Nothing like finishing the year with an unplanned surgery. Yesterday, I ended up having a surgery biopsy of an artery near my left temple in an effort to learn more about a new possible diagnosis. All went well, I was thankful for my friend to take me and despite being a late add the day after Christmas, I made the most of it. Here is a link to the condition they are “treating for.” Basically, it’s yet another autoimmune issue.
The hardest part continues to be taking such high dose steroids again. I needed a iv dose on top of everything else so sleep is hard to find. Luckily the pain is well managed with my usual and just a little extra Tylenol. The results will be pending until I follow up with the rheumatologist on Tuesday. still figuring out transportation for that trip too.
In the meantime, I have a long awaited neurologist appointment on Monday to hopefully establish local neurology care and possibly go back to botox shots for my migraines. I made this appointment over the summer, so I hope it will be worth it. I’ve heard good things about the provider. Its hard to keep my expectations low at this point with a new provider, because even those that weren’t able to make much of an immediate difference, usually have something to give. For example, the neurologist I ended up working with in Florida was convinced I had MS, but his help really came in finding me a way to attain my amazing power wheelchair.
And it goes like that. Some providers have the clinical experiences and are up to my challenge and others have a human side that rise to meet me as well. There are few in between that possess both features and for that I am most grateful. Either way, I have learned to not burn bridges for you never know when you may need them again. Chronic diseases cause extreme burnout for the patient and the providers, but with some patience, it can be managed.
For this weekend, I will rest and recover, from Christmas, from surgery, and from chronic illness. I am working hard on a reflection of the past year, so that will be coming up. I think I am finally ready to embrace a New Year’s tradition that doesn’t work around a school calendar!