Friday, May 20th, the first time in 2+ years that I've not had something either hanging from my chest or taped tightly to it. Liberation!! My chest cather was beginning to show signs of infection, right on schedule. We had reached the 9month mark with Cather #4, and my worry began. I really think you have the power to think your body into action! My anxiety began about the cath becoming infected, because we'd not passed the 9 month mark with the prior caths. Then, all of a sudden, it was time to start the antibiotics and remove the tube. Which came first, my thoughts, or the lil bacteria critters? I dunno, and it really does not matter, its just a deep thought to consider over coffee.
Whats better? With the steroid use, we do not require Catheter #5 at this time. Yeah baby! Sure, it may be needed again one day, and if so, ok. I continue to have major reservations about being on steroids as a maintenance drug, but for now, I release control of the situation...as if I had any.
It really has been a mental struggle these past months, to realize we'd reached the end of the possible drugs to try, with the exception of Rutixan, and even this one they are reluctant to use. We met with our Dallas specialist yesterday, and he smiled and said that right now, most MuSK MGers end up here. It is what works, and that many will choose pheresis over Rutixan. Huh? Really? ...wow.
So we are here! Where? Right here! Next steps are to attempt to decrease the immunesupresant drug and see what impact this has, if any. From there, balance on the steroids. For how long? Who knows. Are there risk/benefits? Yes. Are there options..of course...but they dont involve functioning well and living the life I've been blessed with.
I release the make-believe control I have over this walking science project..for now. I'm trusting those who spent a whole lot more money on their medical degrees, are taking care of me. I'm trusting this is exactly as it should be..for now, and that its ok to rest and be strong. I'm trusting God has us here with purpose, and expect this is an answered prayer all wrapped up with a bow, that we simply haven't opened...yet.
I give my self permissions to release control..for now.. :)
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Smile because you can!
Life is such an amazing adventure! One day you're cruising along with certain expectations, a planned route, and plenty of gas in the tank. The next, you're not sure where you are on the map and your compass fell beind that comfy seat you were in.
Smile because you can!
About Me
- Rachel
- Austin, TX
- My name is Rachel, and I have a neuromuscular disease called Myasthenia Gravis. This crazy condition was bestowed upon me in late 2008, and has the ability to render your body weak and sometimes useless unless proper treatments are administered. I've learned so much, and I feel blessed I am able to share. I'm nervous to write, but have learned that I should. Maybe you'll take something away from my nonsense.