Tuesday, February 17, 2009

Mush, Mush, and More Mush

So okay, I know I haven't tackled this thing in over a week, but in my defense that's been mostly to spare whoever reads this blog from slipping into a boredom-induced coma. My brain has been pretty much mush since starting IVs last Wednesday and it just didn't seem fair to drag everyone else down with me. Because let's face it, most of us have enough to worry about without adding Irritable Blog Syndrome to the list (and for anyone who cares, yes, I did in fact fight with myself over that terrible pun, but what can I say...my corny side is WAAY stronger than the rest of me). And then I realized that if any group of readers is likely to forgive my abx haze, it's probably you guys. In other words, bring on the mush.

A couple of updates from last time:

1) As predicted, I'm back on the needle and under the gun. Basically I was feeling like utter shite and getting short of breath doing those basic life things that we all take for granted 90% of the time, so I knew it was time. Amazing how IVs start to look real good real fast when you can't make it to the bathroom without stopping for air. So anyway, we're doing a longer course this time -- probably around 6 weeks -- to hopefully wipe out whatever has been causing these constant infections. At the very least I'm looking forward to 6 weeks when I absolutely cannot feel as bad as I have been in between IV rounds. It's so nice to be able to breathe! Or at least, sort of breathe anyway.

2) That last sentence kind of brings me to the next point, which is that I'm on the verge of becoming a full (or near full) time oxygen junky. My sats are just too low most of the time, staying in the very low 90s even when I'm healthy and resting. At my last tx appt my tx pulm told me I should be using the O2 "liberally with any activity", which I choose to interpret as whenever I exercise plus anytime beyond that when I both need it and it makes logical sense to have it on. In other words, I'll be bringing it to work to use in my office, but probably not to any meetings with partners anytime soon. And if I start to really need it 24/7, then I'll reevaluate when the time comes. But I have all sorts of fun ways to use the stuff now since my insurance paid for a home concentrator with fill system, three different sized tanks (think large, small, and extra small), and a portable Sequal concentrator for travel/office use. I know what a battle home O2 is for some insurance COs and believe me, I'm counting my blessings on this one.

3) I'm angry at CF right now. Not an all the time, pervasive, "can't see how much I have b/c I'm so focused on the negative" type of anger. And not a cry myself to sleep kind of anger either. It's just that I'm so frustrated right now b/c I can't stay healthy, even though I'm trying, and I haven't yet found a way to reconcile the way I want to live to my life with some of the choices that I'm having to make, even though I'm trying there too. It makes me mad to wake up in the morning already feeling tired, and then to drag myself out of bed only to find that it takes me an extra half-hour to get ready b/c I have to keep stopping just to catch my breath. It makes me upset to be trying to work and instead find my mind consumed with whether or not I can breathe, or what my resting heartrate is at just that moment. And I know a large part of this is me, and not really just the disease -- I know other people who have issues just the same or worse or even just different than me who still manage to get everything done -- but right now it's just hard.

Hopefully that last point doesn't come off as too whiney b/c that's not really the point. It's just that lately I find myself feeling these moments of just heartbreaking sadness or confusion or loss or frustration, and then everyone tells me how well I'm doing with it all and I want to just respond with "yeah, but it's HARD. It's so damn hard and there are so many of us -- 30,000 patients and countless more family and lovers and friends -- who are all trying to live with this sadness, trying to survive the bad moments and get back to the business of being human, and it's HARD. So thanks for the sentiment and the observation that you think I'm amazing, but honestly I'd trade all that inspirational BS just to be able to get up, walk my dog, eat a meal without thinking about the calories or the fat content, and get on with my day." And I guess maybe that's the rawest, most honest reason that I finally decided I had to write, mush or no mush...because in the long run the only people who can really get that need are others who feel it, and I'm so grateful to have people like that available to read these rants of mine.

