I was finally able to meet Cody who is in his early 20’s, his stepsister and his mom the other day. Cody is also battling Fibrosing Mediastinitis and his mother Sharon has been a very strong advocate for him, for all of us with this ugly disease.
I have also met Martin, another FM fighter and it’s always emotional for me. Less than 600 people diagnosed and I have been able to meet two now in person. And to be able to talk to someone face to face with so many similarities in our stories… We have almost died due to the lack of knowledge doctors have, trying to treat us in ways that we would later find out could have done more harm than good, or even killed us! The frustration can be consuming. People, doctors not understanding just how much pain we endure, how much effort it really takes to make it through the day sometimes…all while looking “normal” on the outside.
As we were getting to know each other, I was sharing stories about my job, our farm, our kids, and Cody asks “how do you do it?” My heart instantly ached for him being so young, having even more struggles than I have to deal with.
I honestly believe it is only by God and His strength that I am able to fight on…the kids also keep me on my toes and Tim pushes me. When Tim learned of my disease I know he had no clue as to the effects it truly has so in the beginning he tried pushing me too hard. “If you think you’re sick you will be”, one of his biggest motivators for me to get up and moving…didn’t happen because the more I pushed the worse I became. Plus I felt like my husband thought I was a lazy whimp…nobody understands that fatique, that awful chest and head pain, the effort just to take a breath because if you breathe too deep that horrid stabbing pain shoots through the chest to the back of the shoulder blades….especially when we look healthy on the outside.
But then Tim came to an appointment with me…and everything changed. Tim, now sitting next to me rubbing my hand, trying to comfort me at that appointment while he heard the doctor tell me, it has progressed, there is no cure and they will do the best they can to make me “comfortable.” Tim got angry, bitter and ignored it….telling me once again if I don’t think I’m sick I won’t be…I know he only told me that in hopes of convincing himself. Tim now knows me well enough to know when I really do need that push to get moving because I’m losing focus…and he also knows when to encourage me to rest. He has been amazing…for the most part 😉 But, the thing I love most is his sense of humor and I know God blessed me with this man to make me laugh on the darkest days, to help keep joy in my life and to help hold me accountable for my personal relationship with Jesus!
So, I guess that is how I do it. Purely by God’s grace, a lot of praying and a lot of laughter.
Now I am in the process of helping Sharon get our event figured out for the next rare disease day to bring awareness to FM. We are figuring out how to get grants to help with some of the costs and we are lining up our personal doctors to be guest speakers, not to mention advertisement, poster boards, shirts and pamphlets. With only two of us it seems overwhelming and actually this is all new to me so I haven’t done much…so if anyone is interested in helping or has any other suggestions on how to make this event a success please contact me with a personal message through Facebook or Twitter!!
Cody is an amazing young man full of courage and humor and kindness. Cody and I were talking and while we know the chances of any medical intervention “curing” us most likely will not happen for us, we continue fighting for the next person who is diagnosed with FM! We hope that doctors will continue to learn from us so that they can provide answers, treatment, cures and hope for their next patients diagnosed with Fibrosing Mediastinitis!! I really believe there is a cure just around the corner so please help us bring awareness!!