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"Prior to the onset of my symptoms, 
I had worked extensively with the chronically ill, and HAD thought that I understood THEIR problems. 

I speak to you on behalf of my fellow sufferers, and hopefully I will be able to convey to you our thought processes on diagnosis; how we cope physically and mentally on a day to day basis, living with this chronic degenerative disease; some of the many trials and tribulations - the frustrations - fears - and yes, our victories. 

Like most people, I had never heard of the disease SD - nasty things always happen to other people - never oneself or loved ones. 

Your health is deteriorating... you can see feel your body functions change... you can KNOW that something sinister is happening and yet no one seems to be able to put a finger on you problem. The period BEFORE diagnosis can be horrendous and in many cases, diagnosis can take years, and yes, even unnecessary corrective surgery. I admit to a period of personally thinking that I had turned into a hypochondriac and was really worried as to how my family and friends were perceiving me. 

This will probably seem an odd statement to the healthy, but when I finally got my diagnosis... I felt a strange surge of relief! I was no longer the 50 year old menopausal woman trying to make up for an empty nest syndrome and no, I didn’t need a psychiatrist! It was, of course, to be a period of calm before the storm. 

Then it began... 

The medical text books read, questions, try to learn. Collagen, bodies glue, hard skin, Raynauds, blood flow, claw-like hands, auto-immune, bowels, rheumatology, muscles, major organs, esophagus, linear, crest, morphea, connective tissue, calcium deposits. Will it attack my brain? The frantic scrambling to come to terms with this Living time bomb. My very mortality was at stake and I did not know where to turn! 

Then the why - me syndrome... 

I haven’t done anything to deserve this... well not really... the bargaining... even with God. 

I could feel my family and friends, drawing away from me. I knew they had to in order to protect themselves... but nevertheless, I was hurt, angry and bemused. 

The most frustrating part of it all was the realization that here was a disease that had been documented as far bas as Egyptian times but no one seemed to be doing anything about it. And it was not even that rare. 

Here I was, with a diagnosis of a chronic degenerative disease, which would strike in many different ways... which in its mild form would, I felt, not be too awful to live with and at its worst did not bear contemplating. I was much to young and had so much more to do with my life. This was supposed to be a time of togetherness, Colin and myself - the time we would do all the things we had been putting off Life was to have been ours for the taking. 

It was at this same time that I became obsessed with the idea of getting the SD message over... somebody had to didn’t they? Not only to the general public, but also the medical profession. If I could do that surely someone was bound to be able to help me. 

How to do just that was the big problem... I felt so alone, it was such an enormous task and I felt so weak. 

I was to be lucky! Help was at hand... My husband heard an ad on the radio. He was excited as was I. ‘Jean’, he said, ‘a chapter of the United Scleroderma Foundation, right here in Edmonton and there is to be a meeting only two days away. 

Fellow sufferers... HELP! We are not alone, other people have actually experienced what we are going though... It was almost a disbelief. The evening arrived, we remember it well, our 31^st wedding anniversary, celebrations of a good marriage would have to wait, this was so important to us both. Cold and snow...but oh, the warmth of that first meeting. Approximately 15 members, sufferers and supporters, men and women, old and young, who formed a very close-knit bond. All working to the same end. Public and professional education knew that we belonged right from the start. We left that meeting sure inth knowledge that we would never feel alone again... their warmth and sincerity penneated and encompassed us. We had at last met other people who had lived and breathed this disease... some for many years. 

Hey, it can’t be so bad. They looked to be enjoying life, even with their disabilities and pain. It was a feeling of euphoria, a much needed tonic. Here in the not so large city of Edmonton was just what we had been looking for and had never imagined that we would find. You are certainly not as bad as some, and you are a lot better than others. It would be wrong to say that we didn’t get some shocks that evening. Some of the things that had and were happening to my fellow sufferers we had read about in the text books, but seeing for ourselves, was a whole new ball game. 

Every chronically ill person deserves a good doctor. After months of uncertainty, hospitals, clinics, tests, biopsies I’d found my doctor and trusted him implicitly. He didn’t offer me any miracles, but he had offered me his caring and his sharing. 

I just knew instinctively that he would always have my best interests at heart. I stress at this point that its of the utmost importance to find this good doctor to oversee your care, because he will be the one to guide you to the right specialist, treatments and medications as and when you need them. We all only have this one life to live and it’s oh so precious. 

Now I had my two life lines, the support group and my doctor. Now to start putting my life back in order. The nice complacent me was gone for good. Now I had come to terms with what life had handed me, or so I thought. But of course, it would never be THAT easy, what a fool I was. 

I soon learned that the treatment of SD was still a trial and error process. So many things going wrong, my fellows had all been through it, I was just beginning. 

The constant... will I go into remission, if I do, will it last... the mood swings... the uncertainty of it all... the mourning period. We all go through it and yes, its good for us. Don’t deny yourself. Wallow in your self pity. If you haven’t mourned - do it now and put it in the past once and for all. 

