Feeling Alone in this Disease

[jeanann2]

I am going thru a flare and well dealing with the medical proffession can be a bit frustrating. Even the ones who treat this disease dont understand it.

I feel so alone in this that no one understands.....and the viceral pain....well that is uniue to this disease....as it afftects our emotions....

I was in the docs office and when one nurse left, I just cried, they really dont understand this thing.....

any way thats me today

Jean Ann :)

[July]

Hey Jeanann!
You are not alone :grouphug: , although it can seem that way when not one person around you has this disease, let alone ever heard of it. That is where this great network comes in!!! Can you imagine what women and men with this illness must have gone through before the internet was available to connect us? I hope you feel better soon! Feel free to email me whenever you are feeling alone.

[jaime15]

Jean Ann,
I almost understand doctors and nurses and their crazy ways sometimes. Lord knows I didn't know anything when my IC diagnosis was delivered.
(BUT it IS up to them to want to know more in order to help us.)

IC sure does affect our emotions in a very pronounced way. I look at it like, If you don't know anything about this disease, at least be compassionate and think before you speak. I mean, how many more times will we hear drink cranberry or an antibiotic will clear that right up....... :bonk:

So you are not alone........we all go through different things in life.......but are connected by our unique disease.....so well put as you said above.

Big hugs to you........... :grouphug:

[kadi]

You are not alone. I've never felt so alone or abandoned in my life as I did when I got sick. No one understood - family, friends, doctors, no one seemed to understand how severely IC can impact your life... The beginning, before you find your combination of things that work & your way of explaining things to others, is the hardest. It does get better from here.

Were you upset at the doctor's office today because of how sick you were feeling? Or at how you were spoken to? Both things can be overwhelming. Let me know if you ever want to talk.... (PM me if you'd like.)

Sending a hug and wishing you better days soon,
Kadi

[ICLori]

I've cried several times in front of doctors since I've had this disease. I never did before getting this disease.

And I understand exactly how you feel when you say no one really understands how bad it is.

I know you feel so alone - but we are here with you, all of us alone together I guess.

Please don't give up hope. Soon you will find a medicine or combo of meds or treatments that will have you feeling alot more like your old self again, and things will be better. You just have to have incredible patience in getting to that point. In the meantime, we are always here for you.

Blessings, Lori

[mom_in_ma]

I understand. My first two urologists brushed me off...completely scoffed at the idea that I.C. could be the cause of my miserable symptoms. I was crushed...at least when you have a diagnosis you have options for treatment. To be honest, I found my treatments on my own, by luck. And eventually, I found a wonderful urologist. But, I agree with Kadi, it does get better. The beginning is the worst, but eventually we find the things that work for us.

[Debgail]

jeanann, Nope you are definately not alone here...and with the feeling that you are alone... in bad times with this disease, it seems that all of us feel that way since its not a disease like cancer or something that everyone can right away identify with and offer comfort. Not to mention Urology offices are not all a haven of comfort either. Yes...I too have cried at the uros office..and I am not a cryer by nature. I just thin k sometimes we get dicouraged because this disease can be life encompasing. Its at those times when you come here...to the boards and everyone will be here for you to tell you that you are not alone! I hope you have a pain free day!!! :bunny: Love Debbie

[jeanann2]

Thank you all for your replies.....I know that you all understand the uniquness of this disease and that you have felt as I ....

I have had a pretty good day....I was diaganosed in Jan 2002 and yes it was VERY VERY difficult in the beginning....I have learned alot....and one is to have the medications I need on hand at ALL times....I did have enough to do two DMSO treatments....and of course keeping pain medicationa on hand....these little things can do so much to ease our minds....

