Learning to Live WITHOUT Arthritis !!
Maybe this is jumping the gun a bit. But I can actually see myself running in the future. This will be a long ways from where I've been. I don't really like to go back there, but for the benefit of others, this is my story..........
I was diagnosed with Rheumatoid Arthritis at the age of 24 years. There was no explanation of course, I was told it was early arthritis and 97% of all people get some form of arthritis at some point in their lives. I was also told that there was a wheelchair in the near future ("2 years perhaps"). "There are classes you can attend to learn to live with this disease" I was told. That was 1983.
I accepted this as my fate and I would do my best to follow the doctor's orders and exercise as much as possible to stay in shape. So I started the route of NSAIDS. It wasn't long before I realized that the disease was very aggressive. I was put on Gold shots (Myochrisin) weekly and had many cortisone injections in my knuckles of both hands. I became pregnant for the third time and was taken off the gold but entrophen was maintained. My husband and I were overjoyed that the disease goes into remission while pregnant and during breastfeeding. The doctor told me not to worry about taking entrophen while breastfeeding because my kidneys would strain out the medication before it reached the breastmilk. Again, I put the doctor's advise at forefront, and in 6 months my son had sunken eyes, no motor skills and never cried. People commented on how lucky I was to have a happy baby! I soon noticed that no one commented on how cute he was...how could they? My sister came from afar to visit and being a nurse advised me strongly to STOP the breastfeeding. I did, and still worry about the effects 13 years later. He seems healthy and happy. He is truly OK.
1984 - As soon as I quit breastfeeding, my disease hit me like a brick-wall. I remember lying in bed and I couldn't even move my eyes without extreme pain. I am not sure why I wasn't hospitalised, I don't remember much accept my parents moved in for a few days to help out. The rheumatologist I was sent to put me on gold treatments and I feel I went into remission for about 6 years (while on gold shots once per week).
I led a full life, walked 4 kms a day, attended school (upgrading). I was soccer coach, and Brownie leader and truly enjoying life. Then I was told I must quit taking the gold as it wasn't working for me anymore, that my body had become immune to its effects. Not to mention a change in my kidneys. This takes us to around 1992.
From there the rest of the medications were gone through level by level, with the pain getting worse and worse. Then I was introduced to prednisone. Mmmmmm - wonderful stuff, I can partake in life once more. I was told that I must control how much I take as high doses long term would be harmful to my future health. I decided that for me, quality of life was more important than the quantity of life. (What a mistake!) So it was 30mg per day for about 2 years. I was very difficult to live with; mean and angry all the time. I left my husband and moved to a small apartment with just one of our children. Prednisone became a real struggle to me. I had become another person, in looks and in character. I had gained 40 pounds and was miserable.
I completed a one year esthetics course during this time so I would have a certificate of at least one accomplishment in my life, outside the home. At the end of my course, I moved back in with my husband and had to lower my dose of prednisone. I had surgery to reconnect a broken tendon in my left hand.
1995 - We (the doc and I) decided to try Immuran...This made me violently sick to the stomach (it took 5 months to rule out the flu). Methotrexate was introduced but it didn't like my liver. My liver enzymes went through the roof and I was left with prednisone and Arthrotec (diclofenac and misoprostol to protect the tummy). The disease progressed violently and I soon spent a lot of time in bed. I couldn't control the pain and the rheumatologist put me on cortisone shots. These were injected into my hip once every 6 weeks. I menstruated for 3 months non-stop. I changed rheumatologists and was put back on methotrexate and over the next months just got progressively worse. My liver enzymes went up to 4 times normal and methotrexate was once again stopped. (Nov.1996) We'll try cyclosporine for a few months. Very expensive and experimental. My blood work was handled like it was glowing and I really didn't feel well at all. Not only were my joints sore to touch....I now had an upset stomach and uncontrollable diarrhea. I was treated (by the doc) like I was responsible in some other way (than the medication). I must not be taking the drugs as prescribed or your kids must be carrying viruses home to you from school. I finally lost all faith in my rheumy when I had a severe pain in my left chest...Like there was a needle poking a vital organ..I could not relax and only could take shallow breaths to avoid this stabbing pain. I was told that it was Friday evening and my doctor (rheumy) does not take calls on the weekends or after 5 pm during the week. They would x-ray me and that is all they could do. They sent me home to call his office Monday morning! (With that I discontinued the cyclosporine myself on Jan 4, 1997) It was this same time my wonderful husband hooked us up to the internet, my sister gave an address for antibiotic treatment, and I took over the care of my own destiny!
My rheumy would not listen to any evidence and took it very personally that I was telling him that he wasn't aware of things in his own profession. I felt I was handling this situation as delicately and diplomatically as possible. He told me to come back when I was willing to do things his way! I shook his hand and told him "It was nice to meet you". I went back to my GP, very upset with the medical profession, and told him I wouldn't leave his office until I had a prescription! He pacified me with a prescription for six months.
I have since changed my family doctor even though I was with him for 14 years. This was extremely hard for me, but I felt I had become a joke to that office. This was the same doctor who advised me that my son would NOT be effected by any meds during breastfeeding. My husband was extremely relieved by the change. At this point, I was in bed 23 out of 24 hours a day. I only got up when I had to and most times my husband would have to lift me up. Ahh but those days are gone!
