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--Joseph Campbell, Author
Please note that I am not a doctor and I can neither diagnose nor treat. I am providing my health story and any particular details that provided benefit for me may not provide the same results for you. The information provided is simply to demonstrate my transformation and journey to eventually achieve optimal wellness through the implementation of a protocol that was developed based on my own bio-individualized challenges and needs. I also do not necessarily endorse the way I may have handled certain situations and am not encouraging anyone to deal with situations the way that I have. Every decision and action that I have taken has been a result of extensive research and informed choices that I believed were best for my body. I believe in a fully integrative approach that includes following a healthy, holistic lifestyle, which seeks to prevent health and wellness issues from arising in the first place. I believe in the use of conventional medicine for acute or emergency situations and conditions that cannot be managed with diet and lifestyle choices alone. As you will read in my story, conventional medicine was ineffectual in helping to address my longstanding underlying metabolic issues; in fact, the treatments provided no benefits or caused other issues to arise, the latter of which I do not believe is the best approach for overall wellness.
I don’t often share my story and I have never shared it completely. My health story covers who I used to be and what I had experienced for thirty-two years. I share not only the physical issues, but the mental and emotional ones as well. My health story and my journey through loose leaf tea and herbalism are closely connected, so they are all interwoven here. I am sharing my story because, while I now understand that my health experiences may not be typical, they are certainly not unique. Dealing with chronic health issues, as many of you may know, can be taxing and I am sharing my story in depth in the hopes that those of you who are struggling can identify and feel some comfort knowing that you are not alone. There are many lessons that can be learned from my story and parts of it may resonate with you or family members or friends. I am also sharing my story to provide insight into why I have become a Certified Functional Diagnostic Nutrition Practitioner and why I have a great deal of passion in this functional, holistic approach. I am excited to be able to help even more people with a greater degree of positive outcomes than I have currently been able to do and I want you to enjoy the same benefits that I have realized.
My thirty-two-year health and wellness story is rather long, so please make sure you have a big mug of tea! :)
October 10, 1989 is the day that my life changed. This is the day that I was told I had contracted Epstein-Barr Virus (EBV), which is a very common virus that infects over 95% of the population usually without any adverse effects. This is the virus that is most often associated with causing mononucleosis. My titer count was near 500 (a normal count is under 20) and my doctor told me that I needed to rest for one to two months to recover. This recovery never happened and it set me forth on the journey of searching for healing and wellness that I have been on since then.
As a young girl I was rarely sick, I was inquisitive, eager to challenge myself and solve problems, and thrived on healthy competition. I was a very quiet and shy child, but had a reserved assertiveness that would pop its head out when needed. If a reply to a question I asked didn’t make sense to me, I wouldn’t be satisfied and would continue to ask more questions, pressing the issue until I received an answer that worked for me or figured it might just be easier to figure it out on my own. “Just because” and “because I said so” were never replies that were satisfactory and my mom would tell me that I would argue with the Pope. I wore this as a badge of honor, even though I know it wasn’t meant as a compliment. I was also very athletic, would compete against the boys in gym class, and would play basketball, football, softball, hand ball, dodge ball and volley ball with the neighborhood boys. I overcame my fear of water and became a competitive swimmer, ranking top in the county. I rarely missed school and I excelled in whatever I put my mind to. My determination came out in a meeting with my high school guidance counselor to discuss my plans for college. When he asked me where I wanted to go to college, I told him West Point. I still remember the puzzled look on his face and his response that I was a girl and there were other options. I was emphatic that that was where I wanted to go and his response only emboldened me. I graduated near the top of my class in high school and received that appointment to West Point Military Academy, quite an accomplishment for a young girl in the 1980’s. I wanted a career as an officer in the military, particularly in intelligence, and I had dreams of traveling and living around the world. My love of learning languages and experiencing other cultures fueled this dream. While in boot camp, I busted up one knee and was hospitalized. I rejoined my company on crutches after being released and continued to participate in all activities and training, even the tear gas chamber. Unfortunately, I re-injured the knee and then the other one, ending up being hospitalized for a second time. I returned home to recover and rebuild my body in order to return the following year, but this was never to be.
That October began a new chapter in my life. I had enrolled in an Advanced Chemistry class and began learning Russian at Suffolk Community College in order to keep my brain active in preparation for my return to West Point the following year. I couldn’t do much beyond the two classes due to the extreme fatigue from the Epstein-Barr infection. I also began to become sick more often. That winter I had a series of colds, sinus infections, and bronchitis. The fatigue never went away and months later I was diagnosed with Chronic Fatigue Syndrome. Getting out of bed in the morning was my first challenge of the day, but I would push myself to try to maintain a somewhat normal life. Hanging out with my friends for an evening would result in a two-week relapse, so over time I began to pull away from social interactions because I didn’t want anyone to notice that I wasn’t feeling well and I didn’t want to do anything to aggravate my condition. I was extremely fatigued all the time, but nobody understood how someone in her late teens/early twenties could be so tired all the time and I got tired of trying to explain it. Friends disappeared thinking that I didn’t want to see them any longer, but that wasn’t true.
My immune system was battered. Every year from October through April I would be constantly sick with colds, sinus infections, and bronchitis. I was on two or three courses of antibiotics a year for several years. I felt like I would get sick just by being near someone, so I began to keep my distance. I wasn’t even able to visit my friend in the hospital who was dying of cancer at the age of 21. I would talk to my doctor about the fatigue and look for any relief that I could find, but the response was always the same: “There is no cure and you just have to push yourself”. But I was and I didn’t feel better no matter how much sleep I got. I tried to stay as active as I could – I worked part time and I became a student at Stony Brook to get a dual bachelor’s in Russian and French. I would try to exercise – I was an athlete after all – but this would only hasten the fatigue and bring on a deeper level of it. I was on a roller coaster, trying to figure out how far I could push before relapsing with extreme fatigue or getting some sort of infection.
I never viewed myself as being sick. I knew things weren’t normal because I kept remembering who I was before EBV. I kept trying to get better and, as a young woman, I kept expecting the day that I would feel “normal” again. This day never came. The first six years of my condition were extremely difficult. Not only did I have the physical exhaustion, but I had the confusion of not understanding why I felt so unwell and not getting results from my doctor, along with the psychological distress and loss of seeing my dreams disappearing before my eyes. I was angry, felt like my life and dreams had been taken from me, and had the “woe is me” mentality. As a young woman it was extremely difficult to reconcile and come to terms with the health issues I was experiencing. My parents had a house in Arizona that they planned to retire to and they had a tenant, Maryellen, living there who also had Chronic Fatigue Syndrome. I had talked on the phone with her a few times and I could hear the anguish and distress in her voice during our conversations. She would cry and was looking for some sort of relief. She was looking for answers from me about what to do to feel better. I knew the hell she was in because I was there too. And I had no answers. There was nothing I could say that would bring relief, except that I knew how crappy she was feeling. I had no suggestions, no solutions. A few months later my parents told me that Maryellen had checked herself into a hospital and committed suicide. I think I knew why she did it and I couldn’t help but feel that I let her down. I knew there was nothing I could say to her or do, but that really didn’t matter.
Maryellen’s death was one of the drivers to get me to start to dig in and learn what I could to heal myself. The other was my doctor telling me that this is how I would have to live for the rest of my life and that I would have to get used to it. That was just not good enough for me and I was tired (literally) of waiting to feel better. I started researching vitamins and minerals and how nutrition impacts health. I never had a bad diet, never had a sweet tooth, never really liked processed or fast food, never drank much soda and I hadn’t had any since I was about 13-14 years old after my swim coach demonstrated what it does to a penny. I did make some changes to my diet and I started taking high doses of a vitamin and mineral protocol that I designed. I figured I would experiment and see what would happen……and it worked. That autumn I didn’t get sick once and I didn’t crash with crushing fatigue even though I was taking five undergrad courses. My fatigue was still there, but tolerable and I realized I was on to something. I thought I had fixed me.
My triumph was short lived and within a year my fatigue came roaring back. I was disappointed, but not defeated. I kept pushing myself and graduated from Stony Brook magna cum laude with dual Bachelor’s degrees in Russian and French. I worked at several different jobs, but usually would leave within a year because I would get so exhausted and would have difficulty functioning. Getting out of bed in the morning was a challenge and it was a chore to wash my hair and brush my teeth. Exhaustion was ever present. I would go to the doctor and get retested for EBV, but it was not active. I didn’t know why I was so tired and blood work was not providing any answers. I was told that there was nothing wrong with me. That maybe I was depressed. That I had to try. This dismissiveness only infuriated me because I knew there was something there and I just had to find it. I remembered who I used to be before October 1989 and that something had changed in my body. I was still the same person, with the same spunk. That doesn’t just disappear. One of my neighbors also had Chronic Fatigue Syndrome and her doctor told her husband that it was all in her head. Back in the 1990’s this was the thinking of many doctors and it’s no wonder why so many people dealing with these issues were depressed. We felt crappy and were told there was nothing wrong with us!
Believe it or not, I never liked tea growing up. My mom would bring home the common brands from the supermarket, but they didn’t appeal to me. In the mid-1990’s I discovered a better brand of bagged tea and enjoyed the many selections in the sampler that I purchased. I started experimenting with different types of teas and herbals, not because of any particular health benefits (didn’t realize there were any at the time), but because they were interesting and fit within my interests of languages and other cultures. When I visited my mom one afternoon, she asked if I wanted a cup of tea (a typical store-bought teabag) and I said sure and that I was loving tea. I took one sip of the tea she made and immediately was disgusted by the taste. I asked her how long she had this tea, she said she just bought it and showed me the expiration date on the box (which was still years away). I apologized to her and told her I couldn’t drink it - that is the day my tea snobbery began ;). It was that moment that I realized it wasn’t tea that I didn’t like all those years, but poor quality, stale tea. Then one day I accidentally purchased a pouch of loose leaf tea – I believe it was Longjing Green Tea. The legend about the tea was enthralling and I just had to try it. I opened the pouch and…..had no idea whatsoever about what to do with the leaves. Where was the teabag? What do I put the leaves in? How much do I use? Back then, instructions were not included on the packaging because I guess they assumed that the purchaser knew how to prepare the tea. Well, not me - I made every rookie mistake! I used boiling water, I steeped it for too long….and it was one of the most awful tasting cups of tea. But I was determined to figure it out and there was no going back to bagged tea when I did!
