I apologize for the delay in posting this entry. This past week was insanely busy! I’m sure you’ve felt it, too; how time seems to speed up the closer we get to Christmas. Amid the feeling of being rushed, though, is the potential to create beautiful and joyful memories.
For instance, last Friday, my fiancé and I went to the ICU Christmas party. The party was biker-themed. I wore a mask (because it was a bit crowded and I still need to protect myself from germs). I didn’t want to feel like a patient amid doctors and nurses, so I decorated the mask, biker-style:
The mask came off briefly for pictures with my person, though:
Somehow, the next day, we were able to squeeze in some holiday decorating. Our tree is a Fraser Fir, it’s approximately ten-feet tall, and it smells spectacular! When I look at this tree all aglow, I reflect on holidays past and am excited for the Christmases to come. I don’t often feel joy, but when I see the star on the top of this tree, it takes me back to childhood, when Christmas was pure magic.
Decorating was cut short by a follow-up transplant appointment in Boston. The appointment was scheduled for 9:30am on Monday, and, since the trip usually requires 4.5 hours of driving one-way, we decided to book a hotel for Sunday night. I drove the first leg of the journey:
I think I have always admired Boston. I wanted to go to grad school there, but plans change, and that’s okay. The city was incredibly beautiful Sunday night, as we walked to a restaurant for dinner.
It was quiet enough in the restaurant, that I didn’t have to wear a mask. My only real worry was having hat hair (and my fiancé taking a picture of it):
It’s a welcome change to worry about trivial things, like messed-up hair.
My appointment went extremely well. I am now officially OFF of Prednisone! My lead doctor decided to give my body a chance to adjust to being without steroids before we begin tapering any other medications. Other notable changes include:
- I will begin tapering my anti-rejection drug on January 1st, 2019. I will admit to being afraid of this step—afraid that I’ll develop Graft vs. Host Disease without the anti-rejection meds and/or the steroids—but it’s a step that needs to be taken.
- It’s a little thing—but I can add honey to my tea again!
- Masks are now only required in crowded, public spaces or in doctors’ offices. Quiet restaurants during off hours? No mask. Quiet movie theaters? No mask. Of course, this taste of freedom comes with responsibility—frequent hand-washing and the use of hand-sanitizer are both still required. I must also avoid individuals that are coughing, sneezing or are ill in any way. I also cannot be around individuals have spent time with family, friends, or co-workers that have been ill or recently vaccinated (my fledgling immune system still can’t handle the live viruses used in most vaccines).
It’s a lot to process, but these are enormous strides toward being “normal” again. I don’t expect 2019 to be an easy year, but I do believe it can be a wonderful one.
Thank you, Dear Readers, for taking this journey with me. Your prayers, kind thoughts, and light have carried me through so much. You are appreciated!
With Love & Gratitude: