I was first diagnosed with RA in 1961. I was 5 years old. Finally my parents had a name to put to all my ailments. I was born in Dec, 1956 (2 months premature). Right from the start I was a fussy baby and cried often. My parents took me to doctor after doctor only to be told I was colicky, I would outgrow it, and to quit worrying. Their gut instincts told them it was more than colic, but they didn't know where else to turn. In 1959 (I was 3 years old) they knew it was more than just colic. I had never crawled, only scooted, and couldn't walk without hanging on to someone or something. A "brillant" (or so he thought...I will call him quack #1) doctor informed my parents I had "water on the knee". He proceeded to operate on my knee only to discover there was no water, sewed me back up, slapped a full leg brace on my leg and sent me home with crutches and no answers for my parents - only a child with a huge avoidable scar on her knee.
After I returned home I continued to have problems. Walking was difficult at best and I started to have neck pains. My neck was so painful I couldn't turn or move it and required several pillows to sleep sitting up. Finally in 1961 I was diagnosed correctly with RA. (All my test results are always negative for RA so I suppose this was the problem they encountered in trying to diagnose me). No doctor ever called it juvenile rheumatoid arthritis, just RA.
I was started on the "miracle" drug cortisone. Remember this was the early 1960s and they truly believed it was the "wonder" drug. I did get better at first. I gained weight, got the traditional "moon" face and got very hairy but it seemed to be worth it - I was better. In June 1962 (still on cortisone) I went to the University of Iowa City hospital to try and get my right knee to function. At this time I was still in a brace, limping, and on crutches. The knee was "locked" into a slight angled position. I was there for over a month - traction, therapy, manipulation while sedated, etc. After having no success they sent me home and I continued to take the cortisone and my parents continued to shuffle me from doctor to doctor with no solutions.
I found some relief for my neck with a chiropractor. At this time another sympton of the RA appeared - iritis, affecting the eyes. I would wake up and just see clouds. This was another battle trying to figure out what I had. After all I was just a kid - how serious could it be? Finally I found treatment and I still have to watch for flare-ups in my eyes, at which time drops are administered. Because of the damage during those early flare-ups I am now legally blind in my right eye. Fortunately my left eye can still be corrected with glasses to 20/20.
Also I had numerous problems with my teeth and continue to do so. As a kid I was always seeing some kind of a doctor. My poor mother, bless her. We all learned to deal with my RA. My parents were not wealthy and this put a tremendous financial toil on my entire family (I had 2 brothers and 1 sister at this time). My parents were even audited by the IRS because of the astronomical medical bills they were claiming. After I became an adult my mother talked to me about her feelings that she wasn't doing enough to try and find some help for me at this time. The hardship was truly on my parents. By this time the cortisone had changed my appearance. I was a short, fat, hairy child - not a pretty sight. I recall the insensitivity of people. When asked what was wrong with me I replied "I have RA" only to be told children don't get arthritis. I was stared, pointed at and giggled at. I was called names, teased, taunted, and just plain picked on. Thank God for my siblings who always stuck up for me and watched over me.
My life continued this way. I went to regular school and tried to be normal while we battled my RA. In July, 1969 I entered Shriners Hospital. I was 12 years old and the hospital was 300 miles from my home. I stayed for 6 months and the separation from my family which now had grown to 3 brothers and 3 sisters was the most painful thing I recall. They weaned me off the cortisone. The dose had increased over the years and I had been on it for over 8 years. I was put on a diet as I was 40 lbs overweight and put in traction to "loosen" the knee. I was bedridden for nearly 6 months and sent home with an experimental brace, crutches, and pain pills (I don't know which ones). Three months later in March, 1970 after being unsuccessful with the new brace and in tremendous pain again I was operated on for another experimental procedure. Ligaments and other things were cut to try and alleviate the pain. It was risky. If they cut too far I would have a collapsed knee joint. After a month I was sent home in a cast and crutches and told to return in 3 months.
Now the pain in my knee was gone. It didn't return again until after starting antibiotics, but only in manageable amounts. I was taking NO drugs of any kind now - only when my neck acted up (aspirin) but it also was better. After removing the cast in the summer of 1970 I learned they had cut too far. Again I was fitted for a full leg brace that I was told would be a permanent fixture for me. I was sent home very unhappy. Finally I was pain free and off the drugs. Finally my weight was near normal. I was so close to being normal - and now this ugly, hideous, horrible brace for life, no less.
I was 13 years old and I hated it. I was bound and determined to prove them wrong and walk without it. And I did. At first I would walk a little without it and I gradually built up until I was walking without it. My knee had become locked (where it remains today). At my yearly check-up at Shriners I carried my brace in. After examining me the doctor told me to put on my brace and walk for him. I told him I didn't use it anymore. He looked at my chart, scratched his head and said "That's impossible". My mother replied, "Tell her that". I got up and walked for him and he called in more doctors and they they all gawked, looked at my chart, shook their heads and checked me over. I was told it was medically impossible for me to walk without a brace. After much debate and examining it was determined that my knee had somehow fused itself together at the knee joint. That was my last visit there and I returned home to be a teenager.