I enjoyed my “travels” to China, Taiwan, India, Sri Lanka, among other countries as I drank the teas produced there. I had always wanted to travel the world, but traveling was not easy with my fatigue and it would require months of recovery when I did travel. Drinking origin teas was a nice alternative and I felt that I could transport myself in my mind anywhere in the world. I would pick up some words in Mandarin and Hindi, all tea-related of course, but it drew me further in to the realm of loose leaf tea. I would eagerly explore all of my teas from different countries and different styles. I would read any book I could find about tea to learn about the differences in processing and the characteristics based on where they were from. I would drink many cups of tea and herbals each day and over time I noticed that I wasn’t get sick as much. The fatigue was still there, but I wasn’t getting the colds, sinus infections and bronchitis like I had in the past. Nothing really changed except that I was drinking so much better quality tea and herbs. I hadn’t known that I was inadvertently supporting my immune system. Once I realized this I continued to make tea an important part of my diet and it continues to this day.
The other benefit that I later came to realize is that my stress would reduce because I was turning my tea drinking into a ritual of mindfulness. When I didn’t focus on its preparation, it wouldn’t taste that great. But when I focused on all aspects of preparation and appreciated the finished infusion, it was life-changing for me. If I needed a pick-me-up – make a cup of tea. If I was having a mental block with my studies – make a cup of tea. If I was having an issue solving a problem – make a cup of tea. Making a cup of tea became my go-to to help bring about balance, re-center myself, rejuvenate myself, and to think more clearly. When I finished my cup, I was ready to jump back into whatever rat race I was dealing with and was able to cross whatever barrier had been in front of me.
By the late 1990’s I got a Master’s Degree from Stony Brook in TESOL (Teaching English to Speakers of Other Languages) and I began working full time in business to support myself after my divorce from my first husband. I needed to prioritize having enough energy to work, so my social life and going to family gatherings took a back seat. I just didn’t have enough energy to do both and couldn’t jeopardize a relapse that would force me to leave employment. I loved the business environment and my bosses would give me lots of projects that I eagerly took on. I worked my way up the ladder and implemented procedures and ran teams that resulted in part of the company’s growth. My fatigue was still there, but it was my “normal” fatigue, the one I was familiar with and the one that was tolerable. My research in nutrition, vitamin and mineral supplementation, and my tea all seemed to be keeping me at a status quo – I was productive and functioning despite the fatigue and not getting sick with colds, sinus infections and bronchitis. I started a job I loved in a corporate environment in 2000. Again, I was given lots of projects and responsibilities. I managed different customer service teams, was put on interdepartmental teams for a few company-wide projects, was a product and merchandising manager for several product lines, and was responsible for developing and delivering a department-wide system training program for 150 associates. I loved the challenge and I wasn’t bored. I was on a solid career path.
But this too only lasted a few years. I was there for seven years – the longest job I ever had up to that point, but four of the years weren’t great. I had gotten a C. diff infection early on, I needed surgery for aggressive abnormal cell growth, I developed allergies and asthma, more extreme fatigue returned, and muscle and joint pain began. In addition, I started having neurological issues and shooting pains would travel through my body periodically, sometimes so severe in my legs that I would collapse if I were standing when it happened and a few times I fell trying to get out of bed in the morning. The neurologist I saw for these issues found nothing wrong with me and said that I just had to push myself. I was diagnosed with Premature Ovarian Failure (sort of like an early menopause) at 34. And I don’t have much recall of anything that happened between 2005 and 2007 when I left employment at the company – this is what I call my “blackout” period. During that time I had seen specialists of all kinds and even turned toward acupuncture and a chiropractor and his recommended supplements. I did two elimination diets during this time, but there was no change. I had been on short-term disability a few times because I couldn’t function, but to no avail. It has never mattered how much rest I get – I am always fatigued. I didn’t want to leave my job, but felt it was not fair to my employer or my direct reports to have someone in my position that was barely functioning. And little did I know that my biggest battles were yet to come.
I started my tea business in 2007 after leaving my last job, mainly because I didn’t want to be bored and I needed to do something. I could’ve applied for disability, but that is not for me. And I didn’t want to start another job only to leave sometime after. I figured that starting my own company would give me a certain relative freedom and I could schedule my work hours around the time that had the least strain on my body. I did home tea tasting parties, lectures and tastings in local libraries and for other organizations, and became a vendor at craft and gift shows, street fairs, local craft shows in the malls, and anywhere else I could exhibit. And that’s where I met so many of you! The fairs and festivals were on the weekends and I was able to conserve my energy during the week leading up to the event and then had the week after to recover before the next one.
It was around this time that I was diagnosed with hypothyroidism and put on Levothyroxine. Not long after starting the medication I began to not feel well. I became extremely winded from the slightest activity. I would have to sit down at the half-way point walking up the stairs in my house. I would get exhausted and out-of-breath lifting a box. I couldn’t understand why I felt this way and made an appointment with my doctor. He had me do a holter monitor test and the results ended up with me being put on a beta-blocker. I then had to start seeing a cardiologist due to the issues that arose with the heart rhythm. But this didn’t make sense to me – I only started feeling this way AFTER I started taking the Levothyroxine. I did some research and found out that the new issue with my heart rhythm was a side effect from the medication. I saw my cardiologist shortly after and told him that I was stopping the beta-blocker and the Levoythyroxine. He told me that I couldn’t do that because my doctor had prescribed it to me. I explained that I never had these issues prior to taking the Levothyroxine and that this medication was causing them. He scolded me saying that I am not allowed to stop taking a medication that has been prescribed by my doctor. I told him that it is my body and I don’t believe in taking something that is causing me ill-effects and then taking another medication to address the side effects. I explained that I would be having the same conversation with my primary care doctor and that there would be no further discussion – my decision was made.
