As I am sitting here, I feel my energy waning, my head getting foggy and my sight and coordination is getting worse. I realize that this may not be the best time to put a message out, but I want to share with you the toll it takes to undergo treatments.
I just completed our first 6 rounds of Rituxan (for SPS) in order to try to have a better response and maybe, just maybe, a more sustained level of effectiveness. As they say – “flatten the curve” well that is what we are shooting for. I can say that it has been positive, as I announced in my last post. I am walking some, and that is a HUGE improvement.
Walking after so much inactivity is difficult; I still remain unbalanced and have seizures (several times a week) along with spasms and the walking drains me quickly and is short lived. However, I will take this as a win.
The treatments are not easy as I have mentioned, if I do the Rituxan for SPS it flares up the Lyme. Furthermore, as I do the Lyme treatments, which in itself is a living hell of herxing, (a reaction from killing off the Lyme, causing extreme nausea, hives, muscle and joint pain that moves, and can also increase nerve pain). All of this also sets off the SPS and may result in spasms and freezing seizure-like episodes . It is a balancing act on what I personally can endure and is it worth it? It is finding acceptance, getting past the anger, the sadness of what you have lost, and relearning boundaries. In summary, listening to your body. You have to decide what you can take personally, it’s about your own personal limits….
Those limits can stretch and bend with time and you must really believe and internalize that you can do so much more than your mind tells you. This applies to not only Mac out on the trail, but to all of you reading this post. Don’t worry too much about the problems you face today, just take a moment, breathe, and have the patience and knowledge you can get through anything no matter how big or small.
So with that said; it is time for me to acknowledge my limits and go rest!
Keep fighting the good fight and thank you all for your support!