(Start with Backstory #1)
- Backstory #1
[Note: This post may be updated in the future if more information is available.]
How did we get here?
I don’t know if we will ever know for sure. And, what we know right now might change tomorrow. The number of doctors who have told me that my case is complicated is high. (In fact, I was told that my case is complicated by 3 different practitioners and/or new patient coordinators this week alone.) I hesitate to share things without knowing for sure, but I know it may help someone else if I do.
Here is the latest guess from my previous doctor in basic terms:
I was born 8 weeks premature via C-section and almost died. My body did not fully develop and did not develop a healthy microbiome. From what I have been told, I had many ear infections, allergies/sensitivities, etc. early on in my life, and this put a strain on my system as a whole.
Then, as everyone does, I have gone through life coming into contact with various stressors (pathogens, toxins, environmental stressors, emotional stressors, trauma of varying kinds, etc.) that have built up and taken a toll on my body. As I have known for many years, the body is all connected. [See image below for a visual]
This previous doctor told me that I should have probably died over 10 years ago given the current state of my physical body, but by sheer willpower, I am still here. However, willpower can only take me so far.
Some of the doctors who have treated me have provided me with some clues, but we have to find more answers in order to help my body continue to survive, and then hopefully, thrive.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
- Backstory #2
[Note: This post may be updated in the future if more information is available.]
I started having new symptoms when I was around 14-years-old. At this age, I developed a skin rash on my scalp that was diagnosed as “just dandruff” by doctors for many years. I also began having more sinus infections, heavy menstrual cycles, and more moles pop up on my stomach and back. I also had my first antibiotic-related vaginal yeast infection while I was on antibiotics for a sinus infection. Doctors prescribed hormonal birth control pills in an attempt to lighten my menstrual cycle bleeding. I didn’t think much of any of these things, and doctors were not concerned. At some point, I also became more sensitive to personal hygiene products and detergents.
When I was 16-years-old, I started noticing fatigue. Again, doctors were not concerned, and didn’t find anything of note.
Around age 19, a little more than my usual amount of hair started coming out in the shower, but I had thick hair, so I didn’t think much of it. I do remember that my roommate at the time would comment on how much hair I left in the shower. I also started getting more acute upper respiratory infections. The fatigue also worsened. (Last month, I read an old journal entry from around this time in my life, and I had written that I was going to the doctor to try to figure out why I was so tired, but nothing else was written about it after that.)
Doctors weren’t concerned at the time, so I wasn’t either. I just thought that I was a tired college student–even though I was an old soul and not out partying all of the time.
Were these clues that were missed along the way? According to some of my doctors, yes. Will we ever know for sure? I don’t know.
What I do know is that everything adds up in life to create illness (pathogens, environmental stressors, emotional stressors, trauma of any kind, etc.). Illness doesn’t happen in a day.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #3
[Note: This post may be updated in the future if more information is available.]
In college, I started to have more frequent upper respiratory infections. I also became more sensitive to medications. At this time, cigarette smoke was also still around in restaurants and bars, and I became more sensitive to cigarette smoke even though I wasn’t a smoker. I would get raging headaches from being in the same building.
My senior year of college, I started having pain in my intestines and uterus. My menstrual bleeding became even heavier. I also started getting cyclic migraines. My doctors were confused, because my symptoms didn’t seem to completely match anything. A women’s reproductive inflammatory disease was discussed, but the doctors believed that the pain was likely caused by something else.
I just kept moving along . . . engagement to my wonderful husband, student teaching, job applications, wedding.
My first year of teaching was unremarkable in terms of physical illness. However, a student threatened to kill me when speaking to another teacher, so it was emotionally stressful for sure.
My second year of teaching, I switched schools and was really excited for my new job. Almost immediately (and throughout the next 2 years), I had a variety of physical ailments: constant sinus infections, urinary tract infections, allergies, intestinal pain, paresthesia, vaginal yeast infections, a white coating on my tongue, etc. I was told that it was because I was a new teacher, and my immune system was not yet up for the challenge of being with that many germs all day. This explanation did not make any sense to me since I didn’t have any physical symptoms my first year teaching in a different school building. My doctors prescribed antibiotics over and over again, and I knew the antibiotics were just covering up the actual root cause(s) and also causing other problems due to overuse, so I would ask questions. Shouldn’t my immune system be able to fight off germs better than this? If antibiotics are only helping in the short-term, then what is the next step? Shouldn’t be we looking for the reason this is happening in order to prevent this from continuing to happen?
At the end of my first year in this new building, I found a large amount of mold on the bottom of some of the wood furniture in my main classroom. I also found out that the air ventilation system was not working correctly for the entire school year. Luckily, I was changing classrooms the following year, so I wasn’t overly concerned.
The second year at this building (my third year teaching overall), I was still having the same symptoms. I was referred to many specialists, tested for many illnesses, and nothing was detected. By this point, I was exhausted. When the doctors only had a few minutes to spend with me, I became a number. I knew that their explanations did not make sense, but when I tried to dig deeper, they started to get annoyed. And, when they couldn’t figure it out, some of them implied that it was all in my head, and that I just needed to reduce stress. At the end of the second year at this school, I decided to resign in order to try to get healthy and “reduce stress” as the doctors recommended. I didn’t feel like stress was the problem, but I was exhausted and willing to try anything. Also, even though doctors weren’t concerned about the mold exposure, I knew I needed to leave that building just in case that was contributing to the problem. I became a part-time substitute teacher to bring in as much income as possible.
I have since learned from personal experience, and also from our therapist who specializes in chronic illness and trauma, that many doctors blame the patient when they can’t figure out what is going on. However, at that time, as a person in my early to mid-twenties, I wasn’t sure how to respond. I was very confused.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #4
[Note: This post may be updated in the future if more information is available.]
By my mid-twenties, I had been referred to so many different specialists, and there weren’t many answers. Around this time, I was given the name of a Naturopathic Doctor who was highly recommended for being a detective and finding the root cause of illnesses. I decided to give it a try; it couldn’t hurt at this point. I have always felt like the body is all connected, so I was hopeful that this ND could look at the body as a whole and give me a fresh perspective. The only problem was that he was not covered by insurance, so this began the recurring theme of having to pay exorbitant amounts of money for my medical care.
Besides the financial strain, this doctor was a welcome relief. He was kind and patient and told me that it was not all in my head. He started by treating for candida overgrowth. He then helped me discover some major food sensitivities, and treated me for many years for food sensitivities, environmental sensitivities, and intestinal candida overgrowth. He also helped me partially desensitize from the known mold exposure in my former classroom/school. I am forever grateful to him for finding these things and for continuing to move me forward. He was ahead of the game in these areas. For a few years, we thought that we had gotten to the root cause of the issue. At the time, I didn’t know that the food and environmental sensitivities were actually just another symptom and not the root cause.
Around the same time that I became a patient of the ND, I decided that I should see a therapist for extra support. Since I believed (and still believe) that health includes body, mind, and spirit, I wanted to dive into some emotional aspects of my overall health. I wanted to make sure that I was tending to all aspects of my life, and that other stressors (besides the stress of being physically ill without any answers) or mental health challenges were not contributing to the problem. There was not a mental health diagnosis, but that didn’t matter.Overall, I was happy at this time. I was very much in love and loving married life. We had a healthy marriage and enjoyed spending time together. I was extremely grateful for his love and support during this time. However, I knew, even at that time, that the situation was impacting everyone who loved me. It is really difficult to watch someone you love struggle and not be able to help. Some of my family members really struggled during this time. I can’t even imagine their pain, and I love them for loving me so much.
