SANDRA, systemic diffuse scleroderma

EXCERPTS FROM MY JOURNAL

1992 - I have been diagnosed with morphea scleroderma. I am told not to worry that this is merely a skin condition. My primary symptoms beside the hardened skin are swelling and pain in my stomach and not being able to void for days at a time. Antibiotics always bring me out of this, however, I now have a double set of clothes - my swollen day clothes and my normal day clothes. I am always so cold. I have gone to wearing long sleeves and cotton sweaters in summer. My hands and feet freeze all the time and my feet turn blue. I have seen a specialist here who cannot figure out what is wrong. I am so very tired and wonder if this is what aging must feel like but my Mother and Grandmother have had such energy. I have been diagnosed with hypothyroidism and I have gone from low blood pressure to high.

1993 - I saw a specialist in Houston for full body MRI and tests. He says my disease is all over my body, including the brain and has given me three to five years' survival time. New diagnosis is systemic diffuse scleroderma. I am not sure he knows what he is talking about. I feel too good to be dying even though I am aware that I am sick. I am living with chronic sinus infections, bladder and kidney inflammation and bronchitis. I cannot get rid of this cough. I am so tired I must make an effort to do anything.

1998 - Lots of stress this year due to a sick daughter and the death of a close friend. Disease has broken wide open and I know I am in trouble. It finally has my full attention. Doctors here did not know what to do with me so I have just kept getting worse.

Nov. 98 - I got lost today in an elevator in a doctors' building. I could not figure out where I was supposed to get off. I finally had to ask a man to help me. Yesterday, I had to pull over from driving as I suddenly did not know where I was going. This is a nightmare like Hitchcock would have written. I have had to drop out of my yoga class as I no longer have the strength to do this and I am in too much pain.

Jan. 99 - I can no longer wear heels due to pain so am now wearing flat shoes to office. My feet feel like I am walking on marbles and each step is painful. I now shuffle like a 90 year old and must tell each foot to take a step. Feet feel as though they are bound in cement. During the day, my legs feel like my socks, hose and shoes are too tight. I cannot sleep. Leg aches at night like an adolescent's growing pains. I think I have tennis elbow - but I don't play tennis and it is not always the same elbow.

Feb. 99 - Left knee sporadically giving me fits. Eyesight blurry.

June 99 - I am having difficulty with my evening meal because of indigestion and burning when I lie down. Am eating Tums for relief. I no longer look like myself. I have thickening skin on my cheeks and forehead. My hands sometimes go numb. I wake up with heart irregularity - it feels like it is racing to be released from my chest and I cannot catch my breath.

Sept. 99 - I am so very tired. My husband thinks I no longer want to work for him in the office as I am missing so much work now. I cannot find enough energy to do it all.

Oct. 99 - I have cut back my hours and have learned to leave things undone. Constant sinus infections and bronchitis. Lungs hurt. My hands hurt badly now. I am always cold. My hands do not turn purple but my feet do. I depend upon my husband to keep my feet warm at night and sleep under two comforters and with a heating pad. Such chills that my teeth chatter. I no longer can always get up the stairs, sometimes have to have help. So very, very tired. Big episode of cystitis and swelling. Back is breaking in to. My friends have loaned me their 'big' clothes. Pain is down my arms. Cannot sleep for arm pain and back pain. Eyes hurt and vision now very blurry. I no longer can wear my wedding rings. Pain in left hip, then right knee, then left hip - it keeps moving. Chest feels so tight. I cannot clear my throat of phlegm. Bought special soft shoes as I cannot wear plain flats. Constant cough. Terrible arm aches.

Nov. 99 - I have told Bob I think I am dying now. I have decided to fight this one last time. Nobody here does the antibiotic protocol. Here scleroderma is a closet disease although I know two women in Billings who are so very ill. I know they will not make it. I have told him I am going to see a Dr. John Sinnott, whom I read about in "The New Arthritis Breakthrough" by Dr. Thomas McPherson Brown and Henry Scammell. I am filled with fear but determined to make the trip. My doctor here has now fired me as I refused his drugs. He says he cannot save me but wants to keep me comfortable to the end. My husband does not understand but has accepted my decision to make this trip. I think he is in denial because I have always been a strong person and he does not understand this change in me. This decision to make the trip has cost the family dearly emotionally. Two sons are angry all the time at me and one son and two daughters are terrified. I can feel the fear in this household and it is taking its toll on our relationships. I can understand this as I have gone from cooking large meals and being super Mom to not cooking and just staying in bed when I am not dragging off to work. My oldest daughter and my elderly Mother will go with me on this trip for support and Bob will stay home to keep the family going. I think he is too afraid to go with me.

