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Emmie
12-14-2004, 09:37 AM
Hi all. I have been lurking here for about a week I guess, maybe more. I am a 34 year old mother of two. I do child care in my home to make ends meet.

I just want to say, "WOW, this is a great site!". I was diagnosed with IC about a year and a half ago after an ER visit for bleeding from my bladder and having horrible pain (I bled like I was on my period but had a full hysterectomy in 1999 so knew something was wrong). The only thing I knew about it was that my doctor told me the inside of my bladder looked like a huge spider web with all the holes in it, plus the info on the stack of papers he had given me. I was put on Elmiron and Elavil at the time along with Pyridum (sp?). One Elavil knocked me out for three days, I mean I would even fall asleep during conversations three days after I took one little pill. So that one was the last I ever took. I have two children 11 and 9 yrs old and was working outside of the home so I couldn't be knocked out like that. I found the Elmiron as well as the Pyridum (sp?) really helped me a lot but due to a divorce after being married 16 years and loosing my medical insurance I now can't afford them.

I do still see my pain specialist who is treating me for my back problems. (degen disk/bulging/flattened) But I don't see a doctor for my IC. My pain specialist knows about my IC and on my next visit with him I will tell him that he must start treating me somehow to help with the IC. It seems to be only getting worse and my back meds only help for about an hour then the IC pains kick in again and I honestly feel like running and screaming when it is flared up. If I thought running and screaming would actually help trust me I would be doing it :0)

I am now starting to believe that most of my back pains are cause by the IC and not my back injury like I have believed for the past few years. Reading on this forum has opened my eyes also to the fact that I am not crazy and all these pains everywhere are real. I honestly thought I had a few different problems going on but now I know that the IC may very well be the cause of it all. I also have IBS which alone is enough to drive one mad.

I honestly don't have anyone that I can talk to about my pains and problems because nobody seems to understand so I just keep it inside and it piles up until I want to explode. This is one reason I am so glad I found this site. I actually jumped for joy when I found you all because I felt that I finally found people that understand exactly what I am dealing with. I try my hardest not to complain about my problems because my family and friends honestly can not relate and I don't want to feel like I am always complaining to them. They just simply don't understand and I know they get tired of hearing about other peoples problems when they all have their own to deal with. So again I just keep it all inside of myself.

I didn't mean to write so much on my first post and I apoligise if I went a little crazy with it. I mostly wanted to say "HELLO" and I am so happy to have found this site and look forward to getting to know you all more. BTW I am still learning how to use the forums so please bare with me.

traceann
12-14-2004, 10:13 AM
Hello Emmie! I myself just jumped into posting a few weeks ago here, so I am still pretty new myself! I am so sorry you are feeling yucky, we have all been there or are there, and can completely sympathize with you!!! I know too what it's like trying to find people you can "relate" to with this stuff. This place is great. I know, I too am an "internalizer", I keep it to myself, cause I don't want to be a bother, which frustrates me then turns to stress then makes me feel worse with the IC! ACK!

I know I will not be the only one to tell you to check out the IC Diet on this site, this I believe has helped me more than I can ever express. I was a bit daunted by it at first, I just love food, lol. :) But, I have been feeling so much better since starting it, I can't believe it. I am though, currently on elmiron (coming up on the end of my first month on it), ditropan and vistaril. Believe me, I understand med costs, as I too lost my insurance once divorced and now I scrape (my sweetie is currently helping me to cover the cost) to pay for my elmiron, but there are resources to help with the costs. There are quite a few patient assistance programs (also links on this site for them too!). So, one way or another, keep digging there ARE ways! :)

But, the diet is something you can do for yourself, and it seems to help me. And it can't hurt! The women (and men too!) here at this site always have great suggestions on what they like to eat, and what they can eat and where they find their products, it's a wealth of info, let me tell you! And you can ask ANY question here, believe me, I mean ANY. Don't be shy about asking whatever is on your mind, from foods, to sypmtoms, to sex, to whatever!!! All here are absolutely wonderful!!!!!!!

Well, I rambled a bit, sorry about that! ;) Take care of yourself, keep us posted, and hope to "see" you around!!

Hugs and Warm fuzzies,
Tracey :)

SharonA
12-14-2004, 10:33 AM
:welcome: Emmie...

