Saturday, November 22, 2008


I am officially sick of being sick. Today marks day number 9 since I started my IVs (day 5 since I started the CORRECT IVs though) and I have definitely hit my limit. I can totally handle staying on the drugs for three weeks, but I honestly can't take much more of this whole feeling like crap thing. Hear that lungs? It's getting really old.

Yesterday I finally bit the bullet and asked work for some real time off. Not my normal "I need a couple of days to check into the hospital and I'll be back the minute I'm discharged" routine, but honest to goodness time off for my body to heal. As in, the entire rest of the month. Asking for it was one of the hardest things I've ever had to do, lame as that sounds. Seriously, how spoiled am I that I count sitting down with the most understanding people in the world and asking for what is technically only about 5 days off (holiday doesn't count, obviously) as such a traumatic experience? It really was though. It's like the IVs: I can handle the practical parts of having CF -- I can do to all the doctor appointments and do the tests and gaze at the x-rays and even talk to people about being evaluated for lung transplant -- but I totally freeze up when this disease actually threatens to interfere with my LIFE. I know it sounds really trite, but I was lucky enough to find a job that I love with people that I really enjoy working with, and I hate hate hate feeling like I'm not pulling my weight or living up to their expectations.

I miss my job. I miss my friends. I hate getting on the phone with my family and hearing their voices so filled with concern and worry. I hate seeing my puppy forlornly curled up over by the door to my apt waiting for a walk that I just don't have the energy to give him. I hate feeling like such a complainer. More than anything I just hate CF.

I know that with time and rest these IVs will do their magic and I'll be back on my feet. I just hope that time comes sooner rather than later!


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  2. Hey girl,
    Sorry I posted the first post under my daughter's name. I'll try again....
    I'm sending good vibes and prayers your way. I hope that after your leave of absence, you will feel 100 times stronger and there will be no stopping you. Sometimes our bodies just tell us "that's enough", and it sounds like your's is for the time being. Hang in there and enjoy this month of rest. :)

  3. I know the feeling having to ask off work. I nanny for a family and I totally feel guilty when I have to tell them I cant work. So good for you for taking some time off. I hope you start feeling better real soon!

  4. I'm sorry to hear you are still so sick but I am truly thankful you decided to take the time off!!! It does suck and it is hard to do!!! I hated deciding to take wednesdays off (even though I AM still working 40 hours) because I feel like I am not pulling my own either.

    I hope this helps and you can make it through cold/flu season with only minor bumps!!!!

    Get healthy for Dec 20th cause me and some of my friends are coming up to see the tree and I want you to meet us there :)

    Lots of hugs and love to you my friend!!!!!


  5. Piper, check out my blog when you have a sec.

  6. Happy Birthday Piper. I hope you feel great today and can celebrate!!

  7. Hang in there! I've been dealing with virtually the same problems since I got back home from my time in Colorado working for the Obama campaign. Felt great the entire time I was there; walked 5-10 miles a day and worked 20 hour days up until election day. Got home felt great ... then, bam. Pneumonia. I knew by the pain I had it bad, too. What was most frustrating was the fact that I had to tell my teachers that I will need more leeway with assignments, after they had been so incredibly accommodating to work around my Obama schedule. So far so good, though. Unfortunately, I spent a good two weeks in the hospital only to watch my numbers tailspin and was discharged the night before Thansksgiving with an FEV1 hovering around 28%. (PICC still in place just in case...) Right now, I'm currently on prednisone until Wednesday where we'll discuss options. Hopefully, my FEV bounces back. Truly disturbing to see them slope downward during an admission... Man, CF can really be a giant pain in the ass sometimes!

  8. So great to find your blog (from Phoenix's Fight), and I hate CF, too! Thanks for being real.