Here is the latest update . . .
Physical Health:
Here is a reminder of the tentative plan for healing and the parts that have been completed:
As I previously stated, the goal is to begin the mold toxicity treatment again at some point, but we have a few steps to complete before then. I am still microdosing a prescription medication (not covered by insurance, of course) that is supposed to reduce my body’s inflammatory response. I am now at the preferred “low-dose” dosage amount.
As of my last update, we had stopped the full dose of the treatment for bacterial overgrowth after 16 days, and had reduced the dosage to a minimal level. Within a few days, the increased abdominal pain had returned along with a few other inflammatory symptoms from my past, so we increased the dosage slightly to try to maintain a minimal dosage while also preventing the bacteria in my body from increasing again to an unmanageable level.
Right now, the pain and digestive dysfunction is still above my baseline level, but my doctor wants to try to continue moving forward with the 2nd prescription medication (not covered by insurance due to my need to take a customized dosage from a compounding pharmacy). This prescription is to help with MCAS/histamine reactions in my body. The problem with this prescription medication is that it can cause more nausea, digestive issues, and fatigue, so we have to go extra slow. I only recently started this medication at a very low dose, so it is too early to tell how it is going.
If my body tolerates the 2nd prescription, it will likely take me about 2 months to get to the desired dosage. In the meantime, I will likely feel terrible. My doctor told me that I am a really tough and resilient patient compared to many of the patients he sees, so he knows that I will try to push through the pain as I have done many times over the years. He said that he is okay with me pushing through the pain a little bit more at this stage of the journey than he previously allowed, but to make sure that I don’t push myself beyond what is reasonable. My strong desire to be well cannot overtake the deliberateness of this process.
Emotional Health:
It has been an interesting few weeks/months in our world. We have received unsolicited feedback about my medical care and my mental health from a few people who are not active participants in our daily life or my health journey. The unsolicited feedback has been perplexing, to say the least, for a variety of reasons. (I will not go into the specifics, because that is not the point.)
Over the last 20+ years, I have learned some crucial life lessons from my own life experiences and learning opportunities. What I have learned about receiving feedback, and what has been reiterated by our amazing therapist, is this: It is important to be open to suggestions, recommendations, and constructive feedback, but only from people who are sitting in the trenches with us — my medical team, our mental health provider, and our inner circle of trusted truth tellers who are active participants in our daily life. So, after hearing the recent unsolicited feedback, I have spent the last few weeks engaging with the people who are active participants in our daily life and who know more of the ins and outs of our situation. As it turns out, none of the people who fit this criteria have any concerns about my medical care or my mental health. My inner circle of trusted truth tellers reminded me that they will always tell me the truth even if it is a hard truth, and they won’t hold back. They have always known that I am open to hearing their feedback, and if they have any concerns, I will be the first to know.
They also hope that I will start receiving more support and less lectures.
As a reminder, I have never claimed to know what I am doing on this health journey. At almost every turn, I have had to learn how to be comfortable with uncertainty. I am sure that some of the decisions I have made over the years, including decisions I am currently making, have made parts of my health situation worse, but I am just doing the best I can with no road map to follow. In hindsight, it is hard not to wish that I had done a few things differently along the way, but I have always done the best I could with the information available to me at the time. I am only human. (And, I am still alive, so I must be doing something right.)
I have also made it clear many times that my husband and I will change paths along the way the moment we feel like a change is needed. We are in regular contact with my medical team and mental health provider, and I trust their knowledge and expertise. They believe that I am currently doing the right things for both my physical and mental health. However, if that changes, we will be sure to address it. My team and I understand that physical health and mental health go hand in hand, and both will continue to be a priority.
As I have stated previously, deciding whether or not to continue this blog is an ongoing conversation with those closest to me, and even more so now. Most of the people who are sitting in the trenches with us have indicated that they would have discontinued the blog by now knowing what comes at us on a regular basis. However, they also really want me to keep writing as long as it is not detrimental to my healing. They would all understand if I stopped writing, but they appreciate the updates and have stated that my blog posts are full of emotional intelligence, emotional maturity, and hard-earned wisdom, and that my writing is helpful to them in their own lives. So, this post is for them.
What I know for sure is that most people have good intentions. And, it is difficult to watch the people we care about in pain, so instead of sitting with them in the pain, we try to fix the pain. We try to solve the problem even when the problem can’t be solved. For many people living alongside an invisible, complex chronic illness, what feels more supportive than having someone try to solve the problem that can’t be solved is having someone sit with them in the pain. Listening to understand instead of listening to respond, validating their feelings, and empathizing with them can all be truly healing experiences.
Brutal. The uncertainty in life. The snail’s pace of my healing journey. Unsolicited feedback from people who aren’t sitting in the trenches with us.
Beautiful. Increased tolerance for uncertainty. My medical team. Our amazing therapist who specializes in chronic illness and trauma. Being open to suggestions, recommendations, and constructive feedback from people who are sitting in the trenches with us. Knowing that I am doing my best with the information available to me. People who are willing to be uncomfortable in order to sit in the pain with us.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 