Well, we finally made it up to Mayo in Rochester yesterday to get me checked out by more of the big boys and girls in the medical field. For those of you I haven’t seen or chatted with for some time, here’s a quick update summary of the current state of my body since the time of my older posts you can find under the Health category:
- Left knee replaced in 2002, refused at about 20 degree angle over the next few years (zero range of motion)
- Right knee fused at about 80 degree angle (zero range of motion)
- Left ankle nearly fused around 90 degree angle (about 10 degrees of motion)
- Right ankle fused at about 90 degree angle (zero range of motion)
- Left elbow in process of fusing (about 45 degrees of motion)
- Right elbow fused at about 45 degree angle (zero range of motion)
- Jaw in process of fusing (can open to about the width of a finger)
- Neck has lost some motion in all directions
- Right hand has lost some motion in fingers/palm
- Lots of pain in my ribs, especially the center… think feelings of exploding when sneezing
To further summarize… my body just continues to get worse. I’m still able to bear enough weight on my left leg to get around the basement at home via a walker. I pretty much stick to the wheelchair when I leave the house.
So… the Mayo trip. Lots of you already heard we were headed up there for a day of appointments, and we truly have appreciated all the prayers and thoughts! It always gives me a good sense of peace knowing you got our back. I hope you enjoy some of the play-by-play of the quick trip. :) Oh, and before you read more, know that we found the medical staff at Mayo to be extremely supportive… all of those we saw were super down-to-earth folks just like those back home. I would say I’ll attempt to be brief, but… you may have seen this blog before and know better.
To start things off, I made a bit of a mistake. I booked a hotel directly across from the building we needed to be at early in the morning. I also didn’t book a handicap accessible room (don’t think there were any available on our short notice). Wow, was this room small. My wheelchair tires scraped the doorway on the way in and out. If anyone else remembers the movie, I had to model Austin Powers in his classic scene, spending minutes to turn-around once inside the room.
Later that night, my walker and I got stuck in the tiny phone booth-sized bathroom. I’m not going to find a video or picture for that, as I just don’t need to relive the experience. T had a good laugh, though.
As for getting ready for appointments early the next morning, I had the fun instructions of fasting as of 7pm until whenever my blood tests could occur. I also could not eat any foods for my final meal that had what I would call “flavor,” nor drink anything that I would call a drink with “flavor” either. Anyone who knows my schedule lately knows I’m used to having “supper” around midnight a couple hours before bed and getting back out of bed between noon and 2pm for “breakfast.” The next morning I basically felt serious jet lag in addition to being way off eating food.
So, we hit our first of three scheduled appointments for the day at 8am. Our itinerary looked like this:
- 8am – General Internal Medicine
- 11am – X-ray’s
- 1:45pm – Orthopedics
The short story of the first appointment went something like this:
- Nurse comes in to grill us for a while, flips through my hand-carried medical history. “Interesting.”
- Physician’s assistant comes in to grill us much longer going through medical history in detail. “Wow.”
- Physician comes in after debrief from PA, shares he’s the same exact age as me and grew up down in Solon, we spend time laughing about how crazy my case is and how perhaps the only joint working might be my nose. I instantly graduated to the “cool case” level and he left the room to bring back what appeared to be the rest of his medical staff. They ooh’d and ahh’d over my condition, poked and prodded me, started talking about the lab photos (for future posterity? :) that must be taken at some point, and left to completely revamp my entire schedule.
Enter the new schedule, which has now become something like this:
- Today – Lotsa blood work, meet with Ortho folks, lotsa X-rays, MRI after 6pm
- Tomorrow – Echocardio-something, meet with Immunization folks (because let’s get another Tetanus shot… why not?), another visit with General Internal Medicine folks
- Few weeks later – meet some different Ortho folks
- Mid-August – meet with Rheumatology folks
- TBD – follow-up?
So much for the consolidated get things done all today and return for an outbrief at the end of the day with the medical team plan forward. Though we completely expected something like this, the schedule turned kind of crazy. So, while I went through tests at each new department, T worked on the side to get the schedule turned into at least something manageable between today and a single future appointment. A photo I recently saw on Facebook models what I could only guess things looked like for the rest of the day if you compared her path with mine.
Before those paths could even start, our scheduler realized the X-ray’s shifted out after the Orthopedic consult due to all the extra tests being ordered. Apparently, Orthopedic doctors prefer to actually have X-ray’s to look at when attempting to evaluate you. So, we raced over to get X-ray’s crammed in prior to blood work. As you might guess, blood work was the “I can finally eat again” finish line I was sort of focused on throughout the morning.
At some point around 12:30, I lost count of the X-ray’s that were taken for at least an hour. I believe we covered every joint from three to four different angles. There was a lot of “OK, move this joint like this,” to which I could only respond with, “Yeh, sorry… that one is fused too! :)” Lots of laughing and lots of pain as we tried to contort my body in ways the X-ray equipment could be contorted to match up. On a potentially-related note, my bedroom seemed slightly brighter last night.
By the time we were done, we were well late for all the blood work, which took all the remaining “free time” window we had prior to meeting with Ortho folks. Speaking of Ortho, saw a couple doctors there, who also were completely perplexed and agreed we really need to be doing more tests and meeting some more of their folks. Schedules continued to be adjusted. By the time they were done grilling me over history and evaluating me, it was nearly 3pm and the MRI was shifted up to 3:15pm.
Enter Quizno’s, source of food WITH flavor. They have a Quizno’s in the building. Finally some food made so fast we had just enough time to slam it down make the MRI.
The prep for the MRI was fun. I’ve done these before, so had no real shock at what was about to happen. I’ll summarize the events:
- Set me up with an IV in case they decided to inject me with contrast dye at some point. This is where I model a human pin cushion as my veins marvel the nurses with their ability to somehow move out of the way just at they attack them. Several armbands later, we’re in. (The nurses afterward ask if I’d like to keep all the various “war wound” bandages on to impress my wife and get sympathy… I know T too well to bother trying. :)
- I attempt to put on a “wrap-around” gown by myself. A wrap-around gown has three arm holes. Because… you get to wrap it around and not have an open back. Ingenious design. However, one of the stupidest things I ever tried to do myself. If you are confused why, go back to the top of this post and remind yourself of the state of my joints. :) I spent minutes moving my body in directions I shouldn’t have, feeling a bit like I was playing a frustrating version of human Tetris, but finally got the gown on.
- I exit the dressing room and T can only laugh. I still have my shirt on underneath. Back inside I go, for the 6th (?) dressing room change of the day.
- Enter the MRI room… where they spend minutes trying to figure out how to position my body in a way to fit down the tiny tube… all the while asking me to move certain directions after they had already stuffed in some of the most amazing ear plugs I’ve experienced. About an hour after the contortionist exercises were complete (again, remember the irony that most of my joints are fused :), it was time to stop feeling like the picture below and head on back home.
So, exciting day but not much news in terms of further diagnosis beyond that of the physicians I’ve seen throughout all the years leading to today. Everyone we saw was just as baffled as folks back home. We head back up again mid-August for another full day of testing and meetings. Who knows what will be ordered that time around or how many future visits are in store.
Before I end this post, however, I want to take a bit to mention an interesting article T and I read right after meeting with our very first nurse of the day. It was the cover story of Rochester Magazine that was sitting in the room, called “The Key to Contentment” with a subtitle that went something like, “Has this doctor found the secret to happiness?” It was a read filled with interesting comments like this one:
Our brain is designed as a machine. If you were to design a machine to maximize suffering, that would be the human brain. … The brain inflates the negative, it discounts the positive. I compare myself with those who have more, not those who have less. That is my instinct as a human. When I have food, food stops rewarding me. I want an air conditioner. If I have one car, I want two cars. I keep chasing. Why people are struggling often has less to do with personal predisposition, and more to do with how the brain is designed.
All we could think was, “he’s so close to the truth, but so far.” Yes, our brain is designed by our Creator. However, the Bible tells us there was a fall, and ever since our heart is the problem.
9 The heart is deceitful above all things, and desperately sick; who can understand it?
Jeremiah 17:9 (ESV)
21 For from within, out of the heart of man, come evil thoughts, sexual immorality, theft, murder, adultery, 22 coveting, wickedness, deceit, sensuality, envy, slander, pride, foolishness. 23 All these evil things come from within, and they defile a person.”
Mark 7:21–23 (ESV)
Only God, through His grace and mercy toward us sinners bought and paid for in the death, burial, and resurrection of Jesus Christ, can fix this issue and bring us contentment.
26 And I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh.
Ezekiel 36:26 (ESV)
11 Not that I am speaking of being in need, for I have learned in whatever situation I am to be content. 12 I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. 13 I can do all things through him who strengthens me.
Philippians 4:11–13 (ESV)
Our prayer is that all of you come to know the true source of contentment in any circumstance. Paul learned to be content… and we are still learning ourselves, to find contentment no matter how my condition progresses. We pray you do as well.
Thanks again for all the prayers and thoughts! Until next time.Share on Facebook