Four Years!
It is so hard to think that four years ago I was laying in a hospital bed at the Cleveland Clinic in Cleveland Ohio waiting for bloodwork to confirm that I was ready to get my stem cells and my body would start creating a new immune system.
As I write this I remember waking up that morning and having such clarity. I didn’t realize how bad my “brain fog” really was affecting me. It was so much to take in. I was overwhelmed at that moment. I remember crying so much. I wasn’t sad. It was tears of gratitude. I couldn’t believe that I was getting a second chance to live without disease progression. I have been filled with more gratitude than I ever could have imagined.
These four years have not been easy physically. I was not a patient that experienced lots of physical improvement. I haven’t ran any marathons and most days I am just happy that I can still walk, even if it isn’t graceful. Honestly, it is exhausting and some days I get frustrated that I have tried to do “all the right things” but nothing really seems to make much difference. I will have days that I feel very strong but then reality sets in and I realize that I just can’t do things the way I used too. I will take the good days as a “win”.
Maybe I push my self and have unrealistic expectations. The procedure worked. I don’t have any disease activity and my MRI has been unchanged for four years! I revisited my ortho to see if my issues may be related from an accident I had in 2018. My ortho agrees that everything still seems to be unchanged and they have no explaination for what is going on.
I am reminded that I can be at peace and God can give me the rest that I need. I am relying on His Word.
You keep him in perfect peace
whose mind is stayed on you,
because he trusts in you. -Isaiah 26:3
It would be quite rude of me to end this post without any updates. As I said before my disease is still halted and there are no changes with my MRI. This is worth celebrating. The goal of HSCT for curing Multiple Sclerosis is to halt the disease and have no new activity. Although my disease was caught early, unfortunately it was not early enough. I am not one of those individuals that has had so much improvement that I am running marathons. I struggle every day with pain and my walking is very cluncky and takes much effort to appear mostly normal. Occasionally I use a cane when my body is having a rough day.
One thing I can say is that I am persistant. I continue to try new things to help my body heal. I am attempting to get another round of Physical Therapy approved and find a facility that works best with my schedule. I am still working and there are days that I wish I was in a better situation where I could prioritize my health without sacraficing my income.
Today I am also celebrating 4 years of prayers! There are countless people that continue to pray for me every day. There are not enough “thank you’s” that would satisify how much I appreciate all of the prayers and each one of you.
Until the next blog entry, make it a great day!
