (trouble swallowing)
Intestinal Involvement
Radiation and Scleroderma
Shortness of Breath

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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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