Sunday, December 6, 2009

Love (And Other Serious Side Effects)

In 28 years of dealing with CF, I think I've finally gotten pretty used to the concept of prescription drugs and the interactions they often have with my body. In fact, I would say I'm about one prescription refill away from deserving an honorary advanced degree in pharmacology. My medicine cabinet quite literally runneth over, and I'm not expecting that to change anytime soon. Certainly not with transplant, that's for sure.

Yep, I've dealt with the prednisone munchies and albuterol jitters. I've had sun poisoning because of cipro, vomiting after ceftaz, and fevers when faced with zosyn. I was lucky enough to have my tinnitus resolve after just a few weeks off tobra altogether and my kidney function eventually bounced back after the polymyxin, as did my iron and magnesium levels. I don't have a rash or bruising from the blood thinners anymore, and I'm pretty sure that whole oral thrush incident brought on by general antibiotic use is now a thing of the past. Oh, and that whole raspy (whoops, I mean "sexy") CF voice thing from all the inhaled meds? Yep, got that one too.

I'm kind of a side effect junkie, when you think about it.

When I first started dealing with all my prescriptions and refills as an adult I was always super into reading those little print outs that they put in the bag to tell you about all your drugs. Okay, so maybe not for the obvious meds I had been on forever like Pancrease (which, by the way, lists stomach pain as its most common side effect, making it clearly one of the more ironic meds out there) or even Pulmozyme, but definitely with the "newer" drugs like Prednisone and certain antibiotics. I knew which meds were best taken with food, which meds were likely to cause headaches or blood sugar spikes, and which meds meant I had to stay out of the sun at ALL costs.

Not that any of it really mattered, of course, since I had to take the drugs anyway. That's another great part of having CF -- you can educate yourself all you want on potential side effects, but unless something is causing hemo, bronchospasm, or serious allergic reactions, you're not likely to get the go ahead to cross it off your routine. And this makes sense, because really at the end of the day being able to clear the lung goo is more important than the sound of your voice, reducing inflammation trumps the desire to get to sleep at a reasonable hour, and fighting pseudomonas matters a whole lot more than that perfect summer tan. It's not rocket science or self-torture; it's just that the benefits outweigh the costs.

Recently the CF community has lost a lot of wonderful people, all of whom will be missed dearly. It seems like the past couple of weeks have been particularly tough, and to be frank about it all, it sucks. To find a group of people to connect and share information with about CF is such a gift. To then lose members of that family, their spaces left open like missing pieces of a beautiful jigsaw puzzle, is a heart-wrenching experience, to put it mildly. The passing of a friend, or of multiple friends as is (sadly) the case in this instance, from the same disease you're fighting can send you reeling. The side effects of a million strong drugs put together could hardly come close to matching the feeling of having to say, once again, "breathe easy, my friend."

And yet, none of us seems willing to call it quits. There are plenty of opportunities to do so, to shut down our blogs or erase the forums from our browser's memory, to just sign off with a simple "okay, enough, I'm done. I don't need to know anyone else with CF and I don't need to suffer another loss. Thanks for the laughs and the memories guys, but I'm out." And I can only guess that the reason we don't just throw up our hands is that the friendship, the support, and the strong sense of mutual understanding between CFers is a benefit that quite simply outweighs all the potential for loss, pain, and even fear when someone moves on in his or her journey away from this world. In other words, we stay for one very simple reason:

It's worth it.

Cystics don't come with a warning label or an expiration date. There's no handy little print out given to you when you meet a fellow cyster or fibro that spells it all out in clear and simple English.

Warning:
PLEASE USE WITH CAUTION as contains mutated genes and may cause deeper understanding of oneself and one's condition, a tendency to share common concerns or medical issues, empathy, and laughing that lead to coughing fits. Other side effects might include friendship, community, and even love.

A serious side effect indeed, but I for one am definitely not giving up my prescription.