Another situation was happening in my life at this time as well. A person in my family of origin was dealing with a mental health challenge. They had been incorrectly diagnosed previously, and now there was a more accurate diagnosis. Just like my situation was impacting everyone in my life, their situation was impacting everyone as well. I won’t go into specifics, because it is not my story to tell. However, since I am highly sensitive and feel the energy of others around me, it definitely added to the stress level at the time. A positive came out of this, though. There were many aspects of my childhood that were wonderful, but no one has a perfect childhood. Some aspects of my childhood that were confusing for me prior to this diagnosis now made more sense. [What I know for sure is that my family members are humans, and just like me, they do the best they can with the skills they have. Chronic illness (and Brene Brown 🤣) has taught me that. We are (mostly) all trying to do our best in this life.]
With everything going on in my life, and the lives of my family members, this period of time was difficult. I knew that a trained professional would be helpful for me, and I was right. She let me know that my feelings were normal and valid, and that “going through a shitty situation” is just as much of a valid reason to get support from a trained professional as is a mental health diagnosis.This therapist also told me that my health situation was not all in my head. She told me that this was more of a physical body challenge than a mental health challenge, but she encouraged me to keep making my mental health a priority since it is all connected.
I was a part-time substitute teacher for one year, and then I went back to teaching full-time at a different school. I was in a new building, teaching a new class, and I loved my students and colleagues. Life seemed almost normal for a while, except for the strict food sensitivity meal plan I had to continue to follow. After the initial shock and difficulty of changing my diet completely in a time when the well-known special diets we have today didn’t yet exist, I was actually grateful to have some answers and to be feeling better. If all we had to do was drastically change my diet, we could handle that. My husband was the best person to have in my corner for food modification since he likes to cook. It was definitely better than something more serious.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #5
[Note: This post may be updated in the future if more information is available.]
For a few years starting in my mid-twenties, we operated as (mostly) normal. I was still following my strict food sensitivity diet and taking supplements, but that wasn’t terrible by any means. The food and supplements were expensive, but that was the price we were willing to pay for better health.
I loved my new teaching job at my alma mater as a high school Gifted Education Specialist, and I loved my life as a whole. I continued to go to therapy when I needed to work through any emotional stressors that came up, but nothing really monumental happened. I was still a little hurt from the backlash and lack of support for seeing a Naturopath (this was when alternative medicine was more controversial than it is even today), so I wanted to make sure that I worked through those feelings. Also, my family member who was dealing with a mental health challenge was continuing to show signs of distress at varying times, so it was important for me to make sure I was taking care of myself and my mental health. Because mental health challenges are prevalent on one side of my family, I was diligent about asking if there was a mental health medication that would benefit me, and each time, I was told no by mental health professionals. None of them believed that mental health medication was the answer in my specific situation.
During this time, I didn’t feel my best physically, but I was surviving. If I caught a pathogen from a student, it would take me a little longer to get well, but I didn’t think much of it. I continued to see the Naturopath for check-ups, and we were glad that eliminating certain foods was helping to lower the inflammation in my body.
At some point, though, I realized that my body was still struggling physically. It was almost like eliminating the foods helped stall the root cause, but eventually, things started popping up again. I would come down with acute illnesses more than most, they would last longer, and everything got confusing again. I knew that my intestines should have been healing by this time, and I shouldn’t have had to stay on this strict of a diet for this long, so I started asking questions again. To my Naturopath’s credit, we did the best and most detailed testing there was at the time (not covered by insurance, of course), and a few things became evident, but nothing that couldn’t be tackled with a little effort.
In our late twenties, my husband’s father passed away suddenly and unexpectedly of undetermined natural causes. My husband is the only child (from his father), and his parents are divorced, so we had to plan the funeral, clean his house, move and sell his belongings, sell his house, and take care of other end-of-life tasks on our own. We had help from some of my family members (thank you), but the majority of the tasks and stress fell on us. We figured it out as a team, but it was definitely not something we saw coming in our late twenties. [Side note: Do your loved ones a favor. Please plan for your later years in life and for your death. It is very stressful for loved ones to handle these items when planning has not been completed prior.]
Throughout the next few years, we continued to notice that my health was declining in small ways instead of remaining steady like we thought it had been for a few years. We retested for more food sensitivities, environmental sensitivities, intestinal candida overgrowth, and other more common ailments, and a few items would show up. We would treat each item as it became known. We would do everything that was asked of us, but our lives became increasingly restricted in what we could do. We now needed to jump through 10 hoops each day for me to stay relatively healthy instead of 5 hoops each day. This was the beginning of removing things one-by-one (as suggested by doctors) until, one day, we woke up and noticed that our life was a shell of what it used to be. Don’t eat this food. Take this supplement at this time. Eat this food, but make sure not to eat it every day. Don’t cross-contaminate your food. Only drink water out of this expensive filtered system. Exercise this exact amount and in this specific way. Meditate. Reduce stress. Don’t use these personal hygiene products. Use only these types of household cleaners. It all did help me feel slightly better, so I was grateful at the time. However, I was also confused.
For our 10 year wedding anniversary, we wanted to try to go away together. We found a really nice resort in a tropical location that could meet my dietary restrictions. My husband called the resort on numerous occasions and planned my meals for me ahead of arriving at our destination. We had a good time . . . until we didn’t. 🤣 It turns out that the resort we chose had a giant bug problem and sprayed toxic chemicals throughout the entire resort all day and night. I had either food poisoning, sun poisoning, or toxin overload while we were there. Conventional doctors were baffled by my symptoms, as usual, but I kept seeking answers.
According to some of my recent doctors, all of my efforts during these years to stay curious and seek answers saved my life. My willingness to do whatever was asked of me by my doctors (in terms of diet restriction and environmental safeguards) and being diligent about my mental health kept my illness bucket from overflowing at an even faster rate.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #6
[Note: This post may be updated in the future if more information is available.]
In our mid-thirties, we moved to another house in our area. It had never been lived in, but it was 3 years old. It was the former model home of a slow-growing (at the time) neighborhood. This would be our second new home purchase. We understood early on in our marriage that living in newer homes was the best route for us in order to prevent as much mold exposure as possible and to prevent exposure to other known contaminants from living connected to others (we used to have cigarette smoke from neighbors come through the ceiling vents and walls at previous apartments/duplexes). Since I was a teacher, and we already had quite a few medical expenses and special food expenses for me, we could not afford new homes in the school district in which I taught, so we bought homes in surrounding areas that were new and also more affordable to save money for my expenses.
We were so excited for our new home. Since we were spending a lot of time in the kitchen for my food sensitivity meal plan, we wanted a more open floor plan that would allow us to cook and spend time in the living room at the same time. It wasn’t the biggest and best kitchen out there, but it was perfect for us. The only stressful part of the moving process was that there was a hiccup in the purchase of our old house (buyer’s fault), and we owned two houses for a little longer than we had anticipated.
About a month after moving into our new house, we had the windows open, and I got a raging headache. It was mid-April. I was nauseated and sensitive to light and sound. The headache lasted for a few days, but eventually it went away, and I didn’t think much of it at first.
About a month later (2 months after moving into our new house), I started to get more unusual symptoms again. I had chronic sinus inflammation, ear infections, eye problems, etc. At one appointment, I had black mucus come out of my ears when the doctor did an ear rinse.
We started to wonder if our new house had mold. So, we had a professional come out and look around. They did not see anything that would indicate mold, but they said that we could do an at-home mail-in mold test to make sure. We decided to do the test, and it came back negative for mold. That was a welcome relief.
