**Warning: I'm going to get serious for a minute so if you want to laugh, discontinue reading.**
...yours life changed in an instant? What if your whole world got turned upside down? Would you throw yourself a pity party? Would just say "oh well, it is what it is" and move on? Would you lash out at everyone around you and alienate yourself?
You may think you know what you would do; but the truth is, unless it has happened to you, you don't know what you would do. I have had my life disturbed a number of times. Family members dying, my mother getting/fighting/beating cancer, scares with my kids, and my various health problems have all been dumped in my lap. No matter how bad I felt, I stayed strong, I persevered, and I came out okay on the other side. This time, I'm not so sure I'm going to come out okay on the other end.
A couple of months ago I went into the ER because my blood pressure was way to high. The Neurologist that I saw performed his exam and then asked me if my feet have always been like this. WTF? I always thought my feet were fine. I knew I had high arches but he also mentioned hammer toes and I guess I have those to0. In relation to these findings, he mentioned a rare genetic disease called Charcot-Marie-Tooth Disease. This disease causes neuropathy and I have known that I had that for a couple of years but we never knew why. Nobody else in my family had this disease that we knew of so really, what was the odds that I would have this rare genetic disease out of the blue? I researched and the more I researched, the more it sounded like me. I went to my follow-up visit with a different Neurologist and I mentioned this disease and this doctor and his attending kind of blew me off because I had no known family history and it's rare. They did some of their tests and then realized that maybe the first doctor was right. They sent me for a genetic blood test and for an EMG.
As my luck would have it, all of the results came back that I do have Charcot-Marie-Tooth Disease. It is a progressive disease. I fall somewhere in the middle as to how fast it will progress. I'm unsure of the exact subtype yet but I have to go to the Muscular Dystrophy Clinic to be evaluated. This disease is one of the 40 diseases that fall under the MD umbrella. It is rare because only 115,000 people in the US have it. There must be at least 200,000 people with it to get off the rare list. There is no cure and the only treatment is to treat the pain and physical therapy to try to keep your healthy muscles healthy.
For a while I was throwing myself a pity party. I was sad and moping. I've cried. I have felt so alone and like nobody understands. I think that was good. In a way I was grieving because I did lose a part of me. I won't ever be able to walk a long distance again. My hopes of joining the FBI are gone. One day I may end up in a wheel chair. I think I have grieved what I needed to and now I'm ready to fight. I'm going to live my life the way that I want to for as long as I can. I may be slower, but I'm not going to give up. I'm going to be happy and fill my days with happy memories. This disease is NOT going to win. I may not beat it completely, but it will not rob me of my happiness or of who I am. CMT, you can suck an egg for all I care!
If you are interested in reading more about CMT, you can follow the link here.
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I love you, Angie.... we are here for you.
ReplyDeleteI'm so sorry to hear about your diagnosis, Angie. But it's not going to get you down for long because of that unbreakable spirit of yours! It's so clear in the last few sentences.
ReplyDeleteYou were right to let yourself grieve, and you're right to be steeling yourself for a fight ... and you're right to expect a triumph!
In some sort of way, I kind of know how you feel. Mike's liver disease (PSC) is really rare, too. Although I'm not the one with the diagnosis, I do take a big part in what he deals with everyday. The things that have helped us the most are allowing Mike to have occasional and necessary pity parties, advocating for ourselves big time, staying positive (even when the other one is not), and finding support. When we first met over six year ago, I thought I was going to wear my eyeballs out just trying to find information on PSC. After that, I felt the same way when I was looking for a PSC support group. I finally found on online, that was based out of Europe. We started there. Eventually, other Mayo Clinic patients in the US started a facebook group. That silly facebook page has helped us more than you can imagine. Mainly, just knowing that someone else understands all the "crap" you are dealing with, is a huge help. Without that, you can feel so misunderstood and alone.
ReplyDeleteLike Rita said, you will triumph with your positive attitude.
Keep fighting the fight. We're all here for you!