Plan is back on track. Dad took me to Rush get additional mammogram screenings this afternoon. The doctor showed me that there were some nodules she wanted a closer look at but that everything is clear and they were able to get the baseline pics they needed since it was my first mammogram. She was able to give me the form I needed so that I could get that turned into Northwestern so they can request Cigna approval. I’m planning for that next week…..let’s hope Cigna agrees.
On Monday dad took me to the neurologist as a follow up appointment from the steroid infusions. The timing was good because I have been steadily declining. I can’t remember the last time I drove- I only remember it was to meet a friend for dinner a couple blocks away. I can’t go out alone now at all- I used to be able to uber. I now have to have friends meet me here for dinner. My friend Kim and her daughter have been sleeping over on the weekend which has been a huge help. They are also going to take my dog Zoe the whole 6 months during and after transplant so that will be a huge help.
I started using a 4-prong cane but need a walker- my friend Kim will bring me her dad’s next time she comes out. My fatigue is overwhelming, my balance is at an all time low- I’m holding on to stuff not with one hand but reaching out with my other hand now too. I feel like a bobble head doll. I’m taking extra antivert for the vertigo. The steroids have my muscles feeling loosey goosey when normally they are tight and hurt. Just taking a shower is kind of scary and I need a chair in there for now- thankfully I have a huge walk-in shower. Yet, even with all this….I know that I’ll be okay, this is temporary and the transplant will help. May isn’t that far away I can hold on. I just can’t decline further. So the neurologist didn’t like the decline, but he said that this can happen with steroids during the taper period. He said we can wait a couple weeks and see if I start to improve since I’m down to 1/2 pill now. I agreed. He said that if I don’t improve we can either repeat the steroid infusions or he can give me athcar injections for my adrenal glands to make their own steroids as kind of a more natural option….however that comes with a hefty price of $50k so it’s not a first course of treatment option.
Yesterday was the best day I had in awhile….I got in a whole 2500 steps which is really pathetic but when it’s been hard to get 1000 steps in a day it’s something. I was starting to feel a little hopeful that maybe this was starting to pass. This morning I had a very scary shower. I felt like I was going to pass out and I had to tell myself “get out of the shower.” I was able to get out safely and collected myself but it was a wake-up call. My dad suggested maybe my blood pressure was low. It may have been I did take it later at his suggestion and it was okay by then. My goal today was going to be 3000 steps and it looks like I will be meeting that goal after all since I did all the walking at Rush today. Usually I make little trips to get steps in, like one trip to the garbage chute, then another trip to get the mail, the end of the day I take out recycling.
I’m really hoping that this steroid coma I’m in lifts soon because I am anxious to get down to the workout room and push and lift some weights before transplant. And I’m tired of “moon face” but more than that my neck is just so tender. Sigh.
So for now…..I’m spending my time researching gluten free recipes and cooking. I’m even growing basil. And I’m finally able to tackle paperwork and get organized and focus totally on me and that feels great. Still feeling very grateful and breathing better than I have in forever.
Hopefully my next update will be with insurance approval. 🙂