Thank you again you all

hope you are all having a pain free day...I pray
Love
Jean Ann

[Iris]

Hi you are definitely not alone, I was diagnosed in June 2002, and it was a very stressful and alone feeling time for me, until I found the right medications and this board. The ICN and gals really helped me through a bad time in my life. Now I am on the right medications, had physical therapy and biofeedback, and doing very well, feeling almost like my old self is back again. We all share a common bond, and it is wonderful to come here and know you will be understood. I do not know how I would have got through the stressful times without this wonderful message board, take care Iris. :) :flower:

[PenguinK]

Jeanann, You're definately not alone. :grouphug: We're all here for you and dealing with the same, or similar symptoms and people that don't understand this disease.
Someone actually asked me if I would be better in the summer when the weather changed. :headbang: :bonk: :loco: "Are you serious?!" I thought. I told him no, this is a disease, there is no cure. I am on medications to handle it and right now I am just in the middle of a horrible flare. He said "Oh." and nothing else. -duh!
I just love trying to get it through to people that I may be fine one minute and in pain the next. I think if they don't see blood or puke they don't get it.

KK

[TexasHoney]

Jeanann, I know exactly how you feel. I bounced between my gyno and my former uro for 2 years without getting a correct diagnosis. I finally changed uro's almost one year ago and while I am nowhere near being cured at least I know what I have. I find comfort in coming to these boards to learn about this debiliating disease and vent about my frustrations with the outside world. Only an ICer can understand what IC feels like. I often describe it as being like a perpetual bladder infection that never goes away. I used to hardly ever cry with illness or pain but I found myself crying more and more lately. My freinds and family can't seem to understand extent impact this disease has on the body. It causes me to not get enough sleep and often the advice I get is to relax and read a good book before going to bed. Then there is the old drink cranberry juice advice :headbang: I get tired of expalining that cranberry juice is bad for IC. This website helps me sooooo much. Here we are not alone. Feel free to vent any time you want. We all know what you are going through. I hope you start feeling better soon.

Hang In There

[Ania]

Hi JeaneAnn

I understand how you feel, you are not alone !
Get better, feel better and always think positive, no matter what.
I always say to mayself - it could be worst then problems with stupid bladder.
:)
Ania

[jeanann2]

Thanks you Guys!!!! Many Many ((((((((((((Hugs))))))))))))) to you all...'

Today is better...thank GOD!!!! I yelled at a nurse yesterday and apologized...however got a call today from the patient advocate at the VA and she is inquiring abou the "problem" I had with this particular nurse....so maybe what I did was good it may have woke them up to the imcompetance going on in this department....we are NOT always crazy sometimes it really is that the medical staff is not compassionate or understanding..

Physically I am better....but it kinda wipes us out....I am taking meds for pain and to control the bladder spasms and of course I gave myself a DMSO treatment yesterday...

So well here we are....oh yes and identify with talking to family and friends...some are in utter shock when I say I am sick...and then well I got a card yesterday hoping for a speedy recovery!!!! I told them it was chronic....man if I am going to get flowers everytime I am sick...well this person should by a flower shop LOL...any way it was the thought that counts...

Hope you are all doing well today...

Love
Jean Ann

[mayray518]

I felt like Kadi, totally abandoned when I got IC. My family didnt believe me; I really found out who my friends were. I often compare it to being convicted of a crime you didnt commit and eventually those close to you doubt you. Thank God for the internet so we can support each other. And it is great that you brought it to the attention of the person in charge about that nurse. I wrote everyone jerk uro a detailed letter after I got diagnosed. Even if they ignored it, maybe if one person stepped in their office with the same complaint they may think "maybe she has IC."

[Grams]

You're never alone, dearest. Grams has had ic for 16 years and found this cyberspace oasis of healing helps years ago. What a blessing everyone here has been! Jill is truly being used of the Lord in an amazing way, as she has created this wonderful place of comfort and encouragement, as well as incredibly valuable information. Grams is humbled at the way Jill has committed her life to finding out as much as she can about this misery. And there are many others here that have joined her in her mission, as you are discovering.
You can email Grams anytime you need to share your hurts. Tellagrams8@netscape.com. You will be on Gram's heart and in her prayers.

[fireflicker285]

Please don't feel alone. You are far from it as you can see. We all know what you are going through. Just hang in there and hope you feel better soon.

