Halloween

Halloween is always a fun time of year, its the time of year that lets you know that fall is here and kicks off the start of the holiday season. Going to parties, wearing fun costumes, trick or treating, and eating candy are all fun parts of the holiday. I have memories of dressing up in princess costumes, and even a go go dancer with my god sisters and going trick or treating, and coming home and eating our candy, and if Halloween fell on a weekend we would sometimes get to have a sleepover. These were definitely fond memories. Having disability or illness like Muscular Dystrophy, that effects your mobility and other aspects of your life can make holidays, such as Halloween a challenge. When I was little, I loved the idea of going trick or treating, dressing up, hanging out with my god sisters, and eating candy but the actual walking when trick or treating was hard for me. By the time I would get to the 6th or 7th house, I would complain my legs hurt and were tired and I wanted to go home. Despite being uncomfortable I focused on the other fun aspects of it. When I lost my ability to swallow, Halloween became harder because I couldn't eat and enjoy the candy that was at the parties, and that we had for the trick or treaters. As my mobility has become more diminished and I have to have help with dressing,  being hooked up the pump and backpack, being in my power chair, and now having my leg braces I felt I couldn't wear and dress up in great costumes. I have learned that just because I can't eat candy, just because I have a feeding pump in a backpack, just because I have leg braces, just because I am in a power chair doesn't mean I can't enjoy the holiday. I can find a way to incorporate my chair into a costume (something I have seen others in chairs do and am planning to do next year), I can wear my fun crazy colored wigs, and glow in the dark necklaces and bracelets. Just because I can't eat, and am in a wheelchair and have mobility issues doesn't mean I can't enjoy this fun night, I just enjoy it a little bit differently. Having a disability or an illness, can make it harder to enjoy holidays such as Halloween, but it doesn't mean they can't be enjoyed, we just enjoy them differently. Having fun and enjoying parties, holidays, and events is what we all want and strive for, especially those of us with physical challenges. In the end we do get to achieve that, even if it is a little bit different. As I reflect on my childhood Halloween experiences I am reminded of one of my favorite verses, Ecclesiastes 3:1 “There is a time for everything, and a season for every activity under the heavens:...” and no matter what, your never to old to have fun with Halloween whether your 24 or 104.

Muscular Dystrophy....Not Just For Boys Anymore

      


I know I haven't blogged in quite awhile but there was a lot up in the air, and now its not. I recently learned that I have Muscular Dystrophy (MD), which is a progressive genetic disorder that causes the skeletal muscles to get weaker over time, including the muscles that aid in breathing, for which there is no cure or treatment. It was found thanks to genetic testing by a neuromuscular specialist who runs an MD clinic. As one can imagine this was so shocking for me and my family, but we were relieved to have a diagnosis. This diagnosis explains everything that I have gone through since I was a young child, and the symptoms fit me perfectly. My picture should be next to the description.  As a result of this new diagnosis we learned that the other diagnoses were not correct, and I had powerful chemo and immunosuppression drugs I didn't need. The question is how did a diagnosis like this get missed for so long? The simple answer is that I am a girl. Most of the people who have Muscular Dystrophy are boys, and for that reason its not something that doctor's think of off hand. Another reason is because I wasn't floppy. When doctors think about or diagnose MD in young girls it is because they're floppy, but that is not always the case. We now know that I had signs of MD ever since I was little, but at the time we didn't know that they were a sign of this serious condition. Ever since I was little I was a bit different than the other kids, but not so different that it made us think of MD. I crawled differently, walked later than most and walked differently, had difficulties with running and being physically active, fell a lot and broke a lot of bones. My family took me to doctors but they all said it was because I was tall, or clumsy. The thought of MD never crossed anyones mind, but these were all signs and symptoms. The back, joint pain, and swelling were all connected to the MD because of the odd way I walked and the bowing of my legs from the weak muscles due to the MD. The doctors thought I had a rheumatological problem, because they occur more in females. A rheumatology problem was more likely than MD. Even then, the doctors never agreed that it was a rheumatology problem because the symptoms never fit and I had no response to the medications. It wasn't until I started developing the respiratory problems I had that the thought of MD or a genetic neuromuscular disorder occurred. This was a complete shocked. After meeting with the neuromuscular doctor, I was told that it wasn't an inflammatory/autoimmune problem, and that a genetic cause was likely. After testing it was confirmed. Now that we have an accurate diagnosis, it is helpful to the doctors and my family to ensure I have the best quality of life as possible. After my diagnosis, that my story is not that uncommon for girls who have MD or other genetic neuromuscular disorders. Many of them got a delay in diagnosis, or were diagnosed with a inflammatory or autoimmune disorder, and it was only when they failed the treatment that the thought of a genetic neuromuscular disorder is brought up. The doctors have said if I had been a boy, I would have been tested for MD. I am often asked what would have been done differently, besides taking all the chemo and immunosuppressive drugs. Yes we would of done things differently, but there is no point in looking back, only looking forward. Now that we have an accurate diagnosis, the important thing is make sure I have the necessary equipment, keeping me as free from infections as possible, and dealing with the changes as the disease progresses and ensuring I have the best quality of life.