Monday, March 12, 2012

A Spoonie's Guide to Hollywood

A couple of weeks ago, we capped off our tour of Hollywood events by attending two in one day! I know we are SO crazy. The planning and the stress that went into this was intense, not really because I was worried about what we would wear (although that was of course a concern, got to be lookin good you know), but more because how was this Spoonie's little body going to power on through. And that got me to thinking about all the very random, but for us, normal things we think about when accepting invitations to any event big or small. So I thought I'd share.

(Us at the Film Independent Spirit Awards luncheon. We ate lunch with the celebrities all around us like it was no big thing.)

Here's a list of questions/items I work through in my head:
  • What time of day is the event?
  • How much walking will there be?
  • How do I need to adjust my kpouch emptying schedule around our outings?
  • Is my small purse big enough for my catheter (of course it is)?
  • Can I nap during the day?
(At the Playboy Mansion Masquerade Party. Total ridiculousness)
  • What will I be doing the day before, clear schedule as best as possible?
  • What time do I need to take my pain pills to make sure they have max efficiency?
  • I need to wash my hair the day before so I don't have to use the energy/joint usage blow drying my hair the day of (thank goodness day old hair always works better anyway!)
  • Do I have the day after free to do nothing to start the body recovery?
  • What do I need to wear under my cute outfits to make sure my stoma pad stays put?
(In front of the famous Mansion pool)

  • How many spoons do I think I will use on this? Is it worth it?
  • Will there be plenty of places to sit?
  • What food will we have and when will we eat?
  • Do I have my handicap parking placard?
Aside from the physical craziness, one of the hardest parts of having a chronic illness is the balancing act of taking care of your body and not missing out on life's many wonderful opportunities. It really stinks when you have to say no to something you want to do, because you know you don't have the spoons or it's ultimately not worth dealing with the repurcusions. But if proper planning is an option, I make it a point to do as many of the things that we want to do.

We've adjusted so much of our young life. We do things most people don't ever need to think of, at least not in the way we do with the possible outcomes that are our reality. But we have just one life, and this is ours and we will make the most of it. I'd say it's a pretty good one!

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