You will have good days. Don't forget that. :)

[happy lou]

Dusty i am like you i am glad that we can talk to each other on this site about how we fill and understand what we are going thru your post said it all i to get so sick of trying to educate people about this disease and trying to explain to them that you can't cetch it and also people tell me you don't look like there any thing wrong with you i say praise god keep smileing and say if you don't belive me just ask god to let you have it for one day then you understand what i go thru every day but every time we educate others we are that much closer to reaching the world about this disease so i am right with you girl . Eva

[Shirley2]

Dusty, i can feel some of your pain, and i am so very sorry this happened to you. I just want you to know you are not alone. Please email me and we can help each other. And i just want to ask you a couple of questions and don't want to ask them here on the boards. Thank you!
Hope you have a pain free day!
Shirley2

[Amyinagony]

((((((((Dusty))))))))))
OMG>>>>>I am so sorry for ALL that you have been through. My heart sincerely goes out to you, hon. Thank you for your story and about the interslim. This answers WHY my IC/MD does not and will not do these!!! I was nearly begging her to do this, thinking it would help. I didn't know that this sort of thing could happen. I am SO, SOOOO sorry for the damage that happened to you from something that was supposed to help.
Everything you said about being sick of trying to explain things (everything!) was SO right!!!
I wish you the best!!! I hope that you find something to help you soon. Like we all have said though, until then, you always have US. :grouphug: :grouphug:

[gwynnie]

YOU are NOT alone!!!!!!!!!
I had terrible experiences with the dr, nurses, friends, family etc..\
I felt no one understood at all and they may seem to say they do but they always seem to have the ? look in their faces like --'are you sure its that painful? ' or ' DO u HAVE to do soooo many times' or 'what???? bathroom AGAIN????' oh i just HATE THAT!!!!!!!!!!!! :loco:

[Dani72]

Some people on here will be your friend and then all of a sudden ABANDON you. And after they were abadoned by their family it blows my mind they would do that to someone they said they cared about so much.

[jaime15]

Danielle,
I'm not sure what you are referring too. Just remember any 'relationship' you discover over the internet isn't always certain. That is why it is imperative for you (and all patients) to work on your family life first and other things come second and so on.
I hope if you continue to have problems, you seek some form of counseling. If you are having a problem on the ICN, contact Jill immediately and she will help you any way she can. If long distance is a problem, call collect. She will accept.
Take care of yourself.
Jaime :grouphug:

[vm]

People on this message board are just a slice of people everywhere. I am sorry you felt abandoned by someone on these boards, Dani, I know that feeling and it hurts, but it isn't a reflection on these boards - it is a feature of humanity. Just like in real life we need to pick our friends carefully and not rely on any one person too much. Follow your gut when you share personal things with anyone. :kissing:

[justtiredofit]

I feel the same way. The feeling of helplessness and being misunderstood is the worst. People are quick to judge, especially if it's not happening to them. How could they possibly understand. I find it hard to discuss my illness with anyone. I've always been an over achiever. This illness leaves me with feelings of guilt and inadequacy which I'm just not used to. When I was first diagnosed in 1999, I spent lots of time of the internet searching medical sites that would explain what was going on with my body. Being married, sex is another thing altogether. It's difficult to keep telling your spouse you hurt, hurt, hurt. Although he is supportive, my own guilt feelings about this disease overwhelms me. I went to the uro today and he suggested removing my bladder as an alternative? why, when I'm on medication? Elmiron, Atarax, and. What good would that do? It's so evasive, and I'm very reluctant about any kinds of surgery now, since my symptoms heightened after surgery. So why would I even consider anymore surgery for a problem that I feel didnt exist prior to my surgeries in 1999? All I can say is keep your chin up, maybe after someone famous and noteworthy experiences this, the medical community and teaching hospitals will diligently take notice. Prayers
pain meds?

