Quick update from Mayo visit

Hi everyone! First, thank you for your prayers, texts, and calls on our recent trip to the Mayo Clinic in Phoenix. Although it was a short three days of assessments, there was a lot of information to bring home and we will need some time to process it in its entirety. After we have had time to process and involve our local doctors with the recommendations presented at Mayo, we will update more here on the blog.

I think our biggest revelation from this trip is the reality that my Ehlers-Danlos disease is progressing and there is no cure for the disease at this time. We are trying some new medications and modalities and those will take some time to see if they improve my most difficult symptoms. We also came home with some recommendations of some interventions for my local doctors to try; especially related to the continued failure of my stomach and intestines to work properly. The other big piece we sought relief for was the increasing fatigue and pain that I am experiencing on a daily basis. The systemic pain is triggered by so many factors, it will be a difficult trial and error with several different medications and specially compounded topical creams made by the Mayo Pharmacy. Our goal remains to not use narcotic/opioid medications. The pain clinic was a blessing to work with and they had a good understanding of the excruciating pain that presents in the Ehlers-Danlos disease and are willing to try novel treatments in hopes of improving the daily pain I am experiencing. 

We haven’t done a good job of accurately explaining Ehlers-Danlos disease on this blog and the 24/7 battle that comes with it and its multitude of effected organ systems. We will try to update more thoroughly in future posts. I have been too exhausted from the trip to go into details tonight but just wanted to give a brief update from our trip. We trust God’s plan in this disease and are committed to living our lives for him no matter the circumstances of life that we find ourselves in. Our hope is not found in wealth, health, and ease of life. Our hope relies in a God that loves us unconditionally and always has what is best for us as part of His plan. I don’t have to see the full picture or understand everything, because I can trust the heart of God and his plans for me.

Thanks again for taking the time to check in on us! We’ll update as things progress. 

Grace and peace,

Lee and Steve