Tuesday, October 5, 2010

Chronic Disease choices

My new website has been put on a semi hold while I figure out some coding stuff. It would be great if I could do that while I'm flat on my back in bed, but reading is a challenge, not to mention comprehension. If you've known me since I was a kid, you can only imagine how difficult that is for me to deal with.

This brings me to a larger point about choices we have to make when we're sick. I remember hearing a few years ago someone talk about the reality that when we say "yes" to one thing, we say "no" to another. That isn't any truer than when you are sick.

Some of the choices I have to make each day:

- Whether to go to bed early or read to my son at night. I have a portable IV pump, which was supposed to make this a moot point, but after the night when I had a line full (yes full) of air, I decided the best thing was to stay still during my infusion. We put Kellen to bed, and then I start my meds, which means I finish after 10.

- Coffee or extreme fatigue. Kellen gets up between 6 and 7 every morning. Since I don't finish infusing until after 10, I often am awake until close to 11. I'm lucky if I get eight hours of sleep. Dan goes to school, and then I have Kellen. He's taking swimming lessons, so my only real option if I'm going to survive the morning is some form of caffeine. I have stomach problems so this only complicates those. It also means that I likely won't take an afternoon nap, even though I should.

- Pain or well, pain. Speaking of stomach problems, I get to choose between the types of pain I get to experience each day. I have chest wall inflammation (pleurisy in medical speak). I went to the ER several times for chest pain before I learned what was wrong. Advil pretty much reduces the inflammation so that I'm no longer in pain (at least that way). But if I take Advil, I risk stomach pain and causing further damage to my GI tract.

- Sugar or no. Because of the systemic overload of bacteria, a lot of lyme patients have trouble with things like yeast overgrowth, and as a result are encouraged to eat a low carb diet. The problem for me is that not eating sugar has led to hypoglycemia, which causes dizziness. I'm already dizzy enough, TYVM. I am currently on the "fuck-it-diet."

- Pixar or Bravo. I would just like to thank Pixar for creating such brilliant kids movies. They are actually quite enjoyable for adults. As much as it saddens me that Kellen watches so much TV, some days that's how we survive. We have already decided that Kellen will be getting more DVDs for Christmas because I know nearly every word to Cars. I'd love to find Lion King (though I think it's in the "vault"). We're also looking at Ratatoille and Aristocats. I'd love other suggestions. I used to have a great disney collection, but they are no longer in existence! (The movies we do have are Cars, Up, Nemo, Shrek (all 3), Toy Story, A Bug's Life, Tarzan, Happy Feet.)

On another note, several blogging friends have asked what they can do to help. I've been thinking about that, and I think the greatest thing would be cards. There is something about opening the mail to find a personal card that brings a smile to my face. It reminds us we are thought of. I used to have a large collection of cards, which burned up in the fire. I've been trying to decide if I should post my address or get a P.O. Box. Our address has been so publicized that I don't know if publishing it again would matter much. But I'm also a little nervous about doing so. More details this week. Thank you all for caring. The support I've gotten in the last couple of days has been overwhelming. Thank you.


  1. I would love to be able to make you smile by popping a card in the mail! If that's what you need from online friends, I'd be happy to do it. (You could certainly email it to me, if you want.)

    Thanks, by the way, for being so real and open about your struggle in recent posts. I've wondered about the day to day battles you must have but never felt it was appropriate to ask. I hope you get all the support you need - virtual and IRL!

  2. If you aren't comfortable posting your address, you could always DM it to us via Twitter (though a PO Box would be a more long-term solution).

  3. I bet Kellen would Love "The Incredibles" or "Meet the Robinsons" or "Monsters, Inc". "Cloudy with a Chance of Meatballs" was ok, not too bad.

    I love "Ratatouille", so I'd get that.

  4. Oh do I hear you on the coffee vs fatigue thing. I love coffee for it's ability to drag my arse slowly and painfully through college... definitely not for it's taste!