[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.
This Brutiful Life 