Scleroderma

My Fight And Recovery From Scleroderma In 18 months on A/P I am Dolores P. Rosner and this is my story. May 13th, 2007 – Happy Mother’s Day. I was diagnosed with S/D in October 2005 after spending many years in and out of hospitals, and seeing many doctors. I knew I was sick but no one could find the cause and when I had exhausted all avenues, I was labeled a hypochondriac and told to seek a mental health specialist. My troubles actually began in 1986 when I became so exhausted that a trip from bed to bathroom was an ordeal. I ran fevers up to 103 degrees F. for about a year. My liver became enlarged and my urine was dark brown. I was then living on the Big Island of Hawaii and couldn’t find any decent medical care. At the clinic, one doctor whom I had never seen before, walked into the room with my chart in hand, looked at me and said,” Well, I hope you’ve quit drinking by now. I was flabbergasted!” The one thing I have never done in my life is drink. A sip of champagne on New Year’s Eve is the extent of my drinking. My husband & I knew then that it was time to leave Paradise and get back to the Mainland to seek further help. My husband connected with his old job in Las Vegas and I found a wonderful doc who found that I was positive for the Epstein Barr Virus and Cytomegalo Virus. He put me on an antiviral drug named Acyclovir for about one month and I began to feel better. But it took another 8 years for my liver to go back to normal. In the meantime, it left me with swollen wrists and ankles which would ache periodically. I went to several doctors. Xrays revealed nothing, so I just lived with them and used wrist supports. Although I felt better, I never did fully recover and had setbacks from time to time and the symptoms were piling on. First, I got diabetes and disorientation. At times, I actually had to sit right where I stood as I could literally not take another step. In 1991, my husband had two strokes, he suffered a torn pancreas during a botched surgery and they had to amputate a part of his foot due to a blood clot which stopped the blood flow. They did not expect him to live. The trauma of losing him was too much for me and I started having heart arrythmia’s. My husband recovered, but I continued to get worse. I subsequently had 4 heart surgeries within the next 6 years and was put on statins for cholesterol, blood pressure medicines & two kinds of diabetes medicine. My entire body began aching. Still tests revealed nothing, so the doctors decided I was a mental case and gave up on me. Then a neurologist found that I had syringomyelia. That’s an incurable disease where the spinal chord develops holes and the holes fill with fluid. I was told I would be paralyzed soon and spend the rest of my life in a wheelchair. One day, while visiting a cemetery, I read on a tombstone, “See, I told you I was sick!” That hit home with me and I told my husband to please put that on my tombstone. I could feel that person’s pain because I was going through the same frustration. I am a retired nurse and knew there was something really wrong with me. Finally, in January of 2005, while we were helping my mom move into her new apartment in Florida, I broke down crying in the middle of the night, The pain was so severe that I could not turn over in bed and I was exhausted again. I noticed that I was losing weight and my husband said I looked like I had cancer. So, we went to the hospital where they diagnosed me with pulmonary fibrosis. They discharged me and I spent the next 7 months in bed losing weight, throwing up, diarrhea and every muscle and joint in my body aching. It hurt when anyone would touch me, even lightly. My skin across my chest was very tight and small white pebbles were popping through my skin. I was on a constant nebulizer. So, we managed to get me to NYC where I went to NYU hospital for further studies. By this time, all family and friends were sure that I had cancer. I looked so horrible. My hair was dry and brittle and I sat like a limp rag and couldn’t keep down any food. By October 2005, it was determined that I had Systemic Scleroderma on all of my internal organs when the urologist had to remove sclerotic tissue from my bladder because of profuse bleeding. The pulmonologist basically told me I was terminal and that there was nothing they could do except treat the symptoms and sent me home to die. A group of specialists got together amongst themselves re: the drugs they would put me on. I heard methotrexate, prednisone, thalidomide, cytoxin. My nursing ears perked up and I knew these were toxic cocktails. You see, my first cousin, died at the age of 16 from Lupus and it was the drugs that killed him. Plus they talked about me morbidly while I was still in the room, in the third person, like I was not there. I didn’t like being excluded re: my medical care. So, when they approached us with their plan, I turned to my husband and then said to them. We are going home to discuss this and when we make up our minds, we will get back in touch with you. That week, there happened to be an ad on the computer from the Scleroderma Foundation needing volunteers for a Black Tie Gala Affair they were having at a posh NYC hotel. I immediately called them and volunteered our services. I wanted to know more about Scleroderma. That day my eyes were opened to the severity of the disease. While most of my disease was internal, I met and spoke with so many people who were on oxygen and in wheelchairs. Most of them were deformed and their faces looked strange. I went home so depressed and decided to go into isolation at our mobile home in Florida. So, I left my husband home alone and took the train. I locked myself in the house and slept when I was tired, ate when I was hungry, but basically was doing research on the computer daily. Finally, I sent out a desperate e-mail on the Scleroderma Foundation site asking for help. Lynne G. answered my e-mail. She told me about the Roadback.org. site and about A/P. She introduced me to the books written by Henry Scammell and Dr. Brown. She told me to ask Richie for a list of A/P doctors in my area. I thought that my disease was so advanced and wondered whether I was already too late to do anything about it. But then the doctors words resonated in my ear and I decided that since I had nothing to lose, I would do it. So, I took the train back to NYC and visited Dr. T. in Boston. I started on 200 mg of Minocin in January of 2006. Little by little, I began feeling better and Lynne G. kept coaxing me when I felt I wasn’t making enough progress. I sent away for the books and read about the micoplasmas. I took some iron supplements and my anemia disappeared as did the Raynaud’s I had developed. The chest tightness began to smooth out and the white pebbles began to recede. My hair started growing in thick and long, as did my nails. I gained weight, stopped the diarrhea and drank protein drinks. My energy began to return and I started looking normal again. My fingers which had started to curl into a “C” shape when put together were now straight. Even the puffiness of my wrists disappeared and my ankle edema went down. I heard about herxing, but if I did, I didn’t know it because nothing could be worse than what I had already been through. At the 6th. month on Minocin I posted my update and received congratulations from the group. I also went to see the group of doc’s who had offered me the toxic medicines and they said that Minocin should only work for about 6 months and they expected me to come back when it stopped working. Well, Minocin did keep on working and at the 12 month level, I again posted and made my appointment with the same group of doc’s. This time they were surprised to see me and started to take me seriously. I fired all but my pulmonologist who said she had never seen anything like it and I heard her tell a colleague about me saying, I don’t know what she is doing, but I am not changing a thing. All of her pulmonary test are improving and she looks wonderful. I see Dr. T. every 6 months and he just smiles at my progress and gives me a new script. When the insurance company sent me a letter saying that Minocin was not on their formulary, Dr. T faxed them a letter stating this was the only drug I could take to remain alive. They quickly reversed their ruling and I continue getting my Minocin to this day. Well, I just had my 18 month checkup with a group of docs I put together, who are now rooting for me and giving Minocin the credit. I no longer have pulmonary fibrosis, my heart is beating just fine. The Rheumatologist can find no trace of Scleroderma, but she says, “Minocin” doesn’t work on everybody. So, I asked what she attributes my recovery to and she said it was my attitude and determination. Well, I’ll buy that too. Realizing that I needed to boost my immune system rather than suppress it, I made a few changes in my life. I removed all toxic substances from my cabinet including hair dyes, makeup, sprays, etc. I bought a water dispenser and drink only purified water. I played around with my diet and now eat more vegetables, fruit, nuts, seeds and deep cold water fish. I eat beef once a week from cows that are free roaming and not injected with hormones and the same with chicken and their eggs. And I eliminated most dairy products as I am lactose intolerant. I’m lucky they opened a “Whole Foods Store” 4 blocks from my house and they deliver. I am also very fortunate for the support system I have. My husband supported me all the way and got involved with every aspect of Scleroderma. My daughter, who had been previously on drugs, stopped and enrolled at U.S.V.I.and is now in her second year in the nursing program and maintaining a 4.0 average. She wants me to get well and calls me every day. My getting sick woke