Life was good. I had some pain but tolerable and no drugs. The RA was shifting and had moved to my ankles. I was fine if I avoided standing or walking any longer than half an hour without resting - I could do that. I got a job at a retail store, bought a car and had fun. Dating was something I wasn't comfortable with. The RA had robbed me of my self-esteem, self-worth, and self-confidence. My entire life up until that point had been filled with my inadequacies. I never felt good enough. This lack of self-confidence would cause me many problems to come.
In Spring, 1972 a weird thing happened. After many months of no problems and often forgetting about my RA I awoke immobilized with pain. I could not move, walk, eat, etc. I was carried to the bathroom. I stayed in bed all day, legs elevated (heat/ice) loaded with aspirin and full of pain. It was a Sunday and tomorrow mom was taking me back to the doctors. I cried myself to sleep. I awoke to my dad yelling, "Everyone up - it's a tornado!" We all jumped up and ran for cover. When it had passed I realized I had walked and the pain was completely gone. No one was hurt, but there was lots of building damage and animals hurt and missing (we lived on a farm). After that when bad weather was forecasted mom would watch and see how I was feeling to determine if we should go to the basement...lol. Up until a few months ago I could always predict the weather. I knew when storms were coming and how bad they would be. People often commented they thought that would be neat. It wasn't. Once the antibiotics kicked in my days of forecasting weather were gone.
In Oct, 1974 I met my husband to be. He was the first guy that paid me any attention and so we got married. So naive, young and stupid. In July, 1976 I gave birth to a beautiful, healthy baby girl. She was the joy of my life. My marriage was a mess but she was perfect. I settled in to being a new mom and then it hit, like a freight train. The RA was back and with a vengeance. I had never experienced so much pain in so many places in my life. It was awful. It was the winter of 1976/1977 and I was scared. I had an infant who depended on me and an unsupportive husband. Off to the doctor I went. He yelled at me for putting on extra weight due to the pregnancy and sent me home with a NSAIDS (don't recall which one). It didn't work and neither did the handful of others I tried.
It was at this time I discovered alcohol helped with the pain and allowed me a little sleep at night. My husband loved it. An alcoholic himself - he finally found a drinking partner. I didn't care, I just wanted the pain to go away. I became eligible for SS disability at this time.
My family doctor finally sent me to a rheumatologist (I'll call him quack #2). It was early 1977. On my first visit I was near tears the entire time. I was frustrated, in a lot of pain and exhausted. I asked him to please help me. By this time the RA was in my wrists, fingers, jaw, neck, ankles, and eyes. I couldn't walk and I couldn't use my hands. I was non-functioning. I cried through the days as I struggled to care for my daughter and I drank the nights away. The Rheumy advised me to buy a wheel chair (I would eventually need one anyway, he said). I needed to learn to accept this fate of mine and to quit fighting to be normal. He told me I would continually get worse, but there were ways to keep me comfortable and to realize I wouldn't grow old. I had just turned 21 years old. I left in tears with my RX for prednisone.
Immediately after takingthe Prednisone I felt better. I was still in pretty bad shape but at least I didn't cry all day. The habit of drinking (along with smoking cigarettes) stayed, and now the pounds poured on. I didn't care (how long did I have to live anyway?) After months on the prednisone and hating my visits with the Rheumy my regular pharmacist refused to refill my prescription. He tried to explain the dangers - the high dose I was on, the length of time I'd been taking them, and the fact that he thought my doctor was incompetent. I didn't want to listen. Take my drugs away?...NEVER.
I began having my RX filled at a new pharmacy. Again, after a few months this pharmacy also explained their concerns to me. (Please note: both pharmacies phoned my Rheumy several times to verify the RX and voice their concerns). When I questioned my Rheumy he stated that he was the doctor and he knew what he was doing. I began to have my doubts. I decided to wean myself off with the help and knowledge of the pharmacist. I had been on the prednisone for over a year. I didn't tell my Rheumy what I was doing. After 3 months I had tapered way down. Ironically at about this time the Rheumy stated I need to stop taking the Prednisone and gave me instructions to do it in 2 weeks (not nearly enough time) and wrote me a RX for Naprosyn. I started on the Naprosyn and quit the prednisone in March, 1978. I started to feel better (except for the extra weight - all 200 lbs, at 5'2 - that's a lot).
