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!![...]

We have completed our first two days at the Mayo Clinic. I am wiped out tonight as it has been a lot of information to take in but I wanted to get at least some info to you. First I have to say that the coordination and compassion we have experienced from those who check us in before each appointment, everyone in between that and the doctor, and the doctors has been absolutely amazing. My Mayo app on my phone literally lists everything that is happening from appointments and the doctors’ notes from the visit and any tests or labs in real time. It has been seamless so far. Each person I encounter has a copy of my itinerary and access to all doctor notes up to that point. Even the sweet lady in the lab knew I had EDS and had knowledge of the disease. We feel so blessed to be given this opportunity.[...]

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.[...]

Hi! It’s me! I’m home and was blessed to enjoy a sweet daytime nap with my hubby. (Our schedules rarely allow for that!)The docs managed the anesthesia well and my necessary awake intubation was just minimally uncomfortable which was a huge blessing. Because of my previous anesthesia complications and the fact I have limited mobility of my neck due to my fusion, the safest option is to place the breathing tube down my throat while I am awake (and watching). I feel like the last two surgeries, we have continued to improve my anesthesia regimen to where it is continuing to limit and reduce complications. Today we added breathing in a lidocaine mixture for about 20 minutes which allowed numbing of my throat down deeper and lessening the gag reflex. So, that will now be part of my protocol as well. An excellent anesthesia document is shaping up and making each surgery a little easier and less fear of complications. Another great blessing! I had a little nausea and vomiting in post-op but all that is fine now. I am blessed right now to have very minimal pain. I haven’t put the shoulder to the “clunk test” yet. The surgeon had to fill the shoulder socket with fluid to successfully do the arthroscopic procedure so it will have a “false” lubrication for a day or so. I should have an idea of the success or not by tomorrow evening. My greatest blessing today was having all of you as family and friends praying for me! Thank you for your prayers. They were evident![...]

Just talked to the doc and she's out of surgery and waking up; he "cleaned up/out" as much as he felt comfortable without creating instability and we'll only know for sure how effective it was once she's able to start moving it around but he saw improvement with his moving the shoulder around. I'll update again once we get home and settled. Thanks for your prayers![...]

Steve here, they just took Lee back for surgery. Everything has been very smooth so far; she was was blessed with success on first try for her IV rather than the 2+ hours last time. Thanks for your continued prayers and I’ll update when I know more...[...]

Hi family and friends,

I first want to thank my wonderful husband for taking on the task of the last several posts when I was unable to do so. I’m back to posting today, so you know that invariably means a longer post! Ha![...]