Wednesday, February 24, 2016

Continuing to circle the airport....

*heavy sigh and an eye roll*

So late last week after sending my Cardiologist to do some nagging on my behalf, I got a call from the surgical coordinator on behalf of my surgeon. It hasn't been a good year for my surgeon so far. He had to take time off to go out to CA for a couple of weeks when his father suddenly had to have open heart surgery, and then, no doubt due to the cesspool that is airports and airline travel, he got sick himself upon his return. I assume some kind of inner ear type thing since he has apparently been experiencing balance issues, which clearly makes him unable to perform surgery.


I was offered the option of seeing another doctor but not at the same hospital. In addition to not wanting to forge a new relationship with a new surgeon (my guy didn't kill me the first time, I'm gonna trust him to go 2 for 2) I also have no interest in having to go through all the testing and bullshit AGAIN, nor having to drive into Boston or Newton, where they keep the other good hospitals. I can wait. Hopefully not for much longer. Coordinator said he would contact me in 2 weeks (so, next week) and assuming the doctor was all better, we would schedule my surgery asap. If I am in the hospital by mid March I will be happy (albeit surprised)

I'm feeling slightly less spiky since my last post and while I still feel rather broken on the inside I don't feel quite so much like I'm going out of my mind. I'm trying to get more exercise (and by exercise I mean walking a few times around the grocery store/target etc) but anything strenuous than walking is exhausting. Yesterday, earlier in the day I was up and down my basement stairs trying to get some things in order, then I went to my studio. Since people park like complete twats (you do not need to be 5 feet away from the car next to you) I had to go to the additional parking lot, which involves a flight of about 30 steps up, and then down again to get to the building. Even though I scaled the stairs slowly, breathing deeply the entire way I still had to stop at the top for a minute, I literally could barely breathe and for the rest of the day I was absolutely exhausted. I have never been the fittest person in the room and I doubt I ever will be but I never thought I'd actually MISS exercise. My god I'd love to be able to go to the gym and do a 30 minute speed walk followed by some weights. I'm even thinking about outrageous things like getting some personal training and maybe trying Couch to 5k (Obviously once I'm all fixed and docs have signed off on it) Not sure my knees, hips  (and lets be honest, my tits because even in a sports bra they fly around like puppies fighting in a pillowcase) could bear running, but perhaps a gentle trot.  I just want to have energy again. I honestly don't remember what that's like.

So that's my gloom and doom for today. Peace out, bitches!

Monday, February 8, 2016

So it's February

Today marks 4 months since my surgery was originally scheduled to happen (before it was pushed back a week). Today I'm waiting to hear back from surgeons office about a surgery date. A week and a half ago I had a trans-jugular liver biopsy, which I have to say was really fucking unpleasant, but my liver is the one that pulled the shenanigans that cancelled my surgery back in October, and the concern is still that my liver might not survive the surgery, which would mean a liver transplant as well, which is super duper awesome. I really hope it doesn't come to that, but there's no way of knowing. Whatever the outcome, it should happen in the next few weeks. Since I basically had a nervous breakdown in front of my surgeon when I saw him a few weeks back I'd like to think he realizes that whether or not he has patients that are more urgent than I am, that I am coming apart at the seams and this has to happen soon.

So since the debacle last October I've become more and more...I don't know...damaged? neurotic? anxious? depressed? I don't know how to describe it except to say that I look at pictures of myself a year ago and feel like I don't even know who I am anymore. I've let this shit define me, so in addition to the actual physical healing process, I will also need to do some serious work on my psyche. I'll find a shrink and whatnot, but for now I"m just keeping my head down and trying to stay sane(isn) until this is over. I don't think I've ever been this unhappy in my life. No breakup, no disappointment, no passing of a loved one, no teenaged angst has ever left me feeling so completely detached from who I am. This is not who I want to be. I don't want to be heart surgery girl. I don't want to be fucked up liver girl, I don't want to be always greeted with a sympathetic-head-tilt "How are you doing?" girl, I don't want to be cries-at-the-drop-of-a-hat-for-no-logical-reason girl. I want to be photographer girl, world traveler girl, works out at the gym 4 times a week girl, I want to be healthy, I want to be strong, I want to not be whatever the fuck it is I've become.

So that's where I"m at. Time for a Xanax and a nap.