Finally Seeking Help!

[suncaro23]

Hello,
I was diagnosed with IC in my 20's and am now 41. After diagnosis, I recieved a number of treatments. I had a bladder extension and DMSO treatments, plus took meds. I was constantly in the doctors office, missed lots of work, etc. The treatments did help me temporarily, but then I wanted to try to get pregnant, so I abandoned all treatment and in the meantime, my doctor moved his practice. It just felt like so much work beginning all the treatments, explanations, etc, over again, and you know how many doctors react to Ic anyway. There was lots of skepticism out there and it all felt like too much. I felt that I could control this beast of an illness on my own without medical intervention. Well, 13 years later, I am realizing how this has affected me. I have recently gone from full to part time at work, and I am just now admitting that some of my need for that decision was because this illness has been taking a toll on me physically and mentally. I have never had it under control and am chronically sleep deprived. A recent flare up has made it difficult for me to function normally lately. Daily life has gotten difficult, but I am determined not to let this illness stop me from living the life I want to lead. However, I am feeling overwhelmed with stepping back into this role of patient. I'm intimidated about dealing with the diet restrictions again. I don't know where to begin. Any advice would be appreciated. I feel that I have taken a good first step just by sending this message out.
I'm glad this kind of help is available from people who truly know what this illness does!
Thank you,
Dawn

[Skynard]

YOU CAN DO THIS!! This is going to take time, but imagine how much better you will feel. You just need to get back into the game of taking care of yourself and getting back on the diet. I am newly diagnosed and frustrated too, but I want my life back and am willing to do whatever that takes. I wish you well on your journey...........

God Bless.

[suncaro23]

Thank you so much for the encouragement. I wrote my entry last night, took my Ambien, which didn't help me get a good night's sleep, woke up early and checked to see that no one had responded yet. I tried to feel OK about that, but was thrilled when I got your message. I know that if I don't seek out encouragement here and from my friends, I will also not seek out help. So your reply means the world to me this morning!

[Skynard]

Feel free to PM me anytime when you get down.

I try to set new goals for myself each day. In the beginning, it was to get dressed and brush my teeth. Today my goal is to make it to my son's soccer game. It is half-way through the season and I have missed them all. One step at a time...............You're going to do great - consider yourself hugged!!!

[ICNDonna]

Try not thinking of yourself as a patient. For just today, pretend you are someone who has food allergies or diabetes --- and you need to follow a specific diet to feel good. And do play a patient role and see your doctor for some help.

I have a sister-in-law who just yesterday was discharged from the hospital. She doesn't have IC --- the only problem they've found is that she got tired of taking her medications so she just stopped --- not a good move!

Hang in there --- and instead of a patient, think of yourself as someone who just needs a little physician help to lead a normal, active life.

Warm encouraging hugs,
Donna

[purpletomorrow]

Sleep deprivation is the worst, I"m sorry you're struggling with that. I take Remeron, a tri cyclic anti depressant, and it knocks me out totally at night and lets me sleep 6 hrs uninterrupted.

Many drs say anti depressants work well for IC. Not sure why. Apparently they tamp down some of the pain messages coming from the bladder. Maybe something you might want to look into?

My IC dr says an IC bladder screams to go pee when the PAIN receptors are activated, NOT the STRETCH receptors like a normal bladder. So you control the pain, you do good things.

As for diet, I recommend you start simple. Stick with chicken and veggies, no alcohol, no coffee or tea or soda, no artificial sweeteners. Eat all you want of the good foods. See if that doesn't help you soon. The diet is wonderful help for an IC bladder. It really saved me.

i also use CystoProtek and Aloe Vera, they help a lot, and you can read all about them in various places here on this forum.

Wishing you all good things.

[VickiB]

Hi Dawn!

It sounds like you know what you have to do, and that's a major step!

I can't imagine where I'd be if I didn't stick to the IC diet. Certainly sleep deprived!

On a side note, don't take a lack of responses personally. This time of year it seems there aren't as many people on the boards, probably thanks to the longer days, warmer weather, vacations, etc.

Hang in there,..YOU CAN DO THIS, and things will be so much better for you!

Vicki

[SharonA]

I love what Donna told you. It makes perfect sense to think of yourself as someone who just needs some medical help to get back to your life.

We tend to get down on ourselves because we think we should be able to handle everything in a certain way. Like a headache, for instance...Take an aspirin and in 20 minutes we will feel better.

IC is not necessarily like that. It might take a while for your bladder to begin to feel better. Give it that time and do what is necessary to help it feel better. The IC Diet is a great beginning.

Sending you some (((hugs)))...

[suncaro23]

Thank you all so much! I am working on my first day of getting in 'recovery' mode rather than the denial mode I've been in, and it has been good. The advice I'm getting is really helpful, and I feel incredibly supported by all of you!
As for the anti-depressants, I do have a prescription for that, but I found that it aggravated my bladder even more. Ambien was working for me, but the last couple of weeks, it has been less effective.
I am planning on making a urology appt. on Monday.
I ate plain old chicken for lunch, and it was fine.
You have shown faith in me, and I know that I will be able to do this!

[maryla]

Just wanted to say welcome. And the gals have given you great advise here.

Hugs and blessings