The conversation with my primary care doctor was similar to the one I had with the cardiologist. He suggested other medications, which I tried over a period of time, but still had side effects. I had done some research and explained that I was going to try some natural ways to try to balance my thyroid levels. Nothing worked and every time I visited my doctor during the next few years and got blood work done, my thyroid levels were still not where they should be. I would ask lots of questions during my visits, questions that would try to help me understand what was going on in my body and to try to connect the dots between all the symptoms that I was experiencing. I could tell that he was getting frustrated and he asked me why I ask so many questions. During another visit, he had prescribed a medication and I asked him what the medication was for, what potential side effects I should look out for, etc. His reply was, “Don’t you trust me?” I had one tenuous visit during which he said I needed to be on thyroid medication; I disagreed. He yelled at me asking if I knew what would happen to my body as I got older if I didn’t take the medicine. I yelled back saying I’m more concerned about what the medication would do to my body now. He looked at me quizzically and asked what I thought it would do to my body. I sniped back that he should have all the details on my history with these meds in my file that was in his hand. I finally realized that I had to be my own advocate for my well-being. I was done with blindly taking what a doctor said to me and vowed to challenge and ask lots of questions with every doctor I would see. I was the one, after all, that was experiencing the side effects of the medications and I already had enough issues to deal with.
Within a few years my fasting glucose and A1C were consistently elevated. I was diagnosed with pre-diabetes and insulin resistance. I was surprised because I very rarely ate sweets or processed foods. My diet was a varied, whole-foods diet, mostly plant-based with some meat and dairy, and mostly comprised of colorful healthy vegetables and fruits, grains, beans, and legumes – probably closest to the Mediterranean Diet. I started seeing an endocrinologist for this issue and during my last visit with her she handed me a pamphlet telling me “these are the foods you need to eat”. I glanced at the pamphlet and told her that these are the foods I eat regularly. She repeated that I needed to eat the foods listed and I replied saying that it must be something else because these are the foods I eat. This IS my diet. She shrugged her shoulders, turned to walk out of the room, and told me to come back in six months. I muttered what she was going to do for me in six months that she wasn’t doing for me now. I never returned to see her – couldn’t really see the point of wasting my time and having my insurance pay her for an office visit and lack of care.
The next several years consisted of seeing all kinds of specialists – neurologist, rheumatologist, immunologist, alternative and integrative medicine practitioners. I collected a series of additional diagnoses - Fibromyalgia, Reynaud’s (which, as it turns out, I have had since I was a child), Sjogren’s Syndrome, and I increasingly became unable to adapt to heat and humidity. I most likely had the Sjogren’s for many years before it was finally diagnosed because I had had very dry eyes and dry mouth for over 10 years. I was no longer able to wear contact lenses because the dryness in my eyes would rip them apart within five minutes of putting them in and my eyes always feel like they have grit in them, even with the use of eye drops. I am always thirsty and have to drink constantly to prevent my mouth and throat from getting too dry and the resultant dry, hacking cough that can quickly get out of control.
I don’t remember at this point what the issue was, but my primary care physician suggested that I see a neurologist to explore whatever the issue was further. Some tests were performed and they didn’t show anything specific. The doctor told me that there was nothing wrong with me and that he thought I was depressed. He put me on an antidepressant and suggested that I see a psychologist. I didn’t necessarily agree with the diagnosis, as I have never felt like I was depressed. I always tried to not let my symptoms impact my outlook and I would always push myself as much as I could, usually to where I believed the point of no return was. I have tried to remain positive and I know that mindset is extremely important in everything we do throughout our lives. But the reality is that when you have an actual physical limitation, mindset can only take you so far – the limitation is still there. My physical symptoms were a part of me, but I never identified myself as someone who was ill – they were just a hurdle that I needed to overcome. Despite my beliefs, I figured the depression and psychological aspect were other avenues to explore and I wanted to see if anything would improve, so I took the medicine and saw a psychologist. Results? Nothing. I didn’t feel any different being on the medication and the therapy sessions were a complete waste of time. I stopped taking the meds after several months and I stopped seeing the therapist shortly after Christmas that year. My last session solidified my instincts when the therapist asked me what my husband gave me for Christmas. I excitedly told him that I got everything I wanted – some high quality chocolate bars, a nice bottle of Scotch and two bottles of good quality red wine to enjoy together. He seemed puzzled and asked me what kind of jewelry I received. I told him none because I don’t wear jewelry and that I told my husband years ago to stop buying it for me. Don’t get me wrong – my husband has bought me some beautiful pieces, but they are in their boxes in a drawer, are rarely worn, and I would rather he buy gifts that we can both enjoy together. The psychologist did not seem to understand my position and he told me that he “couldn’t figure me out”. Frankly, at that point, I really didn’t care and he lost my respect because he was not supposed to pass judgement. I have never, nor will ever, do things or think a certain way based on how someone else thinks I should be or think. Clearly he wasn’t the right psychologist for me, so I never returned.