So, what was the cause of these symptoms now? Was I getting mold exposure from somewhere else? Was it something else entirely? Conventional doctors did not have any ideas, but they had me start taking over-the-counter medications and doing ear rinses to try to keep the symptoms from getting worse.
No problem. I will not eat anything, drink anything, or do anything, and also add eye drops, sinus sprays, and ear rinses to my already packed daily routine and phone alarm schedule. In addition, we will now spend a large sum of money on expensive air purifiers for our new home.
Everything seems normal, right?
I continued to ask questions, and there continued to be no real help from conventional doctors.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #7
[Note: This post may be updated in the future if more information is available.]
Around a year later (still mid-thirties), my husband had some unresolved emotions from his childhood come to the surface. It was definitely the most difficult time in our marriage up until that point, and it was certainly a giant emotional stressor. To my husband’s credit, the same day he realized that he could use some professional assistance to work through the emotions and childhood trauma, he called, set up, and had his first phone appointment with the therapist. The very same day. The next day, he had his first in-person appointment. I offered to go with my husband to his therapy sessions, but the therapist wanted to work with my husband individually. With the help of this wonderful therapist, my husband was able to dig deep and do a lot of healing over the next 6 months or so. I went to one of the sessions near the end in order to learn more and be the support person, and the therapist told me that my husband was in the top 1% of all of the clients he had ever treated in terms of work ethic and determination to heal. I wasn’t surprised by this information, but I was definitely proud of him and glad for the choice I made to marry him. Even though it was an emotionally challenging time, the entire situation ended up bringing us even closer together.
Physically, I was struggling. I still had the white coating on my tongue from the year in my moldy classroom in my early 20s, so our Naturopath decided to continue to treat me for what was presumed to be candida overgrowth even though test results were inconclusive. I was also still having unusual upper respiratory symptoms, so he decided to run a specific in-depth test (not covered by insurance, of course) that detects pathogens. The results indicated that I had the Chicken Pox virus (duh!) and the Epstein-Barr virus (new info) in my body, but that neither virus was currently activated. I also had been exposed to Lyme Disease and other co-infections, but the medical director of the lab told my ND that my body had fought them off, and they were of no concern. I also tested positive for H. pylori and possibly mycoplasma pneumonia (too complicated to explain), and I was treated for H. pylori. I had hoped that H. pylori was the root cause of my some of my symptoms, but I wasn’t sure if that was the case. I wondered how much stress any or all of this had put on my body.
I had been tested for Epstein-Barr Virus, Lyme Disease, and other co-infections in my early twenties, but nothing came back positive at that time. Was this new and improved testing? Was this the standard version of testing and results vs. a separate private lab’s version of testing and results? Were these things missed before? And, why weren’t conventional doctors able to find any of these things prior to this point and with testing that was covered by insurance?
I was wary of the interpretation of the Lyme and other co-infections results, but I am not a medical care provider, so I let it go and kept moving forward.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #8
[Note: This post may be updated in the future if more information is available.]
About a year later (mid-to-upper 30s), I started having pain in both shoulders and both hands and feet. I had no idea what was happening. A friend of mine recommended a well-known physical therapist in our area, and he treated me for about 5 months. There was not an obvious reason for my shoulder pain, but the PT said that I needed the treatment. This was not covered by insurance at all until my deductible was met for the year. Well, as I have mentioned, most of my testing and treatment was not covered by insurance that year, so I had to pay for most of the PT treatment out-of-pocket. The deductible for the school district’s insurance was higher than the other insurance plan I could have been on through my husband, but the school district required teachers to be on their insurance plan at that time. I couldn’t believe that I finally had something that would be covered by insurance, but since it “looked” like I hadn’t spent any money on medical care that year as far as insurance was concerned, I still had to pay a majority of it out-of-pocket.
During this time, my cousin’s husband passed away unexpectedly from an accident. It was a terrible time for everyone, but especially for her and her two children. I was going to her house 2x per week after school to help out, and then I was going to PT 2-3x per week after school for treatment.
My PT treatment was helping, but he had me add in Dry Needling (not covered by insurance, of course) to my treatment plan in order to progress at a faster rate. I had never heard of dry needling, but I was willing to give it a try.
Eventually, my shoulders, hands, and feet were feeling better, and I was released from PT treatment.
About 3 months after being released from PT, I developed another cough. I thought it was a virus, so I tried to wait it out. When it didn’t go away for a few weeks, my doctor prescribed antibiotics, but the cough did not go away. I kept coughing for another month, and then I went back to the doctor. She did x-rays and prescribed an inhaler.
Near the end of the school year, we had to put our beloved dog down. We loved her so much! She was the best dog, and we were heartbroken. Anyone who loves animals knows how much of an emotional stressor that is.
Then, the end of the school year was happening, so I pushed through until the end of the year and hoped that the summer break would give me a chance to get rid of the lingering cough and become healthier.
Soon after the school year ended, I developed a vaginal infection. I thought for sure it was a vaginal candida (yeast) infection from the antibiotics, but it was not. The diagnosis was bacterial vaginosis. I had never heard of bacterial vaginosis, but I was told that it was not an STI (which I wasn’t worried about since all signs indicated that we were happily married, but thanks). Doctors usually prescribe vaginal antibiotic creams as a first line of treatment. I completed the treatment, but my vagina still felt like it was on fire. I was in so much pain. It hurt to urinate, so my doctor checked for a UTI, but it was clear. We had a family trip planned with our entire extended family on a cruise down the Mississippi River, and I didn’t want this situation to prevent us from spending time with family. Somehow, I made the trip, but it was a physical struggle the entire time. On the airplane ride home, I developed a fever and vomited multiple times. When we got off of the plane, I sat down on a chair in the airport and cried. I just wanted to go home.
At home, I could not stop vomiting. We contacted my Naturopath, and he thought maybe it was food poisoning. My throat was extremely sore, but it got (mostly) better once I stopped vomiting. Because we thought it might be food poisoning, we tried to wait it out. I was not sleeping. I was having really bad acid reflux, and it was causing my body to startle itself awake every hour or so. A few days later, I went to my conventional doctor’s office and was told that it was probably a combination of a virus and food poisoning. I specifically asked for a strep test to rule it out, and it came back positive. My doctor prescribed oral antibiotics for the strep. There wasn’t any treatment prescribed for the other ailments. I also developed an eye infection, so my eye doctor prescribed antibiotic eye drops.
The oral antibiotics helped with the strep throat, but my eye infection would not heal. I was also still having a lot of vaginal pain. Truthfully, my entire body was in pain. We went to see my Ob/Gyn, and she prescribed a different antibiotic for the vagina. I inquired about finding the root cause instead of continuing to treat with antibiotics, but she said antibiotics were the only option and the root cause wasn’t able to be determined. She told us to go see an Ob/Gyn specialist if my symptoms didn’t improve. [Side note: Until that moment, I did not know there were specialists for specialists.] Well, the antibiotics made my vaginal pain worse, so we went to see the Ob/Gyn specialist. He was sure it was a candida (yeast) infection from the antibiotics, but no yeast was found. He told us to come back in 2 weeks to do another yeast culture to see if the results would be different. The results were still negative. I asked about whether or not hormones could be the problem, and he told me that women at my age don’t have problems with their hormones. He made it obvious with his tone and attitude that he was tired of me and was not interested in being my doctor for much longer.
At this point in the summer, I could not sit down without being in extreme pain. I couldn’t even imagine wearing professional clothing and going back to school. I knew that my body was struggling, and doctors were not helpful at this time. I was at an all-time physical and emotional low, and I knew that I needed to put myself first. I knew that I needed to resign from my teaching job. I loved my students and colleagues, but I needed to make myself a priority.
