View Full Version : Just Diagnosed in April
05-22-2004, 07:16 PM
After almost 10 years of pain and going from doctor to specialist to shrinks and therapy and having to go through detox for getting hooked on Daludid and Oxycontin, I finally found a doctor who nailed down my problem. I am getting help and feeling a bit better. I was so hopeless and I was so tired of all the stupid antidepressents that I was on (6 different kinds at once) I had gained almost 60 pounds and was even more depressed.
Now I take Detrol LA, which to me does nothing, and Elmiron, which seem to help some, and I have weekly bladder instillations each Monday, which burn like fire the day I have them but them allow me three good days a week and then I can tell I need another one. I have had 4 so far and have 5 more to go before they wil tell if it is worth the effort.
My life really stinks these days. I don't feel like doing anything. I can only work about 3 days a week and my company is getting a bit tired of me. I have been at Philip Morris for 26 years and am 4 years from retirement and only want to make it out the door with my pension and not get fired for missing time.
My family puts up with a lot, too. I never want to go anywhere, I stay exhausted and my sex life has been over for a year or more. I am only 43 and I don't know how my husband will handle much more of this, but the pain during sex just got to be so bad that I began to have anxiety attacks when I felt like I had to do it and then I started drinking to kind of knock the edge off and ended up losing control of that situation, too. I have been off alcohol for nearly a year now, but like I said, I have no sex life at all.
I keep praying though, it's the only thing that keeps me going each day. That and the 2mg of Xanax that I pop each night so I can sleep through the night without peeing a hundred times.
So, that's my sad story. But sad as it may seem, I have seen so many people so much worse off than I am and that makes me both depressed for them but feeling blessed because I'm not as bad as them. They have my prayers as do all of you out there. Let's just all hang in here together and maybe we can get each other through another day.
Thanks for reading this. God bless you.:pray:
05-23-2004, 03:30 AM
I'm sorry to hear you have been in so much pain... I hope your treatments work for you and your quality of life improves.
The ICN is a great resource for information and support... :welcome:
05-23-2004, 03:38 AM
If the detrol isn't working for you, there are several other antispasmodics you might try. Elmiron can take up to six months or more to be effective, so if it's helping already, you may be one who is really successful on it.
Is it possible to take a leave of absence for a few weeks to give yourself some time to heal?
Sending warm hugs,
05-23-2004, 04:00 AM
I am sorry that you aren't feeling so well. I agree with Donna on the meds. If Detrol isn't working for you, maybe try something else. I do hope that relief comes your way soon. :grouphug: :kiss:
05-23-2004, 04:48 AM
i agree with donna and the others here if you can take some time off of work so you can give you time to rest and let the medicine work i'm glad that the elimron is already making a diff. for you.
:) the treatments has also helped my bladder so dont give up on them just yet.
i'm glad they help you have a few good days out of the week
i'm sorry they took so long to find out what was wrong with you but we are here for you and we do care for you.
sending you hugs and prayers
05-23-2004, 06:20 PM
I am so sorry you have suffered so much without even knowing what you really had. Angers me when I hear stories like yours. So sorry. I understand the need to be thankful for the few good days we get. Having those are so important. :welcome: to this family....ICN is a great place for information and support.
I would like to encourage you to look at http://www.ic-network.com/handbook/
I hope you find a lot success with your treatment.
05-23-2004, 08:08 PM
You have definetly been down that winding road. I'm sorry to have heard of what you've gone through and of course still are.
When you said about the local mental hospital it brought back memories of my visit. God you are so right, It's was such a scary place and deep down I knew I did not belong. Thank God I could have gone as I pleased, so after two terrifying days my wonderful husband came and picked me up. Yet I found so much has changed in my life, since than. My mind has days that it just would rather shut down and sleep instead of be awake and think.
Yet as we all know that can't work, especially when you have responsibilities that need tending to.
I have three teenage daughters, I'm 43 and just re-entered the work force after being at home with the family. Savings? What savings, having lived on one pay cheque puts so much strain on everything. So when I decided to re-enter the work force, BINGO I was diagonsed with I.C. Dec. 2002. I took about a year off under medical consent to try to get better.
I like you took very strong meds for about 8 months and found that they personally fried my brain. The depression set in just shortly after I was diagonsed and can't seem to shake it. That why last July 2nd I cried so much that they shipped me off to the mental institution for a 2 day rest. That's really funny. Just as you saw and witnessed these horrible images will be with us forever.
Well right now I'm basically trying to go on, because I to have had days where I wonder why bother getting up. But than I think of my daughters and husband and several cats, and I know I have to find the strength to go on. Who knows maybe our Guardian Angels try to hold us up even for a few hours.
Wishing you all my best.
05-24-2004, 06:52 AM
Thanks so much to all of you who have replied to my post. You can not believe how much support I am getting from this websight. It has been like a gift from God.
I just got back today from my 5th bladder instillation. I am afraid to go pee because that is usually when the burning and pain sets in, but I can't hold it forever. Tonight I have to go to my daughter's last concert at school. She is graduating on the 11th and has been in chorus/dance since she was back in the 9th grade. It's really important for me to be there and I want to be there for her 100%. I didn't want to have this treatment done today, but I had to work it into my schedule so I wouldn't miss another day from work after today. I am hoping that I will be so caught up in the moment that I will almost forget the pain.
I asked the doctor about some kind of pain medication, but all he would prescribe was the normal blue pee pee Uristat stuff and we all know they are really a waste of time and and cause for a new pair of underpants to boot, unless you are partial to blue cotton linings. ;)
I really shouldn't even complain at all because I am so blessed compared to so many of you out there. Like the wonderful ICNDONNA told me, maybe I will be one of the lucky ones that Elmiron will acutally work for since I can tell a difference in only 5 weeks. She told me that it can take up to 6 months or longer to notice and I noticed almost immediately a change for the good. God has always been a good friend to me. He even forgives all my whining, which I have just about mastered, but continue to get better at all the same.
So anyway, thanks to all of you for all your thoughts, prayers, stories and kind words. I just can't say enough about how this websight has changed my life. I wish I knew who started it, I would love to give them a big cyber hug and tell them that they have really made a huge impact on my life. I will keep coming back and if I am one of the lucky ones that goes into remission, then I will still be here to encourage all the rest of the ones who need it. Even if I'm not one of the lucky ones who has a full recovery I want everyone to know that support makes all the difference in the way you think and how much quality you can get out of life.
You all mean the world to me. God bless you.:angel:
05-24-2004, 07:08 AM
...More hugs and prayers coming your way! God Bless :pray: :angel: :kiss:
05-24-2004, 05:42 PM
Jill Osborne started this web site after she was diagnosed with IC. She is a warm, caring person, who has dedicated her life to the IC movement.
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