From an "Oldie" to the "Newbies"

[SharonA]

This is to all the Newbies...:welcome: to the ICN. I am so very glad you have found your way here and have decided to introduce yourselves. :)

I am so sorry you are feeling so poorly right now. I can completely understand. It was constant, unrelenting pain that sent me screaming to a Urologist in August of 2001. After I was diagnosed, I had the same questions and concerns that you have right now. I thought that my life was over and that I would never feel good, again. With time, my doctors and these boards, I have learned what meds/treatments help me. I can now say that I live a pretty normal life despite having IC. I no longer have unrelenting pain...just an occasional flare, which I have learned how to control.

Please take the time to read and learn what you can about IC from your doctors, from the books that are recommended here and from those of us who have already been where you find yourselves at this time. It can also be comforting to read the posts from those who, like you, are just starting out on their discoveries. Get to know each other so you can compare notes and help one another.

Give the IC Diet and your meds/treatments time to work. Don't give up on trying to help yourselves. You are all very important members of your own health care teams. Talk openly and honestly with your doctors. Let them know that you are engaged, informed and willing to work with them so you will begin to feel better.

Most of all, I want you to know that there is hope and there is life to be had...even with IC.

:) :) :)

[Babs RN]

I wanted to add my welcome too and say that some of things that are posted on here may scare you--please realize this is a very individualized disease and what happens to one or some of us may never happen to you. Look in the signature blocks on the ends of the posts as well for Newbie angels. These are people who have specifically volunteered to be a listening post either on or off the boards for those who are recently diagnosed. As Sharon said, be an integral part of your health care team. Stay informed, be compliant and honest with your provider team. Be open to new ideas and alternatives that are presented. Most of all, take care of you. You are the only you this world has.

Hugs and :welcome: ,
Barb:hi:

[creatingkarma]

I would like to say welcome also. :welcome: I can still remember when I first found the ICN. I was very frightened by what I read in the patient handbook & on these boards. Although I had been diagnosed with IC for a few years before I came here, it was still very overwhelming for me to read about it. Now I don't know how I ever made it with IC before I found the ICN! There is such a wealth of information here! I have learned over the years that you have to be the one to take charge of IC! Educate yourself on the disease, the treatments, their side effects, how it affects your overall health, sister diseases, everything! You have to be your own advocate when it comes to your health! If one treatment isn't working, then by all means, try another & don't give up! There is always hope & it's very important to never forget that! Best of luck to all of you!

[mom_in_ma]

Sharon, posting this note was a great idea! I don't know what I would have done without the IC Network when I was first diagnosed. It was my godsend. I learned as much as I could and eventually found the treatments that help me life a normal life. (Knocking on wood as I say that, don't want to jinx myself!)

[Betsie]

Sharon!

I just at this very moment went and grabbed my computer. After a grueling day of PT and mobility exercises for a totally unrelated condition, I was thinking about my IC journey and those just facing it and the uncertainty.

I thought, why not let newbies know how many of us do actually get past that initial and very difficult period of thinking life will never be the same.

Then I read this, first post I see! LOL....makes it easy for me to "add my 2 cents".

I was dxd 8 weeks after onset. it is hard to remember I couldn't even make it to the school to pick up my daughter, and how I circled the island in the kitchen ponly to head right back to the bathroom. I remember describing myself as a human percolator, as the firey burn from my bladder and urethra reminded me only of a coffee pot on the stove! I remember cancelling everything in my life and not even caring. My couch was my best friend and my relationships took a backseat as I was too drained to explain it all. :rolleyes:

By the time I found the ICN, I had been actively treating my IC for 18 months and was very much in the visible result zone. The pain was still pretty horrid and I had given into life this way. BUT, I was so sick of IC, so I began to travel, worrying less about the "what ifs" and assuming I could figure things out as they occured. Being a GI patient, I basically was already watching my diet, so I didn't complicate it with another.

I discovered tankinis vs. one piece bathing suits, that made life much easier when near beaches or pools. :lmao:

Now it is 2006 and my journey began in 2002. I am soooooooooooooo much better. I hardly consider my IC at all anymore, though I am on a lower dose of Elmiron (not that brave). My pain now comes from something else, but here and there a menstrual flare will remind me with a bit of heightened frequency. I have pain meds if needed, but I can't remember when it was for my IC.

In essence, my point is I am 99.9% better. I tell you this because when I first faced this, my despair and pain, etc was off the charts. No one could ever have convinced me I could reach this point. I realize many here struggle so much each and every day, but I think it is so important to know that many of us do get better, much better. I hope that reading this thread will help anyone feeling really down and out! I remember that all too well, and it is a sucky place to be. I am so happy to report that many of us have found our way to better times and lives that feel familiar and safe.:)

It's been a long time since I tuned into newbies, interesting that Sharon was already on it! :smile tee But I know everyone needs to feel hopeful, so I hope Sharon's thread will continue with lots of good feedback and some of you will feel that hope you so desperately seek. Be well, focus on your treatment plan, but more importantly...focus on your lives! Without that, IC is irrelevant.

[traceann]

Count me in on the Welcome Wagon!! I have no idea what life would be like for me right now had I not found this place. I most likely would still be looking for a diagnosis, not have a clue about treatments, self-help remedies or just the day-to-day living with it. My quality of life is fabulous - and mostly thanks to this site and the wonderful people I have met and made friends with!!! I live in a very rural area, where I just met my first ICer ever in my area! And it was on accident, lol. So, this network has been invaluable to me, and I hope that we can pass along what we have learned to you, the newbies!!

Hugs!
:)