I have lived through various crisis before in my life. I would now tackle this one, not too fast, one day at a time. I learned never ever to take anything for granted again. I also discovered in the process that life was still enjoyable, even considering the limitations of my disease. I adapted - I had to, my whole world had been turned upside down - others had done it so could I. 

At first the disease was my obsession, now I was getting things into the right prospective... family, friends were going through this, too. Be in tune to them - try to put yourself in their place, know that when your spirits are down theirs will plummet with you think positively at all times - keep fighting - keep a sense of humor.. most important, however difficult! If you can laugh at your problems others will laugh with you, help you, assist you. 

Its not easy to live with SD, watching it take possession of your body - always wondering where and how it will strike next. We are all the same, but different, with some it’s a slow progression, for others it’s a fast terrifying ride. 

• Lack of blood circulation to hands and feet
• Fingers curling inwardly, blue and swollen
• Joints contracting - elbows, knees, shoulders
• Wrists tightening, tightening about the chest
• Tissues swelling - burning sensations
• Painful ulceration’s causing loss of fingers, toes, even arms and legs
• Esophageal troubles - acid indigestion
• Difficulty swallowing - mouth won’t open, rods, tubes
• Kidney problems - even dialysis
• Diarrhea - constipation, bowels not functioning properly
• Itching - drives you almost crazy
• Difficulty walking
• Heart, lungs, difficulty breathing
• The skin ever tightening - sweat glands gone
• Sleepless nights and oh, the exhaustion

         - Blood tests - can’t get the needles in - push, probe.. just another few minutes more

• here we go - oh no the blood flow stopped
• Take care of your teeth - sorry my mouth won’t open - toothcare essential - can’t get my hands to work the toothbrush, even if I could get it in my mouth. The ulcers on the gums and tongue.
• The drugs are disagreeing with me, the nausea, headaches, the pounding in my ears
• I must persevere because they might start working
• Your swollen puffy face - is that you?
• The horrid shiny yellow tinge to body, arms and legs - its hot but I must cover myself up - can’t bear people staring at me
• The claw-like hands, where can I put them out of sight. Oh yes I know they do look blue.
• The emaciated rock-hard arms and hands - I feel like tree bark - the awkward self-conscious hand shake
• Can’t manage to turn my hands to take that change - please put in on the counter
• How many more red splotches have appeared on my face today?
• Is that the calcium deposits breaking through my skin?
• Your hair is going very thin - its so dull and lifeless - perms a waste of time perhaps I should think about a wig?
• Can’t hold the soap - the milk carton is too wide - please open the jar for me
• I must get lighter pots and pans - what trouble I’m having turning the key in the lock
• Hey, will you scratch my back and help me with my sweater - do my buttons
• The baths so low - I can’t get out. Got to tie up that shoelace or else I II break my neck
• Did I make that revolting burp?
• How hard the aerosol cans are to press
• Come on legs - you always used to work so well
• Oh please, please, just let me sleep.

I can no longer drive my car - I was always so independent. I had to give up a job I loved - a trip to the supermarket is possible with careful planning on a good day - a bad one and forget it. Dressing, showering, hair all are a problem, some days even eating - but all things are possible. Mini victories are now my major goals. 

Yes, I have regrets - I would not be natural if I didn’t. How I would love to walk in a sunlit meadow or by a stream, play a round of golf - hold and diaper my grandchildren put on a family reunion - dance... but I have learned tomorrow is for regrets, today is to live the best way I know how. 

I pace myself for the really important tasks with a determined effort that all things are possible. Enjoy the things I can - the latest book, sunset, an evening with good friends, the laughter of a child. The simplest things do give the most pleasure. 

In many ways I have so much to be thankful for. SD reached out its tentacles for me in my middle years. How much worse for the younger ones, who still have families to raise, or even contemplate. The elderly, living alone. The breadwinner, perhaps no longer even able to work. The mother and father of a mature patient, wondering if they did something wrong.. could they swap places. 

And yes, even the small child. None of us is ever immune, no one is ever prepared for disaster. The pressure is enormous. I have learned so much, but have so much more to learn. 

I was chatting to a mother the other day, she told me how her young daughter came home from a friends in deep distress... all because the subject of pretty hands came up. This mother had already lost several fingers to the disease and was constantly battling painful ulceration’s and the very real fear of losing more. But you know what she also told me, that even at the very tender age of ten, she felt her daughter had already learned some valuable lessons and had compassion for the less fortunate well beyond her years. 

Always remember young or old - the right attitude and it will pass - "the yes I can" phrase will swing into action - you still have much to give. You are still a valuable member of society. I also mentioned the why me phrase. This disease has been my constant companion for 18 months and unfortunately I have yet to see the longed for remission. But in that I am not alone. The big word for us all is "hope". I am fortunate in that I have a living faith which has helped me over many a rough patch. I had always known that life for mere mortals was not meant to be easy. I just had never really known adversity before and had taken my good fortune for granted. 

