the next 40 years

[dverba]

People with cancer know that at some point they will either be cured or they will find peace in death. There are out ward signs of their struggles with their disease. The people around them are compassionate and caring. No one needs reminding that life for the patient is difficult and dawning. If they miss work no one questions why. When they have to take a nap in the middle of the day, no one ask why.

Don’t get me wrong, I love my life. I want to see my kids grow up and I want to hold grandchildren one day. But every day…every day for the rest of my life will be live with this struggle that I live with. Almost 2 years now and I have had no change in my health. How long can the average person live with a broken arm, or a thorn in their side?

We smile for our family, we smile for our friends, lord knows we smile at work, (we need our job)! No one in our family can handle this on a day to day basis and I do not blame them. The problem is people forget, because we put on a good face and go to work or take care of the house, they forget we are struggling with these illnesses.

I know remission is there for some, but not for all. What does that mean to me? I can not see the next 40 years taking pain pills that just take the edge off and feeling like I have a bladder infection that will never, ever go away. Not to mention all the infirmities associated with this disease. Even using the bathroom is an ordeal.

I pray that God will reveal why this is happening to any of us. What is my purpose here? My family has never had much of anything, pay check to paycheck and not even that some times. I just can not wrap my brain around forever. I can not believe there are days when I wish I had a disease that either had a cure or a resolution. How many people end up alone with this?

Don’t get my wrong; I am not sad (at the moment). I just can not understand this. Most people don’t even know about IC and the many illnesses that come with it. Does that mean we are on the bottom of the research list? I t was not that long ago doctors said it was all in our minds.

[BT2008]

Dear DeAnna,

Thank you for your post. My thoughts have been running along the same lines these days.

We try all the standard treatments assigned to IC, and while they may work for a while, or give us some relief in various ways, we all have to live with a painful disease that will never go away.

If I have to be diseased at all, I too wish I had one with a cure, a dependable treatment, or -- even cancer -- which as you pointed out is at least merciful enough to provide an eventual end to the torment for its sufferers. And -- no one ever questions their need for pain meds. I honestly never thought I would consider a cancer patient as being "lucky"...

I don't know why we are "stuck" in a place between a cure and some sort of resolution. I agree that, in part, it is due to the fact that we are able to "smile" and "appear okay" on the outside. But we all share the knowledge that, while we are "smiling" and "looking pretty good," that it feels as though our bladders have been shredded, over and over again ...

And, I am not so sure that most doctors are convinced that a lot of this isn't in our heads...

I want to "Do Something" for us all! I would write a letter--or many letters--help with a petition, something that would help raise people's awareness to this horrible disease. But I don't know who to write to, or who to petition! I have an internal "scream" that is building up inside of me though, because so many of us are caught between a rock and a hard place: the need for a medically (and socially) undesirable treatment for pain and a totally unacceptable way of life without such treatment!

I wish I knew what to do--for myself, for all of us! Surely, we are not supposed to be left at the mercy of the many injustices we are forced to endure ... Surely this isn't the end of the road ... Surely, someone, somewhere, has a real solution for IC.

I am rambling now, but in the face of everything that has happened to me with IC, and everything I read that everyone else is experiencing, what else can the mind do but constantly struggle to seek a resolution--from someone, somewhere! It's called "self-preservation"...

And like you--"I just cannot wrap my brain around forever" with IC either...

~Beth

I just remembered this song from my youth: Tears of a Clown. And suddenly after all these decades, these lyrics are so very true...in a different context of course...

Now if there's a smile on my face
It's only there trying to fool the public ...
[I am always in PAIN...]

Well they're some sad things known to man
But ain't too much sadder than
The tears of a clown
when there's noone around ...

Now if I appear to be carefree
It's only to camouflage my sadness
And honey to shield my pride I try
To cover this hurt with a show of gladness ...
[But, I am always in PAIN...]

Now if there's a smile on my face
Don't let my glad expression
Give you the wrong impression ...
[I am always in PAIN...]
Tears of a Clown...
.

[ICNDonna]

I have had IC for 34 years now. I know that I will have it until a cure is found --- which I hope will be soon. There have already been many strides in treatments and I absolutely feel there is hope.

I honestly feel fortunate that I don't have incurable cancer or crippling arthritis.

Hang in there. You will have better days.

Warm hugs,
Donna

[dverba]

The problem is that in the last 2 years i have not had a pain free day, not one. True, I have flares that land me in bed for some times 3 days but my average day is at least a level 5-6 with my pain meds. withou the meds I am at an easy 10.

I too wish we could rais awarness. A ribbon, a braclet, a bumper sticker, a tee shirt that says I live with IC but it is not who I am. You know, something like that. We want a cure but if we do not make this a number one priority in the media it will not happen anytime soon.

