Tuesday, June 29, 2010

Sunrise, Sunset. Sunrise, Sunset

I hope my buddy DW likes that title. :) or LK. or J-sing^. I could go on.

So, I've been down lately and trying not to write too much about it on the blog, because people get overly worried. I joked on twitter that there is a list in BOTH of my transplant binders (from both centers) about the "normal" feelings during the transplant process, and someone was tweeting about suicide awareness, and tweeted a list of signs. Would you believe that 1/2 of the sings of suicide are "normal" feelings during transplant? What does that say? I don't know, but it ain't good.

Here are the signs of suicide, (and this post is NOT a joke about suicide, so don't write me any nasty emails).

Suicide Warning Signs: (Available 6/28/10 http://www.suicide.org/suicide-warning-signs.html)

My side notes in italics

  • Appearing depressed or sad[...]
  • Talking or writing about death[...] - one of my binders actually recommends this.

  • Withdrawing from family and friends. - worded differently, "your relationships with family and friends may change dramatically...
  • Feeling hopeless.

  • Feeling helpless.

  • Feeling strong anger or rage.

  • Feeling trapped -- like there is no way out of a situation.

  • Experiencing dramatic mood changes - this, the binders blame on the steroids and other meds. I blame the experience itself, though it is certainly compounded by the double steroid rage that is also making me into a luscious lady!

  • Abusing drugs or alcohol - this they warn against but I have known some that do it. Me, with my bleeding lungs, cannot partake to this degree.

  • Exhibiting a change in personality. - doy.
  • Acting impulsively. - What was that "live like you were dying" bullshit that I was tweeting about the other day. This also came up in my interview with wnpr, Am I having random fantasies of skydiving and going to Milan? Uh, no. I am having fantasies about long shopping trips at Target and waking up with a reason to get dressed (i.e. work). And I want a dog.
  • Losing interest in most activities. - Yep.
  • Experiencing a change in sleeping habits. - Ditto.
  • Experiencing a change in eating habits. - Must work even harder on the fat making. I have succeeded by adding "ass-sitting" to the urban dictionary.
  • Performing poorly at work or in school - Does being fired while you're waiting for lungs qualify as "doing poorly at work?"
  • Giving away prized possessions. - In virtual terms, yes. I am the only one among my friends that has a will (the one for when you're dead), a living will (the one for when you worry that doctors will make you be dead), a health-care proxy (the one where you pick who is responsible for raising holy hell if your living will isn't followed and they try to make you be dead, or conversely, keep you alive after you are, sorta, dead.) --mine lists a wopping 5 people (which apparently is "a little weird," and do you know they make you put them in a horrifying order of importance that I have changed so many times that the "Patient Services Notary" knows me, personally, and tried to get me a date with one of the hot male nurses on my last dry run?
  • Writing a will. - See above.
  • Feeling excessive guilt or shame. - Considering I feel guilty even when I drive out of my way to the Full Service Only gas stations in Massachusetts, even though I am keeping them in business, I definitely have this problemo.
  • Acting recklessly.- This one, apparently, is so common and crazy they had to list it twice. Does allowing my cat to eat Friskies wet food and two french fries per day count as reckless by proxy or munchausen-by-kitty behavior? 'Cause, then, I have it. And I have bought a lot of cheap rocker girl t-shirts at target for $8ea., but that is only because my fat and lusciousness has literally robbed me of all shirts of appropriate fit. (Take that, UnknownCystic and his friend and friend to BecketTheCat, UnknownFox).
So, there is my news in a nutshell. Once again, I am in no way suicidal. If I was, would I be on the damn tx list or fighting so hard to stay on it for these 8 months, 6 days, an about 7 hours? (Yes, I do remember the time of day when I forcibly hugged the head of Transplant Medicine, which I was told later, was a major event in the ICU, as it had never been seen before).

