8.12.19 Clinic Adventures

To know me is to love me and accept that I’m late, always. It’s nothing personal and not intentional, but it happens more times than not. Knowing this first hand, Jaci and Ashley showed up in time to finish the laborious dressing process and braid my hair. 7:30 is my default leaving time for clinic, so we loaded up, fought traffic, picked up Starbucks and made it to clinic an hour and a half EARLY for my appointment- winning!

In honor of the 5th anniversary of the Ice Bucket Challenge, we brought with us umbrella straws to share with our fellow clinic attendees. I love to bring goodies with me to clinic to help cultivate relationships and it’s always good to have a straw on hand for Dr. Pepper consumption amongst other things.

Always fun to spend the day with my best friends, even if clinic isn’t everyone’s idea of fun. It was also the big debut of my “Fall Risk” tattoo. It was very well received. My numbers were great, breathing was up 9% and my hand strength was up 5 pounds IN BOTH HANDS! Not sure what is causing this surge in ability but I’m so grateful for the umph to go into this week, and every week with more passion than before.

Also, I’m praying about the opportunity to attend additional clinics so I can meet and love on additional families who share this diagnosis. It would be a blessing to interact with new families within this community outside of my normal bunch of clinic party goers.

In February Kacy and I took on DC in the name of ALS with Rare Disease Legislation Advocates. That group has recently started a program called Rare Across America where we have follow up meetings in the home offices of our local legislators. I’m pairing up with a powerful group and meeting with Senator Cornyn’s office on Tuesday morning. Fun part of advocating under the “Rare Disease” umbrella rather than the “ALS” umbrella is teaming up with passionate, hardworking advocates that bring additional awareness and experience to the conversation. Wednesday afternoon I have a solo appointment with Congresswoman Kay Granger’s office under the same initiative. Still waiting to hear on scheduling for a few other meetings, and I’m really excited to take our advocacy efforts to the home offices.

Busy, busy week ahead – exact opposite of last week. Happy Monday, y’all!

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