Tuesday, December 9, 2008

Thoughts and Updates

1) Thanks to Courtney's comment that she gets shakey after albuterol sometimes depending on the neb cup, I decided to switch it up a bit. My observations: the sidestream works wonderfully with both albuterol and pulmicort in avoiding the "shakes"; the Pari Sprint, not so much. So maybe that was the problem, or maybe my body is just adjusting and the drug isn't affecting me as much. Either way, I'll take it.

2) I am officially IV free as of last night. I actually finished the meds on Sunday night but the home healthcare nurse couldn't come to deaccess me until Monday. Sheesh. One of the annoyng things about an arm port is that it is tough to do any of the maintence work (flushing, accessing, deaccessing, etc) yourself. At least it is for me, especially since it's in my upper arm. Basically if it requires more than one hand to do in a sanitary and safe manner, I can't do it. But at least I can plug my own meds in, etc. And I'm free after 4 weeks!

3) Another awesome suggestion from a fellow cystic (props to Amy for this one): I am now recording my O2 levels throughout the day to see if I need O2 at all for activity. This is based on my realization that my sats haven't bounced back as well as they normally do from my last infection. So if anyone out there has any O2-related advice (and I've already gotten a lot from some great sources on CF2), please share.

4) More and more I am realizing just how much CF sucks. I consider myself a positive, proactive person, but the progression of this disease is getting a little overwhelming for me. I try to take it one day at a time, do what I have to do and then move on to the better parts of life, but when I'm really honest with myself I have to admit it's difficult. Lately I have just been carving out a very specific place for CF in my life because I find that if I give myself 10 minutes every night to relax with a cup of hot tea or a glass of wine and really let myself *feel* this disease, then I can go to work and hang out with friends and do all the other things I love to do without dwelling on my CF. Some nights I don't need the time, but I try to take it anyway and use it for something positive, like visualization of my PFT goals or just thinking about all the awesome things I plan to do post-tx. Make sense? Probably not, it's a very personal thing I guess. Everyone deals with things in their own way - for me I am learning that even though I already give CF so much of my time, that time is mostly practical things like treatments, and I need a little something extra on top of that to process the emotional side of it all. And then if CF starts to overwhelm me at work or somewhere less conducive to those emotions, I can sort of sideline that emotion for a few hours knowing that I am not pushing it away, I'm just waiting until I can give it the attention it deserves. At the end of my 10 minutes I pick myself up, shake it off, and get on with my life. It might not be the answer forever, but right now it works.

My puppy is crying. He seriously thinks that the maybe 20 minutes an evening when I'm home and not paying tons of attention to him is total torture.


  1. 1) I have the same issue with neb cups!!! My Pari makes me shaky, but my "no name" cup doesn't. So strange!!! Glad you got that figured out :)

    2) YAY!!!!!!!!!!!!!!!!! Sucks you have to wait for the nurse but yahoooooooo!!!!!!!!!!!! YOU ARE FREE!!!!! :)

    3) thank you thank you ;) I may start doing that too. I figure if you are organized at all whipping up a spreadsheet would be super easy!!!

    4) I AGREE!!!! You handle things very well though. It's hard to push back all those CF feelings and try to process them later but seems like you have it down pat. Glad to hear it. It becomes so ingrained in us that unconsciously we tend to dwell and sulk and all that not-so-fun goop. But setting aside time to dwell on it with full attention and all is a fabulous idea!!! I don't have the stamina for that but more power to you for it ;)


  2. Ive got shakey off something before. It was my colomycin IV, which was wierd as i never got skakey when it was in the neb. But we all found the other side effects halarious - drunk walking. Seriously. Banging into stuff all the time. but at least it wore off.
    Megan xx

  3. *HUGS* I hope your Monday gets better!!!! :)