Thursday, January 24, 2019

Stunt Doubles Wanted

Hello blogollowers,
Its that time again: Update Time!  Things have been pretty quiet the past few weeks as far as my medical journey goes which has been a nice little break.  I finished my Rituxan treatment about two weeks ago and do not go to Duke again until next week.  I have however been pretty busy especially for a person who sleeps about 18 hours a day.

What have I been doing?  Traveling of course!  Two weeks ago I got the opportunity to spend time with my stepmom and some of her family in Portland.  It was a lot of fun and a nice change of pace.  From there I flew to Phoenix to work on packing up my apartment as I am officially moving.  While in Phoenix I went to a tiny home show and got to look at several tiny houses.  I am currently in the process of planning my own tiny house, but that is a topic for another day.  It was fun to see the houses and get a better feel for them, it also helped to inspire me to get rid of a lot of my stuff while I was packing.  Nothing like picturing yourself living in 200sq to get you to cut back on stuff. 

After Phoenix I got the opportunity to go to Florida for a few days with my mom and some of her family.  It was super nice to be in warm places for a week and finally thaw out a bit.  I am not used to this cold Colorado weather anymore. 

I had a good time on all my travels and it was nice to have something to do.  It also helped me to feel better getting out of the house and being a little more active.  When I am home I do not do a whole lot, I can definitely tell that my energy level is greatly reduced and I end up having to nap about half the day.

Next week is the big week.  I will be flying off to Duke this weekend and will be out there for the next week and a half.  I am most definitely not looking forward to it.  The tests I am having to do are not my most favorite thing in the world.  The worst offenders are the Barium Swallow and Manometry test.  Both of these tests have to do with the digestive system and as we have previously discussed, this system and I are not really friends, so it is only fitting that it would have the worst tests.  Though, the badness of these tests has nothing to do with my silly digestive system, they are just plain unpleasant.  The first test, the barium swallow, involves drinking a thick, chalky, artificially sweetened, radioactive concoction while pictures of it moving through my system are taken.  It wouldn't be so bad except that my body rebells against drinking something radioactive which makes for a very unpleasant time while I try to force more of it back in. 

Then there is the manometry testing.  This test involves having a small large tube shoved in your nose and down into your stomach.  Its kinda like that whole noodle trick only the "noodle" is the worlds longest piece of rigatoni and nobody is laughing.  After that fun a more reasonable noodle size tube is placed.  What this one lacks in size it gains in time as it stays there for 24 hours.

I am currently taking applications on stunt doubles for these two tests.  Any takers?

Besides these fun ones the rest should be a walk in the park, a few IVs and some minor procedures but nothing terribly unpleasant.  Hopefully not too long after all this testing we will get the verdict.  Am I a candidate for a second transplant and when?  I do not feel that sick and am not on oxygen so I am thinking it may not be time.  On the other hand I have lost a lot of function and do not have much more to go.  I also do not want to have to do these tests again. I also kinda want to get this over with and get out of the limbo state I currently find myself in.  I am thankful that God is in control and that his plan is good.  I can stay in that in the midst of all this uncertainty and have peace that most of these decisions will be made for me!

Until next time!
Get out there and live while you can! 

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