Every year new imbalances were coming out in my blood work and there seemed to be a new diagnosis, but zero answers about the underlying mechanism behind the issue or what I could do to mitigate the symptoms. And I couldn’t help but think that all my symptoms and everything I was experiencing was somehow connected. I tried having this conversation with my doctor, but was told there were no connections. I know I didn’t have the proof and I didn’t really have a good understanding about how the body works, so I couldn’t effectively argue my position, but my gut was telling me that everything was linked. I have never really been interested in diagnoses – to me they are just a label that identifies a collection of symptoms and there haven’t been any solutions. I began to see an MD who practiced complementary modalities specifically for Chronic Fatigue Syndrome and Fibromyalgia. During all these years I tried multiple different elimination diets, various supplements worth hundreds, if not thousands, of dollars, gamma globulin infusions, and other various cocktails of IV treatments. I probably easily spent over $15,000 out-of-pocket over the years, but did not feel a difference. I learned how to listen to my body, but the problem was that I didn’t know what it was saying or how to interpret the messages that it was sending. I knew something was wrong deeper down and all the symptoms and issues were connected somehow, I just didn’t know how to understand what my body was saying and to put all the information together. All this time I continued to educate myself and I began to dabble with herbalism. I was intrigued with the herbs and experimented with lots of them to see if I would get any benefits – I was the perfect “guinea pig” after all. I’ve never gotten any relief from the fatigue, but they have been beneficial for additional stress relief, adrenal and immune support.
I decided to open my shop in 2013. It was never part of my plan, but the fairs, festivals and craft and gift shows were dwindling. It is not that I didn’t want to have a retail tea shop; I just wasn’t confident that I would be able to physically handle what was required. I made the decision knowing that I could always close if I ended up relapsing. It would be a good test and then I would have no regrets wondering what could have been. I loved the idea of having a permanent place and being able to serve tea and hold the educational workshops that I love to do. What I never expected was the wonderful community that would arise within the shop, the experiences and the friendships that would form, and the sanctuary that my shop would become for so many of you and for me too. So when I opened the shop I figured it would be no big deal to close if I needed to; however, as time went on this would no longer be such a simple decision. I absolutely love what I do and all of you have given me such purpose and your support has meant the world to me. The decision to close will not be an easy one for me, so instead I have resorted to making changes to the hours and operations in the shop over the past several years so that I can keep it open and get past the physical challenges.
I never really had any gastrointestinal issues, maybe just every once in a while like everyone else. However, in early 2016 I began to have a lot of gastrointestinal issues and intense migraines that would occur almost daily. I will spare the details here, but my symptoms became so intense that I never wanted to be far from a bathroom. I stopped doing social activities and vacations were no longer enjoyable because I wouldn’t want to leave the room due to fatigue, the migraines, and needing to be near a bathroom. I saw a gastroenterologist who diagnosed me with Irritable Bowel Syndrome (IBS) and Small Intestine Bowel Overgrowth (SIBO). The treatment provided relief for a short time, after which the symptoms all came back. My intense fatigue returned and so did intense muscle and joint pain. I was constantly bloated and nauseous, my abdomen was sensitive and I looked like I was pregnant. I saw my primary care doctor and asked him about the possibility of gluten causing the issues I was having. He didn’t seem to think there was a correlation with gluten or any other foods. I figured I didn’t need his permission, so I did a test and went gluten-free. I noticed a little bit of an improvement after a week and continued for an entire month, but the issues never went away completely. After that I would eat foods with gluten every now and then, but not as much as I had before my experiment. My symptoms continued and in early 2017 I decided to experiment with the blood-type diet – I was desperate and looking for anything that would provide relief. I found some relief following this method, but by the time summer arrived I was seriously considering closing the shop. The fatigue, pain, migraines and gastrointestinal issues were taking a toll and I was in a downward spiral.
I was so desperate in the summer of 2017 and once again I started researching practitioners who might be able to help. I found a naturopathic doctor online and I reached out to briefly explain my history, that I was looking for a partner in my health, and if she had experience in working with similar clients. I was immediately impressed during my first visit when she explained that I didn’t have hypothyroidism – my body was producing T4 (what’s in Levothyroxine), but it looked like my body wasn’t doing a good job converting it to T3. She confirmed what I was experiencing all those years ago when I had the side effects from the thyroid medications and I felt relieved to know that my instincts were right to discontinue those meds, in spite of my doctor’s insistence. She also indicated that my very high vitamin B12 levels may be a result of not being able to absorb it due to a potential genetic SNP, which was later confirmed after doing genetic testing. The genetic testing identified additional areas where I needed support through supplementation, particularly in the areas of detoxification. We also did heavy metal, gut microbiome, and food sensitivity testing. I was elevated in a few heavy metals, my gut microbiome was in bad shape and I had dysbiosis, and I was sensitive to many of the foods that I was eating. What I found fascinating with some of the test results is that I can never be a vegetarian based on my genetics – I need to eat meat as part of my healthy diet. We started working on reducing the inflammation in my body by eliminating the sensitive foods, improving my gut health and reducing my fasting glucose and A1C levels. It turns out that beans, legumes, grains, starchy vegetables, and fruit were causing inflammation in my body and impacting my blood sugar, so I needed to reduce my intake of them. This was absolutely shocking to me because these were healthy foods that we are told should be included in a healthy diet and the plant proteins are a good replacement for meat. But not for me and my bio-individuality! We made some progress, but my fatigue, blood sugar, and gastrointestinal issues never went away completely and summers were still a very difficult time of year for me during which I would have a lot of inflammation, pain, and brain fog. The brain fog had been happening every now and then and it started to grow into a more consistent inconvenience that I was attributing to the fatigue.