her up and changed her life. For that alone, it was worth the agony I went through. My husband cried tears of joy when they said I was in remission. It was the best news I could give my mother and daughter for Mother’s Day. My friends have been wonderful. They came and stayed with me each time I was hospitalized while going through my ordeal. For birthday gifts, they gave me gift certificates from “Whole Foods,” so I could afford to shop there. And, of course, I have made lasting life long friends that I have met on the Roadback.org site. My husband and I went to Montreal to visit Lynne G. She is my angel. She and her husband greeted us with open arms and so much love. We work together constantly helping the newbies as we call those who were in my shoes just a short 18 months ago. We have started a club and invite the newbies to ask us anything and our group of ladies will answer all e-mails. We refer them to the RBF and tell them about the books. We give hope and encouragement and are delighted when they go on antibiotics and cheer them all the way. I repeat my story so many times because miracles do happen as it did to me. I am forever grateful that I have been given a second chance at life and found a mission. Mike, my husband and I are volunteers at the local chapter of the Scleroderma Foundation and I have been asked to be a guest speaker. I was thrilled to get up and talk about A/P. I came armed with information that I handed out and told them all to go to “The Roadback.org site.” I spent this past winter visiting my daughter in St. Croix during her school break and trying to establish a Roadback.org foundation in Puerto Rico. I was not successful because I could not find a place to live that I could afford and when I did find a place, it was on the Island of Culebra where there was no telephone or computer access I could hook in to. During my last week there, I connected with a second cousin who is Vice President of the First Bank in San Juan and another cousin who is the judge’s assistant at the Supreme Court. I spoke with both of them just before I flew back and they promised me that if I wanted to do this next year they will help me find a suitable place to live and the law firm will do any legal paperwork I may need. I never connected with Pedro Ortiz because I could not connect my laptop with the wireless card while in Culebra. I am also a published writer and poet. While visiting my friends and mother in Florida, I wrote a poem and put it to music which I composed. I dedicated it to all the people we have lost through autoimmune diseases and to all our young people getting killed in wars all over the world for the sake of power and greed. I know our planet needs healing, Funerals, dedications and memorials are very difficult and I put into the lyrics what we think when we are at a loss for words. A pastor friend of mine heard the song and asked if he could use it for his funerals and memorial services. He said, he had 6 funerals last year and could not find appropriate music. That led to a producer who got a copy of the song. He has his own recording studio, He is putting together a band and singers and making a promo C/D which he promised to send to me when it is finished. When people hear this song, they are moved, some to tears. It is about loss and love and healing and I’ve asked my husband to play it at my funeral when my time comes. I turned 70 years old last August and have more energy than I had twenty years ago. My Rheumatologist says that what I experienced in 1986 was Chronic Fatigue Syndrome and it is the only case we know of that fits the “Infectious Theory” which led to the diagnosis of Scleroderma so many years later. I am now preparing to go on the Marshall Plan. My doctor asks why. The answer is that remission could be temporary and I want to go for the cure. I have already made preparations with my Primary doctor who will start the Plan in September when the sun’s rays are lower. She will also order the preliminary blood work and speak with Dr. TM for direction. She knows he is not an M.D. but a scientist who has cured himself of Sarcoidosis. I have read over the Plan and want to get to the final stage where the mop up begins. I want the cure! I’m shooting for the stars and I believe in miracles. I am living one right now. Everything that happened was not accidental. It was all meant to be for a purpose. I see so much good coming from this and I am excited about what the future holds. Talents are gifts meant to be used for the betterment of mankind and I am ready to use the gifts I have been given for that purpose. I feel so joyful that I have been fortunate enough to be surrounded by so much love from family, friends and strangers I met in my journey to wellness. Thank you RBF for being there. I am forever grateful. Dolores P. Rosner. S/D and R/A diagnosed 2005 Thank you for your interest in my story.