I’m happy to report that I had a great stretch, which coincided with moving! I felt really well for about a week. Timing could not have been better, and it’s a relief to have the move behind us, not to mention to be living so much closer to my doctor! It has also been very nice to not have to drive anymore. In our new neighborhood, we walk or take the train everywhere we need to go. Sure, the walking is its own kind of exertion, but I choose the speed, and it is much less cognitively taxing, and much easier on days that I’m not feeling well.
The bicillin butt injections are underway. Official report is that they suck. It is very painful, and the injection site remains sore for days afterwards. That being said, it is in’t unbearable, and I am still able to sit, sleep, and walk without much added trouble. If I have an injection in the morning, I am very tired for the rest of the day. Fortunately, living closer to my doctor means I get home quickly and can rest until it’s time to pick up my son from school.
I am definitely experiencing a worsening of some symptoms from the injections, as anticipated. I felt okay for a few days after my first injection, and then hit a wall on day 4. Physical and mental fatigue, joint pain, nerve pain, face droop – the whole shebang. My next injection was 5 days after the first, and that one really hit me two days later, which was yesterday. Yesterday was not a fun day. I felt completely terrible, and my son’s school was closed for a religious holiday. GREAT TIMING. It was horrible. The fatigue and fog felt like I was under water all day. Let’s just say there was a lot of tv viewing happening.
Today I feel somewhat improved, but still not very good. Tomorrow is my next injection and IV nutrient infusion. This will be my first week with two injections. I have to admit, after the day I had yesterday, I am feeling a little bit of dread about my remaining 10 (Ten! TEN. Ten? TENNNNN.) injections.
I also had my neurology follow up today. It was a little awkward because it was with an Infectious Disease neurologist who believes that many people have long lingering effects from Lyme Disease (good), but who doesn’t believe in longer term antibiotic use for those patients. So…there was a disconnect there. She did however have a helpful recommendation for cognitive therapy. She said the she has seen great results in patients with neurological symptoms. You basically see a speech therapist and do different exercises that can help rebuild pathways in the brain that have been damaged.
As for my MRI results, she only had the print outs and needed the CDs (ugh…oops), so she couldn’t comment on my specifics, but reiterated what I already knew, which is that people can get lesions/inflammation of the brain for a whole host of reasons, only some of which are worrisome. I’ll get her the CDs, and we’ll go from there, but based on our review of my symptoms and my examination, it does not appear that there is anything to really worry about with regard to my brain. I am excited about the cognitive therapy and feel good about having something tangible to *do* to help care for my brain.
So that’s it for now. Two butt injections down, 10 to go, and an incredible amount of boxes to unpack, which pretty much seems never ending. One foot in front of the other.