why do we go through all of this??

[Portia17]

why do we go through all these procedures on the board like I do and it does not work

I can't stand or walk long so why did I bother doing all of this, medicines, diet bladder treatments

I am on my last bladder treatment and still have pain and I go to pain mgmt

Does everyone here just sit and lay down all day like me to get releif?

This is no life

[Portia17]

does anyone know the answers to the above

[Dixiefireball]

hon it sounds like you just haven't got the right treatment working for you yet you and your doctor may have to change things around a bit before you get the best treatment or it could be that the treatment/meds your own hasn't had time to work yet.
i believe we all went threw this at one point and time. for me some days are better then others.
sending you hugs and prayers
Rhonda

[Stephanie2004]

The only answer I can think of is:

Really, really bad karma.

Or, if you believe that suffering builds character, good karma - it depends on how you look at it. :hmm:

(I try to take the latter view as much as possible. It doesn't make me hurt any less, but at least I feel happier about it.)

[Portia17]

Dixie - Thank you for your kind words.

Stephanie - I really do not think your reply was so kind as we all suffer here both physcially and mentally from this. So if you happen to post when you are suffering, I will remember to preach Karma to you

[Betsie]

Well, the way I see it, we all have different ideas of why we have to go through these things and then we all have different ways that we handle them. :idea:

I think anytime a person takes the time to respond, it is usually their own heartfelt way of dealing with something and they hope it will be helpfull too. I think only kindness is intended....and understanding. :)

[kadi]

Dear Mary,
It took a long time & a lot of trial & error, but I am better and I believe, when you find the right combination of treatments for you, that you will feel better again.

A year and a half ago, I was so desperate, couldn't work, drive, eat (from nausea from constant pain), wear pants, exercise, read a book even (couldn't concentrate). I was going to the bathroom every 15 minutes, so I couldn't even sleep.

It was not an easy road back. About half the medicines I tried, I couldn't tolerate due to allergy or severe side effects, another set of meds didn't bother me, but didn't help either.

Finally, I found a combination that worked for me and my life is mostly normal again. It's not perfect, I definitely still have IC and it's effects, but I can work, drive, read a book, wear pants, exercise some days, drive comfortably most of the time. And I mostly stay hopeful that this is not forever, with occasional dips into pessimism when I'm flaring. (And then I come here for encouragement).

Hang in there, don't give up. You just haven't gotten the right combination yet. It takes most of us awhile.... This disease is very individual. Try as much as you can to stay positive. Be kind to yourself. It will be okay...

Sending a hug and a prayer that your better days will come soon,

[Stephanie2004]

Mary, I'm so sorry that I didn't phrase my response more carefully. I had no intention of hurting you. The "bad karma" remark was meant as a kind of joke, a tongue-in-cheek, laugh-so-you-don't-cry thing. The part about building character was truly heartfelt -- that really is how I look at it.

"Bad karma" is sort of a family joke for me. I guess I just forgot that it might be taken seriously. For a long time, my mother used to say that she felt like she had bad karma, that she somehow was meant to suffer. I would disagree and try to change her mind, until the day she wrecked the car, got an audit letter from the IRS, and went to the emergency room with a piece of turkey stuck in her throat all on the same day. In the car driving her home, I looked at her and asked, "About this bad karma, so what did you do, anyway?" We both burst out laughing and felt a lot better.

Once, again, I'm sorry. I only meant to smile through the pain. :)

[Portia17]

Stephanie

I feel better now. Knowing me the way I feel I probably just took it the wrong way.
I just want some of old life back.
Thanks Stephanie

Kadi
Thanks for your kind words. Can you tell me what combination of stuff you use to help the i.c.
Thanks

[ICNDonna]

Mary, I can't tell you how many people come to the IC Network boards feeling just like you are right now. Then after a while, when they find treatment options that work well for them, they stay here to help others over the rough spots.

It can take a while to find exactly what helps most, but most of us do. My IC was diagnosed thirty years ago and I still remember how awful the first months were. You will have better days. Hang in there.

Sending warm healing thoughts,
Donna

[kadi]

Mary,
Just so you don't think it's a secret... But keep in mind that Each person is different.
My combination is
For maintenance: Elavil, Ditropan, DMSO cocktail (DMSO, Heparin, Marcaine, SoluCortef, Sodium Bicarbonate), Necon 1/35 (birth control for continuous use=no periods, so no period flare) Strict adherance to the IC diet.
For flares: Darvocet if needed, Pyridium, ice packs


I had total despair in the beginning because I'd read about so many people who had great success with Atarax or Elmiron, neither of which I could tolerate AT ALL. I cried so much when each of those meds failed for me. Atarax gave me the most frightening pounding heartbeat and irrational panic attack. Elmiron made my IC much much worse... I went through about 15 different meds before I found what worked for me. It was a frustrating & very frightening process.

What works for me may or may not work for the next person. The main thing is to know that it is quite common for the first few things you try not to work and just to take a deep breath, let your body rest for a bit, then try again with your doctor's help... There are lots & lots of treatments--I really believe you will feel good again and I also want you to know that you are not alone. I know exactly how you are feeling now, because I've been there. Write anytime, okay?

