View Full Version : newbie to IC
09-22-2004, 04:17 AM
I have just been diagnosed with IC. I have a pretty severe case they tell me. I live a very active life and they have figured I have had it most of my life as I have always had problems with foods and bladder infections and UTI's. I am having so much stress with people at work not understanding this disease. I dont speak of it at work of course, but I have a 1-1/2 hour commute to work a day and dont sleep at night. I get up at 4:15 but dont sleep more than a couple hours. Needless to say, I am a wreck trying to keep my job. I go in for a hysterectomy next month which they say might help. Family is great, friends dont understand and/or care. I am at my wits end as to how to handle all of this. I have been a single mom for 16 years and pride myself on my independance. THis diseases has really taken its toll. Any help would be appreciated from those who actually understand.
09-22-2004, 04:32 AM
I understand. I have had I.C. for 38 years. Stress can be a real trigger for me, so I try deep breathing/ aroma therapy with lavendar. That may hellp you with your commute. People don't understand I.C...I have been on Elmiron for 3 months and doing twice weekly bladder instillments..the results I have seen from the in bladder treatments are very encouraging! At last I almost feel normal, and that is the greatest thing that has ever happened to me! When I told my dad how great my night was after the first in bladder treatment, he told me " That's good honey" "You just need to get out of that bad habbit"
09-22-2004, 05:50 AM
09-22-2004, 05:54 AM
:welcome: to the IC Network. You'll find a lot of helpful information here. I suggest you begin by reading the information in the Patient Handbook at http://www.ic-network.com/handbook There's information there about the various treatments available. If you aren't already, you'll want to put yourself on an IC diet --- many ICers find that single step does a great deal to control symptoms.
It sounds like you have a horrible commute --- are you driving to and from work? If so, you might find the cushion available at http://www.ic-network.com/shop to be a help. I have one at my computer and another in the car.
Sending warm healing thoughts,
09-22-2004, 06:04 AM
:welcome: to the ICN! You've already received some good advice. I'd like to second Donna's recommendation of the IC cushion -- I have one in my car and it really does help with driving. I used to have a 20 minute commute to work, and that was hard enough... I cannot even imagine having to go an hour and a half every day!
Currently, I'm not working. I quit my job, as it was a toxic environment and continually stressed me out and made my IC much much worse. I am lucky enough to be able to take several months off to focus on getting better before I begin another job search. Anyway, I understand the difficulties one runs into at work with IC, and know how hard it is for your colleagues to understand. :grouphug:
I'm glad you found us here though. You will get a lot of support and love from those who know exactly what you are going through. I know these boards have been a lifesaver for me at times, both before and after my diagnosis.
good luck, and again, welcome!! :grouphug:
09-22-2004, 06:21 AM
:hi: and :welcome: to the ICN family please check out the website donna gave you above www.ic-network.com/handbook i found it to be a life saver in many ways please keep us up to date on how you are remember we do understand and care.
sending you hugs and prayers
09-22-2004, 10:08 AM
:hi: Lizzi and :welcome: Oh my goodness...that is one long commute.
Try not to let how other people may or may not understand IC get to you. I know that is easy for me to say since I am not in your situation. I just know that stress is a major trigger for me. I have had to learn to pay no attention to whether or not anyone "gets it".
I have chronic insomnia and use a sleep inducing med. Before my doctor prescribled this, I would be awake until the wee hours of the night until I fell asleep for maybe 3 to 4 hours. It was tearing me apart and affecting every aspect of my life. I was unable to function during the day because of sleep depravation. Heaven help anyone if they crossed me. I was a tyrant.
I am so sorry that you have IC but you have found a great place to connect with other people who understand what you are going through. I am glad you found your way here. :)
09-22-2004, 11:00 AM
Sharon and all,
Thank you so much for making me feel less like the leper I have been feeling like. I dont sleep much as it is and this is killing me. Luckily I dont need much sleep. It is so amazing how all my life people have made fun of me because I am such a picky eater. I have always eaten pizza with no sauce and can not eat spagetti. I have had all the laporscopy surgerys and the bladdar infections and the endimetriosis etc.... since I was little. Thank God I finally found what is wrong. Now the devastation sets in as to how to handle all of this and keep my job and my boyfriend and my friends and not whine etc... LOLOLOL you know what I mean. Can anyone tell me is excerise helps. I use to be so active now I cant move half the time and the other half I force myself to do the simplest of things. Any words of advice would be appreciated. I was diagnosed 6 weeks ago but up till now I was in total denial and would not discuss any of this. My mom is freaking out and does all the research and I just didnt want to hear any of it. Now it is time for me to take control back.
Thanks again to all.
09-22-2004, 11:36 AM
I have only had a diagnosis since last week, and I was just the opposite. I wanted to tell everyone that it wasn't all just in my head!!! There really was pain and I wasn't making it up. I've only posted a few times, but I have already gotten so much support from these boards. It is nice to know that someone understands and is willing to talk about the "unmentionables."
I don't have any advice, yet, because I am a newbie. I just wanted to say welcome and that you're not alone in this!
Hi and wanted to add my welcome to you, I know it must be hard for you, having to drive that long daily, and my heart goes out to you. The gals have given you some great advice in their posts, and we all are with you, as we all have suffered the ramifications of IC. You asked about exercise, the one I can do, and not suffer is tai chi, I like the slow movements and there is no pressure for me. I do have an IC yoga tape, but have not done that yet, as I pulled a muscle, and did not want to aggrevate it. You will find lots of support and caring gals, and our few guys here on the boards. It is a great place to be and find comfort and help whenever needed. Keep us posted as to how you are doing, welcome hugs Iris. :hi: :grouphug: :flower:
09-22-2004, 12:23 PM
Hi Lizzib16, I've been recently diagnosed with IC too (in July). I think it's so very normal to have an initial time after diagnosis where you are shocked and almost in a fog, just not believing this is happening. Then you have times where you're thinking "ok, I'll just deal with this." I know I still waffle in and out of both feelings. One day you feel strong and the next you may feel in the bottom of the pit emotionally.
After researching a whole bunch of IC sites, I am encouraged. There are so many treatment options. Thank goodness if we have to have this, we've gotten it in a day that there are lots of treatment options!
Although no one treatment works for everybody, it looks like to me that most people with IC are helped moderately to significantly through one treatment or another.
My doctor started me on Elmiron and Atarax about 1 1/2 months ago. If they don't help me, I'll start on the DMSO treatments. A friend of a friend was helped wonderfully by Elmiron and one of my mom's friends says the DMSO treatments are great for her. (She only has to get them now every 6 months or so.) My urologist says that about 85% of his patients respond well to the DMSO treatments. (I just wanted to try the Elmiron first since it less envasive.)
Well, just wanted to send a little encouragement. Yes, IC is something we don't want. But, there ARE options and just about everyone can be helped.
Just a thought too....don't know if you're a praying person but I have found that for me, my belief in God and prayers to him have sincerely brought me peace and comfort in my darkest times. Let us all know how you're doing.
09-22-2004, 01:08 PM
Hi Lizzib16, and welcome!
That's great that you have the support of your family. There will always be friends or co-workers who don't understand or care, and that's so hard to deal with, but many of us just have to find a way to let that go. It's nothing we're likely to change, so there's no point stressing over it. I know, easier said than done!
As for exercise, my routines are very much affected by how I'm feeling at the time. When my bladder's throwing a fit, even my evening walk is too much. We all seem to be so different in what affects us and how. For me, exercise doesn't seem to help my symptoms, rather if I'm bordering on a flare it will tend to make my IC symptoms worse.
09-22-2004, 06:57 PM
:welcome: :welcome: to the ICN!!
I am sorry I feel the need to begin what I say by saying...your hysterectomy may help....but it also may hurt. Some find it helpful.....having been on Lupron...Lupron helped my IC...my full abdominal hysterectomy hurt my IC. Mine was because of endo.
I hope you can get all the treatment you need and feel better soon. We have a few things in common....I am a very picky eater...have been sick since childhood. Let me know if I can help you in anyway.
09-23-2004, 02:13 PM
:angel: Hello and Welcome.
I have a "unresposive" case of IC acording to my MD's so I can not exercise at all (not even walking yet). I am having a surgical procedure to block pain in the spine so maybe soon! I have been told that for some exercise on a good day (only) can really help, at first I liked to do very gentle yoga-helped with stress too. I used to take valium (small dose) for car rides, you have to try it out first though when you are not driving to make sure it does not put you to sleep. Is you md going to give you something to help you sleep? I take nurontin, a lot of people take elavil, they can make you sleepy and block the pain signal from getting to the brain so they can reduce pain too. good luck and welcome!
You can get through this and this is a great place with great people!
09-23-2004, 02:21 PM
Hi, welcome the the ICN website. I also have a very severe case of IC. I was just diagnosed earlier this mo. I haven't started my medication yet because the dr. was unable to fit me in right after my surgery. My appt. is next week. Due to all the hurricane's in Florida. I understand what you mean about telling others and with the work situation. I have missed many days of work throughout the years because of pain. I believe I have lived with IC most of my life also. However, I am only 19 years old. I really started having trouble at the age of 13. I have had many UTI and yeast infections. I hope you find a lot of encouragement on these boards. It's good to know that your not alone. Chelsey
09-23-2004, 03:27 PM
You can get brouchures and print out a defintion of IC too. I brought one into the school I worked at after my diagnoses, I had to take a week off had trouble recovering from the dialation of my urethra. Everyone read it, and I mean everyone. I was bobarded with questions when I came back but it really helped people understand. My only regret is that I did not post the brouchure for my parents (I was a preschool teacher) I think it would have been better, then they could have asked questions too. The ICA has a great short brouchure, I gave that one to my family and inlaws so they could understand.
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