My name is Kris, I’m 32 years old – female. I live in South Carolina, USA. As a child, I noticed that I was a much slower runner than other children, and I could not jump as far as they could. I wasn’t good at sports, but I did try things. I’m a very positive, optimistic person which really helps me with this news that I’m not as healthy as I hoped to be.
For me, it wasn’t until after the birth of my son in 2000 that I noticed my arms seemed really achy and tired just from holding him. I thought this was normal thing and attributed it to not getting enough sleep from being a new Mom.
I had worked as a Professional Massage therapist specializing in deep tissue sports therapy. My work was tough, but I loved it. ‘Your grip doesn’t seem as strong’ a regular client told me one morning. I started noticing how I could not open jars or water bottles and how I had been falling down for no apparent reason. I always had an answer for everything in my mind like ‘oh man, they are making these store doors heavier lately’, or ‘these pants make me trip’. Stairs became exhausting for me and I noticed that carrying the laundry basket seemed like such a chore. I went from easily giving 6 massages a day to barely being able to do 3 without absolute pain and fatigue between the years of 1999 and 2004.
Initially, a large bump appeared on my right calf muscle. The doctors thought it was a cyst, or a malignant sarcoma possibly. I was very frightened to hear those possibilities. Finally, after many tests an MRI revealed that I had a possible neuromuscular problem and showed that some of my calf muscle was missing! MISSING, I thought to myself … where did it go? A calf muscle doesn’t just disappear.
After a muscle biopsy and a very painful recovery from that, I had a definite diagnosis of Myotubular Myopathy. I immediately thought, it’s not the worst thing to have, at least it’s not cancer! I have spent many nights doing research since I read that my son will have a 50% chance of inheriting this disease. However, we are very blessed that he is 5 and doing just fine.
My heart has been checked, and for me, all is well. Heart problems do run in my family though. I notice when I’m around smoke, I have a terrible time catching my breath, and it becomes quite scary. I did have a follow up MRI on my leg one year later which showed further deterioration. I am not able to stand on my tip-toes or walk in high heel shoes anymore. I no longer work, but I am active in our church and adore being a stay at home Mom as I am free to volunteer at my son’s school when possible. I sold my massage therapy business and moved into a one level home in a small town.
I awake each morning with severe total body pain. My first steps are the worst for me. My right leg pain hardly ever ceases, but I try to put it out of my mind. My balance is terrible and I usually walk with a limp (or so I’m told). I have pain in my hands and feet and muscle wasting. My neck is very sore and my joints hurt too.
On top of my disease, my loving husband, 35 lives with Multiple Sclerosis. Doctors look at us with that look of our uncertain future together. With his nerves and my muscles we often hear that we are quite the couple. We have a strong faith though, and believe that everything happens the way it is meant to. People always tell me that I look fine and my positive attitude is amazing. I promise myself not to give in to being ‘sick’. This disease is just a small part of who I am. I swim, do yoga, eat healthy, stretch, get plenty of sunshine, read, and appreciate all of the good things I’ve been very blessed with.
In reality, a muscle disease is not an easy thing to live with as even the simple things like styling my hair or vacuuming the house are hard for me but that’s my life. Who ever said it was supposed to be easy? In the big scheme of things, there are much worse things happening in the world today. My way of thinking is that we all have something to overcome or live with. In a way, I’m blessed to know what my problem is. I believe it makes me more grateful. I welcome each day with a smile.