I haven't been myself at all lately. The smile and positive attitude I have always attempted to maintain through all of this has taking a big fat holiday and left me feeling sad, angry and scared a good part of the time. As most of you know, I started what was planned to be a full year of monthly chemo treatments this past February. I went forward as I always have, thinking this time is going to be it, folks! I am going to kick the myasthenia's butt and we will be able to move on with our lives after 14 years of struggling with this damn disease. I had it in my head that this time around the chemo would make me better like it did last time, but that it was going to stick. (Last years' treatments significantly improved things, but I was still totally dependant on the IVIg every 2 weeks)
So far, things haven't been going as planned. I am not much better than when we started in February, and I now seem to be resistant to the IVIg- so I am getting steroid infusions once a week to keep me going. After each solumedrol treatment, I am a different person and can just about pretend I am not dealing with MG. That only lasts a few days, though, and sometimes not even that. Frustrating as hell, let me tell you. On top of all this, there seems to be some kind of complication with my liver, so I have to go in and have that biopsied in June.
I know the title of this blog is my story of LIVING with MG- sometimes it doesn't feel like living at all! It is constant doctors appointments, treatments, worry and the ever present ebb and flow of symptoms. For the first time I felt like I couldn't get out from under all this. I have had moments like this, but this feels like it has been weeks. My awesome friends have all stood by me and listened, and helped with the kids and meals. The other night I had this light bulb moment when I thought, hummm, I wonder if I am feeling so down because of the steroids? I mean, anyone would be down with all that is going on combined with the concern about my Mom's accident (she is recovering nicely- slower than she would like- but very well) and managing for 6 weeks while Jason was deployed. Regardless, it just isn't like me to get into a rut and not be able to get out of it. I haven't even wanted to write, because I felt like it would just be complaining. Over the years when the steroids took over my brain, I have lost some people who were very dear to me because I was so not myself. I become obsessive and worried and angry. Hopefully now that I am aware that this might be a big contributor to how I have been feeling/acting I will be able to manage it better.
I was prepared for Jason to go away. I was prepared for a year more of chemo. I was prepared for all kinds of things. Life just got in the way. We have to keep doing the things that make us "like everyone else" or things will just get worse. I can't stand feeling like a sick person all the time. Or having people judge our decisions and my treatment plans. I get that much of it comes from concern, but again... frustrating as hell. See, I need to do some of the things that other people do. I need to act normal because it is the only thing that seems to keep me from falling into the pit of "sick person". And when I have acted just like everyone else and I end up with symptoms, we deal with that. We can't have our children, Jason's job or my sanity become casualties of myasthenia. I won't allow it.
All in all, I am DAMN proud of all that we have accomplished. I am proud of Jason in all that he does, and extremely proud that he serves our country so honorably. I am bursting with pride over my children and how sweet and good they are (almost all the time! HA). I have wonderful parents, in-laws, and friends. God has blessed me in so many ways. The MG is just part of who I am. Sometimes it is a bigger part than other times. One day it will stop being the central story and become part of my history. It has shaped who I am, driven me to become a better person, and hopefully helped me to inspire a few people along the way.
Tomorrow (Tuesday) I go in for another dose of cytoxan. That combined with the steroid they will give me (decadron) should kick me back into gear. Thank you all for caring, for reading and most of all for loving me. Please send me some of that love tomorrow around 1pm if you can. I am always wrapped in my blue prayer shawl and sit in my green treatment chair picturing myself healthy and strong.
