Eeek, it’s been a while since I’ve written in my blog. Crazy how time flies. You won’t be surprised to know I have continued my track record of constant doctors appointments. I did finally get my infusion approved to be given more frequently only to start developing more rashes and joint pain. This is a bit deja vu of something that happened to me probably 12-15 years ago. I am in the midst of a bunch of testing, but it’s possible my medication is causing drug induced Lupus. But, in true Dr. G style, he’s on it. He basically fired my outside dermatologist who had very inconclusive answers and theories on how my Crohn’s could be treated more effectively. Pretty sure you aren’t a GI dude… Since I am lucky (or unlucky) to be part of the deeply rooted interdisciplinary team at Anschutz I was able to get into an amazing rheumatologist and dermatologist quite quickly. Dr. N who mostly works with oncology patients and rashes that come with chemo was fantastic and took 2 biopsies we are waiting for. Dr. K in rheumatology spent a long time with me and we are waiting to get ultrasounds of a few of my swollen joints. Dr. G took a ton of blood tests. So, no answers yet, but I think we will get there soon. Dr. G made it very clear to these doctors that I am on my last resort of Crohn’s meds now and we need to figure out how to treat “through” whatever is going on without having to stop my medication. Both of these new doctors gave me hope that we can do that. The good news is my gut is feeling pretty decent so we think my med is working. Bad news is these symptoms, along with overall just feeling sick hasn’t been easy. An itchy rash and joint swelling is making me lose my mind- literally.

Now that I got that out of the way, I can share that there have been so many great things going on with the Crohn’s and Colitis Foundation! I have truly enjoyed my Board position and we have spent a lot of time together the past few months. About a month ago I got to give my story in front of patients, care givers, and doctors at the IBD Learning Event in Denver. I also moderated the doctor’s discussion. I formed my “Awesome Ostomie’s” Team for the Take Steps Walk that will be June 1st in Denver. So many of my amazing family members and friends have joined my team and I’m so excited and blessed to have so much support. A few weeks ago we had our Board retreat in Colorado Springs and we all put our heads together to help bring the 2025 Strategic Plan come to life. We all shared so much energy and passion and I’m excited about what’s to come! We’ve also had our first meeting for the Night of Hope Craft for Cure’s Gala that is coming up this November. We are already busy working on auction items so if you have any ideas please let me know!

Lastly, the most exciting and rewarding thing I have been involved in happened this week. A Bill was introduced to the Health and Human Services Senate Committee that if passed, will remove the prior-authorization requirements from insurance companies that have been needed when a doctor wants to increase the dose and frequency of an ALREADY approved medication.- for those with chronic diseases. I am the poster child for this. Whenever Dr. G wants to increase my dose by a little bit it ends up being denied, appealed, denied again etc. and takes weeks and sometimes a few months to get approved. During this wait my disease suffers and he is having to take hours away from other patients to help me. I had the honor and privilege to give my testimony in support of this Bill. I spoke in front of the Senate Committee and it passed! It’s now off to the full House and Senate and hopefully the Governor’s desk to sign by May 8th. This is very exciting and will be life changing for so many and I am thrilled I was asked to do this. It was a bit nerve wracking, but I felt confident in my testimony.

That’s the past few months in a nutshell! Hopefully I will get some answers soon on what is going on with my skin and joints and am able to feel better. I am on the calendar to have scopes June 11th where we hope and pray this medication is actually keeping my disease under control. It’s never easy to predict what is really happening with my disease as we all know so fingers crossed we are getting there.