My Story - Part 3

After I overcame the initial onset of JRA and went into remission, I stayed fairly healthy for a number of years. I had a minor flare up when I was in the 5th grade and another one when I was in the 10th grade. We treated both of those with clay poultices, proper diet and minor anti inflammatory medication.
My worst flare up started when I graduated from college. I'm not exactly sure why it happened, but I have a theory about the factors that contributed to the flare up (which hasn't really stopped). I can contribute it to the chronic stress. First, I graduated from college and started my first job in the real world, working 8-5, paying bills. That transition from college life to the real world wasn't easy. I didn't really like my job and wasn't sure about my future prospects. What should I do with my life? In what direction should I be heading? I never really thought about it up until then. Before I just did what I was supposed to do: go to school, work, study, party, enjoy the college life. I couldn't find my place when it was over. Needless to say, uncertainty created tension and stress.
Secondly, I was going through spiritual trials during that time too, attempting to understand and define my values and find my faith. And in part the cause for that was related to my first point. I have found myself, but it's still a journey, that will continue for a life time.
Lastly, I was getting serious about my relationship with my future wife; we were considering marriage. I was happy and nervous at the same time: happy because I was going to marry the woman I love and nervous because I didn't know what marriage would be like. It's a change to go from being single and not answering to anyone, and then being interdependent and in a way giving up a part of who you are.
I'm not opposed to change and try to embrace it the best I can, but I think at that time I was overwhelmed with the reality of life and all the changes and turbulence that came with it. If it was just one thing, it would have been easier to deal with, but the combination of all the factors that I described above, caused a great deal of chronic stress for me. It's gotten a great deal easier; we humans can adapt quite well to changes in our lives. But I'm still adjusting, still trying to make sense of it all and learn how to deal with stress and find direction in my life. I believe that more than anything else contributed to my JRA flare up. Granted, I'm genetically more predisposed than others to the disease, but I'm certain that a combination of those experiences became a continuing trigger for my condition. The trick is to figure out how to deal with it in the best way possible, using all methods available. Step number one, is confronting what you face, becoming aware of it, admitting it to yourself and then educating yourself...

Psychological Stress and the Human Immune System

"...Cytokine expression represents a relatively new and promising example of an avenue for research linking stress, immune change, and disease. For example, chronic stress may elicit prolonged secretion of cortisol, to which white blood cells mount a counterregulatory response by downregulating their cortisol receptors. This downregulation, in turn, reduces the cells’ capacity to respond to anti-inflammatory signals and allows cytokine-mediated inflammatory processes to flourish. Stress therefore might contribute to the course of diseases involving excessive nonspecific inflammation and thereby increase risk for excess morbidity and mortality..."
Suzanne C. Segerstrom and Gregory E. Miller

I've suspected for some time that short term and, even more so, chronic stress can contribute to negative immune response and flare ups in patients with rheumatoid arthritis. There still haven't been too many studies in this area, but the majority of them show a positive correlation between prolonged stress and negative immune response. Since chronic stress may "elicit prolonged secretion of cortisol", I wonder if there is a higher than average percentage of people with RA that suffer some type of kidney disease or deficiency?!

My Story - Part 2

After I came home from the hospital, my parents started gathering information on natural remedies that could help me. One of the family friends recommended a naturapath that, she claimed, cured her mother from diabetes. We didn't have anything to lose at that point and went to see him. He was a very interesting person; I don't even remember his name now. He got involved in natural remedies and "alternative" medicine, because at one point in his life he was diagnosed with incurable cancer. He developed his own treatment program and cured himself of cancer. At least the xrays showed no malignant growth when he came back for his check ups.

He suggested that I should do several things. First, he asked that I stop eating sugar, salt and fried foods. He told me to eat lots of seafood, fruits, vegetables and juices. Any other meat had to be baked or boiled (as well as other foods). He also told me to take "moomiyo". I don't know how to correctly translate it from Russian, but it's a brownish, sap like subsance. It occurs naturally in the mountains in certain regions of Russia and it is believed to possess many healing properties. I took it internally and used in poltices. He also recommended that I apply clay poltices on my knees and ankles. We used white bentonite clay and mixed it with horsetail tincture.

So I started my regiment following that man's advice. We went to see him periodically, and I also went for some physical therapy at the local hospital. It didn't happen right away, but after 2 - 3 months the swelling in my joints started to go down. My blood work also improved and all markers started returning to normal. I stayed at home that whole time, but in the Spring, around April I remember going back to school. It took a while for the swelling to disappear completely and to regain most of my mobility. I remember it was such a joy to start running again. After months of being quite immobile, I almost forgot how to do it. My parents discouraged me to play any sports; they tool a look better care of my knees than I did. From then on I always had to keep in mind that I had to take care of my joints, my health.

I also remember having a lot of faith in myself and my parents and everyone that helped me. I had faith that I would get better. I just had to and there was no other way. I never doubted that I wouldn't...

My Story

I suppose I need to explain a few things about my relationship with juvenile rheumatoid arthritis (going forward JRA or simply RA). I've been unfortunate enough to have this serious chronic illness. I was first diagnosed with it when I was 7 years old and from that point on my life has never been the same. I was born and grew up in Belarus, Eastern Europe. Actually it's a miracle that I was given an accurate diagnosis, considering that there wasn't much data and knowledge about that condition in the Soviet Union back in the late 80s and early 90s.

It all started in the Fall, around October. I noticed that my left joint was getting stiff and tender. I first thought that maybe I pulled one of the ligaments around my joint. I showed the knee to my parents and they thought the same. I spent a lot of time playing outdoors with my friends, something that I'm sure all 7 year old boys enjoy doing the most. So the obvious conclusion was that I hurt myself when jumping off the fence or running. But the knee discomfort didn't get any better. The joint became more and more inflamed and swollen, and it became harder for me to walk. Shortly after that, my right knee began to swell up as well and later the same happened to my ankles. That started my endless hospital visits.

First my parents took me to the local hospital, but the doctors there could not come up with a clear explanation for my problems and referred us to the regional hospital. The medical system in Belarus, and I suppose some other Eastern European countries, is mostly inpatient. Many people with acute or hard to treat conditions stay in the hospitals for days or even weeks at a time. Since the medical systems is socialized, the taxpayer picks up the tab. The "beauty" of socialism. I've spent about a month and a half at the regional hospital. Needless to say I wasn't too excited about being away from my family and friends for so long. The hospital was about an hour drive from my home town which precluded my family from coming to see me as often as they (and I) wanted to.

The majority of that time no one could answer a simple question about what was wrong with me. The initial blood work didn't show anything alarming (or maybe the doctors didn't test me for JRA right away). My physician recommended putting casts on both of my legs and so for about 2 or 3 weeks I had to move around on crutches. My condition wasn't improving, and finally my doctor recommended seeing a rheumatologist. Once another series of blood tests were completed, they revealed that I tested positive for RA, and from that point on I was diagnosed with juvenile rheumatoid arthritis. I was transferred to another hospital in Minsk which had a unit that specialized in treatment of arthritis patients. The treating doctor told my parents that the only treatment that they could offer was draining my joints of synovial fluid. My parents refused to give their consent to perform that procedure and asked to release me from the hospital. The doctors objected and said that I would never walk again, but went ahead granted the release. My dad took me home in his car; he had to carry me because at that point I couldn't go up and down the stairs on my own. And so began the next chapter in my fight with JRA.