Saturday, August 16, 2008
Frustration of MS (For you MB)
One of the most frustrating aspects of MS is the uncertainty. Will the disease progress? How far will it progress? How often will I have an exacerbation? When will I have an exacerbation? What triggers an exacerbation? Who can help? MS is a disease filled with questions that begin with Will, How, When, What and Why. Unfortunately, most of these and other questions don't have definite answers. Just when we think we've figured out the program/treatment that works for us and we have our MS under control, MS reminds us that IT is in control. It was simply ALLOWING us to live our life. I was reminded of this fact today. Not because of my own recent struggles, but because MS has once again reared it's head in someone very close to me. I've watched her very successfully find a program that works for her. She's active. Rarely battles TWF anymore, looks great and as a result of her recent success with her treatment (non-traditional) her mental outlook is so positive, you can't help but be positively motivated when you have any contact with her. I received an email from her today that she is in the midst of an exacerbation. Having numbness on one side of her body and her feet. Needless to say, like the rest of us, she is disheartened and her own private voices are whispering. As of today she has decided, after talking to the neurologist on call for her regular physician, not to do steroid treatment. I, for one, understand that decision. Steroids are tough on the body. Especially when they are given by IV. She an I are very much alike in how we battle our disease. We both tackle it head on, refusing to give in. We also tend to wait longer than we should before we "give in" to the steroids. Always hoping that we can "mind over matter" whatever symptoms we are experiencing. I told her in an email not to wait to long. If her symptoms progress, take the steroids. Of course, I also understand that "giving in" and having the steroid treatment often makes us feel that we were defeated by the disease. That we couldn't hold it at bay on our own. However, that's not the case. Again, it's all about perspective. I look at steroid treatment as a last resort (because they SUCK). However, I also look at them as the final weapon in my arsenal that I KNOW will beat back the beast. The big guns. When my body is simply too tired, too beat up by the MS to go it alone, it's time for the steroids. Kind of like life in general. When things get tough and the road is bumpy we turn to friends and family. We each have our own personal "big gun" in our personal lives. MY big gun GOD. So tonight, I'll say an extra prayer for her. Not only that she comes through the exacerbation, but that she comes through even stronger than she was before if started.