Yup, I got me one of those! I need them to be around yet I also can't stand them all at the same time. I'm not sure how they feel about me but I like to think the love/hate relationship is mutual. We are going to have to work on things because it looks like we are in it for the long haul. Yeah you got me, its my oxygen.
This whole 24/7 oxygen thing just is not working for me. I have been home for a little over 24 hours and it is turning out to be a rough adjustment. Being home is not too bad, though it is weird to be hooked up to something all the time. I am walking around the house with a lovely little (but super long) snake following me everywhere I go (though let me tell you this "snake" is rather dumb because it keeps tangling up on itself and getting caught around objects). I now have a new found respect for dogs on a leash, its no wonder they pull so much or flat out refuse to walk on the leash as my dog likes to do, it sucks, they are right, being off leash is way more fun.
The real problem is leaving home. I am having a hard time figuring out a system for getting oxygen that both comfortable and gives me a long enough window and of course my, not quite fixed yet, social anxiety doesn't help things any. Today I went out into the "real world" for the first time with my o2. It was not as bad as a thought but was not a pleasant experience by any stretch of the imagination. I think this has more to do with my anxiety than with the o2 though. I already deal with anxiety in social situations (basically anywhere there are people) now I am forced to deal with actually standing out (instead of the crazy, make believe stand out that the crazy side of my brain or "whitey" as I call her likes me to believe). The interesting thing was that no one asked me about it. Actually I didn't really think people would ask, it was just odd seeing that, that was indeed correct. Its like "come on people I know you are wondering so just say it". I almost want to write it across my forehead, (Waiting for new lungs, are you a donor?okay maybe not the donor part) then at least it is out there and I know people aren't wondering. That is one thing I have learned from this, maybe I should be more inquisitive of people who are "different". At least if they are like me. I am fine telling you, the worst is when I feel like you are wondering but aren't saying anything.
As far as the actual transplant process goes there is no new news to report. We are still just waiting on hearing from the University of Colorado transplant team. We have also been looking into other centers and trying to decide where would be the best place to go. It seems like Colorado has a pretty long wait time, which could be less if I were to go somewhere else, Duke for example. It is hard not knowing what my life will look like even a month from now. I look forward to when this is all over with and I can be out on a run instead of stuck at home detangling the snake monster yet again!
Seeing how Gerry avoids using oxygen in public, I can understand your frustration with the 24/7 oxygen. Those long tubes are a real nuisance. Is it possible for you to get one of those small portable oxygen compressors? If that would work for you, it would give you much more freedom of movement.ReplyDelete
I'll say a little prayer for you and your snake monster.
Anna, your e-mail asked what we're doing. So....ReplyDelete
Saturday we went to Portland for a Twilight Labyrinth Walk. The labyrinth was built by my friend Jamie and her husband in their backyard. I had seen pictures of the labyrinth, but it was much better in person. She had lovely quirky little artwork around the labyrinth, and it was a beautiful evening... a wonderful break from the work and problems at home. Sunday we went to church at St. Mary's Cathedral in Portland... beautiful service.... a wonderful treat for us. Boring to read/write about, but it was a nice relaxing week-end.