Untill someone famous stands up and makes a really big deal about this the cure is going to be slow. Dr.Evens told me on my last visit how many women have IC, it was in the millions! :cussing:

I am in counseling now and seeing a psychatrist. I can not just hope for better days and go on like it will all be ok. My bladder has glass in it every day of every minute. My pelvic floor has no musle tone at all. I can not pee without taking valum. I can not have sex without a pain pill. I can not have a bm with out a drug for that. This is no way to live forever!

Thank you Beth for understanding! You have no idea how that makes me feel. I pray the Lord will lead me in the direction to help us with this. I just hope when he does I have the energy level to handle it.

[laurina]

Wow, I just talked to my husband about this last night. I even said the words " If I had cancer people would understand and I maybe cured. I am scared to death. Without pain meds I am easy at a 10 and the only reason I have not gone to the hospital when it is bad is because I know they can't help me....

This site is helping me keep my sanity right now and I can't thank you all enough.

I am learning so much, and my husband after reading some of your posts told me to go to the online store to buy what I need....because through all of your posts he too is beginning to understand and he is a Doctor.

Warm regards,

Laurina

[sickofmybladder]

We smile for our family, we smile for our friends, lord knows we smile at work, (we need our job)! No one in our family can handle this on a day to day basis and I do not blame them. The problem is people forget, because we put on a good face and go to work or take care of the house, they forget we are struggling with these illnesses.

I couldn't have said it better myself - this one paragraph explains my life perfectly. It is true that no one in our family can handle this on a day to day basis - but I remind myself - why. How could they understand? They don't feel what we feel - they don't understand that the pain comes from the same part of the brain that controls your emotions. Nor would I want them to have to understand - because that would mean they would have to feel it also. My daughter has IC as well - and it's so hard to see here struggle (she won't take meds, she barely follows the diet etc.) - she's only 21 yrs old - DENIAL is so much easier I suppose.

Deanna - We are lucky to have doctor that understands us and wants to keep us as comfortable as possible - my last visit Dr. E said he had a patient come for a consult from Washington State! Can you imagine? We are so fortunate to be in an area where such a wonderful doctor has planted himself. I know we all have "bad" days - and the daily pain truly wears on your body and soul - but try to remember the days that you didn't feel so bad and try to have faith that with additional treatment options on the horizon we will have more good days than not.

I'm currently truly mourning the fact that I had to stop taking Lyrica - it had turned my life around so much - but I was forced to quit due to serious side effects. For the first few days that my symptoms came back with a BANG - I wanted to just curl up in the bed and not deal - but then I started remembering some of my old "tricks" - I'm now doing my instillations daily, taking my valium as needed and using my IF again. Is it perfect - absolutely not - but I have to believe that there is another med that will work for me just as well as the Lyrica. I have the same hope for all of us - it just probably won't be the same med or treatment.

((((Hugs))))

[Vesta19]

Ever since I was 15 I had been struggling with bladder infection symptoms. My doctors kept prescribing me antibiotics because they thought that the bacteria was eluding their tests. So my dosage of antibiotics kept getting stronger and the time taken longer. I was taking pyridium every day but still no reflief. The antibiotics caused me to get yeast infections. So every month it was a cycle of hell. I would be treated for mysterious UTI, get period, then get yeast infection... and it would start all over again the next month.

When I was still 15 I had ultrasounds, some invasive test where the inject dye into my bladder and take pictures of me emptying it... It was hard to explain to people what was wrong with me... how does a teenager tell her friends what was wrong. Every thought that i had a STD (which is what I was tested for too) I just didn't understand as a teen you really can't, and doctors don't take you seriously.

so i suffered and suffered and I learned to deal with it. My sweet boyfried who i met when i was 15 has stuck by me the entire time. I went of birth control pills because I thought that was causing me pain, i have an hormone free iud now.

i am 23. I am on anti-depressant because i was getting suicidal. I was put on vicodin because they didn't know how to help me. I looked up my symptoms online and low and behold I found IC. I called my urologist and my OBGYN. My GYN didn't know what IC was and my urologist had that I was possible IC written in his charts. I was ****** and asked why no one advised me. but that aside, i was told what to eat and drink. On the 30th I start the elmiron instills and pills. I was given prosed that has no effect on me so I guess woo hoo my pee is blue. they won't prescribe pain killers anymore because they said they don't treat IC with pain pills. So here I am suffering until when who knows. today I have already taken 5 Prosed and 6 max strength tylenol... I want to die. Yesterday I kept crying and crying because I realize that yes i do now know what wrong with me, but it can't be cured and i will have to fight my entire life.

I don't understand. I am only 23.

