My name is Pernille, I am 38 years old, and live in Tallahassee, Florida. I have always had itchy feet, and have traveled to a lot of places, and lived in quite a few. I am originally from Denmark, and even though Denmark will always be my first love and home, Tallahassee is where I hang my hat, and plan to hang it for a long time.
There are several reasons for this blog. I will describe a couple in this introduction.
I suffer from a kind of muscular dystrophy called Limb-Girdle Muscular Dystrophy 2I. A lot of people may not know what that means, you will probably think about Jerry’s kids and the Labor Day telethon. You are right, that is what I suffer from. MD does not only affect children.
A diagnosis of MD is actually a life sentence, and keeping up hope can at times be easier said that done. I have always been a fighter, but the diagnosis of MD nearly got me! I will not get into the journey I was on to get the diagnosis, but I do want to mention that denial is a good ship until you hit a hurricane. By that I mean that I should have gone to the Dr years before I did, but deep inside I knew something really bad was going on, but thought that as long as it didn’t have a name, I would be OK. I am still not sure whether or not I am happy that I waited or if it would have made a difference if I had sought help sooner. I know I caused my parents a lot of pain, and worry, and I still do. Denial likes to stick around.
Life with MD is a roller coaster ride, there are good and bad days. The good thing is that I now exercise every day, and I am in the best shape of my life;. The bad thing is that at times I find myself wallowing in grief, self pity, self-loathing, and anger.
When I initially started writing this blog, I had recently been told about a drug, called Albuterol, used to treat Asthma, that could possibly have some positive effects on MD. The trials with the drug were small and inconclusive, but the indication was that it could slow down muscle protein breakdown as well as increase muscle protein synthesis. I am not 100% sure what those technical terms mean, other than the participants in the experiment showed some functional improvement as well as some increase in strength. My neurologist and I decided to undertake a similar experiment. Some of it was documented in the early blogs.
In addition to the MD, I am unfortunately also fighting an eating disorder. There are many reasons why it developed, and I am still not quite sure why, and what purpose it serves (or served). I was in treatment at a hospital in Gainesville in the spring of 2012.
Basically, this blog is a place for me to share my thoughts and feelings with the world, or at least with the few people who might be interested in my "musings".
