Post-surgery, my goal was to become more consistent with posting but it’s gotten pretty crazy around here. I’ve been hesitant to share what’s going on, but I guess I’m as ready as ever.
Don’t get me wrong – things are going pretty well around here! It is drastically different; this time last year, I could barely leave the house, I was sick & afraid; nowadays I’m discovering my passions and chasing my dreams. For now, that means working 60-hour weeks & pursuing a Master’s Degree. I am fortunate that my body is ready to handle this kind of crazy, but honestly most days I am just surviving this insane routine. Leaving home at 6:30 am & not returning until 10:30 in the evening means I’m often cutting infusions & feeds short or forgetting them all together.
Last week I got news that completely stopped me in my tracks. I have been incredibly hesitant to share this because there’s still lots of unanswered questions. Through all this craziness, I still have to keep up with my health & medical appointments. Since having surgery just one month ago, my doctors have been working very closely together to help me get back on track. However, at an appointment last week they talked about stopping treatment completely. *To give you some comparison, in the same appointment I was told to stop exercising because my body can’t handle it. How does that make sense? How am I too sick for something that keeps me sane, but apparently not sick enough to continue treatment to get well?
You would think this news would be positive & exciting, but I am just terrified. I was totally caught off guard. A long time ago, I accepted that I may never stop treatment, so thinking it could happen now is unreal. I started treatment in June of 2012 and it’s been a consistent battle ever since. That being said – over the past several years of illness there has been permanent damage to my body. Going forward, if and when we do stop treatment, I will still have to manage the fact that the hearing I’ve lost will not come back, my body’s ability to manage eating will still be affected, the medical PTSD isn’t going anywhere.
I certainly need to digest this a bit more, get my questions answered and see where it takes me, but I’m sure it will be an adventure!