Things I have learned

Some people might be wondering why I started a blog about my disease.  I think the answer comes down to impressions that I consistently received over a few months time.  I hope to help others who might be struggling with the same disease or something similar. 

I have learned that I am not Super Woman - no matter how much I tried or longed to be, I wasn't and never could be.  I have learned that my body has limits (every individual has limits at varying levels) and that if those limits are exceeded, then negative and difficult consequences arise.

I have learned what has truly been plaguing at least one side of my family for generations (not rheumatoid arthritis, as was believed).  When I shared my diagnosis with my mother-in-law, I commented to her, "It's nice to know what is really going on and that I don't need to pump my body full of medications for a disease that I don't have."  She simply replied, "Knowledge is power, Gina."  That phrase has stayed with me and I use it in all areas of my life, not just those relating to my disease.  I have learned what works for me and what doesn't, and hopefully that personal knowledge can help others and possibly my posterity if need be.  I feel like I've been able to live a much healthier lifestyle thus far than I ever saw my mother have, because I know what the problem really is (not just the closest thing to it).  I saw my mom hurt physically and emotionally for years and often wonder what her life would have been like if she had known what condition she truly had. 

My husband has referred to my disease as my invisible backpack, and I think there is a lot of merit in calling it that.  Some days I feel like there are 200 lbs. in my backpack, and sometimes I can't even figure out why.  Other days I feel like there are only 5 lbs. and it's not that big of a deal.  I know that I "look" relatively healthy to others who don't know me or know what I struggle with, but I'm not and will not be in this life despite my best efforts. 

I have learned that everyone in this life has an invisible backpack from time to time - whether it's filled with physical, emotional, or mental burdens doesn't matter.  I know how hard it is carry invisible backpacks full of just emotional burdens or just physical burdens and I've carried a backpack jammed full of both.  Whatever the backpack is full with, it can be hard and it hurts - as a result I have learned not to judge others and to try to treat everyone with kindness.

I have learned to be grateful in spite of my challenge.  I wouldn't say that I'm grateful to have Myotonic Muscular Dystrophy Type 2, but I am grateful that I don't have a more severe form of muscular dystrophy.  Many forms of muscular dystrophy can be fatal within 2-10 years of diagnosis, but mine is not like that.  I am grateful that I can be a caregiver for my husband, our four children, and often to others around us, and that I don't need a caregiver (at least not yet and hopefully not for at least 30 more years).  I miss being able to throw a softball from on my knees behind home plate to second base, throwing the runner out who is trying to steal from first.  I miss stretching a base hit into a double or triple by smart running.  I miss shooting the basketball from behind the 3 point arc and knowing that it will be a perfect swish in the basket from just after the ball leaves my hands.  I miss stealing the ball and passing it off to a teammate for an easy lay up.  I miss having my athletic ability.   But I am grateful that I have found satisfaction and fulfillment with the simple things of life - like teaching my children how to throw, catch and kick a ball without being afraid of the ball.  I enjoy making my family dinner, and meeting the needs of my children and husband on a regular basis.  I enjoy making someone's day or week by delivering cookies to them or just by calling them to let them know that they were thought about.  I find some satisfaction in volunteering at my children's school once in a while.  I am grateful that I can hopefully demonstrate a healthy lifestyle with this disease so that my children (if needed) will already have some knowledge of what will work and what won't, when it comes to living with this disease.

I find a great deal of satisfaction in coming to know my Savior Jesus Christ better and trying to become more like Him.  I am grateful to belong to the Church of Jesus Christ of Latter-day Saints, and for the knowledge that I have of my Heavenly Father's plan of salvation for all of His children.  I am grateful to know that His only begotten Son suffered the Atonement for me.  I am grateful to know that Jesus Christ is aware of all of my pain, that I don't have to lift it all on my own or to feel alone in my pain.  Overall I am grateful for my life.