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Monday, June 6, 2016

June is Myasthenia Gravis Awareness Month

Hi Everyone!

June is Myasthenia Gravis Awareness Month:


Typically, I avoid sharing details about my health because I never want anyone to think that I am looking for sympathy.  I do not feel bad for myself, so I never want anyone else to feel bad for me.  However, I have decided to share a few details about my ongoing physical battles in the hopes that my story can inspire someone else.  I am constantly reminded that the battles we face are NOT about us.  So, I never ask myself why me?  Instead, I constantly wonder, why NOT me?

I started college in August 1994.  Like most undergrads, I was looking forward to being independent and to enjoying all that campus life had to offer.  But instead of soaking up the fun of campus life, my first year of college turned into what would be one of the most challenging years of my life.  During the first week of Freshman Orientation, I fell down a flight of stairs backwards.  As someone helped me to my feet, I kept thinking about my clumsiness.  I wish that the story ended here.  As I would learn years later, being clumsy was the least of my worries.  Throughout my first year of college, I continued to fall, continued to struggle up and down stairs, and continued to have issues chewing and swallowing.  I was suffering from what I later learned was muscle weakness, and in 1995, I was diagnosed with a rare neuromuscular disease called Myasthenia Gravis.  Those two fancy words simply mean “muscle weakness.”  I have always been a positive person.  Rather than wallowing in self-pity, I made a decision to listen to my amazing Mom who always reminded me that I could "be better or I could be bitter."  I also made a decision to keep going and to continue pursuing my goals.  I had (and still have) SO much to do during my time here.        

Some days are better than others physically.  Some days I move around without any mobility issues while there are some days that I struggle to do ostensibly simple tasks (buttoning my own pants/shirts, opening a container, walking without taking frequent breaks, getting out of a chair without help).  In the face of adversity, I am SO grateful that I have an amazing support system, that I have amazing health insurance plans, and that I have been blessed to see my dreams come to fruition.  I graduated from college with honors.  I earned a Ph.D.  And, I get to do what I LOVE.  God has consistently surrounded me with loving friends and family.  Before I was officially diagnosed with MG, my college roommates literally carried me on their backs to and from class.  My amazing husband takes GREAT care of me.  He has helped me get dressed, climbed under public bathroom stalls to help me up, and carried me on his back more times than I can count.  And, my friends are always there to offer a steady arm or an encouraging word to keep going.    

Despite all of this, I am SO grateful that I serve a healing God.  And, I am SO grateful that I have been blessed with an amazing life.  I encourage you to keep pushing no matter what obstacles you face.  I cannot count the number of times I've received funny looks if my husband helps me out of a chair while we're in public.  So, I encourage you to not stare when someone who seems fine is struggling physically.  And, most of all, I encourage you to ALWAYS be kind.      


Thanks for stopping by!


  

18 comments:

  1. I think your story is amazing, thank you for sharing. I was diagnosed with MS in the middle of law school, and it made things tough to say the least. I achieved all of my dreams even with my health issues. My husband and close friends have also gone above and beyond when I needed it most. I hear you, and I am with you.

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  2. Thank you for sharing your story, your infectious optimism and inspiring faith with all of us! I am so glad I found your blog.

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  3. Dear Rynetta, I am in awe. As I read each sentence I saw the amazing smile that you share with us on your blog. 💝

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  4. I've said this to you in person, but I'll repeat it here: you changed my life. Thank you for helping me to see things in a different way. And thank you for helping to shed some light on this painful condition, your resilience is a bleassing not only for you, but for those of us who watch you fight relentlessly.

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  5. Rynetta, thanks so much for sharing. I know you are a very positive person, and I find that even more admirable knowing what you have to deal with!!

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  6. *Hugs from San Francisco* Thank you for sharing your story with us.

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  7. You are and will always be amazing :-)

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  8. I can do all things through him who strengthens me. God is great!

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  9. God is good. You are a champion and inspiration.

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  10. Rynetta, your post today was so inspirational.I have two beautiful children with special needs so some days it is a struggle. However I too will strive to be "better not bitter" and be kind to everyone around us. Thank you so much!

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  11. Thank you for sharing! I can't imagine the difficult situations in which you have found yourself in over the years due to your diagnosis. However, your optimism and faith in our almighty and powerful God is inspiring. :-)

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  12. Also, I really like your Mom's saying to "be better, not bitter." I'm remembering that one!

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  13. We sure an smszing God! I don't know you personally my sister but am inspired by you and follow your blog faithfully! Be better not bitter will always stay with me! I have a daughter with sickle cell anemia and my flesh can't help but question God why my baby? Be better not bitter. Thank you for your powerful story. I will always keep that with me. I will continue to pray for you and you continue to be blessed.

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  14. We sure an smszing God! I don't know you personally my sister but am inspired by you and follow your blog faithfully! Be better not bitter will always stay with me! I have a daughter with sickle cell anemia and my flesh can't help but question God why my baby? Be better not bitter. Thank you for your powerful story. I will always keep that with me. I will continue to pray for you and you continue to be blessed.

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  15. Thank you for sharing your story with us! You're truly an inspiration to all of us! Sending hugs your way doll!

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  16. Rynetta,
    You have been blessed to be a blessing. Thank you for sharing your story and yourself with us.
    May our almighty God continue to shine in your life.
    Prayers & many blessings to you!
    @wgstfff

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  17. You are such an inspiration. Always showing positivity through such a struggle. I really hope I can be more like you!
    XO, Joni

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  18. PS it's infusion day for me and I always think of sweet, positive Rynetta when I'm there ;)

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