Monday, April 13, 2009

Shaken, Not Stirred

Okay first off, can I just say that wow, it's been an intense couple of days? Seriously, I don't know what I would have done if my mother hadn't flown in from CO to help me out for a while. Funny how sometimes you just need a mom around, right?

I got out of the hospital on Saturday right after CPT, which was awesome. The RT staff there is amazing - they always make sure to hit up all the CFers by noon at the latest, since in the words of one great RT, they know we need it to be comfortable. The bonus to this is that we get discharged earlier as well. So I was on my way home by noon, and not a moment too soon. The only bad thing being that the nurse or pharmacy or someone f-ed up and gave me parkinson's medication instead of my prednisone. I looked at the pills, which were round and slightly off white rather than round and white, and immediately questioned it. Thank god for my professional patient status, huh? Anyway, for future reference and to anyone who cares: 50 mg carbidopa does not equal 40 mg prednisone. Duh.

So I was discharged on a lovely cocktail of imipenem every 6 hours, aztreonam every 8 hours, and tobra every 24 hours. The aztreonam and tobra are via intermate, so no problems there. But the imipenem? You guessed it...gravity drip! And not only gravity drip, but the thing has to be mixed right before delivery. So my cocktail quite literally has to be "shaken" every 6 hours before I can serve it to my greedy little lungs. Bastards - they're always so demanding!

And some of you might remember the whole fire and flood post from Tuesday? (Sidenote: how biblical does that sound for holy week? Sheesh!) Well yeah, turns out there are still some major de-humidifier fans going full blast 24 hours a day in my apartment to help ensure that there's no mold growth. For those wondering, obviously I am not being complacent about this - I have inspectors set up to come multiple times and I will not rest until I'm positive there's no mold in my gorgeous new apartment. But in the meantime, Sammy and I have moved into the Millennium Hilton by the WTC site. Lovely. And of course my mom has as well, so that she can help out with the infusion schedule from hell. In other words, I'm living in a hotel four blooks from my apartment, with my puppy, and my mother, and my gravity drip. All of which is just a little overwhelming, to say the least. Thankfully: 1) the hotel was sweet enough to upgrade us to a king suite when we laughingly told them the whole story at check-in (gotta laugh, there's no other way to deal with this sort of ridiculousness), and 2) the insurance for the genius who started the fire is going to indemnify us the hotel room, as well as all other damage-related expenses.

And then, to top it all off, Sunday was obviously Easter, and of course my sister and I had invited several of our "orphan" NYer friends to Easter brunch at my place - "orphan" meaning their families live too far away to visit for a weekend. My mom, my sister, and I talked and decided we would prefer not to let fire, flood, and plague (told you it was biblical!) keep us from celebrating, so we ordered a honey baked ham and all the trimmings from Whole Foods, moved all the fans into the hallway, cleaned up the place (they cleaned, I rested), and hosted anyway. So. Much. Fun. No hospital, no nurses, no beeping: just family, friends, wine, good food, and the ever-present gravity drip ;) Afterwards we watched America's Next Top Model marathon and finished the wine until we had walk back through the city lights to our king suite. Tough life I have, right?

My only other news is that I officially took 1 month short-term disability from work. Obviously for these next 2 weeks with this IV schedule I can't be at the office, and afterwards my doctor and I both agree that I need time to rest, relax, and figure out exactly how I need to move forward. I have amazing benefits at work and am lucky enough in that department that this isn't a financial decision - and I spent a few weepy moments with my mom last night wondering exactly how I got lucky enough for that to be the case. For now I have a couple of projects I am going to (gently) work on for the next few weeks as I try to wrap my health and my mind around where things are headed.

Honestly I'm not happy about not being able to work, even temporarily. And I'm scared shitless about where my disease is heading. I'm also overwhelmed with how lucky I am to love my doctor, have family who drops everything and travels across the country to help me, friends who see me at my worst in the hospital and still show up to Easter dinner even as I lie drooping on the couch, and a job that will leave me with everything I need insurance and income wise regardless of whether I am physically able to work or not. I don't need to be told how blessed I am and how rare so much of that is. It's a weird balance, isn't it? I mean how much energy can you spend being sad when so much is being given to you? But by the same token, how much of a merry sunshine can anyone honestly be in the face of losing so much? And it is a loss, I'm not going to sugarcoat that side of it. I don't think I'd be doing myself or anyone else any favors by pretending I was thrilled with the situation.

So I'm out of the hospital, but on a bitch of an IV schedule. I can't live in my apartment, but I have a gorgeous hotel suite with people and puppies I love. I had a great Easter, but I felt sick. I have to take time off work, but I have a great support system and amazing benefits. I feel better, but I'm on my third round of IVs for 2009 alone. I have a lot of drive to get better and stay healthy, but I know doing so might mean giving up some things I love - plus I'm up against a killer disease.

I feel kinda shaken, just not entirely stirred.


  1. I love the title of this post. It sums things up pretty good. Definitely bitter sweet. I'm glad you were out of the hospital and able to celebrate Easter!!

  2. As always, Piper, you are able to see the good side of things. And your humor always puts a smile on my face.

    I'm so glad that your mom is there to help you - every 6 hours is such an annoying pain.

    Being away from work can suck - but as I know you're already doing, just take it day by day. We always think what the future may hold, but it always turns out differently than we anticipate (good or bad).

    Hugs to you. I hope you feel better soon!!!!!

  3. Glad you got out of the joint early, and before Easter. It is always better to have Mom around, when you are so sick. You are blessed, and what wonderful friends & family you have to spend Easter with!

    Hope you are feeling better soon!

  4. I would totally loose my head if I had the intermates AND the gravity drip. So your ability to find teh sunny side of what others may not be able to see is totally awesome. And you've made me want to stop the constant whining!

    I know exactly what its like to have IVs then get ill again basically instantly (although it was only 2 weeks of IVs, not your astronomical 6 weeks *bows down in a 'im not worthy' kinda way*) and need IVs again.

    Hope you're better in super-time! Xx

  5. I am glad you got out and that your mom was able to come to visit. Get lots of rest and snuggle that Sammy!

  6. Amamzing how you can make things sounds so...good in this face of this damn disease. Rest up, sweetie!

  7. I so wish I had been at your Easter party LOL!!!!!

    Sucks about the gravity drip but dude a KING SIZE SUITE!!! LOL Guess we know where my priorities lie haha!!!

    I hope the month off makes you feel like superwoman after and you got for a very long time IV free!!!!


  8. Hey Piper,

    I think you're doing a very wise thing by taking some time off from work to reevalute the whole situation. Shoot, who knows, a month from now you could feel totally reenergized and be ready to kick butt! You'll just have to see how you feel when that time comes...Keep truckin', you're doing awesome!