In 2019 new issues arose and, overall, it was not a good year. Sometime in late winter or early spring I started to have neurological issues, including tremors that made serving hot tea at the bar a bit challenging without spilling. I became clumsy and would spill and drop things and my balance became worse as the year went on. The summer was particularly difficult and I began to have memory issues, difficulty remembering some customers’ names and recognizing faces. I would forget words, lose my train of thought during conversation, and was getting confused. One particular instance that I can remember because it made such an imprint in my mind was when a long-time customer who I’ve known for at least ten years came into my shop. I didn’t recognize her; there wasn’t even a shred of familiarity. She said “it’s me”, followed by her name. I played along because I was so embarrassed to not be able to recall who she was – something that many of you know is very uncharacteristic for me. Another incident shortly thereafter involved me getting lost while driving to a place I’ve been to many times before. I was having difficulty getting through a day at the shop and on a few days I needed to close early because I felt like I was going to collapse and it was becoming very difficult to function. I knew I couldn’t continue to keep the shop open like this and I met with my naturopath to discuss my concerns with her. I tried to contain my emotion, but I ended up bursting into tears because of the fear that I was developing dementia. There isn’t much in life that I fear – dementia is one of the few things that are on this list. My brain, my memory, and ability to think through any challenge put before me has enabled me to compensate for the physical limitations that I have had for so long. She said she wanted to run another test to check for something else and she suggested that I also make an appointment with a neurologist and rheumatologist to rule out multiple sclerosis.
Fortunately I did not test positive for multiple sclerosis; however, my Sjogren’s was active and the rheumatologist found that I had an issue with the complement part of my immune system. I also tested positive for Toxic Mold Illness, a condition in which the mycotoxins created from mold exposure can devastate so many systems in the body including the nervous, endocrine, and gastrointestinal systems and it can cause chronic systemic inflammation. It can have severe effects on the brain and I had very high levels in five of the eleven known mycotoxins tested and elevations in two additional ones. My internal terrain was in a weakened state, so it was ripe for the mycotoxins to run wild and take over, and I had probably been affected by it for many years. Toxic mold is very difficult to eradicate and I immediately began a strict protocol to combat it. I needed to completely eliminate beans, legumes, grains, mushrooms, dried fruit and some other healthy foods, stop drinking alcohol (I’ve never been a big drinker, but I do appreciate a well-crafted Scotch or other whiskey), and I was put on an herbal program to support my body and help clear the mycotoxins from it. Please do not eliminate these healthy foods from your own diet because you have inflammation. These healthy foods, were not beneficial for me at the moment because of my own unique, bio-individualized metabolic dysfunction that exists in my body. In addition to the diet changes, I looked for the sources of the mold; all of the elevated mycotoxin results indicated the source was from a water-damaged building, which I knew immediately was the shop. The place I love to be was making me sick! L My husband and I improved the air filtration in our home and especially in the shop. Two years later I am still clearing the mycotoxins from my system. A recent re-test has shown that most have been eliminated, but the one level that was originally off-the-charts is still elevated.
In late 2019 another issue arose and it turned out that I needed to have a second surgery to remove some aggressive, abnormal cell growth. My doctor wanted to do the surgery right away and she indicated that I needed pre-surgical clearance because of the issues I was having all year. I asked her if the surgery could wait until my January break and she reluctantly agreed. The busy autumn season had begun, the holiday season was around the corner, and closing the shop for the appointments that would be necessary was not an option. I would not return to my prior primary care doctor and I needed to find a new one in order to get the pre-surgical testing and clearance. The one I went to see was nice and I decided to “interview” him during the last appointment to see if he would be a good choice to be my primary care doctor. I asked him about his experience with autoimmune patients and I was surprised by his arrogant response of “I’m a doctor and I know everything”. Ok, strike one. I followed up by explaining that I have been dealing with autoimmune issues for about 30 years and over the years I have found that standard care and prescription medications have caused additional issues. I also explained that I have needed to think outside the box and try alternative methods in order to try to find relief for my symptoms. His response was “don’t worry, we’ll put you back in the box”. Strike two and there would be no more questions. I was amazed at his hubris and, yes, he failed the interview.
With my body ravaged from the mycotoxins and a busy autumn and holiday season in the shop, I had made the difficult decision in January 2020 that I would need to close the shop an additional day and shorten the hours on most days. Even though the mycotoxin elimination program was working, I was still fatigued and in pain and I needed to give my body more time to heal away from the physical and mental challenges of working in the shop. I love what I do and working in the shop, the atmosphere and the daily challenges. However, truthfully, the demands of working in the shop and my 70- to 90-hour work week is not ideal for an actively autoimmune body. Unfortunately, over the years I have needed to reduce the number of days the shop is open, reduce the operating hours, remove the relaxing seating in the shop, cut back on the tasting workshops, and implement a strict end-of-day closure. I never wanted to implement these changes or be so rigid because I love what I do; however, I needed to implement them in order to prevent a complete relapse and keep the shop open. I have developed strategies over the decades to keep me active and engaged as much as possible and a major part of my strategy has been to live in a very structured manner in order to manage my depleted energy levels. I also learned to think differently and have become efficient and effective in how I operate. This has allowed me to accomplish the amount of activity that I can daily. But even with my strategies and mindset, I still could not overcome the physical issues that were present daily. Each of the changes made in the shop came at a time when I was having great difficulty in functioning. I was strongly considering closing the shop and the changes were a last ditch effort, along with digging further into my research on possible causes and solutions. I communicated in February 2020’s newsletter about the changes that would take place in March with an explanation that I needed to make this change due to the flare one of my autoimmune conditions. I felt the need to provide an explanation because there had been so many changes over the years that those of you who have been visiting for a while would have noticed.
In March COVID officially made itself known here in NY. I had been following the virus since January and had already started supporting my immune system. I immediately realized the risk that the virus would potentially pose to clients in the shop and to me personally, since my shop is so experiential and, well, a closet that does not allow for social distancing. I closed the shop to general traffic in order to reduce any potential risks to us all and immediately started digging in for any information I could find about the virus and what we could do to arm ourselves with the necessary tools to fight it off if we got it. I had stocked up on key teas and herbs beforehand because I knew they would be needed and I thought it necessary to offer the Saturday pre-order pick-up option so that you all could continue to get the immune support and stress relief that would be so critical. Not much changed for me because the way I had been living for decades had prepared me well for COVID. I learned a lot of information about COVID, which I will not share here, but the fear that was so prevalent in the news led to so many people feeling so powerless, stressed, and anxious. I don’t believe making decisions from a position of fear leads to a good outcome and I believe everyone should have accurate information and be empowered to make informed choices that are best for themselves. The one thing that I did conclude early on during COVID was that long-term diet and lifestyle choices had a huge impact in the outcome of many COVID cases.
Even though I strongly believe in the power of teas and tisanes and how they can successfully be incorporated into a healthy lifestyle, I am intricately aware of the fact that they alone cannot always provide the desired results or “fix” some of the health and wellness issues that are so prevalent. Teas and herbs have been a major part of my health regimen for over twenty years, along with a lot of other healthy diet and lifestyle practices. Even though I have been doing “everything right” for decades, I still inexplicably experienced many symptoms that have severely impacted how I live and my quality of life, affected my social life and relationships with family and friends, caused me to leave jobs that I loved, and impacted my income potential. I learned a long time ago that I needed to be my own health advocate and that would only happen by empowering myself through education. True to my nature with personality types of ISTP and a transformed Enneagram 8, I took control and did whatever I could to identify and solve the problem. I have researched vitamins, minerals, and nutrition. I have read too many books and research papers to count, attended lectures on natural health, participated in trainings on various topics related to my symptoms. I have been studying herbalism for over ten years, have taken Anatomy & Physiology for herbalists, studied phytonutrients and herbal constituents, and the ways tea and herbals support health. So I was more than intrigued when I heard about the Functional Diagnostic Nutrition (FDN) certification program, which focuses on a bio-individualized functional approach to identifying and resolving root-cause wellness issues. I enrolled in this intensive certification program to see what additional information I could learn and if I would be able to take away any nuggets that would provide benefit for me. The program was simply mind-expanding and mind-blowing and offered information that was contrary to what I had been hearing from some natural health practitioners. Going through the materials was personal and elicited strong emotions because I felt like they were written specifically to explain my issues. I remember tears welling up during several of the modules because I FINALLY had some answers…after all these years and what I have been through. Of doctors telling me there was nothing wrong, that it was all in my head, or that I just had to push myself…but here were some answers that explained how crappy I was feeling for so long and why pushing myself would result in relapse. It all started to make sense and this new information motivated me even more to learn everything I could.
I immediately started to make additional lifestyle changes based on what I was learning. I performed all the functional lab tests that are part of the program and I added in a few more based on my issues. I was surprised that I had so much metabolic dysfunction in my body, but I was happy to learn that here was the evidence regarding my symptoms and how poorly I have felt for so many years. I had cortisol dysregulation and my hormones were in the toilet. I had intestinal permeability (leaky gut), gut dysbiosis, candida overgrowth, gut inflammation, reduced gut immunity, and new food sensitivities. It gave me mental relief and a direction for the development and implementation of a protocol that was based on my unique bio-individuality. I started feeling a little better, but the fatigue and pain were still persistent months later. One major improvement that I did notice, however, is that a lump under my left armpit diminished. This was a painful, hard, and swollen lymph node that had been there for many years and it was closely examined every year during my mammogram. Today, this congested area in my lymphatic system is completely normal – no pain, hardness, or swelling.
In early 2021 I started to suspect that I had not been able to identify a key area of imbalance, so I kept digging and took a functional lab test to determine how well my body was digesting my food and assimilating and absorbing the nutrients. I was not surprised when the results came back that I was having difficulty digesting protein and I most likely was also having issues digesting fats and carbs as well. I was already taking digestive enzymes and it was clear that the inability to digest my foods was a major problem. I was experiencing some digestive symptoms again and the SIBO had returned, not surprising since I have had issues with unexplainable constipation for the past few years. I discussed with my naturopath a plan that I was thinking about doing in June when my shop would be closed. It was a radical plan that involved taking myself off of all food in a safe way. The plan was extreme and she was not 100% on board, but I explained that it was the only way of determining if all of my issues – my fatigue, my pain, my intermittent brain fog – were a result of these newly identified digestive issues. I figured if food was the issue, then let me remove this variable and see what happens. I told her that I would need several months to pull my plan together, purchase the necessary supplies, and mentally prepare.
It was also about this time that I found out I had anywhere from 8% to 10% bone loss in my lower spine, hip, and femur. This was a complete shock to me because I am active. I am on my feet all day on the days I work at the shop and I am also very active the other days that I work from home. I have been on hormone replacement to protect my bones, since I went into “menopause” at 34, I eat a very good diet, and I use quality supplements where necessary. It appeared that my digestive issues may be causing a problem here too due to the lack of proper breakdown and absorption of the necessary nutrients. Even though my bone mass was still in the “normal” range, I did not like the fact that I had lost so much percent bone mass in two years and I mentioned my concern to my gynecologist. She told me that there was no issue because it was still in the normal range and that we would check it again in two years. I left the office and immediately put a protocol in place to mitigate any more potential bone loss. I didn’t want to wait two years to find out that I lost more bone and then get an osteopenia diagnosis – it’s very difficult to build it back. I would rather be proactive and try to head off another problem before it gets worse and irreversible. I discussed the issue and my concern with my naturopath in my next appointment. She agreed with my concerns about the percentage of loss within the two-year period, regardless of whether the results were in the normal range. In addition, another functional lab test showed that my neurotransmitters were off and many of my vitamin, antioxidant, and other key nutrient levels were low. My naturopath helped me adjust my protocol to address these issues, but all the data points were pointing in the direction of digestion, absorption, and assimilation issues as being a key underlying obstacle.