I’ve discovered the phrase "indeed why not me"? I’ve been fortunate to even reach maturity, some of my friends and associates didn’t. I’ve had a good life in comparison to many. Yes, I can think of countless things worse than SD... war, torture, imprisonment, earthquakes, mud slides, the bomb, watching my child die of starvation in my arms. This is now my rationale. This is how I keep content. 

I must always remember my family, friends and fellow sufferers. Yet another aspect of coping - they go through many agonies, for me and with me. I must always show them that I am well prepared, however rough it gets. Be cheerful at all times, it’s easier than you think. Just try it, oh yes, the pain of tests and maybe surgery are all very real. But you can rise above anything, try not to moan and agonize. Be positive, be supportive, LOVE. Be sure in the knowledge that all things will eventually come to pass. Be master of your own destiny -be strong! Every day that passes, I try to fill with a new thought. I try to keep my mind active and alert. I try to tune into everyone about me. I have thanks for my many blessings - which are still a very many splendored thing, Spare a thought for all those less fortunate than you and your own troubles will seem quite insignificant. 

Talking to a young male friend of my daughters was a real eye-opener for me. He is a quadriplegic, confined to a wheelchair for the rest of his life. He has been that way since he was 17 years old. One day, I was moaning about my esophageal troubles, rambling on about popping indigestion tablets, my limited movement, the pain, the sleeplessness. And without knowing what he had done, he reminded me that when he had pain whether it be day or night, he had to wait for someone to give him his medication - or make him more comfortable. I can still do that for myself. How lucky I am. Of course I fear the fad that this disease will totally incapacitate me. I know that I would not be natural if I didn’t, but I’ve learned to switch to another gear when morbid thoughts enter my head. Mostly I succeed. What good are negative thoughts? 

A big thank you to my family, friends and all who support me. I’m sorry that on occasions I need to vent my anger and my frustrations. Oh you have heard me so many times on the same old subject. You visited me, brought me gifts. I used you, I’ve made you feel rotten and uncomfortable. I promise to shape up and stop acting like a spoiled pampered brat. Please stay with me - I really do need you! 

I have mentioned how important it is to find a good support group, and a good physician. It’s equally important to find the right surgeon. Mine performed some major miracles on my behalf. I am convinced that but for his dedication and surgery, I would not appear to you today looking so normal. I find it hard to believe now, but when I first entered his surgery 9 months ago he had never seen a SD patient before- let alone operate on one. He was so totally honest. Rough months were to follow - why had I allowed these surgeries to be performed Patching me up to allow me more function and movement had brought on a whole new set of problems, but it had been my decision and mine alone. Always be in total control and you will see the funny side of blaming someone else when things don’t go exactly as you planned. 

It was after these surgeries that I met Barbara Luckhurst, my therapist. I was in pain; I was angry. I was frustrated and full of the feeling Oh my God, what have they done. My first words to her were I hope you have seen SD before and know what you are doing. 

She never wavered, fortunately, and I soon realized that she was a dedicated professional, who in a few short months convinced me that therapy and more therapy was the only route to go and yes, she had worked extensively with SD patients, in other countries besides Canada. 

I had the opportunity to visit the Mayo Clinic in Rochester, Minnesota quite recently , and visited their luxurious physical therapy department. I was surprised and excited to find that they had never totally immersed a SD patient in a hot water tank before. They thought it was an excellent idea and one which they would now execute. 

Chronically ill patients should always remember that all doctors, surgeons, therapists, and nurses are part of a team working for you, the patient. How can you help them, to help you? Follow their instructions AT ALL TIMES. Yes, even when your body screams out to be left alone. 

Wear your splints; massage; keep appointments; do your exercises; take your medication; eat small nutritious meals, but never after 6 p.m.; prop up the head of the bed; take care of your hands and feet; keep warm at all times; get your proper rest; visit your doctor regularly; yes, ask questions about your care; avoid stressful situations; never overtax yourself; and do keep fighting. 

How else can we help ourselves? Be prepared to participate in various medical studies, write letters, lobby, distribute the leaflets and handbooks, read medical publications, journals, telephone a fellow sufferer, show them you care, help arrange a fun night. Yes, we are human beings, be aware that some people are frightened by our disease, some even fear catching it. . 

In conclusion, it’s my belief, that we the patients and our supporters, must dedicate ourselves to getting our message across. We must never miss the opportunity of being a teaching tool. Once seen I’m sure never forgotten. 

Try it, you will be surprised. People do want to know more, and once you have their interest, are very willing and eager to help. 

In belonging to the Edmonton chapter, one small but very important part of the network, you are helping to raise funds for much needed research. You are helping to locate and reach out to many other lonely sufferers, you are education. The 20^th century has seen so many medical breakthroughs in so many different fields. With determination WE WILL add SD to that list. 

Together and united we have it in our power to conquer this insidious and bizarre disease. 

United Scleroderma Foundation, Inc. 

September 1994