"A Fresh Wind & Energy to Treatment"
- Jul 14, 2021
- 4 min read
"Children are always looking at the world as if it was for the first time in their lives. So, we should always look to the world with the eyes of a child. I am not saying be naïve, I am saying be innocent in the sense of discovering things." -Paulo Coelho
Month 4: Cycle 2, Week 2: July 5-11, 2021
This past week I was up to having five IV bags M/W/F as well as all the extra oral medications. The last evening IV is always the worst. Monday night was so very rough, probably in the top five worst thus far of treatment. At one point it felt like I could just die from this. Of course, I did not, but I have been experiencing a great deal of pain, nausea, longer lasting herxing, and fatigue. If I do not rest by sleeping during the day, nights tend to be a lot harder. I have been continuing to do as much detoxing as possible to get the die off out of my system. To the folks specifically praying for me that night, I really appreciate it! On the last night of the week, I was pleasantly surprised that with the accumulation of all the meds, I wasn’t more severely sick and actually made it through.
Hannah has been interested in treatment and how the medications work. I gave her a mask with the rules of how things work with the IV, gave her a mask, and deemed her Nurse Hannah. She brings a fresh wind and energy to treatment. On the last day, she even worked with Grammy to administer a flush after I finished my last AM bag.
Samuel has also been sweet. He calmly and carefully checks in with me. Sometimes he gives me a gentle hug and then hops up on my bed to say hello. One morning during an LR bag this week, Samuel and I had the honorable job of sound effects for Hannah’s very creative puppet show.
At the end of the week, I even got to play a new game with Billy and Lydia. I lost horribly, but it was nice to do something engaging. Though it’s hard for my brain to process all the moving parts in games, I try to challenge myself to remember and think through how I might could strategize.
Had an involved weekend for myself. On Saturday, Dad took a few of the kids and me to run errands. Its few and far between for me getting out of the house. It was kind of weird even. Hannah was my helper getting groceries, while Samuel helped me out at the bakery. To Your Health Bakery is amazing and the owner is very familiar with Lyme Disease and other health limitations. Definitely check them out!!! https://www.toyourhealthbakery.com/
Sunday was a bigger day for me. Mom took me to the corner to meet up with Lydia’s crew to send William off to Boy Scout camp. It was hot out and that was about all I had to offer physically for the day, but I was so glad to be a part of sending him off.
Though drained, I have a project I am trying to work on in which I needed stones from the mountains. After a short break, Dad took Hannah and me on a short trip to Cedar Creek. All three of us found great rocks. As Hannah found rocks assigning them each a purpose and a plan. Right at the end of the trip, a bee stung me. I did not have to use my epi pen, but I quickly acted. I got the stinger out, popped some Benadryl, put cream on the sting area, and got ice on it as soon as we made it back into civilization. I did hurt but Hannah was genuinely concerned for me, so I was an extra brave girl for her. Oddly, the sting seemed to trigger herxing, as well as a migraine and general sense of feeling unwell. With all that my arm felt weird, but I was okay. We are keeping an eye on that situation. Even though each joyful activity comes with a string of Lyme, I am glad to have small pockets of joy nonetheless.
Sunday night, Mom changed my bandage. My skin is still very raw and irritated with a significant amount of blistering. The nurse gave us one additional suggestion to possibly help. If the most recent suggestion doesn’t work, we will definitely be looking into having a procedure done to help avoid some adhesives involved in bandage.
On Monday I will be starting a new medication taken away from any IV or oral antibiotics. I will do an LR bag each day a couple hours apart from the new medications. I should have an update on that midweek.
Please bear with me on timeliness of updates. I may start typing one and then not get a chance to finish or upload for half a week later.
I appreciate all your prayers and keep them coming.
Request for this week:
-My skin with bandage changes
-Wisdom as to what I need to do next steps with the bandage concerns
-Rest, Rest, Rest!
-Relief for my eyes, as well as wisdom as to next steps with the specialist
-Comfort as treatment becomes more intense and painful and peace as so many thoughts and questions begin to build inside me
- Productive detoxing
-Deep sleep at night
-Awareness of all the pockets of joy
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