Today is my birthday…sort of. It’s my stem cell birthday. Last year, on this day, the stem cells were being put back in and neutropenia was about to begin. I have been following other people on Facebook as they get their transplants. I love seeing all the pictures of the food! It’s nice seeing Puebla and hearing people talk about the excellent care that they are given at Clinica Ruiz. They are such a top–of–the-line facility.
For me, this is a day of reflection. I was doing really well until COVID. I feel that I have taken about five steps backwards and it does not feel very good. Tomorrow I am going to physical therapy. I am really looking forward to it though I suspect it won’t be super fun. I have been dealing with a lot of spasticity and super tight muscles. The Terminator (my affectionate name for my physical therapist) will have her work cut out for her. Dick is going to go with me so that The Terminator can show him how to help me with stretches and releases.
HSCT has an 85% chance of halting MS. Any regression is a bonus. I know this. I knew this when I went. I had an MRI in March. I have no new lesions and no active lesions. It would appear that the disease has been halted. For how long is anyone’s guess. It has been a great feeling to not have an infusion once every six months. I can’t tell you how many birthday parties, anniversaries, etc, that I have missed out on because I couldn’t risk getting sick prior to the infusion. After the infusion, it took me about a week or so to recover, so basically I lost two months each year. Every year. For approximately 12 years. That’s two years of my life, if you think about it. Quite a bit to digest, if I don’t say so myself.
Yet I find myself in a bit of a funk. I know the statistics and I have been living with this disease for almost 17 years. I am still upset that I can’t walk like ‘normal.’ That I can’t run. That I still have to hold tight to railings when I’m going up a set of stairs. That I need to tell people to go ahead of me going down a set of stairs because it is going to take me a minute to get down. It always bums me out when I am waiting to cross a street and a driver stops and motions for me to cross. I always think to myself ‘no, you just go ahead. You’ll be mad when you see how long it takes me to get across.’ Gone is the ability to jog across the street. The reality is that the ability is not coming back, stem cell transplant or not.
I am still so thankful that I went to Mexico and that Dick got to go with me. I am still in touch with Ana and I have Facebook friends now that were in Mexico when I was there. I’m grateful for all of the support from my family and friends. I’m glad to be pretty much back to a normal schedule and not have to sleep quite as much as I did when I first got home.
Here are some pics from last year.
My stem cells making their trip back into my body.
A picture with The Legend, Dr. Ruiz! An amazing man with an amazing facility and even more amazing staff!
Spending a little time on the rooftop before neutropenia starts.
My Crazy Care Team, Dick and Ana. I could not have done it without both of them!
I am so proud of you and Dick for taking this journey together. Happy Birthday! You’ve come a long way, girl. Your resilience and strength are admirable. Keep up your amazing work!