"I have never let it stop me"

Meet Lori, our third stitch, who is also my mom's best friend from middle school and struggles with a case of Interstitial Cystitis.

Well, I don't have such an eventful story as you do, but here goes:

 

I first noticed having to go to the bathroom every 15 minutes when I got pregnant 30 years ago.  I asked the Dr. about it, of course he said it would go away when I had the baby.  It didn't.  I still had to go like every 20 minutes.  But I was busy with the baby, and not working, so we didn't have very much money. 

 

Finally, when my son was 2 I saw a Urologist. I remember the tests they did.  An IVP - where they inject dye into your arm - and the dye burns going in, but one nurse massaged my arm to make it hurt less.  It's so funny what you remember. 

 

Then, the other test was really degrading. I remember being in a room with a real lot of medical technicians.  They put a catheter in me and injected something in it and told me to tell them when my bladder felt full.  Well, having a catheter inside you with 12 people watching doesn't exactly make for relaxing peeing conditions. So of course, my bladder felt full right away. So the results of the test were that basically, my bladder is the size of a pea.

 

They had me try Ditropan - I think the standard med for IC.  Naturally I got the dry mouth. And Naturally, it didn't really work. They said that any other med would make me drowsy so I said I didn't want that. 

 

So basically I was left with no hope of relief. I did read that certain foods and drink contributed to it so I cut out caffeine in my soda and immediately saw a difference. I used to go about 3-4 times during sleep at night. Without the caffeine I only go about once.

 

There are definitely foods that make it bad.  When I indulge in those, I pay for it. I call it a "bad bladder day." But I have choices so I just have to try really hard to avoid what make it bad--acidic food like spaghetti sauce, and for some reason certain snacks like Nilla Wafers and Little Debbie snack cakes make it bad. Butter on my toast do too.  I just do the best I can.

 

So for the last 30 years I have spent my life needing to pee.  When I leave the house, I don't go without the FP (final pee). If I wait too long after the FP, then I need to do another FP. Even if I do a FP, the first thing I need to do wherever I go is pee. 

 

The most annoying thing is when I'm out in very crowded situations where there are only out-houses.  I do a lot of city things and that's the only choice.  I've gone in every sort of horrible contraption you can think of. The worst was when I used to go camping. I would go in the middle of the night and sometimes see raccoons--kind of scary.

 

I'm a very active person and I have never let it stop me from doing anything I want to do. I just always know that I will have to go. But I'm so grateful that I don't have the pain that is often associated with IC, I just have the frequency.  I am so very lucky in that respect.

 

I've always wanted to write a book about bathrooms.  I think the nicest one was in Harod's, a fancy department store in London. They don't allow pictures!

-Lori

Thank you so much for sharing your story with me and so many others. I know that it takes a lot of courage to talk about these issues openly, but through more awareness I hope it allow for the topics to be discussed more outwardly.