In July, 1978 I became pregnant for the second time (against doctor's orders). I wanted another child desperately. I had always wanted a big family and decided this was the right time. When I told my Rheumy he became very angry, yelled that he could no longer help me because I couldn't take any drugs while pregnant, and shoved me out of his office. That was the last time I saw him (thank God). I returned to my family doctor and stopped taking the Naprosyn. While pregnant I felt good. My doctor explained that when you're pregnant your body produces a natural, safe cortisone - thus no pain. In March, 1979 to my total surprise I delivered healthy, identical twin boys. My delivery was easy and uncomplicated, just like with my daughter. Immediately my family doctor put me back on Naprosyn to avoid the RA problems I had after my first delivery. It worked and I didn't have any major flare-ups.
A couple of months later, other problems surfaced. I got really sick with strep throat and was hospitalized. A few months later (Sept, 1979) I had to have my gall bladder removed. It had been completely destroyed by all the drugs I had consumed for my RA. When I asked what would filter the drugs through my system now, I was told "your kidneys and liver - don't worry about it - your body will adjust". My life continued with me taking Naprosyn, battling my weight (it was 230 lbs now), suffering from depression (I didn't know that depression was another curse that came along with the RA), drinking, smoking, and living a very sedentary pain-filled life.
The only bright spot was my kids. I was completly devoted to them. In 1985 after my yearly exam to renew my birth control pills (my husband refused to have himself fixed and I definitely could not give birth to any more children) my doctor became very concerned. He refused to continue prescribing the pill. I was a high risk and if I continued the way I was going I would be dead by the time I was 35. I was a heavy drinker, 3 pack a day smoker and at 5'2 weighed 262 lbs, extremely depressed, and losing the war on my RA. I'm sure my unhappiness in my marriage contributed to the decline of my health. He advised me to have a gastric by-pass. It would get the weight off and hopefully help the RA and I would have to work on the rest.
In Jan, 1986 I had the by-pass. I decided it was all or nothing and quit drinking and smoking. I realized I wanted to live and needed to quit killing myself slowly. The weight came off (120 lbs). I never took another puff off a cigarette and I stopped drinking for a year - that demon wasn't mastered yet. I switched to Clinoril, because the Naprosyn had become ineffective. As my weight came off the RA improved. I was less depressed, felt better about myself, and was taking care of me. But my marriage was a shambles and my husband became more abusive. He had always been abusive but when he felt he was losing his control over me it got worse. I gradually went back to drinking to appease my husband. I soon realized I was backslidding. I was drinking again, gaining weight, and had lots of stress. I realized my husband's influence over me was a destructive force in my life.
In Oct, 1990 I left him. I took my 3 kids and quit my marriage of 15 years. I quit drinking, but replaced the alcohol with over the counter sleep aids/pain pills. My RA flared at this stressful time and my doctor doubled my dose of Clinoril. It helped for a while. I could function during the day but the pain at night continued to get worse. In the Summer, 1996 I started Feldene with no relief. My doctor ran blood work at this time (as he did every year). I asked him what he was checking. He explained that my liver and kidneys were doing all the work of filtering the drugs. He said the tests showed them to be a little stressed but nothing to worry about. I went home and started my own research and discovered I was very lucky these organs were still functioning after all the drug use. I was a perfect candidate for liver and/or kidney failure.
I started looking at alternative treatments and found "The Road Back". It was like coming home. The book was me, everything made sense. I took the book to my family doctor and demanded the treatment. He had heard about it. Boy, was I angry - all these years of me struggling with my RA, him treating me and he never once mentioned this option to me. He explained that maybe people were just going into remission while on the treatment and he didn't believe in it. I blew up and said, "You mean to tell me if I get better with this treatment you're going to tell me I went into remission? Why won't you at least try? What if it works, imagine how many people you could help". He told me to calm down and he would write me a RX for an antibotic (Sumycin) until I could get in to see Dr. Sinnott. He told me to go ahead and try it since I was so adamant about doing it. He wanted me to go to Dr. Sinnott because he wanted nothing to do with it at this time. I also switched to Lodine at this time because Feldene wasn't working. That was Oct, 1996 and I went home and immediately made an appointment with Dr. Sinnott for Dec. 10, 1996.
D-day arrived and I drove the 50 miles to his office. I was very impressed with Dr. Sinnott and liked him immediately. He is a very caring, gentle, kind person. He started me on intravenous injections (900 mg clindamycin, twice a day for 5 days) that day. He feels that is the best way to begin with tough cases. There's a metallic taste with the IVs and I became extremly tired, fatigued, and had just no energy especially by the 5th day. Part of it could have been from the travelling back and forth - 1000 miles in 5 days). Also I couldn't think clearly or concentrate. (I later learned this is called 'brain fog'). He switched me to Relafen (500 mg. twice a day) and minocycline (100 mg. twice a day on Monday Wednesday and Fridays). He sent me home and said to call and check in regularly on how I was doing.
