Last Sunday, we were able to have a Cousiblings’ (cousins who are more like siblings + spouses/partners) Night with my cousins on my mom’s side of my family. It was an outdoor event, but everyone was prepared to wear masks in case we needed to move indoors. We were so grateful that we could attend. We had a blast getting to see everyone, and my cousins always have a way of making me feel like my presence and safety matter. We always feel loved and included with them, and it means the world to us. It was so good for the soul!
Then, on Monday morning, I woke up with a rash on my cheeks (see image #1 below) along with increased abdominal pain. At first, I thought the rash was from the sunblock from Sunday evening, but I have had this skin rash before not around using sunblock. Previous doctors believed that it was due to SIBO, but I am not sure anymore. It is always difficult to determine if a rash is due to a histamine reaction to a treatment or due to my body trying to detox because of a treatment. Then, Tuesday was another treatment day, and my face got super red for a short time in the afternoon which caused the same confusion as the rash (see image #2 below). We basically just keep trying to move forward and see what happens to determine how to proceed. There is never a dull moment on this journey.
Prior to the rash and redness, my doctor had me cut the current treatment dosage for Babesia in half since my body had been struggling with the full dose treatment. My body seemed to tolerate the 50% dose, so then he had me try 65% of the full dose on the next day of treatment. The 65% dose caused more fatigue, but it was tolerable, so our plan is to try to keep decreasing the number of days between treatment while keeping the dosage at 65% for now. In one of the voice messages back from my doctor in our patient portal conversation, he told me that I am doing a great job of listening to my body and noticing when I need to adjust dosages, and I should keep up the good work! The encouragement was nice to hear.
One of the strategies my doctor has me implementing to detoxify the body from all of the toxins and to help my body tolerate treatment is to do castor oil packs (see image #3 below). I basically place a castor oil pack on the right upper quadrant of my abdomen, and keep it there for a specific amount of time. Castor oil packs cause quite a mess, so I have to wear old clothes that don’t matter (as you can clearly see 🤣).
This week was also super busy at work. My cousin and I are moving at the speed of light to get some major work tasks accomplished. We have had to work as efficiently as possible to get as much done as we can each day before my extreme fatigue and brain fog set in. We have worked really well together to get very important tasks completed. Even though I don’t prefer this type of work stress, it has reminded me how good of a team my cousin and I are. Yay, us!
I have also been asking the Universe and my grandparents who have passed away for some more signs this week that I am not alone and that I am still on the right path since treatment has been very difficult and there has been a lot of confusion. On Wednesday, I was watching an entertainment news show that was interviewing a celebrity. I almost turned the show off, because I was not that interested. I decided to keep watching for a few more minutes, and the very next minute after making that decision, the celebrity was discussing chronic Lyme Disease and how the medical community has previously gotten Lyme Disease wrong. He was trying to use his celebrity status to get some attention on the Global Lyme Alliance. What are the chances that I am watching a show, almost turn it off, decide to keep watching for a few more minutes, and the person immediately starts discussing chronic Lyme Disease? I know it could be a coincidence, but I believe it was a sign to keep going.
Like I have said many times, there is no road map on this journey. I don’t know anyone else who has traveled this exact same path, so I am winging it every single day. I have to constantly remind myself that I am doing my best in a very difficult situation. I have a lot of pathogens that all need treatment. I have to pay close attention to my environment. I have all sorts of weird symptoms from the pathogens and side effects from treatment. I also have to trust that all of the members of my medical team know what they are doing and have me on the right path. As I am sure you can imagine, some days are easier for me to trust in the process than others.
Brutal. So many unknowns all of the time. The mental load of managing my health situation.
Beautiful. Cousiblings’ Night. Words of encouragement from my main doctor. Signs from the Universe and my grandparents who have passed away. Reminders to myself that I am doing my best.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 