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

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Comments

Amy Moore:

Lee & Steve, Thanks for the updates. You are in our thoughts & prayers. Your dedication & commitment to the Lord is inspiring as always I pray I could have your focus if faced with your trials everyday. Love you both, Amy O'Dell Moore

sandra henry:

I pray that the changes will give you relief and healing. Happy new year to you and Steve! Love you both.

Karren Logan:

You all are true examples of his word. You are in my prayers and in my heart. I love you and the Lord be with you.

Debby Swecker:

Much love to you both 💜💕💚 Debby & Dan

Jane Levin:

Andy and I are praying for relief from the pain and exhaustion, and help with the ongoing issues. Praying for your peace and hope in the midst of it all. Love you both. Jane

Steve Braden:

Thanks for the update. Steve and you are in our prayers. Love you guys.

Joan Bouck:

Thank you for sharing a summary of what you learned in your trip to the the Mayo clinic. I continue to be humbled by the depth of your faith and caring. I know you have many trials to face, but I hope the New Year will bring both of you many joys as well. Take care, prayers and blessings, and Happy New Year to you both. Joan FD3

Sandy Temple:

I pray that you can get relief from the pain and other issues that you have. I am so thankful for your continued witness in my life. You are such an inspiration to me. Your faith is amazing. Praying for you and Steve. Love you both!

Teresa J Brooks:

Dear Lee and Steve: Thanks so much for the update. I pray that you will get some relief from your pain and fatigue through the new things they want you to try. Keeping both of you in my prayers. Love, Teresa

Judy Wilson:

Lee and Steve, You are both an inspiration. I wish there was more the clinic could do. At least they understand the disease and have some suggestions to make you more comfortable. I will continue to pray for you.

Lisa Currall:

Much love, care and gentle hugs from one EDS sister and whole family of 8 EDS kids to another. We understand totally and are praying. Thank you for the update. Blessings on you both- Lisa

Ellen Bunch :

I love you Lee Bob and if I could take some of your pain I would. Praying for you daily (and Steve too). Happy New Years!!!

Stephanie Patchin:

Love you Lee! Praying for you as you adjust to the new information and as the pain continues.

Bruce Ensign:

Thank you for the update on your last trip. We will continue to pray for you. Please let us know if there is anything further we can do to support you.