Saturday, December 13, 2008


Today I started TOBI again.  So this blog will be me bitching about it endlessly.  

I usually start it at night so that I don’t sleep the first night at all.  It has been working for me for the past year.  Well last night I didn’t have any dry neb cups so I didn’t start it.  So I did it this morning.  BIG mistake!!!!  I have been horrible all freaking day.  So bad I almost went home to sit on my bed hooked up to my O2.  But I survived the day.  Not with out some serious pain though!  Ok yeah I know it pales in comparison to some people but hey it fucking hurts like hell for me!  

Right now it STILL feels like there is a 400lb man sitting on my chest and my back is arched trying to hold him up.  All your muscles in your back, shoulders and arms hurt like hell from trying your damdest to breathe normally.  My head is throbbing from coughing, but not hard since if I do it feels like my back is breaking and my lungs are going to pop right out.  Though I don’t think I would mind that haha!  I have my O2 on now but it doesn’t help the pain.  It only helps keep my HR low.  Tylenol, Motrin, Excedrin…none of them help with the pain.  Its an internal ache, a pain that does not go away with meds, only time.  How I long for my time to be here so I can rest peacefully.  

I will skip my treatment tonight and tomorrow.  Then when I start again on Sunday I SHOULD be back to normal or at least be able to function on a semi-normal basis.  

I also made the mistake of going to lunch with some friends from work.  It was the most torture I have thrown upon myself in a while.  I couldn’t even talk the entire time.  Luckily my cube-mate knew my issue and didn’t say anything.  So she kept the other friend occupied haha.  I tried to eat my sandwich when we got back but I couldn’t.  I did eventually eat it but it took a while.  At one point I put mu pulse-ox on my finger and should my mate and it was reading 89 and 130-something.  She was like holy shit!  So she put it on her finger and it read 98 and 74 haha!  She got to see first hand just what sucks about CF.  Ok well not all of it but a portion! 

So I decided that I would document what my numbers were when I left my desk and when I got to my jeep.  Below you will see what happened.  Yes the 89% was when I started and the 86% was when I took the next picture.  It did hit 85% but it went back up before I could get the picture to take.  And people ask why I can’t just deal with it when it helps me battle infections?  Fuck that!!!!  I think it has lost its efficacy on me anyway. 

Needless to say I highly doubt I will be hitting the gym tomorrow morning.  Most likely I will be sleeping until I have to get out of bed at 2 to get ready for my Christmas party for work

Ok I am done bitching.  I had much more planned out earlier today when I was driving home from work but dummy me didn’t sit down and blog right away.  I did a treatment and ate. Phooey!!!  <3


  1. Eww yea Tobi sucks. Hey at least you got food and a treatment in! Hope you start feeling better!!

  2. Oh god, Amy, that sounds miserable. TOBI is pretty much the devil. Feel better!

  3. Boooo stupid Tobi! I hate it, too. Sorry you're dealing with all this, Amy! Hope you feel better soon!

  4. Hey, thanks for that comment you left on my blog!
    TOBI sounds pretty sucky for you. It isn't as bad for me, i just cough my brains out, and thats pretty much it.
    Well, hope you're feeling better.
    Megan xx

  5. Hope you get to dump that $hit for some azli or inhaled cipro. That crap doesn't sound good for you at all. :(

  6. The even scarier thing was when I left my christmas party last night for work I checked my O2 when I got to the car cause I was battling to breathe and the damn thing read 81%!!! I didn't believe it but it SLOWLY crept up to 86%. I was like WTF?!?! Once I caught my breath I was able to keep it at 91%. I really hate TOBI.

  7. :( I know that pain.

    I send hugs! Hope that makes you a little happier. Hope you are feeling better.