[leelee88]

Here is the link to getting the shirts that Jill has got to raise awareness!

http://www.ic-network.com/forum/showthread.php?t=55544&highlight=shirts

And here is a post I posted a few days ago.. I have been where you are at!! I now exactly what you are feeling!!

http://www.ic-network.com/forum/showthread.php?t=55881

[KarenAnne]

DeAnna: I thought there were Tshirts available on this website to bring awareness to IC. But that is not why I am replying. Your post struck a nerve with me. I am so glad that you are getting therapy, because chronic pain is a major cause of depression, & you sound so depressed, which is totally understandable. I have learned through therapy to try to push the negative thoughts out & replace them with something positive. Which sounds so lame, I know. But when I am in the bathroom every ten minutes, I'll say something like,"At least I have legs to get to the bathroom", or,"At least I have a bathroom". These are just silly examples, but you get the idea.

Everyday I am thankful that I don't have a different disease, like cancer or Parkinson's, or Alziemers (spelled right?), because as bad & unpredictable as this disease is?...there are 100's of diseases that are much worse & also do not have a cure. (There is a lady on here with MS and IC & she is an inspiration to me, MS has no cure either)

I have also tried to learn to just find a moment of joy where I can, whether it is watching a good movie, reading a good book, talking on the phone to a friend who makes me laugh, being ecstatic when I can add a food back to my diet, being thankful that my wonderful husband is well & able to support us, watching the antics of my spoiled poodle, on & on. I figure that I'll be in pain whether I'm laughing or not, might as well be laughing. When your depression starts to lift then you will start finding joy again.

And I took care of my mother as she was dying from lung cancer for six months. The cancer spread thorughout her chest, to her bones (spine, ribs,skull), liver, & brain. The pain & fear my mother experienced are unimaginable. And most times, when cancer patients are "cured", they have to live with intolerable side effects from the treaments, plus the constant fear that the cancer will come back.

We should start a thread daily of five things we are grateful for, like that book from a few years back, like a gratitude journal. Hang in there & please forgive me for my preachiness today.:dizzy:

[statesboro]

I wanted to state that it seems like Vesta19 should have put what she typed as a new thread. That may help some. Another twenty something year old has been diagnosed recently. What A bummer! Anyhow, I can also state that I don't enjoy having IC one bit. I know good and well there are worse diseases. Of course, some are more known. Some get more attention, too. Oh! Some do have obvious symptoms as apposed to some of us looking like we could get up and run a marathon. Yeah, right! I'd probably fallout. Regardless, some medical conditions do have known causes and cures. How did I end up getting IC? Will I ever know? It kinda seems like we may not have all gotten IC exactly the same way.(possibly more than a single cause) Besides, I am not a female at all. One dude that lives in Massachusetts was diagnosed at kindergarten age.(and not first doctor that they went to) Yep! I did wear my "I am MORE than IC" T-shirt on the day that I went to see the Urologist.(and barber shop and restaurant) Anyhow, nobody seemed to paying it much attention. Oh, well! I will wear it some more. I have got a sweatshirt that I had designed about IC as well.

[BT2008]

Deanna: Yes, I do understand, and once again you wrote the very words that are a large part of that "primal scream" that is building inside of me more and more everyday. I know that you truly understand my pain when you wrote: my average day is at least a level 5-6 with my pain meds. without the meds I am at an easy 10And this is what scares me so badly. That my level of pain is still debilitating even with the pain meds -- yet without them, the pain is so all-consuming I can't catch my breath and my heart jumps around in my chest because it is hovering at the point where my body can barely handle the trauma it is being forced to undergo! During those times I just know that I am going to have a stroke or a heart attack or something.

And I can't even call 911--unless I do have a stroke or heart attack--because no one will help me there either -- I will be labeled either a drug seeker or a woman hysterically out-of control! And, ironically, both would actually be true!! When the pain gets like that--if I were to call 911--I would be seeking stronger drugs than the ones I have at home, any normal person would!--and Yes, I am hysterical when it gets that bad!! Any normal person would be! But those medical judgments would be in the pejorative--made with disapproval and contempt--not compassion, and on top of my trauma I would be sent home in total humiliation!

Again, how can we possibly get people to understand the horrible pain we so vulnerable to? It can come upon us at anytime, anywhere, no matter how careful we are!

I agree that some famous person is going to have to come down with IC--which I wouldn't wish on anyone--or get behind us out of sheer compassion, in order to get the attention we need for this horribly wicked disease!

The way I see it, I have 2 choices: Either I resign myself to living on narcotics for the "rest of my life" and live with the stigma and dangers that comes with that--or I try to find a doctor who will remove my bladder. My urologist says he won't take my bladder because too many people still have severe pain afterward, and then they have no bladder to boot! So, if I believe him and trust him (and he is only doc who is validating my pain at the moment), then the first of my choices is still the only choice that I have! With or without my bladder I will still be caught in the world of needing narcotics for the "rest of my life."

