Why I Hate CF

I decided today that this Boot Camp posting thing has to be postponed, for now. I know when I am avoiding writing because I don’t want to face my blog that I need to change subjects.  Perhaps this is because I don’t feel like writing about how to “come back” from being sick in the midst of being sick.  Instead, I feel like ranting.  So here goes:

I’m in a bad mood.  I hate this disease.  I hate the fact that this is my third bout of pneumonia in less than eight months.  I just had this “cute” blog post idea of listing my seventeen-part day (with each part being a picture of each CF medical regimen item in my current plan to stay alive).  But I don’t feel like being cute.  I’m mad.  I know this shouldn’t be a blog topic on a site called “Sick And Happy.”  It’s only 50% appropriate.  But let’s face it, happy is only one side of a coin.  There is no happy without sad…or mad…or afraid.

This is when I wish I could call up my sister, Kathy and see how she did it.  Or my brother, Tom, and ask what his secret was.  But I can’t.  I have to find my own course of action.  For now, it is to write until the tears stop flowing and the dog gives up on trying to console me to go back to the couch and sleep.

There is nothing fair about a disease that consumes your entire day…and night.  That, no matter what you do to keep it at bay, never leaves you alone. There is no one to do it for you.

If this were really a blog about how positive psychology techniques can help you cope with chronic illness, I would now do something like count my blessings…or appreciate the fact that at least four lobes of lung tissue are relatively clear…or that, somehow, I have not lost any weight this time around.  Perhaps I would write a letter of gratitude to someone.  Or maybe I would write about my “best possible life” to cultivate some optimism.  No, not this time. Instead, I am going to practice a mindfulness technique.  I am going to be aware of every f’ing thing I hate about this disease, in list form.  Maybe I’ll come up with seventeen.

1) I hate that I can’t call up Kathy or Tom.

2) I hate that it is 11:09 in the morning, and I have yet to have time to eat breakfast because my entire day has been treatment and IV infusion focused.

3) I hate that I have to set an alarm in the middle of the night to stop my IV and flush my port.

4) I hate that I have a port, a week before a trip to Hawaii, where I will try to cover it up so other people won’t wonder what is wrong with me.

5) I hate that I can’t seem to gain any weight no matter how many milkshakes, Jack in the Box Grilled Bourbon BBQ Steak Sandwiches, and Boost Plus that I consume.

6) I hate that when my sons come home from school with a friend, they are embarrassed to find their mother lying on the floor, doing the Vest Boogie while infusing antibiotics.  “Oh that?  My mom’s sick, that’s all.”  Unspoken is the fact that “other mom” is the picture of health and has more friends than God, and probably cooks hot meals every night.  Unfair.

7) I hate that I feel guilty that I want company at the same time that I don’t want anyone to see me at my lowest of lows.

8) I hate my lungs…every last lobe…down to every single alveolus.  I don’t know why this came out as a smiley.  Maybe God is talking to me.

9) I hate spending enough time on the toilet to count the tiles on the floor, wondering how painful it is going to be to conclude this particular event.

10) I hate worrying about traveling now, wondering if something bad is going to happen far, far away from my CF clinic.

11) I hate not being able to hug my father, who once-upon-a-time had a MRSA skin infection.

12) I hate the fact that I am paranoid about even visiting him at his home in a retirement center, because such places are havens for resistant bacteria.

13) I hate that I have to get mad at my oldest son for not covering his mouth and nose at any slight eruption of air.  And he never remembers, so…I get mad a lot.

14) I hate wondering when the inevitable downslide is going to really get going, and how I am going to cope, and what my kids will think.

15) I hate that every time I get sick now, I need an entire team of specialists (or House) to figure out what to do with my lungs, my liver, my kidneys, my psyche.

16) I hate needing so many people so much of the time…doctors, partner, friends that I don’t want to ask for help, siblings.

17) I hate that today is a great day for Little League baseball, and it doesn’t even sound fun.

I’d better stop.  Seventeen hates…seventeen self-care items per day.  Sounds balanced.  Tomorrow will be a better day, and maybe I’ll feel like being cute.

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Comments

10 Responses to “Why I Hate CF”
  1. Jenn W says:

    Julie…I hope you feel better soon. As a fellow CF’er, who is really healthy but young, I appreciate the honesty of this post.

    We have days where we can’t fight feeling sorry for ourselves. I find it better just to give in, roll around, feel awful, and then usually what happens is something good bursts in. You know, the whole hitting bottom thing. You hit this low and then you can only go up.

    Thanks again.

  2. Jason says:

    Julie,

    I’m mad at your lungs, too. You seem like a really awesome person and I wish it was possible to yell the disease out of you. Screaming or guilt-tripping the disease to move out of you like an unwelcomed freeloading roommate.

    Get mad! Get pissed off. Don’t let that emotion be neglected since it’s a sincere part of you. You’re doing everything you can and that’s a great reason to be pissed off at the crappy situation.

    If you need me to send passive-aggressive notes to your lungs, just let me know. “I thought you would be more considerate of Julie’s vacation but I guess not.”

  3. Julie Desch says:

    Thanks, Jason. Forget the passive part…aggressive is just fine:-) I feel better today. I think I just needed to rant. I’ve been reading some awesome CF blogs the last 24 hours, and I see now how fortunate I am…for an old fart.

  4. Julie Desch says:

    Thank you, Jenn. I appreciate the feedback. I will bounce…I always do. I’m kind of surprised that I allowed myself to vent so publicly…but it felt good when it was all said and done.

  5. Katie says:

    I love your honesty about how bad “bad” really is — it’s a dose of hard, cold reality in the midst of an untenable situation. For those who are at their lowest of lows, seeing it front & center in your blog offers relief from the isolation that comes with grief. I got my comeuppance once when a troubled friend said “I can’t stand that you’re so ‘happy-happy-joy-joy’ all the time.” Ha! If only she knew — it’s just that I’m not as honest as you are, Julie. It is GREAT that you have such presence of mind and clarity around your disease and are willing to share your experience honestly with others.

  6. Julie Desch says:

    Thank you, Katie. You are the best:-)

  7. liz hay says:

    That was a wonderful blog you put out there Julie. I’m a great believer of embracing everything, including the shitty stuff that needs to be put out there periodically. As a Virgo, I liken it to cleaning. Dirt happens. It can be swept under the rug, as it needs to be done every once and a while cuz maybe you don’t have the time or energy to clean it up at that time. But sometimes it just plain needs to be acknowledged.

    It is just more real to say how you honestly feel and in that way, good for you.

    And now, it’s not under the rug!

    Viva la candor.

    XXOO Liz

  8. Julie Desch says:

    Yep, I would say the underside of this particular rug is PRISTINE! 🙂

  9. Robin Modlin says:

    Julie, I so get it. It is so damned hard. There is a time when you can not stand it any more. It takes grit, courage, honesty, willingness and inspiration from the ones you love to make it. You are an inspiration and I know that another day will come in the middle of the relentless that you will feel better and even want to count your blessings. Thank you for being honest, there is no way that others not in the CF world can fathom what it takes and you have it Julie. When you get to a certain stage you hate, hate, hate CF. We did and do too and now that we are in the transplant world with its own problems and worries and no guarantees it is such a relief to have that relentless burden of crap lungs lifted. You have to fight and fight until that miracle is possible for you Julie. If you ever need to talk…………

  10. Julie Desch says:

    Thank you Robin! I just saw this, as I have taken a sabbatical from my blog. You were right! I am better and even thankful:-) today for that am dose of Cayston!

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