"A Tribute To All The Long Time Pain Sufferers From Interstitial Cystitis"

[leelee88]

"A Tribute To All The Long Time Pain Sufferers From Interstitial Cystitis"


There are so many thing that are swarming around in my head right now but the one thing that is bothering me the most is the fact that so many of you long time suffers have been through so many trials and tribulations just to get to some point of validation.

My experience yesterday with my GP really changed the way I look at and feel about people who say they had to suffer for years before anyone even would acknowledge them. I mean, I have always had compassion for all of you , but to actually hear the words that you had to hear for so many years “Its All In Your Head” It just infuriates me to no end. I cant believe in the year 2007 there are still doctors out there who are still so ignorant to this disease! This doctor plain out stated that it was a crazy person disease and someone who wanted drugs. I am just so hurt and appalled by her words.

I am so sorry for any of you that has had to deal with this over a period of time. Just one time for me was enough! And I already have a confirmed case of IC through a Hydro/Cysto. But still she tried to make me doubt my disease. I can understand how years of this would make one think they were crazy or it just might be in their heads. Here I am hurting so bad and knowing what is causing it and then hearing a “Professionals” words and I am doubting myself! I know that sounds crazy but I am sure if any of you have heard a doctor tell you this then you can relate.

But I snapped out of it quick and then just kept getting madder and madder for the fact, that I didn’t stand up for all of you that have been there before me. I think it was due to the shock.

But I just want to let all of you know that have been through this that your strength and courage to continue to fight and proceed with your journey to find the cause of your symptoms and pain has opened the gates for people like me and so many others to not have to got through the emotional and physical trauma that you all had to endure..

I applaud and thank you all. You all are true heroes in my eyes. Take care and I hope all of our journeys will soon lead to a cure.



Ronda

[sandymarie]

Re: Tribute

Hi Rhonda

It is so sweet of you to say that. I was diag. about 30 yrs. with ic and it has been hard . It sure feels good to know that the fight we still deal with daily can somehow pave a road for younger ladies and their spouses. I believe every thing we go thru is to help someone else. I am so ready for heaven. This site has really blessed me over the past few months. It is even so hard to see family members look at you like you are just worth nothing. I don't ever want anyone to go thru what I have had to and other older ic veterans.The post about family members are so true and my chrildren don't really understand or sometimes don't seem to care after they have watched you suffer for so long. I have pretty much lost my son and my SIL is slowly working on my daughter. All I can hope is that someday they will come to their senses and hope they don't have to deal with chronic illnesses theirselves. My DIL is so high above everyone else. she should have been a ic doctor because she thinks everyone can just go on and now my little granddaughter is having problems. AHH all this junk doesn't matter. We all know when we have true pain, and who would want this life of ssd when they could work and have more finances and get out once in a while. Just hag in there and take care.

May God bless all and may we all be healed soon.

Love yall

J.J.

[humpieumpumkin]

I am so sorry this happened to you too. My parents were going through a divorce when I started having symptoms. The doctor told my parents I don't have a uti, and I was trying to get attention. Doctors truly make me sick sometimes. Thanks for the kind words. Don't let that misrable excuse for a doctor get you down!

Erika

[stac7_8]

I truly understand your frustration. I'm sorry that you had to go threw that. I hope that you are able to find a different doctor, and I pray that doc never has to go threw the pain, pressure, urgency, depression that we have all had to endure......maybe I do....maybe it would be the BLESSING that we all need is for a "doctor" to get this disease. No I don't wish any harm to anyone....carma sucks!!! lol

Take care and please keep looking for another doc. Have a nice weekend

[leelee88]

Thanks for the Blessings.. But this post is for all the people who have suffered before me and who have had to deal with this kind of discrimination for years. I only had to deal with it for one day.. They have had to endure this for years.. They are the ones that deserve the the blessings

Ronda

[tigger_gal]

Thank you leelee. when I was bounced from doctor to doctor, my husband was always drunk and we would fight because I was in pain and couldn't work, he didn't believe me I guess. The gyn sent me to the GP and he would send me back to her. She pulled my husband aside and told him that he needed to take his wife home and explain to her there was nothing medically wrong with her, she is seeking your attention, and pretending to be in pain was how I was doing it. You want to talk about a blow to the head, he screamed at me all the way home and once he had gotten drunk it was worse. I had to go back to her for a referral, and she refused. I took my mom and she questioned her left and right. she finally gave me a referral to see a uro. Again hubby and I went and he did an in office cysto, and told me and my husband, my bladder was normal, and there was nothing wrong, maybe I needed a counselor. Well I lost it, and busted out in tears. I told him that there was something wrong, and I was sick of being told it is in my head. He told me he would amuse me and do a procedure called a hydro/cysto, but, guaranteed he would find nothing. I had the procedure done, and he apologized to my husband left and right. He said your wife's bladder is horrible, she has less then a 350 cc capacity under sedation with severe discomfort. That fall in open enrollment we changed our insurance so I did not have to have a referral, and could choose my primary.. I fired all my doctors, and now have new ones.
It is not fair to have to fight for medical help. too bad some doctors are completely too full of them selves and think they are too good to learn more in the medical field to learn that IC is Real!

[Kara29]

Sending some Hugs your way Ronda. We'll always be here for you. We are truely one big family here.

[ICNDonna]

I'm sending a warm, sincere, gentle hug your way.

Donna

[Trishann]

Ronda I am sending hugs your way too. Your thoughtfulness is so sweet.

Take care, Trishann

[leelee88]

Cindy and Trishann,
You both are ones who came to mind when I was writing that..I am so so sorry you had to go through all the pain and suffering before someone believed you..Its just so wrong..

[kadi]

A very sweet girl in my bible study class gave me a book when she heard I had IC.
It was a book on chronic illness written by a pastor who pretty much said all illnesses are brought on ourselves by our thoughts & sins. It mentioned IC by name, said it was caused by unchecked anxiety & if we just had more faith, we'd be fine & recover.

I don't think this girl realized what the book said, she's one of the sweetest & most innocent people I know (she said the book had helped her a lot), so I thanked her for how kind she was thinking of me, took the book home, ripped the cover off & threw it in the recycling bin. I think recycling it into toilet paper is appropriate.

You know, it's pretty amazing how people who know so little (like the doctor you saw or the jerk who wrote this book) can be arrogant & cruel.

An antidote to this is that the ICA is coming out with 60 second TV ads to be shown on several dates this summer on a number of very visible TV channels (Lifetime, Biography, & others). Hopefully more awareness will prevent others from suffering like we have.

[LeeAnn]

cool

I'm excited to hear about these commercials. I know it will reach tons of women (and men). They'll think, "Hey, that sounds like me. Maybe I'm not crazy after all. Maybe this is real." And that'll give them the courage to seek help. I can't help but wonder how many suicides this ad campaign might prevent.

[dg2901]

Been down this road myself. Its unfortunate that it happens.

Take care..

Diana

[Roxie2007]

HI Rhonda,
Luckily we all survived those days of old with those ol'doctors who didn't know squat about IC and tried all kinds of painful, useless tests. I'm SO happy to have a great URO/IC specialist now and have all the great IC meds.
I hope one day soon we'll all be cured of this rotten IC so we can all lead normal lives again!
I hope you have a great, painfree weekend Rhonda......and everyone else! Roxie

[leelee88]

Yes you have Roxie and I am just so sorry you all had to go through what you did..You were very courageous to continue your fight