[Betsie]

I think it is so entirely possible for so many of us to experience plain frustration within the treatment confines of IC. While my own URO is a very capapble and leading Dr in the field of Urology and yes, he does know about IC (i actually interviewed him on this in 2002) he is still very one dimensional in how he views the disease. I have not switched since, for now his only reatment is elmiron and that is working well. He has also take the suggestions of a second opinion and honored them.

However, I "discuss" the emotional. painful and just daily management of this chronic ilness with my primary. It isn't what I sugest for everyone...but since my IC has become much more tolerable, I find this works quite well for me.

This can be an extremely loneley disease ~ first in the mainstream knowledge of it and truthfully, I tired long ago of trying to explain it. I simply explain if off as a "bladder disease"..this seems to satisfy people and truth be known, they aren't really interested in the vast and curious number of symptoms and how it afftects me. I have had guy friends with testicualar cancer in my past...and no, I actually wasn't interested in the "symptoms"...I was supportive of the disease.

But in terms of isolation...I have spent my entire adult life feeling very isolated in migraine management. You would be surprised at how many people still find it a bit inconvenient that I would choose to cancel something based on a "mere" headache...this has been much more debilitating for me to endure than IC.

I think we talk so much here about IC and how it is so misunderstod in the medical community...agreed, but I think at the same time, if we find this to be a truth then we also need to reserve a bit of mutual respect when dealing with the medical world....so I find that by slowly leaving a bit of my 'education" behind, I feel justified and my Drs/nurses have learned one more thing based on experience rather than text bok knowledge of this disease. This thread has gone onto many different discussions, but I am taking this opportunity to "sound off" about what "seems" to work for me.

I just checked, as I lost sight of the thread from the beginning. My point is this, it is very lonely and isolating. let's try to leave each person who cares for us with just one tidbit of this disease to ponder and also understand, it is one of many "silent" and lonely diseases. three yrs ago next week I was dxd...I have yet to meet another ICer aside from this board.

Maybe just in spurts we can be positive and advocate for ourselves...maybe trying to play the devil's advocate and assume it is part of our job to give back some of our ecxperiences will go much further than anger at the medical field....that to me is counter productive. I think it only further serves to validate to some professionals, that we are merely stressed out and this could just be a hysterical disease. Let's work with them, instead of against them. Let's show them by example, not by demanding they get it.

As for friends and family...I will go on record saying that is by far the biggest hurdle for the majority of us to conquer. I ask people now, family included..."okay, instead of understanding this" please try and just respect that it is a part of my life and It is difficult for me to give you an end date and next week's symptoms"

This is my PERSONAL insight and what works best for ME. This is not in anyway intended to minimize anyones, feelings, symptoms or even this disease itself. It just simply works best for me....the things that bring me down and leave me completely frozen are in fact not IC related.

Let's all have the best day possible. :kissing:

[Betsie]

{{{{Dusty********

I know this has been so difficult for you...thanks so much for adding on and helping me with my feelings of "we are not the only ones"....Hoping for good news for your poor knee ~ I know that right now a positive answer would be great for your feeling of well-being and that is all any of us can ask for...one step at a time. :)

[Amyinagony]

(((((((((Dusty))))))))))))
You STILL have so much on your plate....my heart and prayers are still with ya!!!! Good luck with the MRI!!! Please let us know how that goes. Please don't apologize to me for not posting right away...that is SO understandable with all that you are going through. Family DOES come first!!!! I cannot always get on here either like I like to. This message board (like someone else said) is the ONLY place I find someone else with this aweful disease, someone who can relate to all that goes with it too. This message board means SO much to me. I don't know anyone personally with it. If it wasn't for this message board, I would sure be feeling very much alone too (like I was before finding this). Please take care and wishing you the best!!!
Tons and tons of :grouphug:

I'm sorry if someone on here was hurt by someone else on here too (abandoned)....I hope I never leave that kind of impression on anyone. I pray for each and everyone of you with this disease, as I know how horrible it can be!!!!

