It's so COLD today!!! I really hate winter...every year when the temperature drops, it seems like I don't warm up until May. This is one of my pool therapy days and I have to admit, I didn't want to go! The last thing I felt like doing was going outside in 17 degree weather, only to submerge myself in a luke-warm swimming pool...unfortunately, the YMCA pool isn't heated like it should be! Though as I do every week no matter what time of year, I pulled out my tattered bathing suit and packed my gym bag. Because when you find something that works for you such as aqua therapy, you stick to it like glue! And as I was driving to the Y, I got to thinking about my health, my therapy and all the great things it has done for me. It is just one of many things I have been doing for years, to make my life as healthy and happy as it can be.
I've always been somewhat wary of Western Medicine as the end-all, beat-all answer to everything, and in my own life I tend to look toward Eastern medicine first to find healing...whether it's for a cold, body aches and pains, or whatever else may be going on. I'm not always successful, but I always try! And when I have no alternative but to use Western Medicine, I am lucky to have one of the BEST doctors in the world! Dr. V knows my sensitivities to medications and my many allergies, and is very knowledgeable about CMT...in fact, after spending years going to a Neurologist (who seemed unable to do much more than conduct painful tests on me but for some reason could not find a diagnosis,) Dr. V was the one who finally provided me with the answer. I know I have talked about that monumental moment in my life before, but let me provide you with a little more background.
When I was 25, I wished to change primary doctors. A friend highly recommended Dr. V, and upon my first visit to her office, I did what any normal new patient would do...I filled out a mountain of paperwork. Along with listing any medications I was taking and the allergies I suffered from, I wrote that I had trouble picking my feet up and walking, causing me to fall down a lot. This was the same basic information I wrote on any new paperwork, as at that time I had no diagnosis for my symptoms. Finally I was sitting in a treatment room, waiting for the doctor. When Dr. V came in, I liked her immediately...you know how it is when you see a doctor with NO bedside manner whatsoever? Well, I could tell from the first moment that she had PLENTY! After introducing herself she started reading through my paperwork, discovering that I had this problem with my legs...and proceeded to flip my hands over to look at my thumbs. What's she doing? I thought to myself...and in the next instant my world became a whole lot clearer! As I mentioned before, this was when I first learned about Charcot Marie Tooth syndrome, and she was able to tell that I had it (before confirming it with a blood test,) by the fact that my thumb muscles were mostly gone. In past posts I have talked about how you can experience a loss of hand function when you have CMT. It can often cause your thumb muscles to atrophy, and mine had done so around age thirteen when my symptoms really started to show. One more weird thing on my list of "Don't Know Whys." Hmmm...DON'T KNOW WHY those disappeared, but it's rather annoying!
I was very lucky to find Dr. V, and she's still my primary doctor going on 14 years now. What I truly love about her is that she always explores Eastern alternatives with me and encourages me to continue with things such as acupuncture, Chinese herbs, hypnosis...just to name a few! And when Dr. V doesn't know the answer to something, she admits it, and does research to try and find the answer. And this finally brings me to my main point: Doctors don't know EVERYTHING. I think this is a very important fact for us to remember as we choose our doctors, whether it's a primary care physician...neurologist...physical therapist...acupuncturist...the list goes on. The fact of the matter is, we are the most aware of how we feel. If a medication makes us sick, an exercise hurts us, or orthotics aren't helping us walk the way they should, we will know that sooner than anyone else. We need to be proactive in our own care, informing the specialists when something isn't right and asking questions. Most of all, we need to be our own advocates because as adults no one else can fight for our rights and our health like we can!
This may not seem like a very important topic to everyone, especially people who have not faced many health concerns in their lives. Though eventually, everybody will have some sort of health problem they need to deal with, so learning how to be proactive about your own medical care is crucial at any age and state of health. I have been fortunate this past year to meet other people with CMT, and in listening to their stories (often very similar to my own) it saddens me to hear them say things like "The doctor told me I'll be in a wheelchair in 10 years," or "They told me these were the right type of braces for me, but I still fall down sometimes, and they hurt my feet." And it saddens me even more when I realize that some of these people have never looked beyond those answers to see what else is possible. And I have to wonder why? With a disorder such as Charcot Marie Tooth syndrome, where most people have never even heard the funny name, why would someone choose to take those 'final' answers and accept them as truth? I know a few things to be true when it comes to CMT. I know I will need braces to walk. I know I will have hand issues and have to adapt how I do things in order to accomplish everyday tasks. But as little as two years ago someone could have said to me "You will never be able to walk backward, touching heel to toe," and guess what? I do that now, twice a week in the pool WITHOUT braces. Can I walk that way on land yet? No...though who knows? Never say never! With the improvements I've made from going to the pool and the benefits from my new braces, I may be doing that soon! If I had accepted life as it was a few years ago, I would be in a wheelchair right now. But I wouldn't accept it, and was determined to find something better for myself...because of that, I found my new braces. And then I found my wonderful pool therapists...and the rest, as they say, is history!
With having CMT, a syndrome which often goes undiagnosed for years and isn't well known--even by the specialists, I don't believe you should ever give up. Right now research is being conducted and the results are very promising...in a few short years we may finally have a drug that will stop the progression of CMT. So take my advice, dear readers, and become your own health advocate. Do this whether you have a disability, diabetes, a heart condition...even if you are in perfect health. If you are unhappy with your doctors, search for new ones. If something isn't right with your health care, speak up and let your doctors know. And always remember that the possibilities are endless...so do your research, and know what your options are! And if you happen to see a woman walking backward/heel to toe through the mall, don't be concerned...it's just me. Really, I'm not crazy...I'm just practicing!