I went downhill (more like over a cliff) after that. In Jan, 1997 I wrote in my journal, "It seems lately that I don't have any 'good' days - maybe a few hours or 1/2 day at best. I feel as if I'm moving in slow motion and my feet are made of lead. I have no energy and don't feel like doing anything. I don't care about anything much except resting...not sleeping...just resting. I truly am tired of feeling tired all the time".
Not wanting to complain and to be patient I did not let Dr. Sinnott know the amount of difficulty I was having. After finally letting him know my problems he explained that there were different drugs available to me to help with the pain. I refused - my main objective for this treatment was to get off the drugs, not start more. He wanted me to come in and do another IV treatment. Right before my second IV treatment I started acupunture (trying to find a drug-less way to help with the pain). I explained to my acupunture doctor the treatment I was doing for my RA. He took my copy of "The Road Back" and read it. He wanted to work with me and started me on vitamins, herbs (nutrabalance) and acupunture. At this time I was taking Relafen (500mg twice a day), minocycline (100 mg M/W/F) and handfuls of asprin, Aleve, Tylenol, Excedren, night time sleep aids and any over the counter product for pain I could find. Every rub, gel and cream available. I tried heat, ice and "wraps'. I even tried jalapeno juice as a rub.
Nothing was working. It was Sept/1997 and I was in tremendous amount of pain, was getting NO sleep and felt hopeless. A few weeks later and at about the same time as the second IV treatment I started to get better. I had finally turned the corner. It had been almost 11 months since starting the antibiotics. I asked Dr. Sinnott about what he thought was working and he said, "maybe a combination of it all. Whatever works, stick to it. The main thing is that you're feeling better". He also wanted me to up the IV treatments to every 6 months. My understanding from Dr. Sinnott is to fight the disease aggressivly with the IV's when you are having problems. Maybe that's when you have it on the run.
In Jan,1998 I wrote in my journal, "Feeling much better, actually great...a lot less pain, can sleep at nights, feel really, really, good. I could live like this forever with no problem. Now if we can just figure out how to pay for it all...ha ha ha." In Feb, 1998 I painted my living room/dining room. In March, 1998 I did 2 bedrooms and the hall. In April, 1998 I found this support group and am learning sooooo much more. I did another IV treatment at the end of April, 1998 (this time in my own home). I no longer take handfuls of aspirin, NO over-the-counter pain relief pills at all. I now take handfuls of vitamins, herbs, and have cut my Relafen by 50% (500 mg once daily). I try to drink lots of water and eat better. I exercise and have lost 10 lbs since last fall (size 12). I continue the a cupunture (monthly), the minocycline (M/W/F) and hope to be completely off the Relafen by Christmas.
I will always have the permanently deformed joints (fingers, hands, wrists, knee and ankles), the bad eyesight and the scars. My immune system has done much damage to itself these last 41 years. But for the first time in my life I feel truly blessed. I can finally sleep all night, I can take walks and enjoy it without hurting with every step. I can do everyday things without crying out in pain at every bump or step. People don't just ask me how I'm feeling. They ask about my kids, my husband, my latest hobby/project. For the first time in my life I feel good, not every day but many days. The pain is still there but I can put it to the back of my mind and enjoy life - it doesn't consume me like before. This disease takes on a life of it's own and you lose yours.
I'm taking my life back. I have a wonderful, supportive husband of 5 years who is willing to work his butt off to pay for all the treatments and supplements (insurance has paid very little of the AP or acupunture and none of the supplements). He was the first one to say "go for it Cindi" and is behind me 100%. We have a 4 year old daughter and my other children are 21 (daughter) and the twins 19 (sons)...and early next year I will become a Grandma. Life is good and I truly owe it all to the antibiotics. My only wish is that I could have found it sooner.
This saying has got me through alot of rough spots...it's my favorite: "It's not what life gives you to handle....it's how you handle what life gives you".
Update March, 2001
Time has a way of 'flying' by when you have so much to live for...it's hard for me to remember that pain and that life. I now am 3 years older (44) and may I add much wiser. I continue to follow the antibiotic treatment, the same Mon, Wed, Fri, routine. I also continue the supplements. I take NO prescription drugs of any kind not since fall of 1999. NOTHING. That in itself is a miracle. No more IV treatments since fall of 1998. I continue the accupuncture but only every 3 months for a 'maintenance' treatment. I still try to drink lots of water; some days better than others and the exercise comes naturally. I love to walk, garden, chase after my granddaughter (it was a girl...Autumn Joy), bowl, go on field trips with my daughter's class, etc. etc. etc. I am proud to say I'm still in my size 12 jeans. I sleep great every night and wake up ready to start another day. Life is good. I don't know where I would be if I hadn't found this treatment...honestly I don't want to think about it. I know I would not be in this special place in my life where it is all worth it now. God Bless to all and may you all be in your own 'special' place soon.
You can reach me at firstname.lastname@example.org