[Betsie]

Dusty,

You can look her (happylou) up on the members list and PM her from the info. You could let her know to send it to you via email or PM. :)

[mayray518]

In Dani's case she is referring to me sunlover. We were friends and then I found out some things about her behavior that I dont personally approve of. It is her business and I tried to tell her that and she proceeded to hound me for months so I finally told her what bothered me and she basically said "Its my life and I can do what I want." I would never abandon anyone who has this disease. But when I feel that I have been "had" so to speak I do not want to continue a friendship with that particular person. I am willing to help anyone with IC.

[bunnykinb]

There have been so many times that I have cried too at the doctors. It is true that nobody truly understands what this terrible disease has done to our lives, our bodies and our sanity. Only those who are personally inflicted with IC can relate. It doesn't matter how understanding a spouse, friend etc, that person can't ever fully comprehend the agony we are going through. I hate my body. I wish it hadn't happen when I still have young kids to cater too.

I met somebody who I used to PM, but unfortunately, she was so discouraged with her IC that she rarely comes on the message boards. I truly miss having a more one on one conversation. We also discussed other personal topics which made me feel that I had an IC friend. So, if anyone needs to discuss IC or other topics to try and relieve their minds, please PM me anytime.

[Boni]

Sorry to hear you had a bad experience at the doc's office. That's the one place we want to go for help!

I have a friend who is low income with no insurance and can't get any good medical assistance for IC at all. She is stuck with free clinics for the poor and they just told her to live with it. Also recommended counselling.

Just remember "every day is a new day." Don't think disease, think condition.

[sandramac]

HUGGS TO ALL! We all support together!This stie finally gives us all a vioce ! To share laugh and cry and support each other, when we can share info.And speak or minds.Respectly Sandra.

[robbin]

i sometimes feels all alone. people say they understand but i really feel as they say this to make me feel better. i think that is wonderful, but its not the same as having someone that really has been there. i would love to chat with you when your available. this is all really new to me and i could use a friend.

[icnmgrjill]

The one place that proves that you are not alone with your IC is here on the ICN. That's why I built this website and started this company.... to help patients who were isolated just like I was! That fact that we have well over 200,000 patient visits to our site kinda proves it!

Drop into our live chats, held once a week, to talk to many other patients real time!

http://www.ic-network.com/chat/

Jill :)

[SusieQ045]

i just wanted to say well pretty much what everyone else said, there are times when i feel lonley to...but i am so grateful that i found the ic network, i actually for the first time ever feel like someone understands, if you need to talk pm me. but remember you are never alone when you come here. :)

[sanctuary]

Bunny...I know how you feel. I've was diagnosed in 1993, and I still feel at time that even people with IC don't sometimes know how awful this is. I have Hunners Ulsers form of IC....and what has been refered to as "end stage", by my doctor. She only has 3 others with the same level of advancement I have.

Even with pain meds a day is miserable at times. I have flares with no known causes and I call them "Just because"...and I assume that because all of us are so different, some may have pain severe, some no pain etc...It's harder when even people with IC don't seem to know the suffering we go through. Trust me I do know the suffering daily, with or without meds.. My life isn't the same since the diagnoses. Except to know, what it is...that's all the validation I got.

I just changed Insurance and went through hell to keep my Duragesic patches as they are, with no generics. I had to explain to the reviewer WHAT IC IS AND HOW IT FEELS!!
They didn't know because of our diet we have to avoid colorings, preservatives etc, even in medications! Some IC people don't mention this and some Md's don't get it about generics and the FDA allowance of + or - 20% of colorings, dyes, binders and preservatives, sugars etc. another words ((((junk))) in generic drugs, but I get it..Through trial and painful error I have suffered while MD's insist, "all generics are the same"..THEY ARE NOT the same..
If more people got this, we'd have less issues with our meds. and why they work for some and not for others. We are not clones in here. Even our level of disease is different...not all of us are even on pain meds...nor do the same meds work for one and all..

I'm here Bunny if you need support. I do know, I'd know how you suffer in silence and people don't "get it"...I really do. Even what is written is so general and vague, it looks benign to those who just don't know. Take care, and hugs to you. You can write to me any time.. Sanctuary