My husband was completely supportive of my decision to resign. I asked my family if there was any work that was not super stressful that could be done for our family’s business using my skill set. They were supportive and said that they could use help in their compliance department, and that I would work closely with my oldest cousin. They said the compliance department was a well-oiled machine (in hindsight, maybe not the most accurate description at that time 🤣), and I would fit right in. Also, the job would give me more flexibility in my days and hours worked.
Within the span of 6 days, I had decided to resign, contacted our financial planner, looked into health insurance through my husband’s place of employment, talked to my family, informed colleagues and friends, informed the parents of my students (and told them to please tell their children), and moved my belongings out of my classroom. It was July, and I wanted to make sure the next teacher was able to move in and get settled as quickly as possible. It was an excruciatingly painful time for me, but I was very grateful for the support of my husband, family, friends, colleagues, school community, and school district. And, I was proud of myself for making the best decision for me in such a short amount of time.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #9
[Note: This post may be updated in the future if more information is available.]
I was hoping that resigning from my teaching job and reducing stress would help more than it actually did. The mind/body/spirit connection is powerful, and I had high hopes that less stress would have a major impact on my physical body. I am sure it helped, but not quite enough.
A few months later (still in my late 30s), when the Ob/Gyn specialist was out of ideas and ready to discard me as a patient, he recommended that I do pelvic floor physical therapy (partially covered by insurance when the deductible is met). I went to 3 appointments, and it made my pain worse at this stage of the journey.
About 5 months later, my paternal grandfather passed away. It was his time to go, but it was definitely an emotional stressor.
For the next 6 months, my Naturopath really tried to help me feel better, but my symptoms were not improving. I was having more pain in my upper abdomen, so we made an appointment with another GI specialist in our area. He recommended an upper endoscopy and found that I had erosive gastritis. Biopsies from the stomach showed chronic, nonspecific inflammation, but negative for H. pylori infection. [We had retested for H. pylori after the previous treatment to make sure it had worked, and this test confirmed those results.] The GI specialist prescribed a PPI for 30 days to help the stomach heal. I did not want to take a PPI, but I knew that I needed to try his treatment plan in order for him to continue working with me.
Unfortunately, the PPI made the pain worse. I stuck it out for 30 days to try to follow his treatment plan, but the pain kept getting worse. It was hard to eat, and I was losing weight.
I then asked for a gallbladder test to eliminate that as the problem. The results indicated that my gall bladder was functioning properly.
The GI specialist then suggested a prescription medication to relieve the symptoms. I knew that this medication would cover up the symptoms again instead of actually helping me find the root cause(s). Obviously, I was looking for the root cause(s), so this approach did not align with me.
I was out of ideas, and I was open to trying anything. One of my close friends told me about her positive experience with Neurofeedback (not covered by insurance, of course), and I decided to give it a try. Because of the gut-brain connection, I was hoping that retraining my brain would be the answer to all of my gut problems and more. Maybe I just needed to rewire my brain, and then the rest of my body would be good as new!
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #10
[Note: This post may be updated in the future if more information is available.]
We were now in our early 40s. Since the GI specialist in our area was no longer helping us move forward, we began searching for what to do next. At this point, my health was declining at a rapid rate.
I had previously heard about a functional medical doctor (not covered by insurance, of course) from the state of Nevada who worked with patients virtually. Functional medicine involves trying to find and treat the root cause instead of covering up symptoms, and since this functional doctor was an MD, he could also prescribe prescription medications if needed. I quickly made an appointment for an initial consultation. He listened to my story, asked me to send him my previous test results, and gave me a list of 4-5 at-home tests to order and complete (not covered by insurance, of course).The results for these tests indicated that I had Small Intestinal Bacterial Overgrowth (SIBO). We were elated to finally have some results that made the next steps clearer. My functional doctor said that my results were the worst he had ever seen, so that would explain my extreme pain. He said that there were multiple treatment options, and I told him that I wanted to take the most aggressive approach. I wanted to feel better, and I didn’t care about much else. The gold standard for treating SIBO was being on a special physician’s formula liquid diet that provides you with the nutrients you need, but also kills the SIBO. If this was the answer, then I was happy to do it.
Well, the liquid diet did not go as my functional doctor had planned. About 1 week into the treatment, I started having diarrhea. He said that he had never had that happen before, so he suggested that I keep going. I did, but I was definitely not feeling better. He said that we should keep going, and that some people need to be on it longer than the normal timeframe. He then added some antimicrobial supplements to the treatment plan. I ended up being on the liquid diet for too long, and we decided that I needed to get off of it and try solid food again. He told me to eat a low-FODMAP diet, and to slowly add in each new food. If the food caused pain, then take it back out of my diet.
I was also still doing Neurofeedback during this time. The Neurofeedback practitioner was well known in our area for being great at her job, and she was wonderful. She treated me for 3 months and told me that my brain was now functioning more optimally. Yay! However, my physical symptoms in the rest of my body had not improved, so she told me that she didn’t want to take any more of my money at this point. She told me that since my brain was now functioning more optimally, and the rest of my body was still struggling physically, the brain was not the primary cause of my physical ailments. She said that there was something else going on in my body that was causing my nervous system to stay on high alert (fight mode). She told me to keep searching for the root cause(s) of my physical symptoms.
The liquid diet also did not take care of my physical symptoms, so almost all of the food I added back into my diet caused pain. I asked the functional doctor how I was supposed to know if I was reacting negatively to a food if my stomach was not feeling better prior to adding in new foods. He didn’t have an answer, so he just said to keep trying to add low-FODMAP foods. I asked about the possibility of Small Intestinal Fungal Overgrowth (SIFO) along with SIBO since I had been treated for candida overgrowth on-and-off by my Naturopath for over 15 years, but my functional doctor did not believe SIFO was involved at this time.
About a month later, Covid-19 began. I was in the middle of trying to figure out foods that I could eat, and now I was wondering if I would be able to buy any foods that I could eat. As it was for everyone, Covid-19 was an emotional stressor to the max.
My functional doctor started to become confused about what I was reporting to him, so he asked me to complete another SIBO test along with some more at-home tests (not covered by insurance, of course). I did, and the answers were confusing. The SIBO appeared to be gone, but the symptoms were still there. He said that we should continue to treat the SIBO, because sometimes there are false negatives. He had me try some different antimicrobial supplements. Treatment continued like this for another 5 months.
At this point, it was getting obvious that he was running out of ideas. However, we didn’t know what to try next, so we continued to work with him. He was becoming frustrated with the fact that he couldn’t figure it out, so he started to blame me for many things even though I was the model patient. He then told me that I just needed to manifest good health. He told me to try meditation, and gave me a recommendation of a book to read about manifesting good health. I read about how to do this specific type of meditation, and as always, I was willing to give it a try.
A few months later, the Covid-19 vaccine became available to me. I asked the functional doctor for his recommendation for my body, and he recommended getting the vaccine. I ultimately chose to get vaccinated, because surviving and protecting others were my main priorities. If there were any consequences to this decision, I would have to deal with them later. I followed my doctor’s recommendation, and I made the best decision that I could at the time.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #11
[Note: This post may be updated in the future if more information is available.]
