One Year Post
It has been a little over a year since I received my stem cells so my body could build a new immune system. My one year was October 29th. Yesterday I reached another milestone. On December 10, 2020 I got the OK to go home with some precautions. It was a very big deal to me. Through the grace of God my body got the Epstein-Barr Virus under control and I avoided a longer stay and IV medication.
This is a photo of my mom and I leaving the hotel where we had been staying since November 10, 2020. Mom says she looks horrible in this photo, but it was a real moment (no posing or beautifying). We were excited to leave but grateful for everyone and how the treatment progressed. I was glad to be home before Christmas since I had a new nephew that I had not seen except in photos.
So, what is up with me after 1 year of having a new immune system? I still clean eat as much as possible. I try not to be rude or look like a food snob when eating out with friends and do the best to find something I can eat on the menu without making a fuss. This is not something that occurs often. I now have curly hair and others that have had chemo tell me that this will be “short lived”, but I am hoping that God allows me to keep my curly/ wavy hair. I am still learning how to manage it, but my hair guru/stylist has been a huge help and encourager. Let’s hope that it stays.
In May of this year, I started physical therapy. Things have been progressing very well, but I put a lot of expectations on my body. Sometimes I think I am being unrealistic but then I know that God can do the impossible. I feel better than I ever have in the last 5 years since my diagnosis. My walking and balance have improved so much that I am more confident when I move about in public spaces. I can step off of the sidewalk with confidence. My cognitive processes have improved so much that I tend to breeze through my work and rarely get “stuck” and I think more clearly. I actually have dreams now. It has been a long time since I had a dream. The only time I dreamt in the last 5 years was in July of 2020. Everything was silent again until October of this year and I started having dreams again, almost nightly.
Yes!!! I can balance and catch a ball! Something this video does not show is that the parking lot is in front the windows, I sometimes find myself watching people in the parking lot and then realize that I am throwing and catching a ball!! That never would have happened a year ago!
If you read my last post, you know that I had a battle with Shingles. They are clearing up and I only have a few light spots left. I will be so glad when it is gone. I will be real and say that I was very concerned that I would end up with permanent nerve damage because PT was very difficult, and I actually took a couple of weeks off. I even had trouble on my right side (which existed before Shingles). As you can see in this video, I am recovering nicely. Balancing like this can still be a challenge but at least I can do it. I hope to post more videos but filming during PT can be difficult especially if there are other patients in close proximity.
I have had the opportunity to continue to participate with HSCT Warriors. I tried to do a celebration and fundraiser at my 1-year mark, but it was a big flop. I was surprised that there was not more participation and have found that things were not as I thought they were. So next year I will focus my energy other ways and probably only have a small party with family and friends. For those that donated and participated in the auction, I am grateful. I was also able to do a webinar with Dr. Cohen and HSCT Warriors to help people with MS understand what is happening at the Cleveland Clinic.
I have been able to do what I love, “ministry with students and families”. My church has been very supportive while I was dealing with the struggles of MS but now, I can be the church wherever I go without the worries of disease activity.
The MAC
I have been able to participate in more ministry opportunities. Families are my passion and the kids at the MAC are fun and genuine. They keep me active, for sure!
Here are some photos with my Prayer Warriors at our fall outdoor service at church.
The students at Grove Kids have been keeping me moving and are a pleasure to be with each week.
There has been a lot of support from my Physical Therapy Team at Oxford Physical Therapy. I also have been pursuing alternative therapy at Chill Zone Cryo. Lisa and Charles are always keeping me informed of new research.
Oxford Physical Therapy
This is my PT Team!
A combination of LED light bed therapy, Whole body Cryo, and NanoVi helps me stay healthy and improve my recovery. Click on the title above to learn more.
As I reflect, it is hard to believe that it has already been 1 year. I am praying hard and seeking direction for my recovery and would love to see improvements on my MRIs coming up in April of 2022. Doctors tell me that if it happens it will not be until I reach the 2-year mark or later but when I look back and see what God has already done, I know that He can do this too. I pray for opportunities to share my story beyond this blog and my YouTube Channel to inspire hope for many people that feel like there is no hope. God can do the impossible! Stay tuned for more updates.
Until next post…. Make it a great day and be the church!
