Sunday, October 5, 2008

Who won this battle...CF did

I woke up this morning slightly depressed. Why you ask? I’m not sure. I should be thrilled! I get to go watch my adopted son Owen today for a few hours while Kim gets her hair done and Drew is at his softball game. I love watching this baby. He is the bestest kid in the world! I love him with half my heart (the other is reserved for my bestest nephew James).

But, I lie, I do know why. Yesterday was a hard CF day. A day where I realized that CF is winning right now. Where CF is there poking at me, telling me that I can’t do everything I want, that I need to watch out. Telling me I pushed myself too hard, doing daily, everyday things.

I am slowly packing boxes for my move. Just dividing everything into must haves and storage. So each week I take the few boxes I packed for storage to my mom’s so her BF can put them in the attic in the garage for me. There are rarely more than 4. And usually one or two are small boxes. This week was no exception. I had two regular sized boxes and two small boxes. I left the large one at home. Too big for me, with or without CF. To make my life easier I take the boxes from my living room and put them on the landing of my stairs. My steps go down about 4 steps and then turn, there is a landing there. I put them there so that I have less to go when putting them in the truck. So I packed all my wash into my jeep (two loads since I needed to wash my curtains to pack them) and headed to my mom’s. I unloaded the wash and drug it down to the basement…this wore me out. I put a load in and went upstairs to chat with my mom. I stayed about 15 minutes and then got in her jeep (Cherokee so it is easier to get boxes in) and went back to my house. I got back home and loaded up the jeep. Took less than 10 minutes. I thought I was going to die. My HR skyrocketed! I was struggling to breathe. I pressed on. I wanted to just get FOUR boxes into the jeep. I finished then supported myself on the railing while I coughed myself to tears. Literally. My head felt like it was going to explode, my eyes bulging out. I finished coughing and went back to my mom’s. I sat inside for a few minutes to make sure I had my breath before I unloaded the car. She has a wagon so I could just put the boxes on there instead of trying to carry them to the backyard garage. I would DIE if I had to do that. I refused to let them help. I needed to do t his myself. That went smoothly. Only a few coughing moments. Then I went inside to change my wash. I loaded the dryer up with my clothes and grabbed the towels to hang outside. I got to the top of the basement steps and coughed my lungs up. My mom asked if I was ok. She rarely does that. She knows my cough. I said yes and pushed myself outside. I hung up the towels, the whole time coughing. I went inside and leaned against the counter watching my mom mix up the ingredients for a cake. I felt EXHAUSTED. But by this point it was 3 and I needed to do more running around. No nap yet.

By the time I got home it was 4. I only went to my brother’s to drop off the mortgage statement. I helped Tracy hang up a thing for my nephew so he can measure his height. And we chatted for a bit. It was relaxing. But instead of just sitting down and doing a breathing treatment, when I got home, I decided I needed to take the curtain hardware off of my windows. So I did. THEN I did my treatment. A full one which is RARE for me on the weekends. Usually it’s just my nebs, not nebs and vest during the day. But I felt I needed it. After that treatment I went back to my mom’s to get my wash. I was picking my friend up at 5:30 so we could go to a birthday party for a friend of ours. I got my dry clothes out of the dryer and took my curtains to the backyard to hang them. Even after JUST having a treatment I hacked myself silly. I was disappointed. Very much so.

Fast forward a few hours (tired of the play by play yet? HAHA). We get to Kim and Drew’s to watch the Phillies game. I am outside with my friend Lauren and we are chatting. Several times we need to stop talking so I can cough my heart out. 5 minutes or more these were lasting. I was shaking I was coughing so hard. Of course it didn’t help that she would make me laugh DURING the coughing! I blow it off as nothing, just normal. Inside, though, my mind is screaming at me, “you pushed yourself TOO hard idiot! This is the price you pay!” I head home shortly after this.

I have a friend, we chat everyday, via webcams. So we begin our chatting. I hook up to my treatments, he is doing his (yes he had CF as well). During our conversations I have a few coughing spells, so bad that he asks if I am ok. These are lasting forever it seems, just wearing me out completely. I just smile and say I’m fine. But deep down inside I hate it. I hate myself. I hate CF. After some prodding from him and seeing my HR hit 160 and O2 hit 89, I give in and put my oxygen on. So there I am chatting with him, via webcam, with my O2 on, while I am awake. I feel defeated. Utterly and completely defeated. I try to make light of it all telling him not to laugh at me. He won’t, I know this.

I just hate it. I hate having to pace myself. I hate having to pretend that I feel ok. I hate having to put on a happy face for everyone and I hate having to pretend CF doesn’t bother me. Because quite frankly, CF scares the living shit out of me. Lately, as I realize what I am losing, I feel myself getting nervous and scared. Like last night as I sat looking at myself on my screen with the tubing around my face, I thought how this time last year I NEVER would have thought that I would need O2 during the day or night. He and I talked briefly about tx, but I had to stop it because I could feel the tears welling inside. I don’t want to think about that. I want to live. But I don’t know what to do to make myself live longer, to stop the progression, to win for once.

I don’t need IVs, I don’t need a hospital admit, it was just a bad CF day. Today I feel fine again. It was a day I pushed myself over the CF line. The day where my body laughed at me and made me out to be a fool. The day where CF said fuck you and won.

I hate those days, I truly do.


  1. mOMG you just described an average day for me so I totally understand!!!!

    I have no words of wisdom except to let you know that even if you dont tell others that it fucking sucks.....we know it!



  2. AMY!!!!!!!!!!

    *has sympathy coughing fit*

    God this is me every fucking day and it sucks! You are GOVERNED by the limits ur lungs have put on you.


    About the O2 - i swore i would never go on it, and look at i am wearing it as i type. Wtf? How did this all happen.

    I hope you feel better at some point, but know that you need those days where ufeel shitty and you mourn for what you cannot have b/c it puts things into perspective and it stops us from becoming greedy little bitches!

    (i'm sorry if i just made you laugh - and subsiquently laugh)


  3. When you desribe you day like this I get that feeling back.
    Some people say you forget post tx, but I didn't. Don't think I ever will.

    It's bad, I hated those days.
    Where you feel defeated and have nothing you can do.

    Big hug

  4. That sucks! I felt that way exactly when my doc told me I shouldn't really exert myself when exercising. Some of my friends were training for marathons, and I was just walking slowly like a turtle on my treadmill. Keep the faith! Some day hopefully post tx, this will just be something we look back on to make us more grateful for the gains we make.

  5. And 'normal' people wonder why we have to set aside one whole day to do two measly loads of laundry. How can we even explain to them that coughing till you puke, multiple times a day, takes up a whole hell of a lot more energy that simply carrying a basket of clothes to the basement?

    I'm glad you blogged about this, Amy, especially the play-by-play descriptions because that really IS what a day in the life of a CFer is like. I can't tell you how many times I've walked through my door, arms full of groceries, only to have to drop them all right there in the doorway so I could hack for a million minutes (crossing my legs so I didn't pee myself, of course)!

    CF Sucks.