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Sheila: CREST with Limited Scleroderma

This is my journey and I am going to chart my own path.

Butterflies and Roses for Sheila by Shelley Ensz Hello, my name is Sheila and I have scleroderma. To be specific, I have limited CREST (or cREsT—Raynaud's phenomenon, Esophageal dysfunction, and Telangiectasia) with pitting digital ulcers.

I was diagnosed in August 1992 in Banff, Alberta, Canada, but I was told the diagnosis in a five-and-a-half minute phone call (while I was at work) by the rheumatologist I had seen in Calgary. This diagnosis came after much pestering on my part to get the results of my antinuclear antibody (ANA) test. (The serum from my blood test had been tucked away in a refrigerator in the University of Calgary hospital for two months. Also, my rheumatologist had gone to Europe for three weeks during this time.)

Needless to say, the nurses could not tell me anything. After I received this news, I phoned my family in Victoria, British Columbia to share the diagnosis. My sister had noticed on the television an announcement for the Victoria Scleroderma Support Group. She and my mom went to a meeting prior to my return.

I felt really scared, confused, and dehumanized in the process of my diagnosis and from further dealings with the "western medical field." Upon my arrival and resettling in Victoria, I launched a quest into the holistic healing world. My first stop was to a naturopath. He diagnosed many food allergies, particularly dairy products, that were aggravating my immune system. The rheumatologist in Calgary said quite blatantly that there were no related food allergies with scleroderma. I knew in my gut that he was "full of it." This is my journey and I am going to chart my own path.

Anyway, over the course of the past six-and-a-half years, I have explored acupuncture, biofeedback, meditation, tai chi, vitamins, and assertiveness training. What I have discovered about myself and having scleroderma is that protecting oneself (with dignity and respect) in combination with these holistic techniques are far better healing remedies than toxic drugs (mind you, I am on two drugs which are helping management of the disease) and toxic doctors who fail to recognize that we are not the disease, but rather we are real, feeling people who want to live the best lives we can.

From what I have gleaned from my own general practitioner (GP) and local rheumatologist is that the kind of scleroderma that I have is minor in relation to the realm of symptoms. However, my life has changed rather drastically over the past six years or so.

I began experiencing Raynaud's Phenomenon at age fifteen, and I was diagnosed at age twenty. Now I am twenty-seven. I was ready for the diagnosis and the change in my life. It is really funny, as I had secretly wished for some personal direction and meaning in my life. My quote that I share with others is, "Be careful what you wish for because you just might get it and you might not like the package it is delivered in."

Well, this is the package I received and indeed I have made lemonade. However, the chilly fingers and toes, the digital ulcers, and the heartburn really get me down sometimes. The fact that my tongue is affected with Raynaud's too offers me some freakiness/fun. I see it as comic relief, although others beg to differ.

Also, I always wanted to have long nails. Well, due to the ulcers my nail beds have decreased to the point that now I always have long nails. I chuckle at this when my fingers are not too sore. I have had to give up my passion of playing the piano due to the pain of sensitive fingertips; the lack of pads on my fingertips does not help. I am still searching for a passion to replace the one that was robbed from me. This process since the diagnosis has been an opportunity for me to explore my self and the world around me. I have, most often, used it as a vehicle to travel to warmer climes a few times (a poet and I did not even know it!).

The rheumatologist here in Victoria gave me some advice that has helped me control the progression of this disease. He said that when I deal with stress in effective and productive ways, I will conquer this disease. I have to confess that when I deal with situations more assertively, I feel warm all over my body. The blood zips around and nourishes my whole body.

Living with a chronic illness has been a challenge and I must admit that I am ready to release it from my life.

This is my story for now. I am feeling relatively healthy and am studying hard to be a social worker at the university here in Victoria.

~ Update 04-04-99 ~

Spring is here, and is again, totally confusing me. The sunshine signals my brain to start wearing one layer of cotton clothing, yet the breeze or rain say polar fleece. Sometimes I cannot figure it out so I go back to bed where I am always warm. Well, the bed thing does not happen all that often, but it sure is confusing with the changing weather.

I have been using Duoderm (it is a substance made of pectin), along with this sticky dressing also made of it, to cover any suspicious looking skin on my fingertips to ward off ulcers. So far it has been pretty good. I have one on a finger and it sure is a nice buffer to the tapping on the keyboard. I have been able to get group members (for school projects) to type up the bulk of the assignments and then I swing into action with my editing skills to tighten up the project. So far so good!

Anyway, I survived another Canadian winter. It was very wet this year, and I look forward to a warm and fun spring and summer!

~ Update 10-07-99 ~

The greatest news from this past spring and summer of 1999 is that I was able to reverse three concurrent digital ulcers in two weeks. They never amounted to anything, and from eating bags of baby carrots and using my voice rather than my fingers for much writing or typing, my fingers had an opportunity to heal and strengthen.

I was working on my first social work practicum at the time in community economic development. However, I am back in the classroom and back on the computer for assignments, and my hands have been rather chilly and sensitive. No major problems to record. I acted on my rights as a student with a disability to increase the temperature of my classroom. I feel warmer already. The more I use my voice for justice and rights, the warmer and healthier I feel.

I am still living in Victoria, BC, Canada. The "wet" coast. Again I bring out my wool, long underwear, and polar fleece clothing to deal with the cooler temperatures.

