Wrapping Things Up For The Year

First off…I need to thank all of you for the overwhelming response we received for Rare Disease Day!! Sharon did a great job and I was pleasantly surprised by how many of you came to the State Capitol to show your support!!   

It meant so much to me!!๐Ÿ˜ I’ve always said what amazing families and friends Tim and I have and you guys showed just that so thank you! And thank you to all who sent encouraging messages and prayers as well!

And speaking of friends…even one of my besties from high school showed up and boy how she hasn’t changed!! Haha! I was laughing from the moment we started talking until the moment she left!  

Heather and I were stuck like glue all through high school along with another bestie Sara. Unfortunately after high school we lost touch BUT it was actually my disease that brought us all back to together!! When I did my very first newspaper article on my illness back in 2007, Heather’s dad had seen it in the paper and took the article to her, who then was able to find and contact me after several years of not seeing or talking to each other!!! So, a positive that resulted from my illness!

Now, back to the big day! I kept the kids out of school so they could come to the Capitol with us and they were excited…well, probably just excited to miss school๐Ÿ˜œ  We loaded up and we were out of here…obviously a fun ride for everyone ๐Ÿ˜‰  

And once we got to Des Moines we did some last minute touch ups on our wardrobes!  

We got to where we needed to be and then greeted those who started to arrive!

Our state representative Sandy Salmon stopped in to show her support and while Governor Branstad even spoke, they were not able to stay for the event.  

  

Other individuals shared their struggles about living with a rare disease, definitely very difficult to listen to. I was able to get through my speech without crying but my voice sure did tremble๐Ÿ˜๐Ÿค“  

I even got to meet another lady with fm but I won’t post our picture since I didn’t ask for her permission first! haha ๐Ÿ˜‰ And while I was so grateful to meet her in person, it was also heartbreaking because it was her mom who said she read my book and felt as though I had written their story. And Tara stated we could be twins due to the similarity in symptoms and challenges we have both faced. I have always said how many amazing people I have met since my diagnosis, unfortunately though I wish I could have met them all under better circumstances. 

After our event, Tim and I walked around with the kids for a little bit and then headed home after such a long day!    

   
So much needs to be done to raise funds for research and medical treatment and it is overwhelming and frustrating at just how difficult that is to do. It’s just not feasible to have research for every rare disease, yet trying to get disability or any type of assistance is just as difficult so many of us are stuck! There needs to be a way to improve this!!

This was my first year of really being involved and again, so overwhelming! But, I am very thankful that I got the opportunity to share my story. Tim and I are trying to figure out a better game plan as to what specific area we need to target in order to gain attention and some sort of relief for so many of us who have been diagnosed with something so rare!! 

But, now we’ve got a whole year to prepare and improve for next time and any suggestions are always welcome ๐Ÿ˜‰ 

Thanks again for supporting Rare Disease Day…and for supporting me ๐Ÿ˜

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