From IC to My Best Life
In the years just prior to my diagnosis, I lived a decidedly amazing life. The existence I had going wasn’t just kind of good but it was one that truly looked blessed at the time and had been, on many occasions, actually called “amazing” by the people that know me well. Much of this perception came from the thought of how much my life had changed since my childhood. In my 30s, before IC entered the picture I loved the day to day. I was fit and happy. I rarely got sick and didn’t even know who my primary care doctor was. I married my person in this world and we lived in a charming neighborhood near the downtown area of Denver, only a few minutes from a company I had built and was made CEO of at a precocious age of 34. We had children and both were born healthy. The truth; well, the truth I know now, is that my existence was not that great. Much of the way I had to lived growing up and some of the commonplace practices of my adult life had created growing imbalances around me and within my body. Back then I didn’t know I was on a journey and didn’t know I was traveling down a dark path. One that is so clear to me now but that I was oblivious to at the time.
From time to time I read a book called Awareness, by Anthony deMellow. The stories keep me centered. The premise is that most of us don’t change until we hit rock bottom. We seek relief, we mask our issues, and talk about our trials ad nauseam. It isn’t until we run out of these things that we look at where we’ve sank only to find there is only one hard path left to walk. I grew up in rural Alaska. My mother was terminally ill and severely disabled. My siblings and I cared for her while we raised each other. My father worked away from home. It was a kids raising kids environment. It was a place of duress and uncertainty. At 17 I was able to acquire a job doing manual labor on the trans-Alaskan pipeline on the northern ice flats of the US and eventually got myself into college in Colorado and my siblings moved there as well. The five of us climbed up from rock bottom. My sister worked for a meat-packing plant to pay for her college and is also a CEO of a successful company. We climbed up and up and out. It was from these circumstances that I built the “amazing” life I lived before I was diagnosed with IC. And, the place from where I would fall to a rock bottom beyond imagining.
After my second child was born, my body mostly made its way back into shape and good health. I was 38, ran a large company and was raising two kids. There were plenty of excuses that both the doctors and I could come up with for why I continued to feel fatigued and experienced difficulty in maintaining my usual positive mood with each sunrise. It was during this time that I started to have what I thought was repeated urinary tract infections, something I had little encounter with before. It seemed that I would contract one for almost any reason: sex, swimming or not showering the moment I got home from the gym. Looking back, I now can see that only one of the many trips to the doctor during these six months actually resulted in a conclusive infection. The other episodes only produced symptoms similar to UTI.
A few months later, the two kids and I traveled to visit family about 3 hours out of town and during the night, I woke with again, what I thought was a terrible UTI. I went to the rural Colorado emergency room in the area and they gave me an antibiotic. I felt anxious, really tired and struggled with the constant feeling like I needed to use the bathroom. And when I did, it burned. I was traveling with a baby and a toddler. It was an unforgettable miserable experience. As the days went on, I remember thinking that something seemed really wrong. I took yet another prescribed antibiotic and was able to recover some. But within a week of completing the antibiotics and without doing any of the things that normally agitated my system, the symptoms resurfaced. I was instructed to drink plenty of water, to stay away from coffee and to use the over-the-counter medicine AZO to numb the bladder and help me get more consecutive hours of sleep. I had been getting up 3-6 times each night to go to the bathroom or to drink water to stay extra hydrated. The messages from the doctors were confusing, the fatigue all-encompassing and my steadfast mood of good cheer much harder to find.
Over the next few months, I lived in almost constant discomfort and pain. It felt like my kidneys were going to explode, which made my back flanks tender, even to the touch. I developed a rash on my stomach and chest. My hands, feet and face were puffy and I had terrible headaches that hurt round the clock. My vision was blurry often and sometimes I couldn’t read street signs or drive after dark. I have always been a thin small framed person, but during this time, my stomach was permanently distended, constantly making noise, full of pinch pains and nausea. I started to wear my maternity clothes again, to keep the pressure of my stomach and bladder area. No matter how simple and clean the food I would select to eat was, everything I ate bothered my digestion. Sometimes food made me so nauseated that I would skip meals while taking magnesium to help flush my system back to some level of comfort and recognizable size. The whites of my eyes had yellowed and became red with veins. My hair fell out in shocking amounts, when I washed it. My eyelashes thinned to almost nothing. My fingernails had unending ridges and splits. After a life of commitment to rigorous exercise, I gave up any extra activity all together. My muscles were weak and my joints hurt. I couldn’t even escape it at night, as I woke constantly feeling freezing cold and wrought with nightmares. When I did get up in the mornings, I thought about whether or not I would get to come home for a short nap that day and how early I could maybe lay down to rest that night. I was exhausted starting with the moment I got out of bed. One of my wrists and one of my knees hurt so badly that I had trouble lifting my beautiful one year old baby to hold him.
It had been about 10 months since the issues started. By then, my mood was so down that I had to pray and focus before I walked out of my room in the morning to greet my kids and breathe before I walked into meetings for work. I had ceased going into the office unless it was absolutely necessary, saving all my energy to showcase myself it was absolutely necessary. I had a terrible time concentrating and had to plan the times that I would make key decisions for my family or the company. I would plan a nap and drink coffee, then focus exclusively on the subject at hand. I was a shadow of the keen ball of energy that ran one of the largest companies in our industry and a thriving home. I had a permanent puffy sheet-white face. The rash had now moved to cover my entire torso, front and back, as well as, one arm, my neck and to my devastation – it had made its way to my chin and jaw. My immune system was down and I started to get every sickness that kids brought home from daycare. I had goopy congested eyes that I could not seem to fight off, a terrible chest cold that had left me sleeping sitting up for over a month and back pain sever enough to make me unable to sit in a chair at times. My eyes and nose felt irritated and clogged with mucus. If I were to go swimming or to have sex, it would take almost 4 weeks for the irritation in my bladder to subside, during which time I would hardly be able to sleep. I needed to go to the bathroom constantly and my urine burned at each of these frequent visits.
I had been in to see my primary care doctor, an urologist, an internist, a nutritionist and into the emergency room five times in less than eight weeks. None knew what was wrong with me and most of the appointments left me more confused and less sure of what to try next. One specialists would tell me I need to drink more water, while another would tell me I had been drinking too much water. Some wanted me to get more activity and others told me I needed to let my body completely rest. Most wanted to put me on daily low dose antibiotics, as a precaution should any of my mounting symptoms build towards an actual infection. This was the most confusing, since during all of these months only one of the dozens of UTI scares had concluded in an actual infection. One appointment ended with the doctor asking if I had considered seeking psychiatric help to assist with what he had witnessed as a dramatic change in character.
One day, I was at a luncheon for work downtown and I found myself in so much pain that I thought I was going to pass out and fall off my chair. I managed to get my car from the valet and drive myself to the ER where one young female doctor there recognized that I had interstitial cystitis and formally diagnosed me. She immediately spoke to what I had experienced. She recommended I meet with my urologist again with this diagnosis in hand. This next appointment turned out to be what crushed me to my lowest low and the deepest rock bottom I had ever found myself. The urologist agreed with my diagnoses and went on to give me a devastating prognosis. She told me that I needed to immediately begin heavy doses of some of the strongest antibiotics available. These would be rotated to create a fake immune system and would be a permanent part of my life. She let me know that there was no real cure for IC. I learned that some of the drugs on the market provide relief temporarily but become ineffective over time. There were suggestions for pelvic floor treatments, drugs that numb the flank pain and bladder, and depression medicines. None of the options presented would actually heal the condition and all only addressed a handful of the issues I was dealing with. I learned that without a real immune system, my life expectancy was much shorter. And, during that shortened period, I would live with various levels of discomfort and symptoms. The news broke me in a way that I had never felt before. It was, after all, my greatest fear; that I might get sick and leave my children without a mother, just as mine had done to me.
I made it to my car before I burst into tears. I called my husband. We weren’t surprised by the seriousness; I had been very sick for almost a year by then. But it was the lack of any path ahead that brought us all the way down. I could climb up from rock bottom. I had proven that to myself before but there didn’t seem to be any path to take. Despite the miserable state I was in, I didn’t want to mask the pain or find temporary relief. I wanted to heal. And for this, there seemed to be no way ahead.
That night, after everyone was tucked in bed, I went to the kitchen, kneeled down on the floor, put my face in my hands and cried the deepest cry I had ever let out of me. My innermost sadness felt almost bottomless in that moment. IC had literally brought me to my knees and I was praying for hope. The old me was trapped inside a crumbling body and I wanted out with all of my heart. On that night I decided that I would learn everything there was about IC and that I would try to live as long as I possibly could, for my family. I would live well and full and happy for my kids or die trying.
My husband and I immediately hired an attorney and got our affairs in order. We made plans for the worst while keeping the smallest light for a way up and out. We quickly decided that I would not be taking the antibiotics prescribed. I had an instinct that the antibiotics I took months earlier had been a tipping point for sending me headlong into my condition. I was looking for a different path, a confident path. None of the doctors I had met gave me the impression that they had real surety in my diagnosis, prognosis or treatment plan. I needed a guru, someone to lift me by truly knowing what was going on inside me.
The next day I dove into research and read countless stories from IC patients across the country. It was then that I found – in two separated searches on the same day - two people who lived on two different coasts that were sharing eye-catching stories. What was most unusual was that both believed they were healed. One wrote that she “didn’t even think about IC anymore”, something I could hardly imagine at the time. The first person I found had worked with someone they repeatedly referred to simply as Matia; no last name or formality and it was obvious that they knew each other very well. In the second story, the writer regarded her guiding person as Boaz. There recounts were shocking and I was frozen taking it all in. I searched Matia and Boaz and IC and remember how what I saw on the screen put me back in my chair. They both worked at a placed called BomaMed; these two strangers had been heeled by the same source.
I was in terrible pain, couldn’t breathe well and was emotionally depleted when the person on the other end of the line answered the phone at BomaMed. She reassured me that I had found the right place, that I would be okay. I was stunned by their readiness and got so much comfort from the fact that I could tell the team was seasoned in receiving people in my deteriorated state.
The online form required to begin was extensive. I had to dig into health history and provide deep information on my body’s journey from birth to present. My first appointment with Boaz continued this research phase. He asked a lot of questions about my past and present situation. The anticipation for the first appointment was enormous. I was in so much pain and was crawling through each day using AZO to numb my urinary tract, nose drops so I could breathe at all, drops to clear out my eyes and a variety of creams in an attempt to control the rashes. I needed help and with everything that I was, I wanted this to be the answer for me. And, I didn’t even know what “this” was!
The first few appointments were an adjustment for me, particularly given how much time I had recently spent in traditional western medicine doctor offices. Boaz asked a surprising amount of questions, something that never occurred in the year of appointments that led up to this. He listened carefully to my answers and was quiet as he took down extensive notes. He spoke confidently and was un-phased by any of my symptoms. I got this very uplifting feeling of reassurance because he responded to my scenario as being common for someone with IC. I went from a year staring at the faces of expensive specialist wearing puzzled expressions into appointments where comment after comment explained exactly what I was living with day after day. With little prompting, Boaz often outlined exactly what I had been through up until that point. And, he always explained why the symptoms were occurring. And, I will never forget that early on, I told him what the doctors had shared as my prognosis. His simple response was, “But that is not the truth.” It was the way that he said it that made me know, even though we had hardly started working together, that I was at the right place. That I was going to be okay. That I had a good chance of getting well if I could learn what he had come to know.
I was excited and I could see the hope reflected in my husband’s face when I told him about my first upcoming appointment. That said, I left the initial appointment and discussion with Boaz with one simple instruction: to go get quality spring water and stop drinking anything else. And, to increase my water intake. I sat unmoved, frustrated that there would be several more days before I would talk to him again and all that I had to make me feel better would be some store bought water. My previous experience with doctors had trained me to think I should be leaving my appointment with something I would take that would start to work for me to make me feel better – an easy-button with at least some quick results. The idea that there would be effort on my part was foreign. So, I asked Boaz how long it would take for me to get well. I learned that it is different for everyone but that it took a long period of time to create my current condition and so it could take a while to make me well again. It was then that I realized I needed to accept the pace of true healing.
After the first appointment, I drank only Spring Water and I tried to consume a full liter more than I had been each day. By day four, my urine only burned sometimes and while I still had a headache, each day these became less severe. During my second appointment, I learned about the IC diet that had been carefully honed through decades of research by Boaz and his wife Matia. I was pleased to see that it was as clean as my family already liked to eat but was curious about why some foods I had always consumed were deemed off limits and others that I had thought would agitate me were staples. The list was more restrictive than anything I had ever tried but also revealing of new possibilities. I was determined and set up our home to fully embrace the change. And, I began to take some recommended herbs that were carefully designed to help slowly drain my lymphatic system of toxins and long-held pathogens, as well as, address my immune system condition and my gut imbalance. The appointments with Boaz brought me confidence and determination each week. It took a while for me to accept that what the western medicine doctors had thought were a slew of unrelated issues, were actually deeply connected and very common for IC patients in Boaz’s program.
The appointments with Boaz always started with a simple question about how I was feeling and then a series of questions that marked milestones and concluded with time for me to ask him questions that I had compiled during the days in-between our meetings. He has a wonderful way of teaching that is a blend of listening carefully and sometimes answering with a question that I need to answer for myself. Often times, Boaz teaches with a metaphoric story that creates, in my mind’s eye, an image of what is going on inside me. For example, it was a very exciting day when I was well enough to drink quality coffee but I was reminded that caffeine can be like fuel poured over a campfire – that the fire doesn’t last longer, it just concentrates it in shorter period of time. And, from time to time, Boaz would tell absolutely humorous stories of journeys he had been a part of over the years, all of which continued to help me feel empowered and less alone as I climbed up and up.
Early on, I supplemented my learning with researching about IC. I quickly found that most of the world was far behind the program created at BomaMed. I read Matia’s research book and worked to build my own knowledge of what my body was going through and how it was being healed. When you work with Boaz, you quickly recognize an enormous learning curve in front of you. Boaz and his family live in the future and with an awareness that most of us don’t know is available. My path to getting to live and live well took me into learning about how my body works and into deep reflection of my own life, all of the way back to birth.
Boaz often discussed aspects of my childhood with respect to how the gut and lymphatic system can be damaged over time. As an infant, I was colicky, making it more difficult for the mother/baby bond to be established. Later, the home and place for developing and safeguarding gut balance early on, was stressful and unsettling. These things played a role in laying the ground work for my immune system to be less effective. I recalled having migraines on the school bus on the way home from kindergarten. Most of my life I have been thwarting head pain, food reactions and stomach discomfort – all of which worsened when I had my children and as I aged. Boaz connected occurrences and milestones from my past to damage done to my body.
My first eight to 10 weeks on the diet and taking the herbs brought drenching night sweats, terrible body odor and bone crushing-fatigue. Sometimes I could hardly force myself to stand up. I had thought that I had lived a clean diet before working with Boaz but I had really just developed a hodge-podgy uninformed way of eating whole healthy foods that ultimately had made my condition worse. Things like coconut oil, gluten free breads, poorly raised eggs and some kinds of fruit had been severely irritating my gut. There were times that my body incessantly craved some of the old irritating foods that I used to eat. I then asked Boaz the question I am certain he must get from nearly all of his patients: when will I be able to eat all of those old foods again? When can I eat whatever I want? He simple responded with, “why would you go back to what created the condition you have now?” This comment stayed with me for weeks and eventually I came to fully break up with my old way of living, in favor of finding my way back to the amazing-ness of the life I had before. In the initial months, all of the detox and focus on a better way of living was in an effort to get back to where I was before.
With the new plan, I started to have full days without headaches and some days my face was much less puffy. The rash on my neck and chin diminished. I was beginning to sleep for longer stretches at a time at night and some of the congestion in my respiratory system had cleared out. My eyes cleared. I started to not have to go to the bathroom for several hours at a time and the burning had subsided.
Boaz also worked with me to rid other toxins from entering my system. I remember giving him two pages of products that I used for showers, make-up and hair routines. After trying some products from the natural store, that at first seemed non-toxic enough, I eventually filled our cabinets with toiletries designed by BomaMed’s BomaSense line. The first time I washed myself with the soap they crafted, I realized how important our skin is as a barrier. Boaz had told me many times but that day I experienced it. I washed and felt nothing. Nothing. Which I now hold in high regard. And, was so much better than something in those days. I used to always feel dry, itchy and burning. My skin was quiet with the BomaSense soap. I started to use their shampoo and conditioner and my hair became less brittle and so full and thick that I had to purchase a more robust brand of hair tie. My eyelashes were thicker too. I learned everything I could about what I put on my body. I became aware of what I allowed to get close to my skin. My nails, now without polish, grew out straight and a lovely healthy pink color.
