All my life I was sick in and out of hospitals and always with illness not fully understood. I had my tonsils out at age 2, a ruptured appendix at age 4 with drains put in and a month in the hospital. I had surgery on my bladder at age 7 or so and follow up treatments for 2 yrs. I had encephalitis and was bedridden for 2 months, unable to walk. It was always something and I just assumed this was normal and everybody got sick because I knew of nothing else.
I started to developed weird symptoms in my 20s, the first being Raynauds. I went to a doctor (general practitioner ) and was told I had Raynauds. Later my joints were giving me trouble - my fingers were like sausages, red hot and swollen, which I assumed was part of the Raynauds. I hate to admit this, but I was extremely ignorant about my health. I had episodes of diarrhea, choking, coughing, fatigue, shortness of breath, heel pain, and numerous complaints but very varying from day to day. I was turning dark brown. I enjoyed this because everyone thought I had been on vacation somewhere sunning. Then I lost my first child in early pregnancy and then I had to have answers as to why. I had high blood sugar and thyroid disease. I altered my diet. I just assumed all these changes in my body where in part because of the thyroid problems they discovered and the Raynauds.
Many years later I wound up in the emergency room again with severe headaches like NONE that any of you have probably experienced, and I was terrified because I thought "I have encephalitis again". I wanted to die rather then relive that horrible experience. After 4 spinal taps I was told I had meningitis. I lost 20 lbs in one week due to vomiting and diarrhea. I called for the priest because I didn't think I was going to make it but this Irish Gal did fight hard. At this time a disease specialist came to see me and said she suspected I had auto immune deficiency. Sad to say I ignored her advice because I just thought she was reaching at stars. She seemed very concerned about my having encephalitis and meningitis. I wasn't concerned it was just 2 illnesses and I wasn't seeing any more drs because that's all I saw all my life and they never said anything good to me !!! Oh how ignorant my thinking was then!
Then years later - now I'm in my mid 30's and I was having stomach pains for 8 yrs (OK OK I'm real stupid and stubborn). In the evening I would be up walking the halls with doubling over pain but it wasn't all the time until now. It became unbearable. I had again seen a GP to no avail even though I felt it was my gall bladder, but the doctors didn't. I then sought out the advice of a gastroenterologist who specializes in stomach and intestinal issues. I had my gall bladder removed. Two weeks later my husband was going on a business trip and I had a major set back. I was on the couch and couldn't breath. I was really scared because I knew he was going away that morning. So that night I asked him to take me to the hospital. He did and again, even though I was 2 weeks post op from the gall bladder being taken out, they couldn't figure out why I couldn't breath and told me to see the gastro surgeon in the morning. My hubby went on his trip and off I went by myself to the surgeon. The surgeon had both his parents with lupus and after he examined me he said that he thought I should see a rheumatologist because he could not figure out the breathing problem I was having. He didn't think it was a post op complication but thought I might have lupus. Here I was, alone in this guy's office and all I know is that my mother-in-law's best friend died of this thing called lupus. I wanted to vomit. I started crying profusely in this doctor's office and he was so kind and compassionate and spent an enormous amount of time with me until I pulled myself together. In the car I called my hubby and told him and he headed home. When he got home we hugged and cried together. We headed off to see the suggested rheumy. The rheumy wanted me to see a pulmunologist, first to rule out a clot in the lung which is a common complication 2 weeks post op. So off I go to the pulmunologist and back to the hospital for a lung cat scan. While my hubby and I are sitting in the waiting room for the results of this lung scan I got this silly fit of laughter - probably nervous laughter. I said to him "Dear Lord this is too funny - do I want a clot or lupus?" We both laughed and he said, "I don't know honey this is a rough one".
It was not a clot. Off to the rheumy. No diagnosis. At first he said lupus, and I went out and read everything I could get my hands on and discovered things had changed since my mother-in-law's friend died - treatments were better. Then 6 months later the rheumy said I had scleroderma so off I went reading. There was little information available on scleroderma so now I wanted lupus. Next visit he said I had this thing called mixed connective tissue disorder which was an overlap for me of mostly scleroderma symptoms with some lupus and rheumatoid arthritis. Now I was really angry. I said to him, "Why are you changing your mind all the time? Stop it because I'm tried of reading about all this horrible diseases."
At this time I decided they did not really know what I had. I was being offered drugs that in long term seemed more dangerous then my disease and I just felt before we went any further I had to become an expert in auto immune diseases and the treatments.
A dear friend of mine who ran a local support group was becoming sicker and sicker. I guess subconsciously I distanced myself from her because I felt pending doom and that she was not going to be with us much longer. I'm ashamed to admit I stopped going to the groups. In 6 months I received this weird call form her. She said she had found this therapy and she was doing great, even ice skating with the kids again. We conversed on the phone and I thought that she had been so desperate that anything would look good. I just thought of "snake oil" salespeople. Then I saw her and she handed me this book called " The New Arthritis Breakthrough" by Henry Scammell. My friend looked so incredible and terrific. I went home and read that book. I was furious - just down right furious that this safe benign therapy was not even offered to me instead of all these other harsh potentially toxic drugs. Why didn't I have the right to decide for myself what therapy I wanted to use? How could I decide if all the options were not given to me?
Off I went. I never expected to confront all the arguing and fighting trying to get this drug but I did, and today I've been on Minocin for about 6 yrs. I'm back running/jogging and enjoying my life. I'm NOT cured nor pain-free but I am much better. I'm almost in remission which took 2 yrs on this therapy to achieve. Most of my labs are normal and the ones that are not normal are greatly lowered. Many symptoms and complaints have subsided or greatly improved. So that is why I am such a supporter of this therapy. It is so foolish for doctors to start with the harsher drugs and then they don't work because they do nothing to halt the disease. Then and only then will they try this therapy if you ask for it. The medical world has it backwards. So I try and spread the word to as many as I can in the hope that it will help someone avoid those toxic drugs. Hope you enjoyed hearing about my journey. I'd be glad to correspond with any that have questions. I'm not a medical professional but I can offer some support through my experience.
Warm regards, Socjog.
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