Just need a Cyberhug

[cybersis]

It's 4 am my time and I was diagnosed yesterday with IC. Thought it would be a relief but am sitting here crying my eyes out. I have suspected this for months but really did not want to belief it. Started on Elmiron last night and woke up with a *** of a headache. I hate this more then I can say. Want to just scream, enough already. Have IBS and deal with that, had migraines and dealt with that(through exercise and diet - symptom free for two years ), had thryoid and dealt with that (one pill daily). I hate taking pills, hate the side effects, just plain hate my body right now. Sorry about the pity party, but its so hard to explain to people when they look at you and think she looks alright, nothing wrong with her. My Uro is a cold fish, man of few words and no explanations. Here in Canada it is very hard to even get a doctor let alone a uro! How do others cope?

[Katrina]

(((((((((((((((((((huge cyber hug))))))))))))))) From my experience we as you are...searching for info and support from others who are dealing with the same things.
:grouphug::grouphug: When I was first diagnosed I so hated the huge ammount of meds I was now on....but the side effects went down and the help went up. I have been frustrated with that "you look good, you must be ok" theory in everyone's head way to many times. Caring about what others thought started to take more energy than it was worth and still did what was best for me. If that meant sitting when others got up to get stuff....going to the bathroom multiple times, eating only what fit my diet, sitting on pillows, it didn't make a difference if other thought I should be working or just not complaining I did what was best for me.

So if that means having a pitty party sometimes than I say, yahoo! You did it and you did what was best for you...good job!!!!! Doing so here means we understand and praise you for doing what is best for you!!

:grouphug:

[ICNDonna]

:grouphug:

I know it's a tough pill to swallow, but at least now you know. Are you following an IC diet? That one step can help so very much.

If you think elmiron is giving you the headache, you might try dumping the capsule into water and drinking it. Some people find the capsule itself is the problem.

However, it sounds like you may have a stress headache --- do you have anything to take for pain? That may be one way to beat the headache.

Sending warm cyber hugs,
Donna

[kelly McC]

sending a warm welcome,
When I first diagnosed I was told I looked good too. I had a hard time with all the meds. I have adjusted now and know its helping me. Sending huggs
Kelly

[ICLori]

(((HUGS))) It's really hard when you are first diagnosed, before you get treatment that will give you relief.

Donna's suggestion is a great one. Are you taking Elavil, as well as the Elmiron, or any other type of med that helps with pain? If you aren't, shame on your doctor.

Some people also find relief from many IC symptoms with Atarax, Benadryl and/or Singulair, Zyrtec, or Allegra. Many studies have pointed to a connection between IC and allergic reactions/mast cells.

Following the IC diet and using heat when you are hurting are two things you can do that can help.

Please hold on. Your miracle will come - I don't know when, but eventually you will find the right meds that don't have bad side effects, that give you relief, and you will feel better.

The Elmiron didn't give me headaches, but diarrhea, when I first started. But over time (a few weeks) my body seemed to adjust to the medicine and I didn't have any bad side effects anymore. So I'm a firm believer in giving your body some time to adjust to a medication before you give up on it.

I hope you feel better soon - I know what you are going through is so hard.

Blessings, Lori

[dyno]

:grouphug: I am hoping today is a better day.

[Sarojini]

I think the time before diagnosis, when you're wondering, and then just afterwards, when the anesthesia wears off, and you suddenly realized you indeed DO have IC are the worst. So I'm sending a big cyber :grouphug: to help get you through this time!!

At this time, I'm sure you're going through a lot of the emotions I did when I was diagnosed -- anger, sadness, disbelief -- it was a sort of mourning period, as if I was mourning my old life.

But I am here to tell you that it passes. You will learn what triggers your IC and what's okay. You will learn what meds help it and which do not. You will do a lot of reading and find yourself well armed with information, and you will feel strong because of that. You WILL feel better, though it may take some time. You will learn to love your new life as much as the old one you've left behind... one day, when it's quiet and you're walking along feeling calm, you'll realize you haven't thought about your bladder in a few hours, and you'll rejoice in that and also laugh because you know the rest of the world couldn't even imagine joy in such a simple thing!! :D

You WILL feel better, and until then, be good to yourself. Rest, relax, take care of you. Take time to read books and watch the leaves change. Come here and post and talk to us, because we've all been right where you are. We know how hard it is, but we also know you will get through it. You're a wonderful, strong woman...and not even IC can stop you!!! :)

[cybersis]

Thanks so much for all those of you that replied. You are right I do feel a sense of loss for my old life. One that didn't involve 30 trips to the washroom a day and constant nagging pain in my lower pelvic region. I am scared that the Elmiron will make me lose my hair and have the runs ( as if I don't see the bathroom enough now!) I am scared I will never have a normal life and that I won't find someone to love me. Who would want to have a relationship with a women in this condition? In my rational mind I know that over time I will find a way to life a good live with this but my irrational mind seems to be running a muck today. One day at a time.

[PenguinK]

:grouphug: :angel:
I am actually sitting here crying for you. I am not "officially" diagnosed yet due to 2 more tests needed, but the doctors put me on the drugs already due to the severity of my pain & other symptoms.
You are not alone. I cry constantly and no one understands that this is a chronic disease we are dealing with. All I hear at work is "so how long do you have to be on the meds?" or "why don't you just stay home? I would!" They don't get it. :headbang:
Good luck with your Uro. I found a Urogynecologist through my regular Gyn and I love the whole group! :kissing: They've been great! Check into one in your area.

Good luck and God Bless.
KK

[Dixiefireball]

here is your hugs you ask for :grouphug: :grouphug: :grouphug: :grouphug:
I know thats not much but we do care :) I do hope you feel better soon please keep us updated
sending you many cyberhugs and prayers
Rhonda

[JenG]

((((((((HUGS))))))))
I feel for you and your frustrations. I was diagnosed three months ago and felt exactly the same way. I want you to hang in there and give the meds a chance. The Elmiron gave me bad headaches for the first week I was on them and then the headaches went away and I have no more side effects. I take four different meds a day and before this I was on zero meds! It was hard to adjust to but once I did I am sooo thankful for them. :pray:
The Elavil and the Atarax really help me to sleep through most of the night. I am not up every hour in the bathroom, and sleep really helps you make it through the next day.
Good luck and remember you are not alone! :grouphug:
Jenny

[ibtracy]

:welcome: to the ICN. Here's the cyber hug you asked for :grouphug: I'm sorry you're going through such a rough time, alot of us have been right where you are now and can remember and relate. Like others haves said, take care of you and only you can know how much you can handle or what you are capable of doing. Keep food diaries so you learn your trigger foods. Keep loved ones around for support and remember us here on the ICN we're hear to help and listen. I highly recommend the IC Survival Guide book which you can purchase in the ICN Shop. It really helps to define, break down and explain procedures you may endure or have endured as well as info about bladder treatments and latest medications. It's a must for anyone with IC, I feel! I refer to it alot, and I was diagnosed in March of this year.

If you get nothing else from this reply, remember this, Take things one day at a time and tomorrow is a new day with a chance to start fresh. Take it easy and take things in stride. :angel: Sending you a Cyber Angel to watch over you during this difficult time and remember we're all here if you need someone, okay?

Tracy K.

[SharonA]

Here comes a very long and gentle {{{{{HUG********** your way. I hope you begin to feel better very soon. You can make it. One thing I have learned...there IS life with IC. :kissing:

[sylvieCT]

I completely relate to much of what you are saying. No one can see the pressure, the endless urgency and frequency and it is hard for people to have empathy. I have heard, a million times, when I am in a flare - what - did you forget to take your medications...as if the medication is a cure. That is why support like this is so great. I worried a lot about my hair falling out too - but, it didn't. Hang in there. Much support to you!

[newsusy]

Hey Everyone....I came on line to see if my sister was on MSN, and thought I'd do a little research on her disease myself. Needless to say...I came upon this post from her, Cybersis, and I am so very sad.
She is the most giving, warm-hearted person I know with a great sense of humour, and yes, she doesn't look ill at all, she looks beautiful. We often wonder why our loved ones must endure such pain in their lives.....it's just not right. I just want to let her know that although it is difficult for me to understand exactly what she is going through, that I am and will always be there for her.
:kiss:

[ICNJess]

First NewSusy--

It is so nice to see a family member on here who really cares and wants to know what is going on with their loved one. Now, more than ever, your sister is really going to need your support. Sometimes family members back away (though I am sure this will not be the case with you) from lack of understanding, and alienate the person who is ill. For example, my father is one of the sweetest, kindest men you will ever meet, and I know he loves me dearly, but he could not understand my limitations as an ICer. Up until about 5-6 years ago, I was a healthy, active, vibrant young lady. (I am 22) I was happy, always on the go, never could sit still, worked 2 jobs.

When IC struck, I couldn't get a diagnosis until I was 20. I became inactive, could no longer work, and threw all ideas of college out the window. My father couldn't understand why. After I was diagnosed, he read the literature on IC...but still couldn't understand. It's an invisible disease, and there just isn't enough exposure of IC out there. It took him a long while to really undersatnd--and until he did, we would get into fights that would bring me to tears. Even my husband couldn't understand for the longest time, but he does now.

Your presence speaks volumes about your love for your sister. I am sure you will be there for her through thick and thin. I am very glad to meet you, sorry to have bored you with my sob story :biglaugh: but it is just so great to see a caring sibling aboard!!!


