How do you do it?

[JOY]

Is a question I am ask often. And sometime I have an answer
and sometimes I just can't come up with one!! This disease, IC is one
of the most difficult things I have ever had to cope with , even before
learning I had IC I was learning how to cope with it and for the last 5
years of knowing I had IC I was learning how as well.

First you start to live one day at a time. Because IC can change, not just
daily but sometime even hourly. You may feel great when you get out of
bed in the morning and by noon you praying to "just let me get through this
one please"!

Then you start planning every trip to the market. Wondering if you can get
to the store with out having to stop along the way to pee! Your whole life
starts to evolve around restrooms. You learn were every clean or even
relatively clean restroom is, and you know where you can pullover if need
be, on the side of the highway.

You learn how to travel with pillows for comfort. Water to stay hydrated,
Travel Johns for modesty. Medication for stress. pain and whatever else is
needed.

You also hear things like, "is that all you ever think of is peeing?"
Geeez!!! You have to go again!?
Drink some cranberry juice or take this, that, other the other thing I know
it will work.
If your temper doesn't short circuit then you are still coping!!

Having to pee 30-60 times a day, unending pain that only others with IC
can understand. Shoot, even the cost of good toilet paper is enough to
push some over the edge. And we don't, won't ,or can't use cheap toilet
paper! If we did we wouldn't have anything to wipe, cause it would be
worn out.lol Yes, I am kidding ...in a way. lol

We have to fight with insurance companies to get our medication!

A lot of us can no longer work for multiple reasons and some of those are
You can't get hired while you are taking narcotic medication with a lot of
companies.
You have to use the toilet so often you end up being fired for not getting
your work done....because you are peeing instead.

So, my idea of coping is you just do it and you do it a moment at a time.
All day long, everyday just to get through. In hopes tomorrow will be a
good day.
And if you are fortunate to have a good medical team they also help you
with coping, either with therapy or medication or both. Whatever it takes
we do it in order to get better.
Coming here to IC and Me is also a way to cope you are understood here!!

HUGS
JOY

[ICKatrina]

Venting....either in a journal, a post, or screaming!!!! or all of the above and a few other ways too!

I enjoy leaving reality in my mind for a while. I have gotten pretty good at controlling my thoughts when I work at it and taking that break in my head where the whole world is good, better, and easier....awwww helps to have that moment to relax.


Preparing ahead time...with pillows, meds, protection,

Not trying to do it alone.....during the hardest times I may have only felt like I had my husband and online buddies to lean on but I needed to lean and doing so made a huge difference.

Gaining Hope...either from searching for a different doctor or searching for an answer to something you can try to releave the suffering...it was part of my fight and I wasn't going to let IC take me down without doing anything so I researched and researched and asked a lot of questions and talked to people who went through this crap too to try to figure out what to try next and to keep trying...because fighting back was part of how I cope.

Begging for a laptop...since there were a few times where it was easier to just take the laptop intot he bathroom and spend some time in there until things calmed down some.

[JOY]

My Nephew once joked about me needing a Lazy "Bowl" Recliner! Not long after that someone sent me the perfect picture of one. It was a recliner with toilet,computer, TV, magazines etc. I laughed for days over that one!

I, like Katrina, have learned to find another place in my mind to go in order to deal with IC. Even with the very powerful pain medication I have break though pain, especially when my Hunner's Ulcers have taken over my bladder.
I do a form of bio-feedback and it does help. Takes practice but it is worth the try.

HUGS
JOY

[ICKatrina]

oh your nephew is a genious....I think that would be a great gift lol :)

[jen48446]

I'm blessed I never had any IC pain however I have had tremendous bowel cramping that sometimes made me wonder if it was menstrual pain!

I read, watch tv, dvd or listen to one of my relaxation music cd's. It's amazing when I have those playing how much my mind slows done & how quickly it occurs:)

[JOY]

Jen, something I have found if my bowels are in an up roar (a lot lately with the pain meds I take) My IC is even worse if I happen to be constipated or if I have the opposite problem.
This is the thing that gets me....I take the pain meds for IC pain which in turn makes me constipated and if I don't get it under control and keep it that way...The IC gets worse. Now how is that for catch 22!????!

HUGS
JOY

[ICKatrina]

Treating the side effects to prevent them from causing a flare....part of coping lol ((((((((hugs))))))))))

[JOY]

Wanted to get this back up too.

HUGS
JOY

[jen48446]

katrina I agree, if you can prevent things from occuring or from getting worse it helps a lot:)

:grouphug: :pray: :angel: :kiss: