Love is in the shoes #RareDiseaseDay2022

With no obligations to be anywhere this past weekend, my husband and I were finally able to get caught up on a few things around the house. He was doing yard work and cleaning up his shop while I was inside working on some much needed organizing! I saw Tim over by the barn as I glanced out the window so I went out to see how he was doing and immediately recognized just how beautiful it was outside. I approached Tim and again pointed out the warmer weather and no wind made for a perfect winter day. He agreed and as I continued basking in the beauty of the sunshine…I somehow managed to slip on a piece of ice hidden under the snow…and I fell hard!!

And just like that, my admiration of God’s beauty around me changed in the instant my circumstances did and as I struggled to sit back up I mumbled under my breath “Yep…isn’t this how life is?! Just when you think it’s finally getting better, it knocks you back down again.” My knee was throbbing, my wrist was stinging and while I had not hit my head, the sudden pounding just from the jolt of my fall was excruciating. I was more upset though over the frustration of my clumsiness! Why don’t I pay more attention to what I am doing?? How did I not see that huge spot of ice peaking out from the snow I was standing on?

I looked up at Tim and the poor man was frozen with a look of confusion on his face. First off, I think he was trying to figure out what just happened because I hadn’t even been walking anymore and was just standing there…and I fell!!! Second, I don’t think he knew if he should laugh or come rushing over to help me back up but he did come over to extend a hand. That cute smirk started to creep across his face and he says to me “let’s stay positive babe.” I started laughing and replied “yep, today is a beautiful day.” Leah had walked out just in time to snap a couple of pictures haha!

Tim helped brushed me off and then we carried on with the rest of our day but I couldn’t help but think of this verse…not only spiritually but physically haha.

While I was still dealing with a headache, our Sunday was busy and I hadn’t even thought about that fall until I realized it was the day before Rare Disease Day and I hadn’t even considered writing a blog or sharing my story for awareness.

As I was struggling to write something, I justified that my health has not been the best since last July so I would plan to just skip sharing my story today and I would be more committed to my fm family in the upcoming year. I had to have angioplasty back in July, October and January to open my SVC stents back up and now I go again at the end of March. Needless to say, all of these angioplasties have been exhausting and emotional due to the fact that my stents are no longer staying open for more than a few months at a time anymore!

And just like my fall, it made me realize how a sudden jolt of suffering can so easily hinder my vision of all else that is good if I am not grounded in the one who Holds on to me.

I never imagined that a day in February would become so near and dear to me. Not Valentine’s Day but the last day in February, Rare Disease Day. A day where my husband randomly buys me a pair of zebra print shoes because he too knows how important this day is….love really is in the little things💕

A day where I come together with other people all around the world who are struggling to find the right diagnosis or any type of treatment…sharing our stories to anyone who will listen with the hope of shedding some sort of light on our diseases.

I have been involved with Rare Disease Day at our Capitol a few different times in the past but I stumbled across this speech from seven years ago when Sandy Salmon, our Iowa House of Representative, shared my story while they were in session in hopes of bringing more awareness to Rare Disease Day. I am extremely grateful for the love and support I get from our local community. There are people willing to listen…if we are willing to share.

I am also thankful for so many of you who continue to reach out to me with questions or to simply introduce yourselves and share your story with me as well! You are the reason I will continue to pray for our fm family and share my story alongside with the rest of you in hopes of bringing awareness and a cure to Fibrosing Mediastinitis. Alone we are rare, together we are strong💕💕

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