Colleen

My name is Colleen Harrison and I want to share my story with you. I was stricken with scleroderma (widespread, diffuse scleroderma) twenty years ago while still in my thirties. The disease progressed very rapidly. I became rigid, deformed and disabled within a short period of time. The skin on my forearms was so hard that a needle would not penetrate it. I had almost no range of motion in my shoulders, neck, and arms. I had trouble opening my mouth, swollowing, and walking. My fingers curled into the palms of my hands. They were extremely sensitive to cold weather, air-conditioning and stress. My wrists were inflexible. My toes became deformed. My elbows and finger tips would ulcerate. My face was discolored and blotchy. The skin over my entire body was tender, hard and darkened. My knuckles would bleed and ulcerate.

I had no one to help me. At the onset of my disease, my husband divorced me. My two daughters went to live with me. They were young and afraid of my illness. I took care of myself and the two girls. In spite of my physical problems, I was fortunate enough to have money and to be fairly well-educated. I had a career I left before knowing my diagnosis and before realizing my problems were physical and not just due to my inability to handle my difficult marriage and job stress.

My greatest asset was my belief in a power far greater than myself. At times, I only prayed for "faith" because I didn't believe I had enough faith to go on suffering with the extraordinary pain, fatigue, immobility and ugliness.

I didn't have any internal organ damage at first. That came later. About seven years later. Let me now come to how I am today. To me this is what's most important in order to give you faith, hope and courage.

Today, I am quite beautiful. My facial skin has softened considerably over the past few years leaving me with a gorgeous, smooth, unwrinkled complexion. My pores are nice and tight. I have no blemishes, no discoloration except for two or three little red dots on my nose and one or two on the cheeks. My neck is far more mobile and flexible as well as unwrinkled. It is a bit darker than my face. The darkness covers my upper chest as well. I am able to walk as long as I wear thickly padded tennis shoes. I have discoloration on my knees, wrists, hands, elbows, and ankles. My skin is no longer painful to the touch nor does it "burn" and turn dark brown when I wear anything tight such as a bra or belt. I am free of any and all pain. I am far more flexible. I can swallow with little difficulty. I no longer suffer from acid reflux.

I have high blood pressure. For this, I take Capoten. I was having anxiety and obsessive thoughts about my past. This has been cured completely by taking 60 milligrams of Paxil daily. I requested the Paxil. My doctor prescribed the Capoten. Additionally, I asked for hormone replacement therapy, which I've been on for several years. I take vitamins, minerals and herbs, and I also take DHEA.

I still get tired. Sometimes I have more energy than other days. After I eat, I feel exhausted. If I use my hands too much, they begin to burn and ache. While my skin is far softer, it buckles a little (very little). I recently underwent hand surgery. My fingers were broken and fused into a straight position. I have no more mobility than before, but they look much better and I can take better care of them.

What I did for myself was take control of my life. I work full time because I have to. I rest frequently and avoid stress. I don't drink or smoke. I sleep at least eight hours at night. I exercise on a daily basis at home (any little bit helps even if all I can do is visualize myself exercising). I apply vitamins and moisturizers to my face and body. I also "brush" my body every day to help the blood circulation and to get rid of layers of dead skin. I read everything I can about what is necessary to do to be healthy and I do my best to follow those principles. I take a holistic approach. I work on my spirit, my mind, my emotions, and my body. I try to focus on the positive side of any event. I have learned to rid myself of angry thoughts about others. I have forgiven others and myself. I love myself very much and treat myself very well. I am as helpful to others as I deem appropriate without sacrificing myself.

I realize that any disease has its ups and downs. I realize that diseases can go into remission. I know there is no cure for scleroderma. I know that my current good health in spite of scleroderma cannot be attributed to any one thing. I also know that I can have scleroderma and still get more problems just from not following the principles for good health. I know that scleroderma can get worse by not living as healthy a life as possible.

Please have faith, love yourself and believe that your experience has its very positive side as well. I love you all. God bless you!

My daughters are both grown and live on their own. We communicate quite a bit now that we all have computers and email. Email me at Zenaceh@aol.com

Updated 9/2005 - I am now 60 years old. I have been dealing with wide spread, diffuse, Scleroderma for over 20 years. Aside from fatigue, I believe the next major problem I've had is my digestive system. Through research and some trial and error, I've managed to overcome some serious problems pertaining to my digestive system. As many people who are afflicted with Slceroderma know, the disease is unpredictable and each case is unique. Many of the problems we encounter with our digestive symptom are not unique to Scleroderma in that many people without the disease can have many of the same symptoms. These symptoms are bloating, distention, constipation, bouts of diarrhea, gas, cramping and pain. I have learned to help my digestive system by applying some good old common sense. I've healed myself of irritable bowel syndrome, GERD, Acid Reflux Disease and a multitude of other problems including cronic diarrhea applying good old common sense. That common sense, among many things, is to eat in moderation, control stress, get plenty of rest, exercise, have obtainable goals, and keep an optimistic attitude. Of course there are many more things to living a healthy life. I eat small portions of food. I try to eat raw fruits and vegetables every day. I eat low fat yogurt mixed with raw fruits. I also eat low fat, organic cheeses and low fat ice cream. I eat breads and pastas made from natural whole grains and sauces made of tomatoes, herbs and spices. I believe that eating small portions of foods rich in natural, organic nutrients are extremely beneficial to the digestive system. I also have fish and poultry. I remove the skin from the poultry. I avoid fried foods and take vitamin supplements. If possible, I prefer not to microwave my food. I also do some exercise at home every day. Usually ten to twenty minutes.

I believe prescription medications can be helpful but should only be used when and if nothing else works and only for a short period of time if possible. I believe that all prescription medications have adverse effects. Often, in order for the body to handle one prescribed drug, one or more must also be taken. Withdrawing from these drugs has consequences as well. Prescribed drugs may help a symptom or two but the drug can also cause other symptoms to occur. Most everyone I've met suffering from a disease or a symptom, wants a "quick fix". Let's face it, who doesn't. However, in my experience "quick fixes" are extremely rare. The best therapy as far as I am concerned is to remove yourself completely from your environment which may include certain toxic relationships, jobs, and living conditions and start your life all over again in a different place. Most of us cannot do that. What I don't believe is that there is a magic pill or a magic drug that can replace a sensible, healthy lifestyle.

One very important thing is to have a reason to go on living. Without that, it won't be easy to keep up the fight when things get rough. One must have the "will" to survive. Find a reason. When you do, it will truly help you overcome a lot of emotional pain and sorrow as well as all the physical havoc that accompanies any disease.