Monday, March 4, 2019

confession time

So I'd love to say the reason I haven't posted in a while is because I've just been super busy, but I can't because...well... I like to keep things honest on here.  Sorry for my delay.  There has been no post or the rest of the hell week videos (there are two here and maybe more by the time you are reading this...maybe...hopefully) because quite frankly I really did not feel like it.  To be completely honest I have not really felt like doing much the past few weeks.  I am in a weird kind of place in life and I am having a harder time at it than the first time I found myself in a similar space.  In christian circles, especially as a kid the question always comes up if you could spend a day in heaven but then come back and finish your life would you.  No I would not.  It's the same reason I always hated that song about it being better having 1 day in God's courts than 1,000 elsewhere.  I beg to differ.  If you only get one day I'd rather stay where I am at because at least I don't know what I'm missing.  Well jokes on me because I got that day and now I'm back to my days of elsewhere and elsewhere has really lost its luster.  (no I did not get a glimpse of heaven, stick with the metaphor people!)

Anyway, I'm guessing you all are here for a long awaited update and although I feel more like rambling on about my personal thrilling day to day life, you probably have your own thrilling personal day to day life to get back to.  (This will likely be a rambally post so when you have the info you came for feel free to leave! Like you need my permission, psh) (I feel like you all are really missing out because you are not getting to hear this blog spoken the way it is intended, I try the best I can and if you know me well you might have an idea but, let me tell you, y'all are really missing out) (Maybe I should start hosting blog readings) (Or I could..... see I warned you.  Rambally)

Okay for real this time here is the news.  Well today I came to Duke for a check up.  I haven't had it yet so I really know nothing except the same old stuff as last month, which I will reveal after this story.  (I should definitely hold it off as long as possible to keep you reading, right?! After all isn't that what every show ever does, it's a classic way to boost audiences.0

Sooooo.... on my flight today there was this one guy saving a seat and.... okay sorry you can't say I didn't warn you.  I guess you can just say I am feeling a bit happier and more like myself again and I find typing this as a way of therapy.  Did you know that people who commit suicide usually do it as their mood is going up?  It is because in the depths of their depression they don't even have the energy to do it.  It isn't until things start getting better that they have the energy to actually kill themselves. So you see this is a way better option.  (PS I am not in anyway suicidal, this is not a call for help, I'm really just kidding around with you all for fun, like a serial killer and his victim ) (that was a joke too) (AH sorry probably not things I should be joking about, I probably shouldn't be blogging late at night while I am sleep deprived and my mind is running a mile a minute) (but it's too late for that now!) (I do realize this is a computer and I actually could change all this and make it more socially appropriate and I might)  (However, if you are reading this now, I clearly did not) (I promise I am completely sober...for real...maybe this lack of oxygen is getting to my brain)

Okay for real here we go.  So after my eval at Duke which went off without a hitch minus the day of running around the hospital because nobody could figure out where I was supposed to be (see here about 11or 12 min in).  I waited anxiously for the results.  Since I am being honest today, I was extremely anxious for the results which was dumb because I pretty much knew what they would be and they were exactly what I thought. Let waiting phase 1 begin.

Talk with you later

Sorry I couldn't resist.  So after discussing my case the wise minds at Duke have agreed that I am a good candidate for a re-transplant but that I am not in what they call "my window" yet.  So what does this mean.  Basically it means that my lungs are not sick enough yet that a transplant is my best option right now, instead the doctors feel it is better for me to keep living with my current pair.  Now I want to clear up all the confusion, take everything you know about health and through it out the window right now, no seriously do it.  This is not exactly good news.  In this case I want to be a little bit sicker.  Not sick enough that I am past my window but in that sweet spot where I am ready for transplant.  Why, would anyone in their right mind want to be sicker.  Well first off we already covered that, see above ramble, I am likely not in my right mind.  Okay all joking aside I want to be sicker as my lungs are at the point where I have a fairly low quality of life at my current state.  Being a 27 year old who a few months ago lived alone with a full time job I enjoyed, an adorable sweet puppy friend and this strange guy who came over often and said something about dating :P, now having none of that (okay I still do have the puppy) and struggling to breath everyday is quite the challenge.  It goes back to how I started.  I got the taste of "normal, healthy" life and then got thrown back into the life I knew before my transplant and I am having a hard time adjusting.  (see I told you it would all tie together, okay maybe I didn't say that but I was thinking it :P) See I am a pain avoider (hard to believe with what I have been through but it is true) and I like the easiest most painless route that leads to what I want, because you see I am also selfish.  What I want is to be able to be independent again.  What I want is a decent income that allows me to meet my other desires (see number one),  What I want is to move out of my parents house and to put my stuff that is currently in boxes back on my shelves and walls and be surrounded by the cute things that I like (again see number one), what I want is to be able to live my life and not have to think about how much walking will be involved or how tired I will feel or what the altitude is or.... (see number 1?  not sure if it really applies here but I had to stay with the joke right?) . Anyways basically I am having a hard time accepting and finding the joy in my current situation on a daily basis because quite frankly I'm bored out of my freaking mind!!!

