I used to think I was a healthy person. Sure, I drank too much cola and smoked the occasional cigarette, but I had been a vegetarian since the age of sixteen, didn't eat in fast food restaurants, rarely drank alcohol and generally believed that it was okay to indulge occasionally as long as it was in moderation.
From the age of twenty-three I'd noticed a few odd problems that were all dismissed by my doctor. I had chronic headaches, severe allergies that were getting progressively worse every year, extreme debilitating bouts of vertigo that came on just as mysteriously as they left, and strange rashes and breakouts on my stomach, arms and chest. At times I felt like a bit of a hypochondriac wondering if I was being overly critical about what could be "normal" occurrences due to the aging process. Doctors had no explanation for my problems, and passed them off as "nothing to worry about". Twenty-three was also the year I stopped taking the birth control pill against my doctor's advice that the pill was safe. My family physician was at a leading women's hospital — how could she be wrong about women's health? Yet I just 'felt' that something wasn't right with my body and I determined that it was time to stop taking the hormones. Seven straight years of altering my body chemistry seemed long enough.
Several years passed, and while I felt that certain problems were increasing exponentially, I did what the doctors said and dismissed them. One day after five months at the most stressful and emotionally and spiritually draining job of my life I took a week's vacation with my spouse. During the course of the trip mysterious problems developed that seemed to come from nowhere. I had the constant need to urinate, but when I got to a bathroom I couldn't go. This caused endless problems during the trip since we were traveling around and wanted to see and do things where no bathroom was in sight. I also developed an extremely itchy rash on my legs, arms and stomach that I assumed had been caused by the sun, yet I had been very careful about my sun exposure and had worn a very high sun block.
Upon returning home I went to a new doctor recommended by a friend thinking it was merely a bladder infection (I'd never had one before) and that I just needed a doctor's confirmation. The doctor did some tests, took my word for it and assigned me a week of antibiotics, which I took against my own better judgment. When the first course made no improvement and my symptoms worsened, I was prescribed a second round. By this time I was in agony. I had a sharp, dull pain in the lower left side of my abdomen, I had the constant need to urinate with no relief, and getting to and from work during a snowstorm was becoming a stress-inducing battle. I tried all the common herbal remedies for bladder infections — which only contributed to worsening my symptoms. I cut out coffee, pop, and all kinds of other junk foods and diuretics with no luck. A second round of antibiotics with no relief proved that something else was going on with my body and I needed to investigate further.
The next 6 months went by very slowly and painfully. I went through a variety of stressful tests until I was eventually recommended to an urologist. During this time, the tests also indicated I had cysts on my ovaries accounting for the sharp pain in my abdomen. After a three month, wait the urologist put me through another series of painful and invasive tests over the course of a few months. During that time, I did a lot of my own research, but without a doctor's confirmation I just didn't want to admit that it was as bad as it was. There aren't a lot of bladder-related problems and I only had symptoms for one ailment — a disease called Interstitial Cystitis. With a name like that it had to be bad and I didn't want to admit that at 26 years of age I might have a 'disease' that doctors knew nothing about and for which the symptoms could potentially be alleviated, but for which there was no cure.
The day I went in for my diagnosis was a memorable turning point. The urologist sat me down in his office and very coldly informed me that while I didn't have all the symptoms — namely bleeding cysts in my bladder, my bladder capacity was about one third the size of a normal bladder and I probably had Interstitial Cystitis. His course of action was to begin with putting me on a two-month course of antibiotics 'just to be sure' there wasn't any bacteria in my body despite the fact that I had been through extensive testing on several occasions. If that didn't work he would follow up with a bladder distension (an invasive procedure in which they stretch your bladder with water) and a lifetime prescription of Elmiron® — a drug that alleviates some symptoms in approximately half the people who take it, and which, if it worked, I would be taking for the rest of my life. When I asked the urologist about the safety of taking a two month course of antibiotics his response was, "Don't you want to get better?" despite the fact that I had already been determined to be infection free and antibiotics had only served to worsen my condition. When I asked about my reduced bladder capacity and what I could do to improve it (I was already dehydrating myself in order to avoid constant bathroom stops), his reply was that I should "drink less water". Eventually he just got up, walked out without saying a word and never came back — leaving me sitting there wondering what had just happened. The doctor's office never bothered to call me to schedule a follow-up appointment for any of the procedures he mentioned. They just wrote me off without saying a word.
