Hope Infusion #11

Hello and welcome to a new week at Humbly Courageous. I am so glad you are here!

A couple of weeks ago, I received my 11th SVF (stromal vascular fraction) stem cell treatment. I have been doing these treatments about every four months, for four years now. 

I often question if it is worth it. Am I even seeing any benefits from this expensive treatment not covered by my insurance? Then I think about what I told myself when I began this. That even if it was the slightest improvement, it is worth it to me. It is my only option at this point, as far as “treatments”  for my type of Muscular Dystrophy (Bethlem Myopathy). 

I don’t have any huge updates, and I’m not doing anything new, physically. What I am doing, is continuing to stay somewhat stable with where my disease is. It’s hard to decipher what is disease and what is aging. I suspect most of my decline is disease related. However, when living with a progressive disease, staying somewhat stable is a gift, and certainly something to be thankful for. 

I definitely still have days when my weakness takes over, and it forces me to succumb to its demands. I really have to manage my physical efforts each day. Carefully weighing out what I can do, and what I need to do for the day. 

Last night, I realized that I haven’t really been using my wheelchair as much around the house. Not to say that I don’t still do that, but since this last treatment, I think I’ve only used it once in the house. That struck me as a slight improvement. I had been using it quite a bit. I am glad I have it as a backup for days when I do need it to get things done around the house. The reality that I still have somewhat of a choice, is not lost on me.

The energy boost I get from the treatment doesn’t start until about a week in. The first week is normally pretty rough for me. I have a lot of body aches, and some other varying symptoms. I try to rest as much as I can the week following the treatment to give my body time to adjust to the new stem cells that were infused. 

I focus on getting good sleep, good nutrition and plenty of water. I’ve learned over the last four years that I do better if I have some downtime afterwards. I’ve had treatments followed by a very busy schedule and that does not go well. I end up in a bad place when I do that. I try to schedule the treatments when I know I don’t have to be a lot of places that following week. 

As you can see below, since getting the treatments, my workouts have stayed pretty consistent. The graph below shows my thrice weekly water workouts. I do other exercises or stretching on my days when I am not in the water. Keeping my body moving is key to helping these treatments do whatever they are going to do. I do not work out the week following treatment. Light stretching is all I do that week. I also continue doing my alternative therapies like Craniosacral therapy and Rolfing to keep my body functioning to the best of its ability.

I have been feeling that nudging I get from time to time to tackle the “big hill”. That says something! 

That is the update for now. Of course, I wish that the treatments were helping more. I am grateful to still be doing what I am able to do today. I don’t take it for granted. I practice gratitude each day for the physical abilities I have in this present moment. Knowing I can lose something as precious to me as walking, and seeing how much of that I have lost over the years, is something that both breaks my heart and helps me to be more grateful for the smallest victories. I hope to continue to improve on my practice of gratitude in my life. It changes everything. 💚