This Brutiful Life

(This post is for one of my closest friends who asked me for more updates. You know who you are. I love you!)

Starting From Experience was going well until it wasn’t. One of the most difficult parts of this health journey over the last 20+ years has to do with sudden changes. My body will be adhering to a plan, and then all of a sudden, with no warning, it starts fighting against the plan. The repeated suddenness of that experience can break a person. But, I’m still standing.

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 was to begin the mold toxicity treatment again at some point, but we had a few steps to complete before then. A few weeks ago, I had slowly and successfully increased a treatment protocol for bacterial overgrowth in the hopes that it would help kill enough of the bacteria in my body to be able to tackle mold again before we go back to bacteria full-time. Because of this increase, my abdominal pain was at a more manageable level.

I was also still microdosing a prescription medication (not covered by insurance, of course) that is supposed to reduce my body’s inflammatory response. I had been slowly increasing the dosage every few days to try to get to the preferred “low-dose” dosage amount. My body seemed to be accepting the medication, and that was super exciting.

Then, all of a sudden, my body decided that it was going to reject something we were doing.

So, the question we needed to try to answer in a very short amount of time was what was causing the sudden shift with my body. What was causing the nausea, hot flashes, increased stomach and abdominal pain, increased fatigue, weakness, etc.? Was the treatment protocol for the bacterial overgrowth working, and I just needed to power through? Or, did I need to stop the treatment protocol for bacterial overgrowth because it was becoming detrimental? Or, did it have nothing to do with the treatment for bacterial overgrowth? Was it the prescription medication that is supposed to reduce my body’s inflammatory response? Was my body telling me that I was at my limit with that? Or, was it something else? Was it the outdoor allergy environment causing an MCAS response?

During these times, I have to become a scientist who is studying my own body. I have to change one variable at a time and see if it helps, but I need to do those changes as fast as possible in order to stop the damage this current reaction is having to our plan. My main doctor is as helpful as he can be, but I am the person who has to try to decipher what is happening and report back to him. I have to listen to my body and make my best guesses about what is happening in order to get some answers and to be able to partner with him in creating the revised plan. It doesn’t help my doctor if I message him and just say that I don’t feel well. We have to work closely together as a team, and I am the main source of information.

After a couple of quick variable changes and messages with my main doctor, we are working our way back to baseline again. My husband and I had an appointment with him yesterday evening, and our best current guess is that the treatment for bacterial overgrowth became too much for my body, so we have decreased the dosage back to a minimal dosage. The good news is that I was able to successfully take the full dosage for 16 days. Recent test results indicate that the bacteria level in my body has slightly decreased again for now, so we are going to try to finish increasing the microdosing level of the first prescription medication.

If I can get my body back to baseline levels of pain and baseline levels of reactions to treatment, then the plan is to try to move forward with a 2nd prescription medication which is not covered by insurance due to my need to start with a customized dosage from a compounding pharmacy. I had an appointment 2 weeks ago to get the second prescription from the Nurse Practitioner in my main doctor’s practice (similar to what we did with the first prescription medication). This second prescription is designed to help my body have a higher acceptance rate for future treatment protocols. The problem with this prescription medication is that it can cause more nausea, digestive issues, and fatigue, so we have to go extra slow.

The hope is that we can get this second prescription medication in before the bacterial overgrowth needs to be addressed once again.

Emotional Health:
The repeated sudden shifts from the plan going well to the plan not going well during a chronic illness situation is very difficult on an emotional level. I have had to get really good at moving through my feelings and regulating my nervous system.

Our therapist frequently tells me that I am so good at this part from 20+ years of increasing my tolerance for uncertainty that I don’t even realize I am doing it so well. Her words make sense. I am so used to change at this point that I am good at feeling the feelings, picking myself up, and moving forward. Just because I am really good at it, though, doesn’t make it easy to repeatedly experience.

One of my closest friends has been by my side through this whole journey, and she regularly feels helpless in her support of us. She told me last weekend that she often tries to think about how she can be there for me, and there aren’t a lot of options. I always remind her that loving me and not abandoning me through the most difficult parts of this journey is more than enough. However, she continues to ask me what support looks like for me in case that answer changes.

This last weekend, I told her that it would help if we had someone to run to the compounding pharmacy for us this week once I have an updated treatment plan. She was overjoyed to have something she felt like she could do for us. (In fact, she asked me if she could be the person who always does that errand for us. We will see about that. 🤣❤️)

To this friend: You are the definition of a true friend. You are always there for me. You always do what you say you are going to do. You tell me with both words and actions how much you love me. I love you, and I am beyond grateful for you.


Brutal. Repeatedly experiencing sudden shifts from the plan going well to the plan not going well. So much uncertainty.

Beautiful. Increased tolerance for uncertainty. True friends. I’m still standing.


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