Dec. 5, 99 - I saw Dr. Sinnott today and have started the IVs.

Dec. 6, 99 - Something is different. I woke up this morning to warm hands. How can a change like that happen so quickly? This is a positive sign, I think.

Dec. 8, 99 - During my absence, my husband has been on the Internet and read about scleroderma and then researched the antibiotic protocol. He had to do this in his own time and is now telling people what I have and what I am doing about it. Sometime during my trip, we have begun our journey in tandem again.

Jan. 2000 - my first herxheimer. The Grandmother of Sinus Infections. I hurt all over even more than before. I have a rash which travels all over my body back and forth like a circus of fleas. Dr. Sinnott says this is a good thing - the toxins are making their way up through the skin. I sleep all the time it seems. I have such brain fog that I cannot add or subtract simple math and I am the office bookkeeper. I cannot do my reports or work but Bob says not to worry, that I will come out of this. He is really my partner in this.

April 2000 - the brain fog has finally lifted and I can add and subtract again. We will have a lot of tax penalties at work but Bob says not to worry, so I don't.

June 2000 - back for second round of antibiotics with Dr. Sinnott. The wonderful news is that we have moved the mountain. Of three mycoplasms, I now have only two left to fight. Hands and feet continue to be warmer. I have shed the terrible fear which I wore like skin.

July 2000 - herxheimer - the most awful kidney and bladder inflammation. I am back in my 'big' clothes for the first time since beginning the antibiotic protocol. I am assured that the antibiotics are working. My legs no longer feel bound and my arms do not ache or grow numb as before. I do not think this inflammation is ever going to go away. Dr. Sinnott has upped my IVs to five day treatments every three months from every six and the one IV now every two weeks instead of once a month. He says he wants to keep ahead of the disease. He is my security blanket. I know with him I will get well.

Nov. 2000 - another set of five day IVs and very little herxheimer.

Dec. 2000 - I continue to make progress. No more problems with the bladder, kidney or lungs. While sometimes slow, I know I can always get up the stairs. Sometimes I can even almost run up them. I have very few shuffling days. Am working long hours right now and the strangest thing has slowly happened. My eyesight is very, very clear. I look like myself again. There is still some thickening on my cheeks and forehead but it is not as bad as it was. The dark hard place on my back has grown lighter. My right hand sometimes wants to curl and it still aches but nothing unbearable. I can type just fine. I continue to be a little slow getting up out of a chair and taking the first steps but after those, I am fine. I am back in my low heels at the office. I never thought that would happen. Only occasionally do I have a bad foot day now. I continue to be careful with diet (being purposefully disobedient on occasions) and use my supplements and essential oils without fail. I am doing yoga again at home and getting better at it daily. The best news is that I am back in my wedding rings. Although the fatigue remains, I have my life back and have no doubt that I will continue to progress. Dr. Sinnott tells me that the key is patience - that this works. Already, I am living proof. When I sat down and typed out my journal, I had forgotten so many of these symptoms. They are like a bad dream. Something tells me that I will live to be a thorn in my children's side in my old age and I celebrate that. I have learned to let go of so many unimportant things - like perfect kids and perfect house. I would rather be spending my time with my husband, children and friends than always cleaning. I am often on the Internet with my support family. They have been my lifeline and continue to hold a firm place in my heart. So much energy and information here. I take responsibility for my health and wellness and now participate fully in all its aspects. I will never again leave any decision up to a doctor but will be a partner in this journey or seek out another doctor. Reading this journal, I know that I would not be here were it not for the antibiotic protocol. This disease is an angry, unforgiving one but with the antibiotic protocol, proper diet and supplements, it can be tamed back into submission. I will be honored to answer any questions. So many wonderful people have helped me to this place and it is my wish that wellness be within your grasp so that you can reach back and pull another person along with us.

Sandra Fain 406-245-4356

You can reach me at slfain@earthlink.net


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