I am having some trouble with the fact that you start off on the list with them telling you that one of the criteria for listing is that you are not expected to live more than a year without a transplant. Then you spend some time on the list where everyone is making comments about how good your score is, how quickly you should get the surgery, how easy your recovery will be, and then it is 8 months later, and you think - only 4 more months and I'll be at a year, and then what? It is estimated that one person dies from CF every day in the USA (out of the 30,000 CF patients in the USA), and 19 people die waiting for organs, overall (non CF included).

I'm not saying that I'm dying here. I'm still living, and doing quite well at it, I might say. But I worry that some people think I'm guaranteed to get a transplant, and that I'm guaranteed to have an easy time of it, or even to survive it. And its simply not the case. The longer this process goes on, the more it seems like others think it's normal, and I think its... horrible. Others think that because my overall health has improved so much since October, and so has my activity level and ability to work- that I am "better"- let's not be confused- my lungs are not any better. It is only the work I've done to bring the rest of my body up to speed, to compensate for my lungs- that is better, along with, frankly, a lot of medical intervention. I joked with my doctor today, "I'm only one bipap nap away from respiratory failure," - and its true. My CO2 levels are still high. Not as high as they were, but TOO HIGH and without diligence they creep right back up.

All of my family members, and my friends here in Boston, and a lot of my theatre friends, or oldest friends from DG are so so so wonderful to me. Others, I feel, are banking on seeing me on the other side of surgery- perhaps because they can't deal with my medical situation, perhaps because they are just busy or have their own personal or family shit storms. I'm not upset with anyone, I just feel like - no one understands me but my bloggies, my immediate family, my most intimate group of friends here, and my old old homies. And you know what, that's a lot. But the question is, what about the other relationships? Can a gal live on 5 friends, 5 family members, and the internet alone? Maybe. Certainly, so far.

Now, I am rambling. And I don't even take Marinol anymore.

Goodnight and ps don't think I'm sad, I'm just all a-mess. Mess mess mess and now my cat thinks french fries are a midnight snack too. She is harrassing me. I leave you with this:


  1. Very nice. Hang in there, girl. You'll have new lungs before you know it.

    I have some ideas to get us all some money for transplants in the near future.

  2. I come from a family of folks who are chronically depressed. I know that meaningful and all-encompassing work can mask and stave off depressed feelings. Sick friends, uncivil behavior, difficult finances, and the amount of trash and waste Americans create all get me down. Lately, I've come to the conclusion that the BP oil spill is the death blow to the planet and the gulf of Mexico is like a big Karposi Sarcoma lesion.
    And then friends just had a baby. How can I NOT fight to keep the planet alive?
    If you are ever in the mood to play "Agony Aunts", just let me know. You'll win, but I've got some colorful language that is so miserable in context that we'll end up laughing. And while the joke is on us, who doesn't want the terrible tides to bubble up into mirth?

  3. Peaks and valleys, CG. Lord knows, I've had a few of them in my lifetime. Thanks for the encouragement! I'm sending it right back to you: Those new lungs are coming, damn it! They are coming! THEY ARE COMING! I JUST KNOW IT!

  4. ugh...I know what you mean!!! I have been on the list for 2 years!! Its hard to stay positive and believe that "our turn will come" when you wait for so long.

  5. I find these comparisons so interesting. . .but I can see the connection.

    Good Luck with your journey to a new life with New Lungs!

  6. I can't even begin to imagine what the waiting is like... I love this post! You're like me in not wanting to share crappy feelings to spare everyone else the discomfort. Just another thing to feel guilty about...our feelings. I say screw the "positive all the time" crap. The negative stuff is real, and sometimes it just feels good to let it out...

  7. Aw crap where the hell are those lungs?! Let's write an action movie. You need a big weapon and we need a lung factory. I'll be your sidekick, Dr. Give-em-up.


  8. Thinking about you daily and we all know those perfect pink airbags are on their way :)



Thanks for commenting! Your comment will be posted ! -CG