Steve here...It was certainly not our original plan to be packing up and hitting the road for the 1500 mile return trip to Washington on Lee’s birthday, but that is indeed where we find ourselves this morning.  I know Lee has done a comprehensive and eloquent job of keeping you up-to-date over the past five weeks as she chronicled the Mayo trip, but I wanted to take this opportunity to give you a slightly different perspective as a birthday tribute from her biggest fan.[...]

Final hello from Mayo! This will be my last post from here as we are winding things down and making preparations to hit the road and return home in the RV beginning Tuesday. Our time here has been incredibly helpful and we will return with a new appreciation for this cruel and insidious disease known as Ehlers-Danlos. We have some new modalities from medications, diet, and activity to try to learn to live productively with the side-effects and chronic pain of this disease.In our 5 weeks here, we have had 17 appointments with specialists (each lasting an hour or more), 15 radiology procedures ranging from x-rays, CTs, MRIs, ultrasounds, and 4 very technological and lengthy tests, and 8 trips to the lab for blood draws or urine samples. It has been a blessing to get all of this done in a compressed time frame, but I also have to add that it has been a physically, emotionally, and mentally exhausting pace and onslaught of information. I am not returning with a cure, or with less impact to my body, or with a resolution for the excruciating daily pain. What I am returning with is a much greater understanding of this illness and steps I can take to make it hopefully more survivable and livable. Between new medicine regimens and activity guidelines, I have hope for an increase in functional living.[...]

A lot transpired Monday and yesterday (Tuesday) for our “second wave” of appointments and I wanted to bring you the latest news. My labs on Monday were uneventful and so far here at Mayo, they have tapped into a vein with good blood return every time. (unlike my recent experiences at home) They take their time, warm my arms, and patiently wait for a vein to “appear”. We had an excellent appointment with the Integrative Medicine Specialist and spent a few hours with him covering many aspects of “whole body health.” We left with an arsenal of information and strategies to employ from the various disciplines of eastern medicine, functional medicine, nutrition to address inflammation, and some other resources in general to help with the effects caused by my EDS. Monday afternoon was spent getting joint x-rays and meeting with an exceptional Orthopedic Surgeon. While obviously many of my joints are suffering from laxity and arthritic-type pain due to the numerous dislocations, he focused on my right shoulder. It has been causing me quite a bit of pain since having to bear the burden of overuse as I healed from my two left shoulder surgeries and the reduced use of my left arm and shoulder. He has treated many Ehlers-Danlos patients and athletes and we made an immediate connection. I will have an MRI of my right shoulder tomorrow afternoon and then a follow-up appointment with him after the MRI.[...]

Hello from the Eagle View RV Resort in Phoenix,

This post will be a little bit long. Ha! I know you are dismayed!! So, here’s the structure so you can’t blame me for taking up too much of your time: I’ll cover the nuts and bolts of where we are in the medical journey here at Mayo, next I will talk some about my free time and escapades here in Phoenix and finally, I will do my best to let you know how my heart and soul are faring so far in this journey (since many of you have asked). So, now you know the outline so it’s not my fault if you are late to bed or late to work!![...]