11 comments:

  1. Piper, as I sit here nebbing HTS and Amikacin next, which by the way if you've never done this it tastes pretty bad, I am reading your blog and thinking that you have once again put into writing what so many of us feel. It is difficult to lose these people(and far to often lately) but getting to know them has been worth the pain of losing them. They all have been smart, funny, sympathetic and mature beyond their years.
    This disease is so isolating that being able to connect on line, and occassionaly in person(but don't tell the docs), is our best way of support. We learn and support each other and when we lose one, as you said, a piece is missing. It cannot be filled and we do not always want it filled as we want to remember each person for the unique individual that they were and what they were able to teach us through their experiences. Anyway, this has been long enough. I wish you the best this holiday season and that you may get that call that you have been waiting for.

    Kevin

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  2. Piper- You always know just how to say it. With all the recent loss it makes me realize just how much I depended on all of you during my time with Trent. I think about the love side effect of being with him and I'm very glad that I had that chance. Thank you so much for your wonderful writing!

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  3. What can I say...beautiful, awesome blog! Thanks!
    Jen Fierro

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  4. you captured what I am sure so many of us, definately myself included, are thinking. You did it in a much more interesting and eloquent way than many of us muttering F-CF LOL. Thank so much.

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  5. Amen, you hit the nail right on the head. Thank you for putting these feelings into writing.

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  6. couldn't have said it better myself. As much as writing "breathe easy" sucks massively, being able to say "see you on the other side" or "Wait for me" is ten times better.

    I hate that we have lost so many friends before the winter season has even officially started. I sit here scared that I will loose more. Or that I myself will loose. It's terrifying. But thankfully I have all of you to talk to and we all feel the same way.

    I love each and everyone one of you!!!!!!

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  7. Piper,

    Is it the reminders of our own mortality that heightens our sense of living? Or is there simply comfort in understanding the journeys of others that we might perhaps find our path better? Or is it simply a sense of acceptance and belonging?

    Thanks for putting into words that which I couldn't. ~Juliet

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  8. Thanks for the great post. This part really hit home for me-as I am going through adding more and more meds to my routine: "That's another great part of having CF -- you can educate yourself all you want on potential side effects, but unless something is causing hemo, bronchospasm, or serious allergic reactions, you're not likely to get the go ahead to cross it off your routine. And this makes sense, because really at the end of the day being able to clear the lung goo is more important than the sound of your voice, reducing inflammation trumps the desire to get to sleep at a reasonable hour, and fighting pseudomonas matters a whole lot more than that perfect summer tan. It's not rocket science or self-torture; it's just that the benefits outweigh the costs".
    I love reading your posts!

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  9. Ha! "One prescription refill away from deserving an honorary advanced degree in pharmacology"... I feel like I'm right there as well (this is Lauren's husband, Brad, by the way).

    Anyway, I came over after you posted on cf.com today, and this post really awesomely summed up how I've been feeling lately. I knew about Lauren's CF even before I started dating her (nearly 10 years ago!), so it was always just a given that she would go first. However, that knowledge could in no way dampen the amazing marvel of a woman that she was; neither could it prevent the love that we shared from flourishing.

    Am I disappointed, angry, sad that we only got to be married for 6 years? Of course! But the disease that took her life also afforded her a set of circumstances that drove her to make every moment count. And that's what I'll remember forever, and will continue to drive me in my (relatively) unsullied health to keep from wasting time or energy on things inconsequential.

    Given the seeming bleakness of the situation, the average onlooker might assume that the last decade of my life was for naught. But I am a better man for having loved Lauren through the challenges and the threat of imminent (though unpredictable) separation. I'm glad to have shared in her life, and to continue sharing with those who knew her as we try to figure out what our lives will be like without the tremendous woman we called friend, sister, and wife.

    And I'll always be able to sing "I Am the Very Model of a Patient in the Hospital," remembering the hilarious evening she and I spent putting it together!

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  10. Piper, thank you so much for what you have written here. This is my first time reading your site and I am glad I found it. I have two children, an 8-yr old son and a 3-yr old daughter who both have CF and sometimes it gets hard. But you have just reminded me (not that I had any doubt), they're worth it. They're worth all the worry, the late nights, the middle of the nights, the hospital stays and everything else. Thanks for your spirit.

    Mom of 2 w/CF

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