Monday, January 11, 2010

Soul Vacation

Getting back into the groove after a week of grooving. Confused yet? Wasn't I just posting about being in the hospital? How on earth could a hospital be considered "groovy"?????

I was sprung from the Taj on Tuesday December 29th after a nine day stay. I had hoped to get out much sooner but a few glitches and an unexpected bronchoscopy kept me in a bit longer. Didn't get home for Christmas but did for New Year's Eve and more importantly Jam Cruise!!! Jam Cruise is a charted music cruise that we have been doing annually for the last six years. It's six days packed with live music, costumes, great friends (some which we only see annually), and one of the best times we have all year. Far be it from me to let a little pneumonia get in my way of having a good time ;)

It was a very difficult decision whether to go or not. Our flight was on Jan 2nd and therefore we only had a few days to prep for the trip. Not only that but I was still finishing up IV antibioitics and needed supplemental oxygen after I got discharged from the Taj. Obviously my body was not in the best shape for travel and six days packed full of non stop action. As I thought about going I kept remembering all of the old people with COPD that take cruises because they are very handi accessible and can be restful. In the end I decided (and reassured my mom multiple times) that six days on a cruise ship might be the best place ever to get well. Thanks to some quick action on my part and help from my various medical providers, I went on the trip with a portable oxygen concentrator and finished up my IVs the night before we boarded in Ft Lauderdale. I had every drug, piece of equipment, etc. that I could possibly need, so everything that I could do at home I could do on the ship. Of course including costumes etc this put at us two 50lb checked bags, two roller carryons, a backpack, and the portable oxygen concentrator. Of course I'm a bit of a clothes horse so the medical stuff can't be blamed for all of it ;)

The first part of the trip was all about me not being too proud to admit I was struggling. At the Indianapolis airport I asked for wheelchair service to help keep myself rested. It made things so much easier especially getting through security in a relaxing way. Friends picked us up in Ft Lauderdale and we headed to our hotel for the night. The hotel was packed full of Jamcruisers and it was great to catch up with so many. Everyone was so supportive and it made my wearing of oxygen in front of them so much of a non-issue. My friends we just happy to see me and vice versa. I also made things easier on us by "cutting" in line getting on the boat. The Jam Cruise and MSC cruise staff made my boarding process a piece of cake. Thanks!

Once on the ship my top priority was health first. I was very strict about completing all of my treatments, getting enough rest, etc. While this meant I missed out on some of the music etc., I learned that I enjoyed the times I did get out and about much more because I felt better :) Listening to my body really paid off this time. Every day I got better and was able to do more. And because I was able to do more (dancing, walking etc) every day I felt better!!! By the end of the cruise I was off oxygen (except while sleeping for a safeguard), and even did yoga the last day. YIPPEE!!!!!

Now I'm back home and reintegrating into my "normal" life. Whatever that is. The love of my friends, the fun, the music, the salt air, and the experience gave me just what my body and more importantly my soul needed...a vacation. Thanks to all who helped make it possible and to my family, friends, and doctors who supported my decision to go.

Now off to my workout. My next adventure is training for the Mini-Marathon in May. Who knows if I'll finish it but it's more about the trying than anything.

Peace,
Steph



4 comments:

  1. Yay! Stephanie, I am so happy to read this. I love hearing how you took such great care of yourself & how your experience was off the charts as a result. As always, you are such an inspiration to me that there simply aren't words to express how much! I hope your BAB is bringing you lots of love.... Did he go to jam cruise?!?

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  2. hi, found your blog through the CF blog grapevine. I can relate to your recent trials, as I am 36 and have CF. However, i was transplanted on 09/08/09. About 4 months ago! You might relate to my blog a bit if only in the name(Down with Disease), check it out. www.checkonmitch.com My wife and I love "jam" music, so it was great to hear you made it onto the JamCruise. That looks like it would be an incredible experience. Keep up the hard work.

    -Mitch

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  3. Hey Mitch,
    Great to hear from you. How cool that you got your new lungs. I'm sure you're grooving harder than ever now. Excellent that you made a show on the tour before the transplant. Enjoy breathing and one day I'll be following on your same path.

    Rock on!
    Steph

    P.S. added your blog to my dashboard. Keep on bloggin :)

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