Over Two Weeks Out of Stem Cell Surgery
Here I am over two weeks out of stem cell surgery after being so unsure for seemingly a very long time if I would make it all the way to the OR. I did and I’m so grateful! Yes, I still have ALS but I feel like a warrior that was slipped an extra weapon that my comrades don’t have access to. I don’t know how to express it really, it’s just something I wish we all had as an option right now. I can’t say with official data whether or not I’ll live longer, but I have this feeling I can’t shake. The only thing I know to compare it to is some type of survivor’s guilt. I ask myself a lot, “How did I end up with this opportunity so many want to be a part of? Others surely deserve it more than me.” The truth I know is we all deserve anything out there that has a chance against ALS. That includes me. I tell myself to stop feeling and thinking in such a way. I’m getting there.
I’ve had incredible support in this time from complete strangers, my entire family, friends, my study team and my ever-loving, always there, husband and caregiver. Grateful as I am and tough as I like to think I am, it has been painful. I’m improving daily though. The real tough pain is for the most part over as long as I don’t overdo it.
I went To Emory this past week to have the stitches removed. The last few days of having them in felt more like barbed wire in my head. It hurt during the day and itched like crazy at night. It feels so much better having them out. I can put a bit more into range of motion excercise without the tight skin feeling in the way now. From the beginning, I don’t know why and it’s not a concern now, I had less pain and faster range moving my head to the right, the left is now catching up. Moving my head up and down is coming along too. The most painful and frustrating is trying to move my body from the waist down and back up. That’s still a tough and painful movement. The frustration comes in
I see this has turned out quite long very fast so I think I’ll wrap it up. even though I have much more to say. Things about the study, My new medication routine and side effects it came with and just other ramblings about myself. Having had time to heal from the hardest part of recovery has me now feeling up to writing more. The surgery wasn’t the end of the study at all and that is my number one priority. I do hope to write weekly. It may be sometimes more or less. I will continue to give updates on the study that are my experiences and personal opinion.
I’ll end with saying I feel extremely positive about being in this study and what I believe it holds for our future..
Thanks for reading.
Until next time, take care,