That day, on my way home, I looked at the antibiotics prescription in my hand and decided that I couldn't put my body... my life, in the hands of a doctor I didn't like or even trust. I felt that it wasn't asking too much that I be allowed to ask basic questions of the person in whom I was counting on to advise me regarding my health without being treated like a disobedient child. Since he was supposed to be the best, I felt it was time to explore other options — I turned to alternative health.
As soon as I got home I called around asking friends if they knew anyone who could recommend a naturopath. I had never considered an alternative health practitioner prior to this for financial reasons. Alternative health care just isn't covered in my part of the world. However, I decided that paying for good treatment wasn't a frivolous way to spend my money and it was time to give it a chance. In the end I chose a naturopathic doctor from the phone book who specialized in women's health. When I first walked into her office I was a mess. I was psychologically and spiritually destroyed because I had also been grieving the very recent deaths of two extremely close friends. The dry winter heat had aggravated my already sensitive skin leaving me with a red, blotchy face. I looked physically toxic (my liver and kidneys were overloaded) and I was emotionally drained and tired from dealing with this disease. Yet that first appointment was amazing because for the first time I had hope that I was doing something about this and that I might get better. I asked questions and she answered them. She was friendly, articulate, compassionate, and most importantly she treated me as an equal and as an intelligent adult who had a right to be engaged in a dialogue regarding my own health. I was astounded. I had never experienced this with an MD.
I stayed with this naturopath for well over a year. Her help was vital in my healing but it wasn't enough. She helped me gain a better understanding of why this had happened to me. She helped alleviate a lot of my secondary symptoms and lead me on the path to a better understanding what I needed to do to get better. However, in the end I realized that I had come as far as I could with her leading the way. She didn't have an understanding of exactly what was wrong with me and what needed to be done to overcome it. And I was so sensitive to everything. I can understand how frustrating this disease can be for someone who is treating it. Sometimes the symptoms seem irrational and appear to happen for no reason. In one second I would turn from bad to worse. The biggest problem had manifested itself in the bladder, but that wasn't where it started. My whole body was messed up.
January 2001 marked my second anniversary with I.C. I was really tired and distraught about what my next course of action was going to be. I was determined that this year I would get better. But I didn't know what to do. I'd had allergy and sensitivity tests yet I knew I was still eating things that were making me react. I couldn't travel down the street without prepping myself, let alone getting out of the city. I felt like a 27 year old stuck in the body of an 80 year-old woman. I was tired of turning down invitations to go on trips, visit friends who lived across town or stressing over simple things that most people take for granted such as sitting through a business meeting. I was tired of focusing on the pain in my bladder and organizing my day around my good times and bad times (I was always better in the late date than the morning). I was tired of keeping a mental map of what routes in the city were most 'public bathroom friendly'. I had bathrooms systemically categorized and cross-referenced in my head according to quality (is the bathroom clean or disgusting?), accessibility (is the bathroom free or do I need to make a purchase?), quantity (will I have to wait in line or are there multiple stalls?) and location (how far is it to the next bathroom, is it on route to where I'm going?). Trivial information such as this became vital in keeping my sanity intact.