Way back in December I had an endoscopy of my esophagus. I was tested for Barrett's esophagus, and thank goodness no pre-cancerous cells were found. I have to keep an eye on that.

Speaking of the esophagus, I have found that Zantac 75 twice a day works wonders for the reflux. I tried another brand but without much success. Taking it twice a day keeps the reflux at bay for the whole day/night.

I have been redefining my support team to include people who not only seek out information to share with me but that they also ask me how I am feeling and how this information would apply to me. This is a very important aspect in communicating my needs to others who want to "help" me. My redefinition process has brought me far more satisfaction and useful information from those who want to offer support. Not all "help" is "helpful."

I am nearing the end of my social work degree. I have two courses right now and I will be doing my last practicum in the new year.

~ Update 12-02-00 ~

I just turned twenty-nine on December first. It has been over a year since I have had a digital ulcer, which still amazes me.

I recently graduated, with distinction, with a Bachelor of Social Work degree. My second practicum of my degree focused around starting up three arthritis support groups (Ankylosing Spondylitis, Sjögren's Syndrome, and a Young Women's group for ages twenty to forty, of which I am a member) and facilitating arthritis and fibromyalgia self-management courses.

I was asked in early October last year if I could help start a scleroderma support group in Bellingham, Washington. Nothing came of this specific request, except an idea for my final practicum and a conversation with the social worker here at the Arthritis Centre. Having scleroderma became an inroad or opportunity rather than a barrier that I have often experienced. From my experiences with the scleroderma support group here, I realized the amazing benefits from learning from peers and how important having a support network really is for wellness and healing.

I believe that the scleroderma may be burning itself out. I still have the chronic reflux, but no more digital ulcers. I still get Raynaud's attacks, but nothing leading to the ulcers. My fingertips, though, are intensely sensitive and painful to touch. Not that long ago I uncovered the clearest comparison to the kind of pain I experience in my fingertips (from the scars from the ulcers): broken glass shards jammed into them. This image has connected me with people who have no idea what arthritis feels like, as they can imagine what broken glass feels like in their skin. This has been particularly important in my current pursuits in awareness-building of arthritis to the general public and arthritis advocacy, to let them know that young people get Autoimmune Diseases, too.

I am learning how to listen to and trust myself. I made a short relaxation tape (seventy-five seconds), with my voice guiding me through the exercises. I am telling myself, gently and warmly, to relax and take care of myself. It is the little things that move mountains, as far as I have experienced.

I found a rheumatologist in Vancouver who is interested in working with me to create wellness for/in me and learning from the process. I had a battery of blood tests and an ECG done and a couple still left to do (a CT scan of my lungs and a pulmonary function test.)

I am currently looking for work as a social worker and the threat (real or imagined) of a potential flare-up paralyzes me. I was phenomenally healthy during my practica in my degree, but something still intensely scares me about working and having this disease. I know I will deal with whatever comes my way, as I have so far. I have to maintain my commitment to look after myself (and stressful situations) in my own way.

I learned how to protect myself in a women's self-defense class, with a minimum of pain and discomfort. Now I will be sharing this wisdom, along with my instructor, with other women with arthritis.

I have recently begun a process of emotional healing and surrendering to the things I have no control over and taking initiative in the things I can influence in my life. I am learning to love and respect myself so that I may love others and let others love me. I get fewer Raynaud's attacks and more energy. I am in better shape than I have ever experienced. I am addressing fear and pain head-on as much as possible, striving for clarity and understanding, and using my voice, listening and trusting my intuition, and honoring my boundaries.

That is where I have been since the last submission and where I am now. The future looks bright, interesting, warm and welcoming—even with winter coming up soon.

~ Update 04-11-01 ~

The sun is bright and warm, flowers blooming all over town, fresh green leaves refreshing the city, and still no digital ulcers! The scars remaining from the ulcers I have had still annoy me to no end; I really have trouble adjusting to the sensation of broken glass shards jammed into my finger tips—it does not work for me!

I have enjoyed a relatively mild winter here, which has been wonderful, and of course, living in polar fleece (top and bottom) has been so great! I think I should invest in some of their stock!

I have not really changed much in my lifestyle, other than working for the Canadian National Institute for the Blind as their area captain/coordinator of canvassers for their fundraising/sales campaign. I work with amazing people in my team. Though I am not blind, they are very cooperative and help me with the physical parts of the job. New for me is management, which is fun, but somewhat stressful, however nothing I cannot handle.

Over the past couple of months, I have been involved with co-facilitating a pilot project for youth with juvenile rheumatoid arthritis with the Arthritis Society. It has been interesting bringing together teenagers, since my experience has been primarily with adults. We will see what unfolds with the results of the project.

Here is the big news for me: I am engaged to be married at the end of August to a man who has become a very important member of my wellness team in so many ways. I am looking forward to the warmer weather, as always.

To Contact the Author

Sheila
New email address needed 7-13-03 SLE
Old Email Prefix: struss3
Story posted 1-20-99
Updated 4/4/99, 10/7/99, 12/2/00, 4/11/01
Story edited 7-13-03 SLE

Story Artist: Shelley Ensz
LINKS
Antinuclear Antibody (ANA)
Autoimmune Diseases
CREST
Digital Ulcers
Esophageal dysfunction
Limited Scleroderma
Victoria Scleroderma Support Group
Raynaud's Phenomenon
Sjögren's Syndrome
Telangiectasia
Go to Sheila Z: Scleroderma
 
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