What kind of life IS that?? Again, I just cannot imagine...

And Vesta, bless your sweet young heart, I don't know why so many doctors keep saying: "they don't treat IC with pain pills"!! The only 'pain specialist' I have been to said the same thing!! This is totally inhumane! I thank all that is sacred, everyday, that I at least have a urologist who is willing to give me the pain meds that he does! But even then, he is not that comfortable doing so; they are not usually in the business of prescribing such long-term pain treatment. So, we are looking for a pain specialist who will oversee the treatment for me, but when that day comes along I will still be vulnerable because he/she may move away, retire, etc. and a new doc may well call me an "addict" and take them away from me! I have read too many of these horror stories! And, that fills any vision of my future with a fear that is totally overwhelming! Right now, these pain meds are the only thing keeping me alive!

Yes, something HAS to be done about this serious, serious, problem! What does Dr. Evans say about all of this? Isn't he an IC specialist? I have Dr. Moldwin's book, so I wonder if there is anything more he and Dr. Evans can do to help us all? Can't they help change the inhumane protocol that so many of these docs are working under, that "they don't treat IC with pain pills"??? What "authority figures" in the urology and pain specialist fields established that inhumane nonsense in the first place?? grrrrr.....

Okay, Beth--enough! <deep cleansing breaths...>

I guess until a solution is at hand, the best we can do is hold on to each other and try our best to make it through each and every day. I am sure if I cannot find some real steady relief before long, I will probably get to the end of my rope and also need a psychiatrist... which may help me cope a little better, but it will also mean one more co-pay per month (or per week!) that I cannot afford and it still will do nothing for my pain! I feel like I am eternally caught in a "no-win" situation!

~Beth

p.s. I think the T-shirt idea and the motto "I am more than IC" is truly wonderful! Thank you Jill!! I would buy one if I could afford it. But...we still need more ... we need serious changes to occur within the urology and pain specialist fields...they are the only ones who can give us the help that we truly need!
.

[statesboro]

I wanna state that some famous people have got IC. In fact, I can name a couple of people right now. Paul MCCrane, who played Dr. Robert Romano, the bold dude, has got IC. Actually, he said he tried to hide it from his collegues. Sometimes, he would blow his lines on purpose because of the pain. Ok. I did get that from the ICA Update. By the way, he is speaking out about the tremendous need for IC awareness and reseasrch. Also, Terry-Jo Myers, who played on the LPGA for 18 years, has got IC. Actually, I do keep up with the PGA, the men, sometimes.(and not the women too much) Hey! She actually played golf professionally with IC. (even though I have not played golf in many years due to IC) Yes! Information can be found about her on the internet. Ok. I do believe she has been to Washington to advocate some, too. I do believe other famous people probably have it, but some Hollywood bigwigs may think they have to carry a certian image that does not include conversating about such things as urinating. Ok, then. I do know many people with IC have written books. (and one that I can think of that comes on here) Also, I know that there are some artist, like painters, like the covers of the ICA Updates, that deal with IC. Ok, then. I don't know that any of that will make anybody feel any better. Hey! Typing all of it is not making my IC any better now. I just feel tired now. much love to all of you

[BT2008]

... I do believe other famous people probably have it, but some Hollywood bigwigs may think they have to carry a certian image that does not include conversating about such things as urinating.... Typing all of it is not making my IC any better now. I just feel tired now. much love to all of youHey Statesboro,

I hadn't thought of that angle: I guess it wouldn't be in the best interest of their careers to "come out" as an advocate of the horrors of living with IC.

And I know, typing all of these words doesn't make my IC any better either ... It may take care of all of the thoughts churning around in my head...but it does nothing for that constant feeling of "ground-glass-churning" inside my bladder...

...Much love to you as well...:grouphug:

~Beth

[dyno]

I also have had IC for 34 years. I was diagnosed as a teenager. I have had a full life. I have 2 wonderful children, a man who loves me, and I have hope that a cure will be found for IC.

I have had tough days but in time you learn how best to handle those days for you. We are all different.

Don't lose hope there are better days ahead and there is life with IC.

[BT2008]

DeAnna,

I tried to PM you but your message allowance if full.

If you want to email with me for ongoing one-on-one support, just clean out a few messages in your PM box, send me a PM and I will give you my email address.

Hugs,
~Beth

[dverba]

I am amazed at the feelings we all share! I thank God every day for Dr.Evens! He is tough and does not play around with pain meds and if you do not follow is plan he will drop you, so he has told me. But he has given me great hope. I wish my husband were as understanding as yours. Tell him I think he is a very wonderful man! We need more like him.

[dverba]

beth, i will do that now