I have no idea what I am doing most days. My life is the exact opposite of having a plan. I feel like I have done a good job of becoming increasingly comfortable with uncertainty over the years, but accepting the uncertainty is still a battle on my hardest days. I am looking forward to the day when the path becomes clearer.
Here is the latest update . . .
Physical Health:
Here is a reminder of the tentative plan for healing and the parts that have been completed:
A lot has happened in the last two weeks since my Season 25 post about receiving the news of the probable rare autoimmune condition involving the skin in my genital area. I had a group of messages back and forth and an appointment with my main doctor (functional medicine chiropractor), and he told me that he has had a number of patients with the same condition, so he is familiar with it. What are the chances?!? He confirmed my theory that this flare up was probably due to oxalates moving more in my body from the mold toxicity treatment. We have since been trying to add in some binders to help remove the oxalates from my body in order to start mold toxicity treatment once again. Once I am able to start mold toxicity treatment again, I will probably need to start over with a very minimal dose (and work my way up) in order to increase the chances of my body being willing to accept it and not cause another flare up.
In addition, my most recent blood test results from April indicated that my immune system is working hard to fight bacteria. This makes it difficult to know if we should go back to Lyme (and Lyme Co-infections) now or continue on the mold toxicity path and return to Lyme at a later date. At this moment in time, we are thinking about still trying mold toxicity treatment and then going back to Lyme like we had planned. If we don’t try to work on the mold toxicity, then my body won’t be able to fight off the bacteria, and this cycle will continue.
I received my next 2 rounds of IV iron infusions last week and this week, so hopefully that will help with the fatigue.
On the physical side, I feel like shit most days right now for all of the reasons listed above. I am in a lot of pain, and I am also experiencing dizziness, fatigue, and brain fog. Because of this, the plan could change at any point once again.
Emotional Health:
This has been one of the most difficult 3-month periods for my emotional health in a long time. I am having to work extra hard to regulate my nervous system, because my body is in fight mode due to the increase in physical pain. Considering the circumstances, I feel like I am doing a damn good job of moving through the feelings and emotions as they come, so I am patting myself on the back for that. The mental load of all of the information coming at me, all of the details that need to be remembered, and all of the decisions I have to make every second of every day is difficult to put into words. I don’t realize how taxing it is until one day I do realize it (if that makes any sense at all). I try to keep reminding myself that no one knows what they are doing, so it is okay that I don’t either.
At my appointment earlier this week, my main doctor said a lot of nice things to me. He told me that I am very intelligent, and I have more knowledge about these topics than most people. He said that it is obvious how much I have had to do for myself over the last 20+ years, and that I am extremely resilient. And then, he complimented me on my consistency and my diligence with my health and the steps needed for better health. It was nice for a doctor to acknowledge how hard this has been, and he is not the type of person who regularly doles out compliments, so I will certainly take them when he gives them.
On the social front, we were able to attend a Cousiblings’ (Cousins who are more like siblings) Night recently, and we had a great time. My cousiblings are super supportive and are always willing to wear a mask in support of me. The next weekend, I was also able to catch up with one of my closest friends in person. (She is a teacher who is around a lot of teenagers and their germs and was nervous about getting me sick, so she was very committed to wearing her mask and wouldn’t even take it off to drink water. 🤣) I was so grateful to see her in person instead of via a video call.
I also had a former student contact me this week, and I always love hearing from former students. He apologized for not reaching out sooner and thanked me for some of the life lessons I taught him while he was in high school. He also thanked me for authentically sharing my health journey via the blog. He thinks it is courageous to do so. At the end of his message, he reminded me that my husband and I are both lucky to have each other.
Speaking of that . . . Since my last blog post one week ago (You Are So Lucky!), two more people have told my husband how lucky I am to have him in my life. When I say that it happens frequently, I am not exaggerating. My husband responded by saying that he is the lucky one. ❤️
Brutal. Increase in intensity of physical pain. The mental load.
Beautiful. The courage to keep trying. Moving through my feelings and emotions in a healthy way. Cousiblings’ Night. Seeing one of my closest friends in person. Hearing from a former student. My husband’s love and continued support.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life
This Brutiful Life 