This Brutiful Life

For many years, my husband and I were told by ignorant and abusive medical professionals, as well as some uninformed family members and acquaintances, that my health situation was all in my head and/or caused by mental health issues. And, I can say now with absolute certainty that not being believed by various people in my life was equally as traumatizing as the health situation itself.

(credit: Liz Tenuto on IG)


The good news is that even though there was trauma caused by repeatedly not being believed, I trusted my internal knowing that told me to keep going. I had just enough self-esteem and self-worth to continue trusting myself despite the trauma. And, I did the work to heal from the trauma inflicted by others in order to maintain my mental health stability. As a result of that work, I feel even more confident and am better equipped to handle it when an uninformed person makes a similar statement now.

Last week, I wrote about 11 days of improvement and then a physical crash. We have gained more information over the last few years to help us better understand why the physical crashes happen. Based on what we know right now, the physical crashes seem to point back to MCAS and histamine (see my MCAS post from 2023). Robert Groysman, MD, describes MCAS and how it is often mistakenly labeled anxiety about food, orthorexia, or health anxiety:

And, food isn’t the only MCAS trigger. My body also reacts to chemical exposures and temperature fluctuations, among other things.

Because the symptoms of MCAS/histamine issues are inconsistent, medical professionals, as well as some family members and acquaintances, can mistakenly assume that the root cause of the symptoms is psychological instead of physical.

While I am so grateful for the knowledge I have gained in the last few years on this health journey, the path to resolution remains unclear. Because my physical body has been through a tremendous amount over the last 20+ years, MCAS is only one part of the health picture. We currently know of about 6 or so mechanisms (similar to MCAS) that are involved in my health situation — along with all of the known pathogens and toxins in my body that are responsible for some of this MCAS mayhem — so determining the best path forward can be super challenging. I need medical professionals who are knowledgeable about all 6 or so mechanisms *and* who understand the details of my specific situation. They also need to have patience and a small ego (as opposed to a big ego) since resilience is a key component at this point. And, finding all of these characteristics in one medical professional or group of medical professionals is more difficult than one might think. I love my current main practitioner, but does she have all of the knowledge we need? We will see.

Since the physical crash 2 weeks ago, we have been working on getting my body back to baseline and trying to figure out next steps. Unfortunately, getting my body back to baseline has been extremely difficult. And, there are a lot of decisions that need to be made, so I have intentionally been spending as much time as possible in stillness. When I am still, I can better hear my internal knowing and the Universe.

I have also been continuing to visit my secondary practitioners for assistance in dealing with some of the symptoms. I went to my chiropractor/acupuncturist early last week, and she helped ease some of the pain, dizziness, and nausea. The next day, she texted me to see how I was doing. I told her that I was definitely a little better than the day before, that I was grateful for her help, and that we were still trying to determine next steps. She replied with the following words of encouragement:

In addition, I have been going on my daily walks, reading, and/or coloring when I am feeling well enough to do so. One of my closest friends got me started on adult coloring. I tried adult coloring in the past, but I didn’t have the right tools/supplies. She gave me excellent recommendations on various supplies, and with a few substitutions due to my chemical sensitivities, I am testing out the hobby to see if I like it. I am definitely at the Beginner skill level, but here is what I completed over the weekend:

It has definitely been a tough few weeks, so I am continuing to allow myself the time and space to feel all of the emotions and feelings associated with the current circumstances. Sure, there is sadness, grief, anger, and frustration, but there is way more gratitude, peace, joy, and contentment. I never forget to imagine the best case scenario, too.

(credit: @thespiritualmagic on IG)