Hello from Mayo

So... the title gives away the good news! I am writing you from Phoenix, Arizona where I will begin a series of evaluations at their relatively new Connective Tissue Disorders clinic. They are currently specializing in three main connective tissue diseases - including my disease Ehlers-Danlos. It will be the first time in my medical journey to have the opportunity to be evaluated by different specialties (geneticists, cardiology, gastrointestinal, orthopedic, etc) who specialize in Ehlers-Danlos. Additionally,

the biggest benefit is after my comprehensive evaluations with all needed specialties is complete, this team of doctors will gather together to discuss all pertinent findings and recommendations, considering me as a "whole person". A treatment plan will be put together that will help me to hopefully live as fully as possible with this often cruel disease. We are tremendously grateful to be blessed with this opportunity to be at the nationally and world renowned Mayo Clinic. Please pray for us and the process. So...what's next? Thursday and Friday I have the first "wave" of appointments. There is a scheduled break for some days and then there will be a second "wave" of appointments. We assume any additional needed or recommended tests or procedures will be added to the "itinerary" either in the scheduled break or following the second round of appointments. Steve or I will update here as things progress to keep you in the loop. If you want an email notification when we post, just register your email with this site.

On a personal note, I've always promised to be honest with you when I write so I will confess that today I feel somewhat nervous at the enormity of this process. I don't want to set my hopes too high while at the same time trusting God completely with his plan. He has been faithful in every step on this long and somewhat difficult journey and my heart clings to this knowledge. As I prayed for peace this morning, God brought me this comforting verse:

"Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you." Deuteronomy 31:6

As always, thank you for continuing to check-in and keep up with us. We are truly blessed to have such faithful family and friends.

Lee and Steve

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Comments

Lacey Chen:

Praying for you Lee and Steve.

Lisa Currall:

Praying for just the right answers and God's Will. I pray too for the stamina needed for all the appointments, testing and information overload. We did all this for EDS at the NIH. It was amazing and exhausting!! God's many blessings on you both and all the docs-

sandra henry:

Praying for both of you and your whole medical team. Glad you can be in such a good place. Love you lots.

Amy Garland:

Will be praying for your time at Mayo. Praying for you to feel God's mighty and loving presence every step of the way on this part of your journey. Praying for the doctors and specialists that you will be seeing-that God would give them wisdom and clarity. Love you sweet friend!

James Broman:

Thanks for the informative update (makes for prayer specificity!); and we send our feelings of empathy, prayers for physician wisdom and just some regular old "best wishes."

Jennifer Keller:

Praying you will receive some much longed-for answers and a plan to give you as full a life as you desire. God is so faithful! Love to you both!

Steve Braden:

Uncle Steve and I are praying for you guys. Especially, for peace of mind. Love you guys

Rachel Fox:

Happy to hear you made it safely! I love that you're honest about being nervous because sometimes I think you may be super woman with all you've endured. Nerves are a good reminder He is and always will be our strength. Praying for you sister ❤

Judy Wilson:

You are amazing. Praying this will be an informative visit.

Ellen Bunch :

Love you Lee Bob...🙏🙏🙌

Teresa J Brooks:

So glad to hear from you Lee and glad you have this opportunity to be evaluated at the Mayo Clinic for your particular disease. I will keep you and Steve in my thoughts and prayers for a good outcome. Love you! Teresa

Teresa J Brooks:

So good to hear from you Lee and so glad you have the opportunity to be evaluated at this new Mayo Clinic for your particular disease. I will keep you and Steve in my thoughts and prayers for a good outcome. Love you! Teresa

Alison Butler:

Love you and praying for you. We are beginning this process with my daughter and would appreciate if you could call some time. 865-254-7033. She has been diagnosed with hypermobility type. Oh I could ask what type you have? Love and prayers coming your way.

Elizabeth Holmes:

Praying for you and your family.

Mark Colavecchio:

I so appreciate your transparency Lee. Now I truly know how to pray for you. Les and I will be praying for strength and courage! Can't wait to hear how this goes. Blessings! Mark

Joan Bouck:

You can do this Lee. It sounds like a lot, but you've been through more and done great. Laugh, love, and have faith. I believe in you and that the positive power of prayer will be supporting you every step of the way. I hope you guys are able to find some wonderful things to do while you're in Phoenix to help offset the clinical side of your visit. Take care and let us know how things are going for you. Joan LFD3