Long and windy road … aaaagh!!!


I can’t believe how fast time is going by, now that I’m not spending it laying in bed. I’ve been more places in the last month than I’d been in the past two or three years (other than traveling to see doctors). Packing is such a different experience now that we don’t have to bring the wheelchair, walker, ice packs, heating pad, special pillows and extra medications everywhere I go. It’s such a sense of freedom!

However, I found out this weekend that I do have to be aware of things that can still flare me. On Saturday we drove for several hours on a windy, bumpy road with no bathroom facilities for miles, and by the time we arrived at our destination my bladder was not happy. We went straight to the hotel and I made a beeline for the nearest restroom while my husband checked in. Instead of going with him to the event we had planned I spent the day in a very luxurious (thankfully!) hotel bed. By the next day it had calmed down, but then it was time for the return trip! I slept through most of it… but what a lesson! 

I’ve learned that even though I am no longer in pain (most of the time), the underlying disease is still there, and I have to be careful. I do much better when I get plenty of sleep, stick to “safe” foods from the IC diet (that’s a whole story it itself)… and when I avoid bumpy, windy roads!


2 responses to “Long and windy road … aaaagh!!!

  1. Just wanted you to know that your story gave me hope today. I have been in so much pain every day I’m at my wits end. My doctor has tried just about everything. His next treatment for me is Botox injections so maybe that will help. I try so hard not to take pain medication (Lortab) because I don’t like the side effects. It is reassuring to know there is another option. Thank you for sharing your story.

  2. Lisa, I’m so glad to hear that what I’ve written has reached you. When I was in pain and bedridden, I scoured the internet for hope. When I found others like me it really helped. I hope the botox works for you.

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