No need to apologize for opening up here. This is a safe place to unload, unwind and let it all out. We all are or have been where you are right now. I am so sorry you are having such a tough time right now. I am so glad you found us and decided to post. Many of us felt very alone when we were first diagnosed with IC or even when we first started to research what might be causing our symptoms. Then we came here and found out there are others out there who know exactly what we are going through. I don't have to try to explain myself...they already understand!!!!!!

Have you spent any time reading the information available on this site? Go to: www.ic-network.com/handbook (http://) There is a wealth of info there. You can also find the IC Diet there. You have probably already read that many people have found relief just finding out what foods and drinks might trigger a flare. I do suggest you try it...and it doesn't take a doctor's appointment to do it.

I hope you begin to feel better very soon...

:)

mick
12-14-2004, 11:53 AM
Emmie,

Glad you were able to find the IC sight. I also tend to hold things inside regarding the pain of my IC because I don't know anyone that can relate to this type of pain. Glad to see you able to let it all out in the first posting today. I hope now you don't feel as isolated.

Good luck,

mick

Rita_Lorraine
12-14-2004, 12:30 PM
HI and welcome! I too cannot take Elavil...all i wanted to do while taking it was cry and sleep!!! It was awful! I'm glad u found us! Elmiron, Detrol LA, and Ultram has been a GOD send to me..I was diagnosed about a year and a half ago and went through alot pain but am now in remission with occational flare ups from eating the bad foods that are not IC friendly. I hope this site helps you as much as it has helped me. The support here is fabulous! Again..welcome!

ICNDonna
12-14-2004, 01:25 PM
I'd like to add another :welcome: to the IC Network family. You'll find a lot of support and information here.

I do think it's important to have a urologist to oversee your IC treatments. And you can talk to the uro about getting Elmiron through the company --- they have a program that provides the medication to people who could not otherwise afford it. It's definitely worth a try.

I hope you find some relief soon.

Warm hugs,
Donna

Emmie
12-19-2004, 08:53 PM
Thank you so much for the great welcome and all the info. The people here seem so very friendly and helpful. I will definately read the 'diet' section of the forum. I really need to try to figure out what is triggering my attacks. Sometimes I feel like they are making me insane. This one I have been having lately has seemed to start to calm down some and I am so happy about that.

Sorry it took me so long to reply. I have been so busy with the holidays and am not able to spend much time on the pc.

Emmie
12-19-2004, 08:58 PM
Hi Mick, it is very nice to meet you. Thank you for your warm welcome. I am very much enjoying the message boar and so very pleased to have found it. I am however still trying to get used to the format of it.

Emmie
12-19-2004, 09:00 PM
Hi Sharon, thank you for the wonderful welcome :) I am starting to feel a bit better and still enjoying searching the site. I have been so busy with the holidays and not able to spend the time reading here that I would like to but hope that real soon I will be able to.

Emmie
12-19-2004, 09:05 PM
HI it is very nice to meet you :) Sorry to hear you aren't able to take the Elavil either.
Thank you for the great welcome and I look forward to getting to know you all more. I have been so busy getting ready for the holidays that I just have not had the time I would like to be here reading. Hopefully real soon.

Emmie
12-19-2004, 09:08 PM
Hi Donna, Thank you for the great welcome :) and the information. Everyone here seems so very friendly and willing to help with any info I may need. I just regret I have not had the time to be here reading as much as I would like. The kids are already on their holiday from school and getting ready for Christmas has been so stressful in itself. It has been very nice meeting everyone and I know I will enjoy this forum very much.

vm
12-20-2004, 02:04 AM
Just wanted to add a warm :welcome: So glad you found us!!! :) :) :) :)

VickiB
12-20-2004, 11:19 AM
Hi Emmie,

I just wanted to add another welcome along with the others! I felt that same sense of relief to find all these wonderful people who understood what I was dealing with. This site and it's members have helped me with the information I needed to get off the pain merry-go-round I had been on. The diet made an extreme difference for me.

Please do check out the links to help with drug costs. I would think your doctor should also have this information available. No one should have to live in pain!

Wishing you better days ahead,

Vicki

Katrina
12-20-2004, 05:43 PM
:hi:Emmie :welcome: to the ICN!
I had a hysterectomy, I have IBS, and have IC...and yes my IBS could drive me mad!
http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies
I am glad your pain doc knows about IC...hopefully that will help a lot. Let us know if we can help you with anything! :grouphug: