Sunday, March 15, 2009

Still Here

So for the past few weeks I've been working like crazy, at least for me. The weird thing is I probably haven't been working as many hours as most people in my law firm, but I still feel exhausted. I've been putting in extra hours during the nights and weekends, something I know I shouldn't be doing, but I've had a case that was just starting out and needed a lot of attention to make all the deadlines. And honestly, I really thought I'd be okay with the whole 6 weeks of IVs thing going for me. I mean, who gets sick when they've been on heavy duty abx for 4 weeks, especially when they're STILL doing them? It doesn't make sense, right?

Well, apparently the answer to that question is a big resounding I DO, because, well, I did. Not really bad sick, obviously, but definitely a little more short of breath, tired, achey, and coughy kind of sick. I think I've finally managed to come through it: my case settled and I finally wised up and (with the exception of the obligatory social Friday night) made the smart choice to stay in and really give myself a chance to recuperate this weekend. So I've done a lot of sleeping, some working out, walking my dog, and as much eating as I can handle in between the rest of those activites. And I haven't done a single minute of work since Friday. I'm actually pretty proud of myself.

The thing is, I'm NOT okay with this. I'm not okay with the fact that even though I've been religiously doing IVs, adding extra treatments, and pretty much trying everything I know how to do (excepting of course, for cutting my hours, which I KNOW I should be doing), but yet I still get sick! I get sick ON IVS! WTF?! Sorry, I don't mean to sound like a whiner here, but it scares the living shit out of me to think about the fact that I am four weeks into IVs and still getting short of breath just playing with my dog. It's not okay! It makes me feel like I might never ever get back to where I was, and I'm not even sure what I even mean by that anymore. I just have this mental image of myself as really happy, really energetic and excitable and up for anything, even downright hyper. And I still feel those things, inside, but when I try to act on any of them I feel totally stunted. I look at my puppy and all I want to do, basically in the whole world, is run wild with him in the dog run, or walk briskly down the street with him at my heels, out to enjoy a saturday in the park and have a little fun. Instead I find myself sitting lamely on a bench, watching him as he once again amuses himself with the other dogs and their more energetic owners. And then I get up, I try to make it all happen, but I only last about 5 minutes before I'm panting, coughing like crazy, and watching as the other owners go scattering in all directions in search of somewhere less contagious. It's really getting pathetic, seriously.

I don't understand it. I think the worst part is, I honestly feel like I'm failing. Failing myself, failing my family, failing my doctor. I do so much and it's not enough, and I'm too scared to take the only step I feel like there is left for me to take, which is probably just bucking it up and leaving my job. My job that I worked so hard for. My job that, random and lame as it might sound, I honestly love. My job without which I HAVE NO IDEA WHAT I WILL DO WITH MYSELF. But maybe it's that or my lungs. Maybe the writing's on the wall and I'm just too stubborn to admit it right now.

I know so many people with CF. So many people with lung function right around where mine is. And for some reason none of them have been on IVs for all but two and a half weeks of 2009. I mean really, we're in MID MARCH and I've literally been on IVs more this year than I've been off. That's not okay. There's something wrong and I'm so so sad to have to admit that.

I'm scared of what will happen if I leave my job and nothing changes. I'm scared out of my mind about what this means for my chances of living with this disease. I'm scared because they don't take frequency of infection into account when calculating your score for transplant and I know that a really big one right now could really do some damage. I'm so scared that one of these times I'm going to find myself unable to recover, and I have no idea how to tell any of this to anyone in my life because, honestly, I don't want to drag anyone else down. I can't win right now against this CF, and I feel like the only way I can keep fighting is to just stay positive and keep working, keep pretending that I'm totally fine with all of this, or at least that I've reached a place where I can be strong about it. And I guess 90% of the time I do feel that way, and I am grateful for the things I can still do, but for the other 10% of the time I feel totally out of control. And if I'm totally honest I would also say that I am sometimes unbearably sad about this disease and what it's taken from me so far. I just desperately want to hang on to whatever's left.