My mood and cognitive capability was still not great every day but it took less to mind over matter each morning. Every time I ate anything, I still wanted to fall asleep at the table. On one airline flight I took, I had to breathe and pray for the entire duration. It was going through a flare and it felt like I was going all the way back to the beginning. The pain in my joints, need to urinate and anxiousness was overwhelming. But Boaz guided me through it. And, as he had let me know, these occasional flares were not setbacks. The enormous progress made was all still there and the length of the flares got shorter and the frequency of these episodes far less. What took a month to recover from only took one day to heal a year later. I went through several cycles of feeling a little better and then again further detoxing. Once in a while, I found myself completely peaceful, something I hadn’t felt in many years. I was healing but continued to focus on becoming completely well. And, I was beginning to see that anything was possible. With Boaz’s guidance, my body had overcome and become healthier than dozens of medical professionals had thought possible just months earlier. By the end of the fourth month, I had more good-feeling days than days filled with discomfort. The worst symptoms were well under control by the end of year one, but I wanted more.
As I embarked on year two, the focus was to diminish remaining symptoms more completely and to establish enduring health. Today, my home has a permanent point-of-use high-grade water filter for use by the whole family and for use during all of our cooking. Adhering to the diet no longer feels like a sacrifice; I can now see it was a necessary retraining on how to eat beautifully. My body and mind are glowing. My skin is as flawless as it was when I was a teenager. I can exercise now – harder and more intensely than before - and my muscles are properly fueled so the performance is beyond anything I have ever seen for myself. My nails, always natural now, are strong and even. My eyes are a brilliant blue with the clearest whites surrounding. My hair is shiny, long and full. Most importantly, I have immense cognitive clarity and a peaceful even mood. I had suffered from nightmares since I was 7 years old. Today, my disposition is even and open each morning when I wake and my nights are filled with uninterrupted sleep that lasts as long as 7 hours.
The second year brought astounding good health. Health that I didn’t know existed for me, a way of living that exceeded the previous “amazing” life I had thought I was working to get back to. And, with this came many surprises. I had been a part of a champion rowing team on a green algae-covered lake. For years, my teammates had complained of the odor of the lake. I never had any real sense of smell. I now smell the rank lake before I get out of my car to walk to the dock, as well as, the sweetness of my kids on my clothes after a good hug and the aroma of turkey-basil meatballs slow roasting. The glowing days of mental clarity and inner peace showcase a feeling and way to move through life that I want to possess day in and out. As I traveled the path and climbed up and up even more, my mindset moved from not wanting bad things to happen in my body, to wanting the best working systems possible.
The gift of a good clear mind and a quiet body is life changing. I now live with low anxiety and rarely find something worth stress – both things I previous thought to be from unmanageable origins like genetic inheritance, the conditions of my childhood or the years of pressure in my early career. It turns out that having a truly healthy body that is toxin free, balanced, fueled properly and well hydrated can give you copious amounts of good cheer. And, when this springs forth from such a sincere place, you become an experience for all around you. Living well, truly well, showed me how much the health of my body can impact the lives of my family and my staff at work. Becoming healthy and balanced has made the environments around me more balanced and calm.
I too can now say that I don’t think about IC anymore. I have been given the gift of knowledge for how to live my best life. Developing IC took me to the deepest rock bottom and caused me to face my biggest fear in life. It broke me down physically and mentally. Boaz taught me how to rebuild, to heal and to live well. On one of my recent appointments, Boaz said, “I’m not worried about achieving your objectives so much as achieving your potential.” What he knew was possible for me was beyond what I thought achievable for myself. It still brings me to tears when I think of that day on the kitchen floor or when I attempt to thank Boaz for my transformation; for the path shown and for teaching me how to climb up and up. And, for all the AMAZING unexpected joy.
Katie 2018