[adrie]

I can't help but get incredibally frustrated reading much of this. I can't take Elmiron because it increased my liver function and didn't work. Elavil is the medication from hell. After DMSO I couldn't walk. All other antidepressants, I believe I have tried them all, make me feel worse. I had two hydrodistentions and felt worse. I have had pre-sacral nuerectomy and my trigone nerves cut. I tried Hyosimine but not good. Now my doctors tell me they do not expect me to get better due to the lack of response to any of the routine treatments. Insurance will not pay for Botox injections, and I was put on methadone for pain which made me throw-up for a week before I quit that. Good news, I am on Atarax, Skelaxin (muscle relaxor) and Singulair but no improvement yet. Iam following the diet and goin to physical therapy for PFD. It seems to me that people who say it gets better have had one of the treatments previously mentioned work for them. Maybe my Skelaxin, Attarax and Singulair will kick in but it doesn't seem likely because I have already been on them since September. Now, what do you say to someone like me? :headbang:

[sarah2109]

hi Mary,
first of all i want to say i understand what you are going through. Anyone who is suffering what ever the cause will know how you feel. its a bit like grief we all go through the same sort of motions.

i havent found anything that helps me apart from steriods which arnt a good thing but for me as my IC is Chronic its a life line when things get really really bad.

i had to rearrange my life around my bladder and i now consintrate on the things i can do instead of the things i cant do. it has taken me nearly 2 years to really come to terms with being poorly. i bleed a lot from ym bladder and have a lot of UTI's and thoughs days i try and save my energy to help my bladder.

when i gave up work it was really hard but i thought there is no point in punishing myself further as i was in enough pain.
there was a few times a long the way where i had pics of my kids and pills in the other hand and the pic won every time thank goodness.

i was lucky i have a good hubby and some nice friends to help me along my path.
i really feel for you as i know how you feel.
is there anything you like doing and are able to do it at home eg... readig a nice book or even write your own story, anything to focus your time on something else rather than pain as it will drive you mad sweetheart.

you probably are feeling angrey with the world and i have been there too, taking it out on friends and everyone around its all part of our suffering.
sometimes there are no answers and you have to take yourself and look into the mirror and say.. i am suffering and in pain 24/7 nothing is going to take it away but i am not going to give up trying and i am not going to let my bladder rule me i am going to rule my bladder. the days when you cant do much then dont beat yourself up over it, try and do something you can do like put posts on here chat to us and you will be helping us and that is one of the best jobs you cold ever have knowing you are helping others who feel so much like you do, thats how i look at it.
right now i am writing this lying on my sofa with my laptop on my legs i have been to the toliet lots of times today and i am in a lot of pain, so today nothing is getting done around the house, but i am doing something with my time by posting on here to you.

please dont give up you have the right to be angrey and sad and upset but try and think of the good you are doing and what you can do and you will get there in the end.
lots of love and hugs to you mary
your friend
sarahx

[sarah2109]

hi mary,
jsut want to say sorry about the spelling in the post i am not very good at spelling and i normally have a tool to correct the spelling for me but i havent seen one on here. i hope you can read it ok.

is there a spell check on here? if so can someone tell me how to use it.
love sarah

[Portia17]

To Sarah My dearest friend:

Thank you so much for all you do for me

I don't think there is spell check

Love
Mary

[hisjenn]

Written after finding out she was dying from cancer - by Erma Bombeck

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have invited friends over to dinner even if the carpet was stained or the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have sat on the lawn with my children and not worried about grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.

When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."

There would have been more "I love you's." More "I'm sorry's."

But mostly, given another shot at life, I would seize every minute, look at it and really see it , live it and never give it back.


this is how i do it, Portia. when i feel good, i use that time to be the mom that i once was again, even if only for one day... and when i feel good, i use that time to involve my kids in the work around the house, so that at least we are spending time together and i am getting something done... and i talk on the phone and i talk on the computer, and i make myself interact emotionally when i can't do it physically. it helps me to try and wave off the depressive state i can soemtimes get into when i have had to lay around for 3 or 4 days at a time.

i have just been diagnosed and haven't yet gone back for my cysto and hydrodistention follow up, so i am not doing any treatment right now, but i do know that i have severe IC. it's a struggle to wake up every day... and sometimes i am so angry, i wanna throw up to read someone trying to be positive like i am doing now in this post, but it does make me feel better to make myself emotionally interact with someone... anyone... 2 or 3 times a day, if i can't physically. And any type of "good day" i have, is devoted to doing something physical, cause with or without activity right now, with no treatments going on, it doesn't matter what i do, i end up laying down for days on end from pain. so might as well enjoy the few hours of "good" that i get.

i used to have a "feel good day" and would not do anythign, hoping to extend it to 2 days ... but that has yet to happen, so i just do what i can now, when i feel good and i no longer waste my "feel good" day, and then find other ways to interact when i can't be up and going.

i guess using that one day to get up and do something has made me feel like i accomplished something, and i don't really get the "this is no way to live" feeling anymore when i have to lay around.

i hope this will help you in some small way, Portia... i wish you the best and pray that your light at the end of your tunnel shine bright for you soon.

~jenn~

[Betsie]

Jenn,

That was incredibly said, full of honesty and conviction...in a million years I could never have found a way to say the positive/negative truth all at once...Portia, I hope this makes as much sense to you as me....I may feel much better, but pep talks and heartfelt ones at that are never overdone and usually right on the money/

Thank you jenn and welcome to the ICN, I hope you will continue to psst of contribute, on the good days as well as the bad....that's where we all no we are so alike....the est is a mystery. :)

It helped me and though I am better there is always a nagging sense of staying on top of this and frankly somedays, I am tired of the work it takes to be good enough to maintain where I am...but good grief, it is far better than that no answer place.

Hugs!!!!!!!!!

[vm]

Jenn - AWESOME post!!!! :) :welcome: