Last Two Days At Mayo
>> Tuesday, February 22, 2011
Health Update
I left off with Wednesday so I’ll pick up on
February 17th, 2011 Thursday
I didn’t have any appointments this day so I got in contact with Dean and his sister Kathleen to see if they wanted to get together. We did a little Mayo touring. We went to the patient education center and got free DVDs and booklets and saw the clear, plastic man with the light-up insides. He seriously needs some pants. The fact that this is a rather old piece of educational equipment and therefore yellowing in places does not help matters.
We also went to a meditation room with a labyrinth, prayer wall and a small, circular room with prayer rugs and copied of the Quar’an in it. I completed the labyrith and waited for David Bowie to show up in stripped leggings. He didn’t show. Okay, sorry, geek joke, I know. If you have no idea what I’m talking about just Google “Labyrinth, David Bowie”.
Next it was on to some shopping. We ate lunch and made our way through subway and skyway to the amazing Barnes & Noble (the one that’s in the old theatre). I rather overloaded Dean with
dietary information about liver disease.
Soon my friend from PRC, Jess, showed up. I said goodbye to Dean and Kathleen and continued to putz around Barnes only with Jess this time. We were both exhausted so we went back to my hotel room and acted as lazy as possible, ending our evening with a delivered pizza and TV.
Friday:
Friday morning I got a call from Lynn, my transplant nurse coordinator. She said that the results from my MRI were back and that I had Bursitis. I had no idea what this was other than Lynn telling me I should get cortisone shots in or around the joints.
Mayo’s website says this:
Bursitis is a painful condition that affects the small fluid-filled pads — called bursae — that act as cushions among your bones and the tendons and muscles near your joints. Bursitis occurs when a bursa becomes inflamed.
http://www.mayoclinic.com/health/bursitis/DS00032
That explained all the deep-bone pain then. I’m supposed to rest my legs and arms but still get some movement going on. I read that the movement shouldn’t be repetitive, though.
Soon after that phone call my friend Sage came to pick me up as I checked out of the hotel. Then we were on the road to famous author Neil Gaiman’s house! That’s a whole story in and of itself which I will post on my blog soon. Neil was so totally sweet and charming and hospitable. Looking back on it, it all seems like an amazing dream and then I remind myself that yes, it was real! Sage was awesome for driving to pick me up, then taking me to Neil’s and from there to the airport. I think she rather had fun.
We left Neil’s house in time to make my 3:30 flight, which would have worked out if my flight were scheduled to leave at 3:30. I had misread my ticket and the flight actually left at 3:05. Lucky for me it was delayed and they got me through security quickly and said to take one of those golf carts to the terminal. After security (I wasn’t able to check my bag so I would be boarding with it riding plane side) I was told the golf carts only came every 5 to 10 minutes and I was better off just walking as quickly as I could to the terminal. But with a huge backpack, a laptop case and a huge heavy bag that only went on wheels on the rare occasion that it felt like it, my bursitis kicked in big time. It didn’t help that I got my laptop bag stuck on the edge of one of those moving sidewalks. I’m used all my leg strength to walk back to get it un-caught but it was no good. Some guy came to my rescue and I could tell he was trying not to laugh at what was obviously a hilarious scene. I was not in mood to laugh. At the end of what I was sure would be my death march I came to my terminal. The bird had flown.
A nice lady switched my flight for me, got me a golf cart to take me to get food and wished me luck with my transplant business (I’m yellow enough now that people either avoid me like the plague or ask if I’m okay).
After I had eaten a bit of expensive, low-quality chinese food Jess came to pick me up. I basically lay in a bed at her house and tried to recover my legs as much as possible. Then Jess generously took my back to the airport for my 10 PM flight. It wasn’t long before I was home and sacked out. Because really, who cares that I had to go through all that crap at the airport when I’m gotten to meet Neil Gaiman!?
Soon my friend from PRC, Jess, showed up. I said goodbye to Dean and Kathleen and continued to putz around Barnes only with Jess this time. We were both exhausted so we went back to my hotel room and acted as lazy as possible, ending our evening with a delivered pizza and TV.