The protocol I did in June in which I took myself off of all food was difficult at first. My plan each day included getting enough basic nutrients to support my body, some work, and activities that would support my body, mind and spirit. I was using this time as a reset and to only following wellness supporting and building activities. Mentally I was good and I didn’t have any cravings or issues following my protocol; however, I almost gave up after the fourth day due to the flu-like symptoms that were present. Almost from the beginning I had migraines, fatigue so extreme I slept a good part of the day, weakness and aching all over my body. This was a detoxification reaction called “herxing” and I was surprised at how strong the reaction was. The severity of the symptoms was not as strong on day five and I decided to continue for two more days if I could. I ended up doing the protocol for the entire three weeks that I was hoping for in order to get the best possible opportunity to heal and reset my gut…and I felt great and nourished. I didn’t have any fatigue or pain and my muscles felt pliable and different in a good way than they have in decades. After the protocol, I slowly started re-introducing foods a few at a time to see if I was having any reactions to them. Unfortunately, the issues with digesting macronutrients never resolved and a test confirmed that I had very low stomach acid. I implemented another protocol and keep fine-tuning my protocols as needed.
I have never forgotten who I am or what I am capable of accomplishing. One of my biggest frustrations has been feeling like a prisoner in my own body, that I felt like I should be able to do more than my body would allow me to. It has been a long journey to identify the obstacles that have been in my path to wellness and I am happy that I have listened to my intuition to drive me to stand strong and educate myself to get to this point. I never believed that I was sick, just that I needed to identify and remove the imbalances or whatever the problem was. I had this philosophy decades ago, long before I even heard of herbalism, and I felt at home when I learned about the vitalist herbalism tradition. There are many tenets to this branch of herbalism, but two of the key principles that strike a chord with me is that the body has a vitality that circulates throughout and that it wants to naturally heal and will do so if all obstacles are removed. The surprising thing for me is that I thought I was doing the “right” things for my body based on all the information about natural health and healthy diet that is available, but some of these healthy foods were not right for MY body and they contributed to the dysfunction. I am amazed at the results that I have realized in the application of what I have learned in this certification program to become an FDN Practitioner, all the changes I implemented, the June protocol, and subsequent revisions to my protocols. In has taken a lot of hard work and dedication to get to this point, but it has been worth it! For the first time in over twenty years, I have no pain in my body and I have actually been able to get out of bed every morning for the past several months with no issues. This is huge for me because for thirty-two years getting out of bed in the morning was my first challenge of the day. I would need to allow two hours to get moving and I would exhaust quickly if I rushed. But for the past four months I have been able to get up without an alarm, do my morning stretching and mindfulness practice. I lost 13 pounds of inflammation, my thyroid levels are normal, my brain fog is gone, and I have more energy than I have had in decades. For the past four months I have been in a strength-training program as part of my bone health strategy and a little more than a month ago I introduced an easy elliptical workout that I am slowly building up. I am so excited that I have been able to continue this exercise regimen without relapsing into debilitating fatigue. Today, the only prescription medications that I take are for hormone replacement and I’m working toward eventually eliminating these as well. If I had stayed on the conventional path, I would probably be on ten medications right now because there was a point about ten years ago that I was on seven different meds. I knew in my gut that something was imbalanced – I just never could have imagined how much dysfunction was actually in my body. A future of the illnesses that are so prevalent in our society, being chronically inflamed, more physical debilitation, and dependence on others has never been appealing to me. Even though I need to continue on my healing journey for some time, I feel better today at 50 than I have for the past thirty-two years. I have many more good days than bad, I feel empowered with the knowledge that I need to make the right choices for my bio-individualized wellness, I finally feel liberated and look forward to a future filled with energy, activity, travel, vitality, and independence. I had a lot to be thankful for and celebrate on October 10th as my thirty-two-year anniversary of feeling unwell, chronic inflammation, fatigue and pain transformed into the start of a new clock to mark my renewal and finding wellness and vitality. I am very much looking forward to enjoying the next thirty-two years and beyond!
My experience is not unique and I want these results for anyone who is dealing with issues that are impacting their well-being. I know that there will be many reasons why we may not work together in this capacity – it is not necessary, commitment, financial, not ready to make the necessary lifestyle changes, etc. And so I would like to leave you with this thought – life is short and there are no do-overs. You are in the driver’s seat of your life and it is never too late to begin to advocate for your well-being. You deserve a partner in your health to ensure that you feel your best now and into the future. If you feel that you are not currently receiving this from a provider, then find a new one. Don’t hesitate to ask questions and keep asking them until you get your answers and/or feel comfortable taking a new medication or getting surgery. Listen to your gut and if something doesn’t feel right, then listen and try to figure out what your body is saying. Nobody knows how you are feeling better than you. And lastly, your genetics are not necessarily your destiny. It is the epigenetics – how your genes get expressed through diet and lifestyle choices – that is what really matters and you have control over this. The power is yours and it is never too late to start your own wellness journey!
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