2021:
After about 6 months of consistently meditating and manifesting good health as suggested by my functional doctor, and about 2 months after receiving the second dose of the Covid-19 vaccine, I fainted in the shower and hit my head. I woke up very confused on the shower floor, climbed to my feet (bad idea), and called for my husband who was still sleeping. He woke up despite being a very heavy sleeper and having the white noise sound machine running in our bedroom. [Side note: He later attributed waking up out of a dead sleep to the fear in my voice. He says he will never forget what my voice sounded like when I called out to him that morning from the shower.] He ran into the bathroom just as I was fainting for the second time, and he caught me before I hit the ground. He turned off the water, laid me down the rest of the way on the shower floor, and was getting ready to call 911. Right as he said that he was going to call 911, I became conscious again and told him not to call 911. He drove me to the Emergency Room, and they ran a bunch of tests. There were numerous items that needed to be addressed with my doctor, but nothing that was an emergency, so they sent me home.
My husband had been in contact with my functional doctor in Nevada while we were at the ER, and we sent him the test results. The most pressing item that needed to be addressed was severe iron deficiency. He ran a battery of conventional blood tests to determine if something else was going on, but most other items besides low iron came back in the “normal” range. Due to my stomach issues, I cannot take iron orally, so he ordered IV iron infusions at our local hospital.
My vaginal pain was also still very much an issue. The functional doctor told me that I needed to start using natural hormones based on the results of the urine hormone test (not covered by insurance, of course) I completed multiple times over the last few months. The conventional blood tests used for hormone testing are not always accurate (as was the case with me), so we had to use a more advanced urine test. I knew that hormones were not the root cause(s) of the problem, but an effect of the root cause(s), so I didn’t want to add in the natural hormones. However, he told me that if I didn’t do it, then he would no longer be my doctor.
Other than treating my iron deficiency and hormones, my functional doctor was unsure of how to help me. Some of the additional testing (not covered by insurance, of course) that I had recently completed indicated abnormalities, and he didn’t know why. His frustration level for not being able to figure it all out was hitting an all-time high. At one point, he even exclaimed in an exasperated tone, “You are taking too much of my time!”
We were shocked by his statement, so we didn’t respond verbally. We could tell by the tone and attitude of many of my previous doctors that they had felt similarly, but none of them had actually said it out loud.
What immediately went through my mind was, “Um. Okay. Aren’t you the doctor?!? You would be spending a lot less time on my case if you just figured it out. This is fucking bull shit!”
He also tried to imply that it was all in my head even though there were test result markers indicating that it was not all in my head.
At this point, we knew we needed to try to find a different doctor, but we knew that we couldn’t end our time with him until we had another option. I still needed regular blood work and iron infusions until we could figure out the root cause(s).
We also decided that we needed more specific support in the emotional health category, so I asked a friend of mine for the name of her therapist who specializes in chronic illness and trauma. We had worked with some great therapists, but it seemed like we could use someone who had training and experience in this specific area. I had been noticing that my husband had started withdrawing emotionally, and that had never happened before in our relationship. I knew that my health situation had been taking a toll on him as the caregiver, and I knew that we needed someone with expertise in these topics. I wasn’t about to let chronic illness take my husband and best friend from me. He is one of the reasons I have fought so hard to get well. Our love for each other and our dreams for our life together inspire me to keep fighting on a daily basis.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #12
[Note: This post may be updated in the future if more information is available.]
2021:
About 2 months after fainting twice in the shower, I knew that my body was in major decline. I was losing weight again, and I continued to be in severe pain in multiple areas of my body. My sinuses, ears, eyes, gums, skin, heart, stomach, intestines, spleen, liver, pancreas, kidneys, bladder, uterus, ovaries, and vagina were struggling.
I told my husband that I knew I was slowly dying, and I wasn’t sure if we would be able to find adequate medical care before it was too late. I also knew that if I told anyone else, they would assume that it was all in my head. What I knew would be difficult for others to understand is that I didn’t want to die, but I knew I was physically dying. It is hard to put this “knowing” into words except that I could literally feel my body physically dying in a slow and steady way. My organ systems were stressed to the max, and I could feel it happening in my body. Most people who haven’t experienced this sensation in their body would just assume that I was experiencing a mental health emergency, so I only told my husband and our therapist at first. The fact of the matter was that I loved my life, and I desperately wanted to keep living.
On the advice of our new therapist, we needed to continue to look for a new doctor. After working with us for a short time, she didn’t believe that this was a situation with a mental health origin, but she would let us know if she felt differently after working with us for a longer period of time. She made it clear that she has had multiple clients with chronic illness who have had similar experiences with doctors. Yes, there are similarities with how physical and emotional trauma manifest in the body, but there are also clear differences. She knew that we definitely had some emotional trauma that needed to be addressed and healed, but she told us that we needed to stay the course and keep looking for medical care for the root cause(s) of my physical ailments.
We continued to have appointments with the functional doctor from Nevada once a month while we looked for a new doctor. Someone close to me gave me the name of a functional doctor in our area (not covered by insurance, of course). I decided to call the practice and ask questions. The new patient coordinator answered all of my questions and could tell by my line of questioning that I already had experience with functional medicine and was probably not like the other patients in their practice as far as my knowledge level. I was beyond the basics of eating healthier, exercising, and doing more self-care. She assured me that this doctor was very committed to her patients and would do everything in her power to help. The only problem was that it would be 4 months before I could get an appointment. I decided to go ahead and make the appointment, pay the initial fee, complete the initial paperwork, and upload my medical records in the hopes that there would be a cancellation, and I could get in sooner.
In the meantime, my body was still declining. I continued to get iron infusions every few months, and I continued to try to take the best care of myself that I could. My vaginal pain was really intense, so the functional doctor from Nevada recommended getting a vaginal swab at my Ob/Gyn’s office. I told my Ob/Gyn that I didn’t think it was Bacterial Vaginosis or Candida, but I needed to make sure. She ordered a real-time PCR test (not covered by insurance, of course) that would check for a variety of pathogens. A week later, the results came back positive for Aerobic Vaginitis. I had never heard of Aerobic Vaginitis, but I was told that it was not an STI (again, I wasn’t worried since all signs indicated that we were happily married, but thanks). The Ob/Gyn prescribed 28 days of a vaginal antibiotic cream. Obviously, I was very concerned about the length of this treatment, but I was also desperate and needed to try something. The antibiotic cream made the symptoms worse, and when I tried to contact the Ob/Gyn to ask questions, she became annoyed. I then asked someone close to me, a midwife, if she could help me figure out what to do next. I asked about possible root cause(s). Between her and my functional doctor from Nevada, we figured out a possible path forward.
We had also recently had test results come back that indicated we might need to test the water in our house for contaminants. We sent in samples of our tap water and water from our high-tech water filter machine. The results for both samples came back with what seemed like minimal contaminants, so we were happy about that.
It was also time for the Covid-19 booster, and the functional doctor from Nevada advised me to get the booster shot, so I did.
In addition, my husband and I took this time to dive into some of the emotional trauma healing work with our therapist. As had been the case since my early 20s, I was very aware that emotional trauma can also cause physical manifestations in the body, so I wanted to address any aspects of my mental/emotional health that needed to be addressed. I wanted to leave no stone unturned. She provided us with tools, strategies, and resources to add to our emotional health toolbox.
Around this time, my maternal grandfather passed away. Due to Covid-19 ramping up again and the state of my health, I could not say goodbye to him in the hospital or attend the funeral with my family. It was a terrible time, and I miss him every day.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #13
[Note: This post may be updated in the future if more information is available.]