There's much more than just this going on in my life, I promise (and most of it fun!), but for tonight that's all I've got.


  1. Work, to many CFer's including myself, means good health. Or at least adequate health - enough to be able to handle the stress of work.

    And for many Americans, work is our identity. We express ourselves through work; find meaning in our lives through work; and socialize.

    I find so much of myself in this last post. You may want to slap me because I'm not where near where you are, but I'm aware that I'll be where you are one day. So when I work, I cherish it. People complain about work, while I quietly say to myself "I'm so happy I'm healthy enough to be here."

    All I can offer is words of support and CF-ship.

    Take care. I know you will do what's right when a decision needs to be made. :)

  2. Wow..that's all I can say. Everything you wrote is EXACTLY how I felt last year when I was going through the same exact thing. Realizing that you just can't do the things you used to be able to do is the hardest thing to accept...and I still struggle with it daily. I loved going to work and luckily I have a VERY understanding job that allows me to work at home until after my transplant when I can go back to work.

    I wish I had something insightful to say that would make you feel better...just take care of yourself and you will know what to do when the time comes for you to make a decision.

    Talk to you soon! Jen~~XoxoX

  3. I haven't got anything profound to add. Just going to say (((HUGS))) and lots of cysterly love to you my friend!!!!


  4. Been there, felt that. One of the biggest changes I made in my life was working from home. I was ver fortunate that my employer suggested it and set me up to keep my job and do it from home. I count my blessings everyday when I wake up and don't need to get ready for work.

    If I didn't make this change, I would have had a transplant by now.

    In 2007, I was on IVs 5 months of the year. What you are explaining was what I was experiencing. You don't realize how much stress is being added to your body by getting up and traveling to work every day.

    Now, I am able to sleep as much as my body needs and roll out of bed and start work. I can do my meds and vest any time.

    I am also lucky that I have a home health nurse come 3 times a week to do chest PT for an hour.

    I think I have found the right balance for the time being.

    Is there a way you can work from home? If not 100%, how about 1/2 the week in the office and the other 1/2 from home. That is how I started but then I got too sick to even do that.

    I could go back to working in the office part of the time right now but I know what the end result will be.

    Best of luck to you!

  5. I dont really have anything else to add, like Amy said I just wanted to share my cyserly love! ((Hugs))

  6. (((HUGS)))

    I don't have much to say except I'm thinking of you,

  7. Geez, I'm so sorry you're having to deal with all of this! I've not been exactly where you've been, obviously, but I've totally felt what you're feeling. I think one of the hardest things can be when CF does its nasty thing and it's not on our terms...not that it ever really is, but when you can't put off IVs to when it works for you, or tame it into submission for a weekend of fun, or decide to take a break from whatever because you know it would be helpful/healty, not because you literally can't do's maddening. And when you're doing everything right, and nothing seems to work, it's just as scary as it is frustrating as it is scary. Rambling again, but my point is just that I'm really sorry you're going through all this right now, and I hope things get back on "your terms" really soon. Much love from down south!
    <3 Jess

  8. Hugs to you, I sometimes hate that saying but that is the best I have got. Your writing is so revealing, so honest, so expressive. I know you will figure it out and make the right choice for you, I have not been in your shoes so dont feel myself in a position to offer advice, its always easier to say what should be done when you are not the one to have to do it.

    Take care of yourself

  9. Just another note to let you know I can empathize. The whole - on IVs more than off, hating to see cf exert so much power, the fear, all of it.

    Work was my last hold out and I held out as long as I could - longer than anyone thought I should have. When I went on SSD, I felt like my heart was literally breaking. There is a light at the end of that tunnel. But finding it takes time and a lot of personal soul searching to help you figure out to find the meaning you derive from your career in other ways.

    Sending best wishes, hopes/prayers that you feel better from this iv marathon and that you enjoy the best health possible in the lovely upcoming spring days in the park with your doggie! -Ellie