Hanging on by a Thread

How should I describe the last few weeks? Difficult, to say the least. Functioning every day has been a challenge.

I have been playing the not-so-fun game of trying to add in oxalate binders to prepare my body to start mold toxicity treatment once again. However, since I have also gotten IV iron infusions and my hormones are also in constant fluctuation, it has been difficult to determine how much of each binder and which ones my body will tolerate. I will go a few days with everything seeming to be okay, and then my body will revolt. Also, since my body will go a few days with everything seeming to be okay, then I will try to start my mold toxicity treatment. Then, my body will tell me that something is very wrong, and I will have to try to determine which thing is the problem.

For example, I began experiencing a terrible headache, nausea, vertigo, increased stomach and intestinal pain, and diarrhea on Sunday afternoon. I didn’t have any warning, so I had to do some quick assessments and figure out my next move. Here is a small sample of the questions I had to try to answer for myself as quickly as possible:

What is the most likely culprit?
Is this an MCAS reaction or a response to treatment or something else?
Which oxalate binder do I think could be the culprit? Or both?
Should I stop all of the binders just in case?
Should I stop mold toxicity treatment?
Is this a symptom of the bacteria building in my body instead of having to do with a binder?
Should I slow down on my probiotics or keep taking them?
Which supplements can I stop briefly to let my body settle down?
Is this happening because I tried to walk outside with the outdoor allergens today instead of on the treadmill? Should I stay indoors for now?
Should I still do my castor oil pack today for liver support?
What information can I gather in order to message my doctor?
Should I adjust my hormone regimen?
Will taking a brief break from any of the above items cause a flare in my probable autoimmune condition that causes pain in my genital area?
Am I moving through my feelings in a healthy way in order to help regulate my nervous system?
Which acupressure points can I use to my advantage for this combination of symptoms without causing my body to push back harder?

Because I am a Badass and am used to having to process a lot at once in these scenarios, I was able to quickly run through the questions above (+ more) in my head and make some decisions that enabled me to start feeling better by Monday around noon. I basically removed my best guesses of the culprit(s) to get myself on more solid ground. [Side note: The mental load during these times is beyond words.] I then had to try to figure out what to slowly add back in to give my doctor more information than just telling him that I don’t feel good. Obviously, I am able to receive more assistance from him when I can provide him with as much information and as many details as possible.

Yesterday (Tuesday) morning, I began the task of guessing what to try first, second, and third in order to gain a clearer understanding of this most recent situation. I felt mostly better for a large part of the day, but then the evening hours were dicey. However, I was able to gain some useful information nonetheless.

This morning, I have been messaging back and forth with my doctor so that we can collaboratively determine next steps. We have a plan that begins with stopping the oxalate binders for 5 days to give my body time to rest. We are hoping that this does not cause a flare in my probable autoimmune condition. I also need to stop mold toxicity treatment, once again, until my body is more physically stable.

I saw this image recently, and it made me laugh since I can relate:

(credit: unknown)

The emotional and spiritual health pieces have been put to the test as well. There are moments when I feel solid in the way I am moving through my feelings, and then there are other moments when I am questioning how I am handling everything right now. I feel like I am in a race against the clock, and if I let myself think too much about the future, then I become dysregulated. And, since we know that the pathogens in my body put my nervous system in fight mode, I try to use my tools to do what I can in the emotional realm. If I can stay in the present moment, then I feel more regulated and am more content with traveling on this path into the unknown. The less I fight against or try to control the path I am on, the more regulated I feel. However, it is extremely hard not to try to control the path given the amount of uncertainty at almost every turn. I must use my tools every day like a boss. I must frequently remind myself of what is actually true and real in this moment and what I am doing well each day.

I know that most people my age and older didn’t grow up fully understanding nervous system and/or emotional regulation, and I am no exception. I have had to put in the work over the last 20+ years to reframe my understanding of what is healthy and what is not healthy concerning emotional health. Based on conversations with various friends and our amazing therapist, most of us were taught that maintaining composure is what makes someone emotionally healthy. As a society, we now know that this isn’t true, but it is something that I still remind myself of every single day. (I discussed this topic in more detail last year in Up, Down, All Around.)

I should probably take a moment to be proud of how good of a job I have been doing lately at managing my work and personal life while simultaneously managing a complex chronic illness. I should take a moment, so I will do that. Or, at least I will try. Maybe. 🤣

Brutal. Hanging on by a thread . . . physically, mentally, emotionally, and spiritually.

Beautiful. Using everything I know about my body and health situation to make the best decisions I can in each moment. Doing the work over the last 20+ years to redefine what is, and is not, emotionally healthy. Taking a moment, even when it is difficult to do so, to be proud of myself in the midst of the uncertainty.

Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.