"You've come a long way, but you still have a long way to go," Dr. L told me over the phone on Friday.
And he was right. Both statements are true.
For the first time in 6 years, I went to Walmart a few weeks ago. You'd better believe I was beaming under my mask! I walk 1 mile almost every day and recently completed a 2 mile hike. I was able to attend my brother's wedding on May 8th, although it was a push that left me crashed in bed for 3 days afterwards. I'm living in a season of firsts and am filled with awe and wonder. I'm thankful God has brought me this far.
Currently, a good day is when I can be up for about 4-5 hours in the morning mostly doing sedentary activities, rest in bed all afternoon, and walk 1 mile outside after dinner. This is the most I've been able to do in years, but I'm still quite limited. I still have a lot of fatigue, brain fog, and get headaches easily. I have at least low-grade fevers daily and often experience sweats and chills. I have occasional GI upset and sometimes feel like I have the flu. We need to keep fighting the infections.
Yesterday Dr. L started me on step 1 of my new treatment for Babesia. It's a supplement to help break apart the Babesia biofilms. Then in a few weeks I'll likely be adding a new medication that attacks Babesia. Eventually, I'll probably be on 5 different antibiotics and herbs.
Dr. L has been honest with me. These treatments are going to be very difficult, and I'll worsen before improving. Today I'm already feeling the effects of the new supplement with increased fatigue, fever, and feeling run-down.
Every day for the past several years I've kept a daily symptom diary and a log of when I start or stop medications or supplements. Now I'll have to email Dr. L a summary of this every 1-2 weeks so he can judge my response to treatments. I receive routine blood work monthly and test my urine 2x a day. I also have to monitor things like my blood oxygen saturation levels. My grandpap says it's like I run a lab. Maybe someday I will. ;)
We don't know how long I'll need Babesia treatments, but I've been told to expect about a year. I'm not exactly looking forward to it, but I also know that while they'll initially make me worse, in the long run, they'll make me better.
While this is intense, I am thankful God has placed me in good hands. Dr. L has studied Babesia extensively and emailed me a 6 page document he wrote about the treatments and a PowerPoint presentation. He is knowledgeable and sympathetic as his daughter has Babesia. He responds promptly to my emails, and he is willing to treat me, although I'm a complicated case. He has encouraged me by sharing his daughter's own story and how she has improved greatly on Babesia treatment. Healing is possible, and I am hopeful.
Often I listen to This Is Your Fight Song from the Piano Guys. The music invigorates me when I'm weary. It begins with this beautiful verse from Amazing Grace,
"Through many dangers, toils, and snares,
I have already come.
'Tis grace that brought me safe thus far,
And grace will lead me home."