Thank you all for the support after my last post about the rough start to treatment. I appreciate all the messages as well as food that has now filled my fridge!
I’ve realized this has become the primary means most people receive updates regarding how I am feeling. After seeing a lot of people this week who still thought I was off treatment and not feeling well, I wanted to apologize for not posting any updates recently.
After we stopped the treatment and increased the steroid dose, the side-effects in my legs quickly dissipated. Once I was feeling better, my doctor and I decided to turn the engine back on and restart the treatment with the higher dose of steroids.
Since the 13th, we have been monitoring for any side-effects, and fortunately things have been good! I even got out to the SF Botanical Gardens and Dolores Park this past weekend. I’ve said this in previous posts, but I think the mental and physical connection to our health is so important. To get outside after being cooped up in the house was incredibly rejuvenating!
Since I have gone a few days without having the side-effects I experienced before, we are going to try decreasing the steroid dose. I’m still in a trial and error phase to discern whether the side-effects were from the treatment or withdrawal from the steroids. Regardless, feeling good and tolerating the medication matters more than cracking the mystery of the past couple weeks.
Again, I apologize for not posting an update sooner. While I will continue to post treatment updates, I hope to focus my writing on the psychosocial and other elements of my experience that I believe are more universal in building connection.
For now, the engines are back on, we’re making some course corrections when needed, and moving forward again.