Friday:
Friday morning I got a call from Lynn, my transplant nurse coordinator. She said that the results from my MRI were back and that I had Bursitis. I had no idea what this was other than Lynn telling me I should get cortisone shots in or around the joints.
Mayo’s website says this:
Bursitis is a painful condition that affects the small fluid-filled pads — called bursae — that act as cushions among your bones and the tendons and muscles near your joints. Bursitis occurs when a bursa becomes inflamed.
http://www.mayoclinic.com/health/bursitis/DS00032
That explained all the deep-bone pain then. I’m supposed to rest my legs and arms but still get some movement going on. I read that the movement shouldn’t be repetitive, though.
Soon after that phone call my friend Sage came to pick me up as I checked out of the hotel. Then we were on the road to famous author Neil Gaiman’s house! That’s a whole story in and of itself which I will post on my blog soon. Neil was so totally sweet and charming and hospitable. Looking back on it, it all seems like an amazing dream and then I remind myself that yes, it was real! Sage was awesome for driving to pick me up, then taking me to Neil’s and from there to the airport. I think she rather had fun.
We left Neil’s house in time to make my 3:30 flight, which would have worked out if my flight were scheduled to leave at 3:30. I had misread my ticket and the flight actually left at 3:05. Lucky for me it was delayed and they got me through security quickly and said to take one of those golf carts to the terminal. After security (I wasn’t able to check my bag so I would be boarding with it riding plane side) I was told the golf carts only came every 5 to 10 minutes and I was better off just walking as quickly as I could to the terminal. But with a huge backpack, a laptop case and a huge heavy bag that only went on wheels on the rare occasion that it felt like it, my bursitis kicked in big time. It didn’t help that I got my laptop bag stuck on the edge of one of those moving sidewalks. I’m used all my leg strength to walk back to get it un-caught but it was no good. Some guy came to my rescue and I could tell he was trying not to laugh at what was obviously a hilarious scene. I was not in mood to laugh. At the end of what I was sure would be my death march I came to my terminal. The bird had flown.
A nice lady switched my flight for me, got me a golf cart to take me to get food and wished me luck with my transplant business (I’m yellow enough now that people either avoid me like the plague or ask if I’m okay).
After I had eaten a bit of expensive, low-quality chinese food Jess came to pick me up. I basically lay in a bed at her house and tried to recover my legs as much as possible. Then Jess generously took my back to the airport for my 10 PM flight. It wasn’t long before I was home and sacked out. Because really, who cares that I had to go through all that crap at the airport when I’m gotten to meet Neil Gaiman!?
5 comments:
Just thought I dropped by (I tend to check new fiends of Lorraine out). It is quite a life you have there;I understand better your comment about the internet centred social life!
Hugs.
I have a very rare liver disease called PSC. Only one treatment: a liver transplant. And, like me, many people need multiple transplants if the disease comes back. I was diagnosed when I was 4, had my first transplant when I was 8, second when I was 11 and am currently waiting for my third (I'm 23 now). My disease is end stage right now so I'm pretty much always at home feeling crappy. But I try to keep the best attitude possible :)
Neil kindly signed and donated a book that will soon be put up for auction with PSC Partners For A Cure http://www.pscpartners) with all the proceeds going to fund research into PSC.
Thanks for coming over to my blog! <3
Hiya, came over from Lorraine's blog and just wanted to say welcome to fienddom and that I think you have a really neat blog here - a wonderful voice and I look forward to having time to read some of the older entries. You are very brave to be able to share all of this publicly and I can't help but think that it will prove inspirational to people in need. That's one of my very favorite things about Lorraine's blog, even when I'm only lurking for weeks at a time, I don't feel alone. Best of luck!!
-Amy
Such a hard time. I have put a "Follow" command out to your blog so will be able to keep track of how you are doing.
Arwenn: thanks, that makes me feel pretty good about myself! :)
spacedlaw: yay! Got a couple new blogs coming up, not the least of which describes my meeting with the amazing Neil Gaiman ;)
Post a Comment