MINOCIN (Feb.1997) - Within the first few doses of minocycline (generic
for the first month) I began to notice strange things. In the diary I kept
it reads like this....
"The very first night, during rest, I had the sensation of about 3 tensor bandages being removed from each of my knees. I could bend them a lot more than I could for the last year! The tendons in that area felt weak and loose. The second day I was not to have minocycline, as per Dr. Brown's protocol and the thick feeling around my knees was returning by that evening. The third day, I was to take 100mg at noon... once again the sensation of removal came again by 9pm. During sleep that night, I had the urge to stretch out fully, with arms overhead. (Now anyone with this disease knows that a person avoids this type of movement and resists it because of pain.) Upon doing this movement, I had the same sensation of tensor bandage removal, in my shoulders!! It had been so long since I had full range of motion in my shoulders, I couldn't come up with a clear time period. I just knew it was years! It was like fluid had been drained off of these areas. My knuckles in my hands soon followed this pattern, then my feet."
I wasn't sure to believe in this as it might have just been a placebo effect. I just soaked it up anyway, even if it was all in my head. Here it is just 11 short months later. During the treatment I went through a lot.....
I decided to obtain a wheelchair as I knew it would only be temporary. By June 1997 I was going out to places that I couldn't access before without the wheelchair. In August, I suffered from a bout of 'shingles' in my right ear. It affected my equilibrium, and so knocked me off balance and I had nausea bad. For three weeks I was laid up in bed, not able to take my supplements or keep any form of medication down. Soda crackers and gravol brought me out of this as well as 8 days of antiviral medication. That was in August and I still get dizzy travelling in a vehicle. I can now move about my kitchen for about an hour before resting. I can do this several times a day now. When there isn't too much snow I try to do laps around my deck with my walker. I will beat this thing!!
It has been a slow road, and it isn't over for me yet. I guess that the year I kept myself on a high dose of prednisone was detrimental to my knees. They are slowly repairing themselves (which I didn't know was possible before). So at this point (February 3, 1998) I no longer lie in bed all day and cry when I have to move. As a matter of fact the last time I cried were tears of joy at a babystep closer to my goal of health. These tears were shared with a wonderful support group developed by Chris Adlard, her son Steve, daughter Janene, and the supporting root...Ethel...I must also thank Dr. Mercola on whose wisdom in nutrition I depend greatly!! Dr. Chiu has also answered countless questions at no charge:-) I would like to mention all their names as each member is sooo important to me. Without these people, I am positive there would only been one alternative...jumping in the creek just looks cold and dirty to me now though, ha. I am left with severely deformed hands and my feet aren't too straight either but they are functional! I do wish I had heard about this therapy in the earlier days of my struggle with rheumatoid arthritis. And yet I wonder if I would have been open-minded or not. Hmmmm.
I do know I had a lot of people praying for me (mostly my mother's friends as I didn't have any left) prior to finding this treatment as I didn't have a lot of faith myself anymore. I can't help thinking that it was through prayer that I was able to make the connection to this group.
I no longer feel the pain from every movement or every touch from another human. I enjoy my family and my husband. I attend a swimming class for rheumatic patients in a heated pool 2 times a week. I am meeting new friends and soon I shall be calling on old friends. I don't think I'll jump back into work too fast as I say... I still have a ways to go on my road back! I will update when I can retire my wheelchair to a closet :-)
Update September 1998
What a summer! The last time I used the wheelchair (HARLEY) was July 15th!! I'm ecstatic!! I haven't been subscribed to the group for the summer as I was just too busy to sit here long! But I'm back because I have an obligation to let everyone know how I'm doing!
Absolutely FANTASTIC!! I'll never take mobility for granted again!! Let's see, I went to a family supper last night and didn't need to take my ..toilet lift...or my cushion to bring the level of a chair to my butt (ha)... and I even lost my cane a few times!! With being able to walk, I've dropped a few pounds, don't know how many but it is VERY visible!! I had a shower without my chair, but I was still afraid of falling so I'm keeping it for awhile yet!
I walked out of the bank the other day and actually pushed it open myself with ONE ARM OUTSTRETCHED.....After I realized what happened, I had to go back in and do it AGAIN !! LOL and giggling!! During the last 3 years my relationship with my husband had become patient and caregiver, so we are working on that! I walked through the park 2 days ago (with my cane) but it was GREAT!
What can I contribute it all too? ......Well, first and foremost, God, then Minocin, then Dr. Mercola's nutritional recommendations (still very important to me but the self discipline needs work, (giggle), next supplements (which I have cut in half to stretch them out) from Dr. Franco! I did have cortisone shots in April and in July, but I feel I may not need them again! And that's great news from someone who absolutely HATES needles!
So how is that so far? I was thinking of going back to work but I've a lot of catching up yet around the house ...3 years of pain can stop anyone from house cleaning...so look out mildew, here I come!!
Love to you all!!
Janine Osberg-RA for 15 years!! Going into my 18 month on antibiotics.
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