Now, a lengthy post for Cybersis,

I tried to deny diagnosis for quite awhile. My uro brought it up to me in August of 2002...I said "Nope, not me, no way!" and didn't return until my symptoms got sooo much worse in December. I was diagnosed then in February of 2003. I was so depressed for months on end, and I missed my old life dearly. I'd like to say that I have gone back to my old ways since treatment began, but I cannot. My friends have left me, and all I have is my family, husband, and a couple very good friends. I sat down, and did a lot of thinking, and realized that that's all I needed.

JulieB has something on her tagline...something like "When the rest of the world walks out, a true friend walks in" (I just butchered her tag line...sorry, Julie!) And that is so true!! I know it's hard, but try not to dwell on all that used to be. You have your future ahead of you--treatments that might send you smack dab into remission! Maybe you'll be able to do the same things you once always did. I know that with my treatments, I can at least sit in a car longer than 15 minutes...and that helps, since we do a lot of traveling to visit relatives.

Sorry to ramble on...I have been where you are now, and I so completely understand.

Hugs to Cybersis and her sis!!!
Jess

[trytosmile]

Cybersis...

First of all :grouphug: . Know completely what you are going through, we are all here for you, remember that.

Now I'm from Canada too, Southwestern, Ontario. I have an excellent urologist currently. I've been to three in total and all I would highly recommend.

If you don't mind me asking where in Canada are you from. Maybe same area, or close and I can give you some information.

Jen

[cybersis]

Here it is Monday morning after a long IC night. Darn Pickled Beets! and I open up my e mail and find that my wonderful sister has been on line to do research about my IC and not only that she has found a post from one of my lowest points and answered it. Sometimes someone comes along and gives you a boost at exactly the time you need it. I now feel truly blessed to have such a loving family. She to is funny, smart, and beautiful and obviously caring. Gee just when I was about to start another pity party along she comes to pull me up!

I am from Peterborough, about 50 minutes from Toronto for the person that asked ( sorry through the tears of joy from my sisters post I didn't read your name properly)

Today will now be a good day no matter what.

[trytosmile]

cybersis....

Here are some uro names for you. A bit of the distance to drive but if you are not happy with your current once maybe worth the drive. I drove 8 hours to see the one, just to talk to him.

Dr. Nickles (can't remember his first name) He is from Kingston, Ontario. Maybe the closest to you. Works out of Kingston General Hospital. My current uro told me he is likely the best in Canada. He has been granted $8 million to study prostrate and bladder conditions. $2 specifically for IC

Dr. Gerald Brock, St Joseph Hospital, London, Ontario. He is the first uro I went to and the uro that gave me my diagnoses. Excellent uro.

Dr. Patrick Luke, University Hospital, London, Ontario. This is my current uro, why I went to him from Gerald Brock was for a second opinion. He is great, works with you. Very understanding of your needs and very supportive of your feelings.

The two in London are a bit of a drive for you. Dr. Nickles, I really wasn't that long getting into him. I would highly recommend any of them.

Nice to know you have such a supportive group around you. Makes the world a better place when you are down.

[cybersis]

Thanks so much for these names of new Uro's to try. I have just come back from my 8 week checkup with my current Uro and was told that the only medication for IC was Elmiron. When I mentioned anti-depressants or anti-histamines told me they were not effective for ic. He did give me a prescription for Ditropan (?) and then told me to start retraining my bladder and hold my urine for longer periods of time. I think my look of disbelief caught him of guard. Hold my urine? Pain Pain Pain. Sigh.

[sweetpea2555]

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:


Sending you lots of hugs!!!!! I think it's great you have someone in your family who understands. Sometimes people don't realise IC is a real illness and it can be disabling. It's good to know there are people who understand. Hope you feel better soon!

[trytosmile]

See if you can get into one of them. I'd be getting a second opinion. There is so much more than Elmiron. Ask me, I've tried them all. I'm not able to take Elmiron and I'm currently on Hydroxidine. Helps a bit but not as effective as I'd hoped. I have a low tolerance to medications so have to take minimum doseages therefore making it less effective.

Keep my posted. Hope you find somebody you like soon ! That is half the battle.

[ICLori]

Sending cyberhugs your way! Hope you feel better very soon!

Blessings, Lori

[Sharing]

Hi i am from your area would love to know who your Dr.'s are Please i need a good one-



Thanks

[JMichele]

I've had IC for a couple of years and can totally relate to how you are feeling. It is frustrating and you feel sometimes that you're going to lose your mind and never be "normal" again. When I feel like that I come on here and research and read; before I found this site it was really frustrating because not many people understand chronic illnesses and unless you're going through it, it's hard to describe. I hope, as you learn more about IC and how your body reacts to all the meds. you will become more mentally okay too. Elmiron made me feel sick at first. I started experimenting with it, taking it at different times during the day. I can't take it and then sleep or I get a headache too...so I don't take it before bed. I hope your days have gotten better. It is a lot to take in. This website helps. I am overwhelmed at how nice everyone on here is.