Late 2021- Early 2022:
Over the next 4 months, my health declined even more. My weight dropped to 100 pounds, and I was still only able to eat about 12 foods. We knew that I was not able to eat and absorb the necessary nutrients, but we weren’t sure what to do about it. Everything in the body is connected to nutrition, so we kept up with my vitamins and hoped for the best until we could get more help. We also knew that mental health is closely related to the condition of the gut (gut-brain connection), so continuing our sessions with our therapist was a priority. We knew that we didn’t have the luxury of waiting around for the initial appointment with the functional doctor in our area, so we kept searching for options.
Then, a series of events happened that may or may not be connected (depending on your personal spiritual beliefs) . . .
On New Year’s Day 2022, my maternal grandmother (a 91-year-old with lapses in memory and clarity of thought), whose husband passed away 6 weeks earlier, had a lucid day and texted me out of the blue, “’22 is going to be a great year for the ________s [our last name]!!! It is your time. Love you both much.”
A few weeks later, the same grandmother told my oldest cousin that my grandfather, who passed away 2 months earlier, came to visit her. Because of her memory issues, none of us were sure what to believe. She told my cousin that when my grandfather came to visit her, she asked him to take her back with him. My grandfather told her that it wasn’t her time, and that he was here to take _______ [his brother’s name] back with him. Three days later, my grandfather’s brother passed away. No one in our family, including my grandmother, knew that he was as close to death as he was at that time.
Around the same time, my husband and I were spending a lot of our free time trying to determine what to do next. We joined online communities for patients with SIBO as a way to gather information. I also contacted my Naturopath to see if he had any good recommendations for practitioners who could help. We weren’t sure if SIBO was still an issue, but it was a starting point. The online communities were helpful in providing names of possible practitioners who may be able to help us at some point. We even made an appointment with a GI specialist in California whose group was well known for treating people with cases like mine. This specialist was out of network for my insurance and did not have an opening for an initial consultation until a year later, but we decided to make an appointment just in case it might help us in the future.
Four months after making the appointment with the functional doctor in our area, we had our initial appointment with her. She had already looked over my previous test results and didn’t know if she would be able to help me. However, she had a friend, a chiropractor, who she thought might be able to help me. She told me that she would contact him and get back to me in the next 2 days.
Two days came and went, and I heard nothing. The following week, I called her office and left a message asking for more information. I was assuming that they decided not to treat me, but I wanted to make sure before I moved on. Well, I didn’t hear anything back again, so we decided that we needed to move on.
We were running out of ideas on what to do next. I knew that I was slowly dying, but we didn’t know what to do about it. We felt like we had tried everything, and we were lost. My family does not follow a specific faith tradition, but regardless, I said a prayer that went something like this: “God, if you exist and it is not my time to go yet, please help me. I am out of ideas, and I don’t know what to do next. And, Grandpa, if you can hear me, please do your thing and help me, too.”
I also contacted someone close to me and told her my wishes for my husband if I were to die. My husband and I have had many conversations about this topic over the years due to my health situation, but I wanted someone else outside of our marriage to know my wishes as well.
Soon after, I was given the name of a holistic health practitioner who was not in our area, but who others had recommended. I contacted her to see if she could work with me virtually. She was brand new to this line of work, but she had been through similar symptoms, had a small following, and was willing to try. I added her to my virtual team (not covered by insurance, of course), and she reviewed my previous test results to see if she could find anything that could have been missed previously.
She got back to me very quickly and said that she contacted another practitioner, and both her and the other practitioner agreed that I needed to be retested for Lyme Disease and Epstein-Barr Virus. She also reminded me of what I already knew about Lyme and mold toxicity frequently coexisting. I was still using the functional doctor from Nevada until we could find a better option, so I contacted him and asked him to please order these tests for me at a local blood draw laboratory (covered by insurance, woohoo!!!).
I had also recently heard about Mast Cell Activation Syndrome (MCAS) from some of the online SIBO communities. Not surprisingly, the holistic health practitioner told me to keep MCAS on my radar, too.
At the same time (late February 2022), the functional doctor’s office in our area called me back and said that this functional doctor and her friend, the chiropractor, wanted to set up a meeting with us to determine next steps.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #14
[Note: This post may be updated in the future if more information is available.]
February 2022:
My results from the retesting for Lyme Disease indicated that Lyme Disease may still be lurking in my body, but not enough criteria was met for a Lyme Disease diagnosis according to conventional medicine standards. Also, the Epstein-Barr Virus results indicated that the virus may currently be reactivated in my body, but those results were inconclusive. [Side note: I am so glad test results are always so straightforward. 🙄]
About a week later (late February 2022), we met with the functional doctor in our area, and her friend, the chiropractor. The meeting lasted 1.5 hours, and we discussed a lot of topics. I explained that conventional medicine which only allows for 10-minute appointments and ends with a prescription medication to just suppress the symptoms was not what I was looking for and not what my body needed. I needed a doctor (or even better, a team of doctors) who could look at the body as a whole and treat me with the idea that everything is connected. I also needed doctors with grit and perseverance when things don’t go exactly as planned. They assured me that our philosophies aligned, and that they would be able to help us. We all agreed that illness is almost always a “dis-ease” of body/mind/spirit.
At the end of this initial meeting, we asked about pricing. We were expecting another expensive bill for current and future services, but we were given a gift instead. They both offered to treat me for free. They would donate their time and services as long as I paid for my vitamins and supplements (at their discounted rate — no mark ups). I immediately started crying. My husband and I were both in shock. He asked them why they were offering such a gift, and they stated that they could tell we were good people, and that we had suffered (and paid) enough already. The only thing they asked of us in return was to be open to the process, to be committed to the process, and to trust that they were different than my previous doctors and would not abandon us throughout the process. We needed to trust them with my care.
We left the meeting excited and grateful . . . and a little confused. We still weren’t clear what treatment would consist of, but we were willing to try anything. The plan was to show up at the chiropractor’s office on his days off and receive treatment. The functional medical doctor would be at some of the appointments, too, to understand my body and to be able to order testing and iron infusions as needed.
Was this real life? Were there really doctors who were willing to treat me as a team using each of their areas of specialty? What I had been wanting, needing, and discussing with my husband for at least 20 years was actually happening? And, they were going to provide treatment for free?
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #15
[Note: This post may be updated in the future if more information is available.]
March 2022:
We showed up to our first appointment (on a Wednesday) with my new team of doctors (chiropractor and functional medical doctor). We had no idea what to expect since the chiropractor needed to better understand my body before he could talk about treatment. He first did acupuncture and some energy healing work. He then told us that my body was going to need treatment at least 3x per week for now. He didn’t say much more, but we scheduled our next appointment for 2 days later (Friday) and then 2 days after that (Sunday).We kept up with our appointments with my team as they were scheduled. The chiropractor would use a combination of chiropractic adjustments, acupuncture, energy healing, and a difficult-to-explain type of biofeedback/muscle testing to support physical healing and to target pathogens. I had tried acupuncture previously, and I was definitely willing to do it again. We had not yet tried energy healing or this specific type of biofeedback/muscle testing, but we were open to both. It was definitely not conventional medicine, and I was sure if we told anyone else about these treatments that they would think we had lost our minds. So, we decided not to really say much to anyone until we had a better understanding of what we were doing.
About 2-3 weeks after starting treatment, the chiropractor said to me, “When I first met you, you were very close to dying. I didn’t want to tell you at the time, but you need to know how close you really were. Your body is a little better off now, but we have a long way to go. Don’t worry, though. You are going to be okay now.”
I responded by saying, “Yes, I know I was close to dying. I have been telling my husband, therapist, and a few others in my life for 6 months now that I knew I was dying. What you are saying makes sense compared to the sensations I have been experiencing in my body.”
At some point, he also said to us, “You asked for help from your angels, and here I am. We’ve crossed paths for a reason.”
We had not told him about the previous series of possibly connected events, so we were more than a little surprised by this comment. We weren’t sure if we aligned with his spiritual beliefs, but we have always been open to a variety of spiritual beliefs, and we will always be ready to receive whatever positivity and/or reassurance comes our way.Around this same time, my dad called my husband to see if he had a subscription to Men’s Health magazine. My husband did not have a subscription, so my dad told my husband about an article that he just read in Men’s Health magazine. I was in the restroom when my dad called, but when I walked back into our living room, I overheard parts of the conversation. My dad was explaining that there was a man who had written an article that seemed to match some of my health situation. He was explaining that this man had become sensitive to almost everything in his life, and that he had other unusual symptoms as well. At this point, my dad didn’t know that we had just retested for Lyme and EBV, or that we had recently learned about MCAS, but he knew that the general theme of the article sounded familiar.
After overhearing parts of the conversation between my dad and my husband, I had my husband mute the call and told him that we should inform my parents about my new team of doctors. Based on the conversation, they seemed open and ready to hear about the next unconventional treatment plan we were trying, and they also seemed like they were a good practice run of trying to explain it to others. We tried our best to catch them up on the new treatment program, and we informed them that we weren’t ready to share with others since it was difficult to explain and it might seem like we had lost our minds. Regardless, we all agreed that it was important to try any type of treatment at this point. My life depended on it.
The very next morning, a person in one of the online SIBO communities we had joined to try to figure out our next steps had shared the link to the same exact Men’s Health article. Due to the knowledge I had recently gained from the online SIBO communities and the holistic health practitioner, I had previously discussed these topics with my new team of doctors, but I went ahead and sent the article to the chiropractor anyway. He told me that this article was a reminder that we were on the right path, and we needed to stay the course.[In case you are interested, the link below is to the above-mentioned article in Men’s Health magazine. There are some key differences between our situations (e.g. I don’t have panic attacks or high levels of anxiety as this person described), but some of the other parts of the article sounded familiar: Men’s Health article link]
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
- Backstory #16
[Note: This post may be updated in the future if more information is available.]
Late March 2022 – October 2022:
My new team of doctors treated me after business hours or on their days off an average of 2x per week. The way the chiropractor described my situation was similar to the Men’s Health article. Basically, my body had come into contact with pathogens, toxins, environmental stressors, emotional stressors, etc. over my lifetime, and we needed to work backwards to get back to a state of health. It was like peeling an onion. We needed to start with most recent events, and work backwards to peel off one layer at a time. I can’t explain how he knew what to do first, second, and third, but he somehow knew. We would add foods back in one at a time, and then he would use a combination of chiropractic adjustments, biofeedback, acupuncture, and energy healing in order to keep my body from becoming sensitive to each new food.
He also instructed me to continue my daily walks and to do some very minimal weight lifting in order to build back muscle. He was concerned about me losing my ability to walk due to muscle loss over the last few years in my legs, so he gave me some specific exercises to do. However, he was also careful to warn me not to overdue it. My body needed a lot of rest as well.
After I had gained back a little bit of weight, we worked on treating pathogens in my intestines. My body responded better to this supplement protocol than it had previously due to simultaneous treatments with the chiropractor. However, the recurring theme over the last 20+ years has been that my body would experience extreme die off symptoms every time we tried a new supplement regimen, and this time was no different. My body was struggling to detoxify as we killed off some of the pathogens, so we slowed down the treatment, but kept going. He instructed me to sleep whenever my body was tired regardless of time of day and to continue to drink a large amount of water.
At this point, the chiropractor made it clear that my body was in such a state that it was going to take quite a while (years) to get to a healthy place. He could not believe how much physical trauma my body had been through over the years, and because of the damage that had already been done, I would probably only be able to physically heal to about 70%. He also said that I had saved my life by sheer willpower for at least the last 10 years. I had figured out so much of what was happening in my body on my own, and the rest would have been impossible without assistance. He described it as trying to put a puzzle together with only half of the pieces. It can’t be done. He repeatedly urged me to share my story in order to help others. I told him that I would be happy to share my story once I knew what to share. He ignored my responses and continued to bring up the topic at various times during my treatment sessions. [Side note: I still don’t know what to share, but I will keep doing my best.]
He also said that the origin of my health issues was physical and not emotional, but he still helped me work through the emotional stressors as they came up while we were peeling back the physical trauma. Both doctors on my team indicated that even though I was one of the most complicated cases they had ever seen, they were committed to seeing it through until the end. We both repeatedly told them how grateful we were for their time and assistance. They asked my husband and I to stay open to the process, to be committed to the process, and to trust that they were different than my previous doctors and would not abandon us when things got difficult. I told them from the very beginning that we would never be the problem. We would be the most dedicated patient (and support person) they had ever known. We assured them that they had not yet met people with our level of commitment and determination to heal.While the physical healing was taking place, the chiropractor told me that I should start paying close attention to my dreams. He said I would know what he meant when it happened, but I wasn’t sure what he was talking about, so I just told him that I would and moved on.
A few weeks later, I had a visitation dream that I remembered in vivid detail when I woke up. Someone who had passed away was visiting me. At the beginning of the dream, it seemed like my maternal grandfather was coming to visit me since I had heard the story about him coming to visit my grandmother a few months earlier. However, as the dream progressed, my paternal grandfather, who passed away in 2019, was the one who made an appearance. In the dream, we ended up sitting in a swing together in his former living room. I was around 4-years-old in the dream, and he had his arm around me. It was as if he was trying to tell me that it wasn’t solely my maternal grandfather who was helping me, but instead, the two of them were working together to help me. [Fun Fact: My grandfathers were friends with each other as teenagers, so if there was indeed something spiritual happening, it would make sense that they would be working together for my benefit.] I then remember knowing that the visit was about to end and pleading for it to last longer. After waking up, I remembered every single detail of the dream. I had never had a dream like this before. I called my paternal grandmother and told her what had happened. I knew she would be unfazed, because she has had similar experiences throughout her life, and especially after my paternal grandfather’s passing. As I have stated previously, regardless of spiritual beliefs, I am always ready to receive whatever positivity and/or reassurance comes my way.For many months, my body was responding to treatment at a slow and steady pace, so my doctor decided it was time to venture out into the world again. He told me that isolating as much as we had saved my life, and now my body was ready to be slowly reintroduced to the outside world (and germs). I needed to follow his very specific plan and not overdue it. He said that the fall and winter months of 2022 were going to be very bad in terms of illness for the general population, so I needed to be very cautious. He said that if I followed the plan and came down with an illness, it might take me longer to heal, but he would be there to treat me and assist in my recovery. I was very excited to begin the process of reentering the world, because I know how important connection to others is for good health. It is vital.
We were also still seeing our therapist who specializes in chronic illness and trauma to round out our team. All 3 practitioners were playing a vital role in our progress. The progress was slow, but it was progress, and we hadn’t had any progress prior to this treatment for a very long time. We were filled with hope.
Then, in September 2022, I developed another UTI. The chiropractor was not concerned, because the healing journey involves going 2 steps forward and 1 step back. That is how it works. We have to try to remove supplements to see how my body reacts, and when that happens, my body may tell us that it is not ready for that yet. As a team, the 4 of us (chiropractor, functional medical doctor, me, husband) discussed the results of the urine culture and decided that I needed a short stint of antibiotics to go along with the supplements to make sure the infection was eradicated. We didn’t want to kill the good bacteria in my intestines that we had worked so hard to build, so we were very intentional during this time. The antibiotics worked (as determined by a follow up urine culture), but the inflammation did not subside, and it just added to the pain I was already experiencing in that region of my body. We tried a bunch of different treatments and supplements for the next month, and nothing was working. The chiropractor was not worried, because his belief was that everything that happened during treatment was more data for him to use as we progressed on the healing journey. Due to the timing of the infection (fall season with cooler temps and more rain), we discussed mold and other possibilities once again. I was tired of being in constant pain, but we believed that we were still on the right path.