So I figure I need to change this.  I have started finding things to do little by little.  I am also teaching a bit more so I have both more income (barley) and more time filled.  If you have ideas for things I could do or are involved in something I could join let me know!  I need more people in my life, it gets pretty lonely sitting at home with my dog all day, no mater how much I love her.  Now here is the trick... it can't require any sort of commitment as my lungs can deteriorate in a matter of days and it's off to Duke, so like a part time job sort of thing is out of the question.  (wouldn't that be great, yes I'd love to take the job, 2 days in, so actually I'm sort of dying and need to quit now and by now I a mean now not like in two weeks, Bye! Plus there is the whole very minimal energy thing) . So here is what I'm thinking, book groups, game groups, craft groups, sit around and talk about stuff groups, young adult groups (or not so young but still young adult group, I'm not really sure where I fall anymore being in my late 20s, AHHH who am I....sorry I'm getting ahead of myself that is a whole other post :P) Basically any sort of thing I could do that does not require a lot of physical activity but provides something to do/ social interaction/ maybe some new friends.  So if you know of something hit me up!

So anyway that is my life in a nutshell wrapped in a bunch of unnecessary layers topped off with duck tape so by the time you finally open it you are so annoyed you don't even care anymore about the nut on the inside or remember why you were even trying to get it open in the first place.  See.  Rambally.

Well hopefully this helps answer your questions.  I'm honestly a little lost myself so here is a quick recap.
Blah blah blah......good candidate for a second transplant....blah blah ...... not time yet....... blah blah blah blah.....Duke will keep a close eye to catch me before I get too sick...blah blah...bored out of my mind, need help! (huh I guess this is a cry for help, would you look at that :P).....blah blah blah blah blah!

So until next time......

P.S. Many people ask if I will get better, the short answer no.  The best we can realistically hope for is that I stay the same and get a little bit more time out of these lungs before I get my next set (ultimately a good thing, not what I personally want).  God has done miracles before he could do one again and cure me, which would be great, but I'm not holding my breath, I couldn't even if I wanted too I don't get enough air in.  Yes, I know that maybe my unbelief is preventing my healing.  Somehow I don't think that is actually how God is and I know he will use this time, no matter how much I hate it and fight it, for something good.  Because He is good and He works all things together for good.  Not all things except the things we fight him on, or all things except the things we don't face joyfully.  Nope all things, so I gotta just keep on keeping on and trusting in his crazy and somewhat comical plan.

P. S. S.  Don't worry I'm still my usual happy joking self for the most part.  When/ if you see me will I be all sad and mopey?  Probably not.  Am I just faking my happy attitude? In most cases no.  I am simply as the tittle suggests being honest with you all.  I usually try to keep things positive but today I am letting you into a glimpse of one of my "days".  You know, we all have them and today I'm sharing mine.

P.S.S.S I should probably go to bed.  It is way too late and I'm sitting in a hotel room typing in the dark because my dad is already asleep, some people are smarter than others.  But here is the deal, I wasn't kidding about being at Duke (or the airplane story) and we are two hours ahead of home, add that to the fact that I have been having trouble going to bed before 5 am the past week and well... I am WIDE awake.  (That whole staying up until 5 am thing may have something to do with my fun Chinese friends who make me money.  Wow!  That sounds super odd/ sketchy, it's not trust me.  I'm planning a post to explain that maybe later this week, so I don't want to bore you with the details here, plus you know readership right? gotta build that suspense!)

Okay, for real I'm gonna try to sleep, wish me luck!
Good night  you blogollowers you

PSSSS okay I promise I'm almost done.  I actually had something I felt was important to say that I can not remember at all now (silly med side effects). So this really is the last thing.

Good night!