Wednesday, June 3, 2009

I fucking hate CF

I am so frustrated with CF right now. I just want to be normal. I am so fucking sick and tired of being sick and tired. CF is hindering my nomadic tendencies. I am a roamer at heart. I like to move. I like to try new things. I like to live everywhere. I can’t do any of these like I used to. I can still try new things, with exceptions of course. I can live wherever I please I just have to make sure I will have decent medical and prescription coverage. Moving is a whole other story. I enjoy packing and moving boxes. I enjoy setting up shop in a new place. But I can’t do that anymore. I should have remembered from October when I moved that it was hell taking boxes to my mom’s and my current place. But I didn’t learn. I have spent the past few weeks moving a box here, a bag there. Slow and steady. Yet I find myself more and more worn out as I do this. Take today for instance. I put the few things in my jeep that I wanted to take over; 2 closet organizers which are very light, a clothes basket with sheets, my yarn basket and my portfolio case. Nothing heavy, nothing overly large. I was ok getting them in, I only took a few breathers. As the day wore on and my nebs wore off I found myself lying in my soon to be new bedroom, on the floor gasping for air. Fabulous. Lovely. I even took 3 hours to do it all. Not like I rushed.

I am just so fucking sick of it all! I want one day where I am normal and can fucking breathe for once! I don’t want a headache, I don’t want to cough till my lips are blue, I don’t want to gasp for breathe just cause I am taking a basket of sheets up the fucking steps!

I want off of this roller coaster!

Sorry for the blog ranting but we all have our days right? I am signing off now to hook up my O2 and read some more before heading to bed.

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14 comments:

  1. UnknownJune 3, 2009 at 10:08 PM

    May I ask what your treatment schedule is? And what compressor and vest do you use? Also, what medications, inhaled, oral, and supplements? I'd love to try to help. Maybe I can and maybe I can't.

    Ronnie

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  2. AmyJune 4, 2009 at 5:49 AM

    Mornings:

    Albuterol/atrovent
    Pulmozyme with vest (Hill-Rom)
    Symbicort

    Night:
    Albuterol/Atrovent
    HTS w/ vest
    Symbicort

    of course TOBI gets thrown in after the Symbicort on the on months

    Pills:
    Bactrim, Zithromax, Keflex abx daily Cipro on my off Tobi months
    Celexa for depression
    Prevacid
    Singular
    Zyrtec
    Vitamin C
    Calcium
    Multi-Vitamin

    Ummm I think that is all....

    I have a regular compressor that I use. It's been the same model for years I just get a new one when it starts to get a little slow for me.

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  3. Just meJune 4, 2009 at 10:56 AM

    (((((((hugs))))))))

    Stacey

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  4. Zoe IsabellaJune 4, 2009 at 11:10 AM

    Amy,
    I am so sorry you are having a shitty day.....week....etc....:( I do not know exactly how you feel (obviously) but I can imagine. Hang in there...don't give up!! Keep up this treacherous fight!!! Hugs to you.........
    Jada

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  5. whatsherfaceJune 4, 2009 at 1:13 PM

    I have an idea. What about grabbing an albuterol MDI (inhaler) and taking a few puffs of that in the afternoon?

    When I first started feeling the way you describe, I added in an afternoon treatment - that's not always feasible though, so having a couple of MDIs on hand has been really helpful.

    CF surely does suck; I feel ya on that one :(

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  6. CowTownJune 4, 2009 at 3:04 PM

    Oh yeah, I feel ya too! That's how I get when the meds start wearing off.

    It's like you have to plan what you do while the meds are working, otherwise you're screwed and get stuck on the floor gasping for air - like you said.

    I'm sorry your day is sucking wind so badly!

    I agree with Rhi, sometimes I'll take some extra puffs of atrovent when thye nebs are wearing off just to get through some more 'to dos' before actually sitting down and doing the full blown night treatments.

    :(

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  7. AmyJune 4, 2009 at 4:07 PM

    That's not a bad idea guys. I'll have to run it past my Dr and see what he thinks. :)

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  8. UnknownJune 4, 2009 at 6:20 PM

    Sorry Amy!!

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  9. MeganJune 6, 2009 at 7:38 AM

    Hope you're feeling a bit better now :)

    On a completely different note, I've just noticed that you have the exact same CF genes as me (DDF508)!! I haven't come across another cystic before with two DF508s, its usually that and a different one.

    Anyhoo, my CF twin, I shall be off :) Xx

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  10. AmyJune 6, 2009 at 11:56 AM

    Meg really???? You are on CF2chat right? I think like half of us there are double deltas LOL!!! You just didn't know it :) It's the most common mutation too.

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  11. MeganJune 6, 2009 at 7:28 PM

    Guh, I just searched DDF508 through the forums and you're right. Can we call that a blonde moment for me then? :)

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  12. BreeJune 6, 2009 at 8:54 PM

    Amy, i want off this fucking rollarcoaster with you too! IT SUCKS. I totally know how you feel. BLAH.

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  13. ChrissyJune 7, 2009 at 10:43 PM

    I'm sorry to read this. I hope you feel better soon, please know that I'm thinking of you.

    ReplyDelete
  14. LisaJune 11, 2009 at 1:58 PM

    ((hugs))

    ReplyDelete

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