So that's the update. The good news being that I feel so much better, and I actually had a great weekend with lots of friends and family and even an Opera at the Met (I know, super spoiled huh?). But it's undeniable that this disease has been affecting my life in totally news ways these past years, and I guess it would be unrealistic for me NOT to react to that, at least a little. Maybe even unhealthy. So I'll take the good news, and deal with the bad, and in the meantime I guess I'll just try and fight the inevitable mushiness that comes with middle ground. At least for the next five weeks or so.


  1. Hey Piper. I just wanted to say I'm sorry. I'm sorry you have CF, that you have to rely on O2 way too much, and that the little things in life are even becoming a hassle without good breathing. All I can say is I'm sorry, you don't deserve it and CF sucks. Feel free to rant to your fellow cfers all you want. I hope better days are in your very near future! ((Hugs)) Ginger (gingerloveslife on cf2chat)

  2. (((HUGS)))

    I don't have time to write a great response but I wanted to add something for you. I will write a novel when I get home from work this evening!

    Love ya babe!!!!!!!!!!!!!!!!!!!!!!!!!!!!


  3. Yep, preaching the choir here! Its nice that people think that CF people are amazing when they find out what we have to go through, and yet somehow, it doesn't seem so amazing - all we're doing is everything we've ever known. Glad you're already feeling better Xx

  4. Back on the needle? ROFL - love it!

    I like what Megan said - people think we're so amazing, blah blah blah, but sometimes hearing that only makes it worse. Trying to explain what life with CF is like to the "healthy" world inevitably leads first to a look of sympathy (you know what I'm talking about), followed by me saying "oh, it's not that bad really. I take care of myself and I can do anything anyone else does..." which then leads to the the you-must-be-an-amazingly-wonderful-brave-superhero sentiment.

    Sometimes I wish I had the balls to just say life sucks, lol. But that's what blogs are for I suppose. We vent here, to people who DO understand, so we can face the real world with all the poise and courage society expects of us.

    You're right; it IS hard. And it's not just the physical demands of CF. The emotional and mental struggles are often the most difficult to manage.

  5. Irritable blog syndrome... I love it!!!

    Bring on the Mush, thats what we are here for! Because who better to understand it right! I am glad you are already feeling better! And an Opera at the Met how fabulous!

    Keep your chin up and snuggle your baby, we both know dogs are the best medicine :)

  6. Be corny I LOL'd over IBS ;)

    You are very lucky to get all that O2 equipment covered!!!! I'm glad you will be taking it with you to work. Sometimes just letting our hearts and lungs "relax" a little is a good bit of much needed medicine.

    You are not whining and even if you are you are welcome to! We need to vent and let the frustrations out every now and again or we would go postal on someone/something. Though if you ever feel the need to do that let me know I have a good list of people ;)

    I also hate that "you're my hero" and "you amaze" me BS. Thanks for the sentiment but you just make it harder knowing that what I go through is pure shit and others view it that way as well. Part of me is glad others see it as a struggle but a part of me also wants to tell them to shut the hell up, leave me alone, and let me wallow in my sorrow alone and without knowing the whole world "feels" my pain. Of course that only goes to those "healthy" people we know and love!

    Great big hugs to you my friend and I hope you are feeling better, both mentally and physically :)


  7. If there is anywhere we're aloud to have IBS it is in our own blogs - and i know I do it all the time - and it is because who else understands this shit besides other people with CF?

    I think we're all amazing, just not in the stereotypical heroic-disabled-person way that the rest of the "normal" world does. We're amazing cuz people with CF just have the good fortune of being generally awesome despite the odds. :)

  8. Well, the IV's certainly haven't affected your humor. :)

    It sucks, it really does suck, and people will say.. WOW.. my problems are petty compared to yours... I don't know how you do it, and then you know right after they say that, they have forgotten about it and go right back to living their lives. It's nice to hear, but unfortunately, it doesn't change anything.

    I wish I could wave a magic wand and make it all better. Hugs to you Piper. There are so many of us who understand, even though our situations aren't the exact same.