At the end of October 2022, as we were finishing up a treatment session, the chiropractor said, “We are going to need to try a different approach.” He waved it off as if to say he had a plan and not to worry about it.
We had no idea that would be the last time we would see him.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life. - Backstory #17
[Note: This post may be updated in the future if more information is available.]
Late October 2022 – January 6, 2023:
At the end of October 2022, after 8 months of treatment, I received a text message from the chiropractor. He said that he needed to cancel our appointments. His father passed away unexpectedly, and he was going to travel to Tennessee and didn’t know when he would be back.I responded to the text and told him that we were very sorry to hear it, and that I would continue to do the at-home treatments and take the supplements he had me on until he was back in town and ready to resume treatment. We also would keep our outings/exposure opportunities the same until I had more direct support from him. We didn’t want me to become ill during the height of the fall/winter germ season (as he described it) without any treatment options. This meant that I would need to continue to connect with others via video calls instead of in-person gatherings. I was sad about that, but I knew it was the right thing to do until we knew more.
Since my husband’s father passed away suddenly when we were in our late twenties, we knew how stressful it is to have a parent pass away suddenly and unexpectedly. We figured that he would need at least 2-4 weeks to return from Tennessee and get caught up.
I decided that this pause in treatment would be a good time to get my eyes checked by my optometrist. I had started having eye floaters over the summer, and my team of doctors had recommended an eye exam at some point. My optometrist did a complete eye exam and told me that the eye floaters were nothing to be concerned about at this time.
I also messaged the other doctor on my team (the functional doctor in our area) and asked her to order a series blood tests to check my iron levels. My levels were low again, so she ordered another round of 2 iron infusions. She also asked me if the chiropractor was back in town yet to resume our treatments. I told her no.I texted the chiropractor a few times and told him that we were thinking of him, and he would sometimes respond. He also responded when I asked him a question about my at-home treatments. Other than that, we didn’t hear from him. We started to wonder if we misunderstood his original text message.
After Thanksgiving, I texted him to see if he saw us resuming treatment at some point, and he responded by saying that, yes, he saw us resuming treatment as soon as he got himself caught up. He said that he was going back to Tennessee a few more times in December, so my husband and I assumed that treatments with him wouldn’t resume until January.
We were still doing virtual appointments with our therapist once a week, and it was incredibly helpful to have her in our corner. We decided to also spend this pause in treatment taking an even deeper dive into healing our emotional trauma. Even though our relationship had a solid foundation from the very beginning, we were starting to see some cracks due to stress. Chronic illness takes a toll on all relationships, so we knew that it was important to not let our guard down. As I mentioned previously, I had noticed that my husband was withdrawing emotionally, and that was not like him. He had always been both physically and emotionally present up until this point in our lives, so I was confused and hurt.
Our therapist began helping us to better understand our attachment styles and coping mechanisms from each of our childhoods. My husband and I had both predominantly exhibited characteristics of a secure attachment style since meeting each other in college, but chronic illness and the trauma we had experienced together had pushed us both to our limits. My husband was being pushed to his absolute emotional limit, so he began to show signs of an avoidant attachment style. I was being pushed to my absolute emotional limit, and I didn’t understand why he was emotionally withdrawing, so I had returned to a very independent “I will deal with my emotions all by myself” approach. I started moving through my emotions privately instead of asking him for support when I needed it. Through a lot of hard work and dedication to the process, it was determined that my husband was terrified of losing me, and he started to emotionally withdraw to try to prevent as much pain as possible if I were to die.
Once we understood what was happening emotionally for the both of us, we were able to work together to right the ship. Until gaining that insight, I was hurt that he was emotionally withdrawing (for what felt like no reason) during the most difficult time of our lives, and he was terrified of losing me. I was his safe place, and I was no longer safe. I could die. It made complete sense. He was overwhelmed and scared, and he had yet to learn the tools needed to stay emotionally connected when faced with the possibility of losing his wife at such a young age.
It had been the most difficult time in our relationship so far, but I kept telling our therapist that I felt like it was going to make us even stronger once we got to the other side of it. I also told her that I felt like my health situation was about to get even more difficult, but I didn’t know yet what exactly I meant by that. I was sensing that we needed this time of healing as a couple in order to prepare for the next more difficult phase on this journey. [Spoiler Alert: I was right on both. The next phase of the health journey was more difficult. And, right now, during the most uncertain time on this journey, and in our lives so far, we are the strongest we have ever been as a couple. Hell, yeah!] Our therapist never seemed to be really worried about us as a couple. She would point out that we would sit close together and hold hands during our therapy sessions, respectfully listen to each other’s perspectives, and do the work to be the best individuals for ourselves and each other. The foundation was still there. We were still best friends. We were just best friends who had been through some tough shit that most couples our age don’t experience.We didn’t hear back from the chiropractor in December 2022, but since he told us many times to trust him and that he was different than our previous doctors and wouldn’t abandon us, we tried to keep trusting him.
In the meantime, I had still been following the holistic health practitioner who reviewed my test results back in February 2022. She had begun a podcast, and one of her guests was a chiropractor in our area who used a functional medicine approach. He specialized in mold toxicity, Lyme Disease and co-infections, and parasites. I listened to that podcast episode, and then I sent the link to my husband. We agreed that the information presented was intriguing and that we should keep it in mind.On January 5, 2023, I texted my current chiropractor again to see if he could give me an estimated timeframe on when we would be resuming treatment. He did not respond, so I asked the other doctor on my team if she had heard from him. She hadn’t.
The next day, January 6, 2023, I asked her if she could seek out more information, and she offered to contact him. Later in the day, I received a text reply from the chiropractor telling me that he was not able to help me right now. His text was unclear, but we knew that we didn’t have any more time to waste, and my body had already been showing signs of regression. So, we made the assumption that he meant that he was not going to be resuming treatment with me ever again. I asked the other doctor if she was still willing to be part of my medical team, and she didn’t respond for over a week. And, her eventual response was also unclear.
My husband was out on a run when I got the text from the chiropractor late in the day on January 6th. He stopped mid-run at an intersection, because he was feeling a wave of energy and emotion. He had a feeling that I had gotten a text reply, so he ran straight home. He walked in the door, and I said, “I got a reply.” He said, “I had a feeling.”
After their repeated requests for us to remain open to the process, to be committed to the process, and to trust that they were different than my previous doctors and would not abandon us when the situation was difficult, this development was a huge emotional gut punch. We understand that life can change for someone in an instant, but the way this situation was handled by this team of doctors was disappointing and hurtful. We knew that my nervous system needed to trust them in order for my body to physically heal, so we had made the choice early on to trust them completely even though we had been emotionally traumatized by the medical community over the years. Since we did trust them, we were heartbroken by this development. In that moment, I was also embarrassed and felt like a fool for trusting them. [Side note: I am no longer embarrassed or feel like a fool. I know that it takes strength and courage to stay open, start again, and continue to trust doctors when the easiest emotional response would be to close myself off. I am a badass!]
[This is where the 2023 Blog Posts begin. Start with Hello! published on January 6, 2023.]
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 