A friend alerted me to a book she was reading called "Eating Alive" by Dr. Jonn Matsen N.D. In basic terms his book follows the premise that disease starts with inefficient digestion. Over the last few years I had learned to pay attention to my body. I knew that my I.C symptoms were greatly influenced by what I ate, and I knew I had serious digestive problems. On my first trip to the family physician two years prior, I mentioned that everything I ate made me sick to my stomach and that I was bloated all the time regardless of what I ate or how much I ate. She insisted that I was a vegetarian and that I just "ate a lot of beans", despite the fact that I had been a vegetarian for over 10 years and had never had this problem. I read Dr. Matsen's book and his follow up "The Secrets to Good Health". Both of these books do an excellent job of explaining how our entire body functions in coordination with our digestive processes. I followed the diet he lays out with my own modifications based on known sensitivities, and I started taking supplements to improve my liver health and to remove yeast and toxins from my body. After the first three months I felt a definite improvement in my physical well-being but I still had all kinds of I.C symptoms. Again I had reached a plateau where I felt I had come a long way but I needed some guidance to take me further.
At five months I found BOMA-MED from an interview with co-founder Matia Brizman D.Ac., L.Ac. about her practice and how she treats Interstitial Cystitis. I liked what she had to say about I.C., and how she thought people came to this disease. It followed along with my own theories, and made me feel assured that I could trust my care in her hands. She works from L.A. but because she takes long distance patients I was able to begin treatment. The first thing she did was alter my already limited diet significantly. I was shocked when she listed off the things I was still eating that were irritating to the I.C patient. Things that I knew to be healthy, and are to most people, were doing me more harm than good. Matia treats every patient uniquely, which is a relief since we are all different and came to I.C. in different ways.
I have been in treatment under Matia for seven months and I still have I.C. It took me 28 years to get to this stage, so I imagine it will take my body quite some time to improve. I know that I will be better eventually. The results in the last seven months have been astounding. Almost every single symptom is gone except for the bladder problems. They have basically left in the order they arrived. There was a time when I couldn't lay flat or turn my head in a certain position or the world would frantically spin like a nightmare merry-go-round. That is completely gone. My allergies have also cleared up. In the past, the month of August was a write-off due to extreme allergy symptoms that left me weak and broken down. I went through this past August with almost no symptoms AT ALL! I can vacuum the rug without breaking out into a fit of sneezing, hacking and itching. My bladder has been a lot better. I went on a short trip in a car outside the city - something I never would have done before. I still have bad days, but I usually know now when something makes me sick whereas in the past it was a frustrating mystery. My sensitivity has decreased. I no longer react in a heartbeat.
It isn't all sunshine and roses. I have to maintain incredible will power in order to keep to the diet. I am not allowed to eat anything sweet - sugar aggravates I.C. symptoms and that includes fruit and sweet veggies such as carrots or beets. The list of foods I can't eat is much greater than the list of foods I can - making eating outside the home an impossible task. That combined with no alcohol makes socializing difficult. So much of our social world revolves around food and drink and the habits we form around them. Avoiding them within a social context is a test I try to avoid. Stress still sets me off so I have to be careful at all times to avoid stressful situations and force myself to take it easy and relax as often as possible. I am extremely sensitive to the sun and have to be careful to avoid too much exposure to it. My whole world revolves around my health right now. It comes first and foremost before everything - a self-consciousness that is necessary, but difficult to maintain.
As cheesy as it sounds, I can see the positive side to all of this although I'd rather not have gained my insights through such extreme experiences. I have obtained a knowledge of self and the workings of my body that few ever experience. I am hyper aware of my body and have come to trust my actions in doing what it needs. I have gained a hyper-sensitivity to smell that is both incredible and annoying simultaneously. Although I am still ill I feel I am actually in my physical prime and it is growing exponentially. I have been forced to concentrate on my physical self in a healthy way that is separate from vanity and appearance. Most importantly I will never make the same uninformed mistakes, and I will never be allowed to deny when something is wrong with my body because I've been through something that will always keep me focused and my actions regarding my body in check.
**The disclaimer part. I have only begun to scratch the surface regarding any of the topics discussed and I am not a certified health practitioner. These are merely my own personal experiences. It is important that if you have a health concern that you talk to a reliable, certified health practitioner.
