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Posted 7/9/2012 7:10 PM (GMT 0)
We took the kids to Disney World for a week and had the time of our lives . . . I felt better than I had in years.  I always said that I felt the Imuran tired me out more easily, and as I walked over forty miles throughout the week, I felt nothing other than normal fatigue.  The best part was being able to eat whatever I wanted.   A few times there weren't many selections, and I thought about how a year ago I never would have been able to eat hardly anything.  What a difference a year makes. 

The rashes are completely gone, and I am finally getting 4-5 days of wear time.  I truly couldn't be happier.  So this is what all of you had been talking about.  I'd have my surgery five times over if I knew it could be like this.  When I was in the middle of pyoderma and insane itching I had a very difficult time seeing all of the positives. 

Oh, and the plane was simple.  I took everyone's advice and didn't even mention the bag.  No one mentioned it or did any extra searches. 

Posted 7/9/2012 9:28 PM (GMT 0)
That's excellent! I'm so glad you had such a good time and are seeing what it's like to get your health back. It's very hard to imagine when you've been sick for so long.... but so amazing when you experience it. Wonderful news, thanks for sharing.
Posted 7/10/2012 12:15 AM (GMT 0)
Awesome! I'm so glad you had a good time! We took my son last year for his bday, and I was so happy to be able to eat a mickey ear ice cream! Last time I had gone I still had uc and ate one and was sick for 3 hours, I almost cried with happiness eating that stupid thing,lol.
Have you recovered from Disney yet? I think its the most stressful place on earth too!
Posted 7/10/2012 2:18 AM (GMT 0)
Super!! hope I can get back to travel too. RJ
Posted 7/10/2012 2:39 AM (GMT 0)
LOL at the stress factor. I think I misplaced my wallet about 5 times, my magic cards about the same, almost lost my beloved hat on Splash Mountain, and finally, did lose my beloved hat God knows where. Still, it was the best time ever. I didn't eat any Mickey ears because I had no room for it with all of the other food I was consuming. I was hoping to gain a few pounds on the trip, but I stayed the same with all of the walking. Hubby actually lost weight!
Posted 7/10/2012 2:40 AM (GMT 0)

I am so jealous smilewinkgrin     Seriously, I am thrilled for you and so happy to hear stories like yours. 

We went last year a month and a half before my surgery and I was soooooo sick.   We had the 2 meals and snacks plan [not dinner] and I had researched high & low prior to getting sick where to get the most value for our meals and snacks.   Had it all planned and printed out and I couldn't eat much of anything.   The best I could manage to eat was the bar-b-que place in Animal Kingdom,  a funnel cake near the Star Wars ride, a Mickey Mouse ice cream bar and tie-dye cheesecake from our hotel cafe.   There were supposed to be muffins to die for, cupcakes galore and zebra thingy's at the Animal Kingdom Lodge, but I didn't get a one of those goodies. 

Still managed to have a good time on the rides, though.  Hubby pushed me around in a wheelchair as I was so anemic and weak I couldn't manage the walking.   We drove from Ohio taking 2 days each way, down & back, and I landed in the hospital 2 days after we got home with a bad flare.   

Now, almost a year past my surgery [July 14], I could eat ANYTHING & EVERYTHING on my list !!!

We are going back someday and things will be very different smilewinkgrin

Posted 7/10/2012 12:28 PM (GMT 0)
Sounds like you had a wonderful time !!!! We have surprise trip planned later in year for my children to te Europe one , spending my "recovery" time researching ( think I am going to enjoy it more than the girls !!!!!!) xx
Posted 9/8/2012 1:05 AM (GMT 0)
I'm happy that you enjoyed your trip. smilewinkgrin I can't wait to share mine soon because me and my husband are planning to go there march next year. We saw this site that offers discounted disneyland tickets and we got our selves reservations. It was an offer we can't resist. What would you suggest on the rides we should not miss? smurf
Posted 9/8/2012 11:57 AM (GMT 0)
Awesome. I know the feeling. We live in Florida and would go to Disney off and on before he got sick. Avoided going there for about 5 years while he was sick for obvious reasons with his frequency and urgency issues.

We went last year to Epcot for the Christmas concert concert. Got to the park early and left after the fireworks. A full day and tons of walking and had a great time like you described.

Yes it is soooooo good to be back doing normal stuff. Hoping for the same for EVERYONE!
Posted 9/9/2012 1:08 AM (GMT 0)
I'm a little teary over here friend! We had much the same journey and I am so happy for you! YAY!
Posted 9/9/2012 11:13 AM (GMT 0)
I'm so happy to read when we see how good our lives are, we don't see that while we are ill and recovering and living with uncertainty about our bodies.
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