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.