For those of us with mild/moderate IC

[lnseagraves]

I have what I would consider to be mild to moderate Ic. Generally day-to-day I have burning when I pee and the occassional pelvic pain. But, I can frequently eat what I want and when I want so long as I stay away from major triggers and eat other no-no foods in moderation (like a taste or a sip).

That said, I've been pretty down lately with how disabling this disease is even for someone like me. Have you all noticed that no matter how good you feel IC is always on your mind? You ALWAYS have to make concessions. One reason I accepted my current job was I have Mon. off so I can see a Doctor... which means I've sacrificed my Sat. with my hubby.... I count my personal and vacation leave days to make sure I always have ones available in case I flare... I even avoid taking vacation FOR vacation! I don't do most of the hobbies I enjoyed pre-IC like going dancing at clubs (can't drink alcohol, and "jiggling" too much during a dance can cause a flare... plus I can't wear those tighter clothes anymore)... I used to be active in theater but now Im always scared of flaring during aperformance... etc.

We have to prepare for any road trips... remember to always have aisle seats... and always know where the nearest toilet is... not to mention the fear of having co-workers notice how often you avail yourself of the facilities.

This valentines day, I couldn't have "fun" with the hubby because I wanted a glass of white wine with dinner! How many 25 year olds have to make that kind of choice?

I know many of the more severe cases of IC are much more debilitating, and I'm not trying to say that my case is anywhere near as bad. I've just gotten kinda bummed lately that this is how my life has gotten... and I hardly even noticed it as it was happening. Today I just realized how much time and energy I devote to worrying about my bladder... even when I'm feeling well... because I don't want to flare. Its as if I literally live in fear of flares...:cussing:

Sorry about the rant, I was just wondering if any other mild/moderate patients ever get frustrated with this?

[alycat]

(((hugs)))
I must say I'm currently in your boat as well. I'm usually mild, though lately moderate, IC. I'm not quite twenty really, I'm almost 19, but in college, it's all the same. Thankfully my friends have gotten used to accomidating me when we go out, but I agree, it's really hard to make those desicions sometimes.

I've been frustrated with the disabling part of this whole thing myself. Mostly cause our disease is soooo invisible. "You don't look sick." I hate that line. One of my old managers at a place I used to work at actually told me one day when I was flaring that "It can't be that bad. Tough it out." ARG. Getting people to really understand this thing is the hardest part for me. I just wish it was one of those more well-known diseases you always see on the news or something, casue then people would at least have some understanding.

I also agree that having the term IC in your brain 24/7 can wear you down. Lord, I even dream about my IC. Now that's frustrating.

I wish you luck and good health my friend, and to all of us dealing with this irritating disease.

[windchaser]

i am right along with both of you my pain has gotten worse since i started DMSO so me and my doc decided to stop it but still in major pain and nothing i can do about it I get irritated alot lately...

[Claredale]

My IC was diagnosed when I was 23. While I didn't have the ability to dance, nor did I drink, I still felt cheated in many ways. I had 2 young children and was always such an active person with my friends and and had a fulfilling life. It takes a while to get used to all the changes that IC brings about. While I have had it a long time. I promise you will find that you have some good days. My doctor, once I was diagnosed with severe IC a few years later. I know it's not common, but it happened to me and even though I can't prove it, I feel that the DMSO didn't help matters. I found that with every DMSO treatment, I felt worse. I went through 3 sets of 6 week treatments. After all of that, I was diagnosed with severe IC. Anyway, the doctor that I was referred to was such a compassionate doctor. She gave me some great advice. Of couse my kids were older then which kept me even busier, and I did what I could to continue being a "normal" mom. My doctor told me to always keep a journal, which was great advice. I look back at some of my days and can't believe I kept going. Now, I am in a great place with my all of my IC symptoms. I too thought I would always have IC in the back of my mind for many years. But, truly now that I am on the right combo of meds and my life is realitively normal and have a doctor I really trust and I know wants me to be at my best. It's been 20 years since the beginning of my symptoms. It never occured to me as a young person that I would fight IC for so long, but I can honestly say that so much of that time, I was okay. I had my bad days of course, but I am so thankful for my doctor's advice of keeping a journal. I recorded everything from the good things to the bad times. When I would have bad times, I would read back in my journal and remember that it wasn't all bad and I had so much to look forward to. I can remember the fear of going on trips, knowing where every bathroom was and just making everything be around my IC. I no longer have flares. I am in a wonderful time in my life. My kids are grown now. I know that they had to make many concessions with my illness, but they tell me that I was still a supportive mom. They really turned out to be to wonderful men. Just remember, life is NOT all about IC. It may be hard to grasp that, I know it was for me, but looking back, I remember so many good times and wonderful friends too. I pray that each one of you will find the right doctor and meds to make your life as normal as it can be. It certainly isn't the life I choose, but I am happy and thankful for what I have learned through this experience.

Hugs, Tracey

[Berkshire Road]

I think if your symptoms are pretty mild, but you find yourself thinking and worrying about IC all the time, it might be a good idea to see a counselor of some kind so you can talk this through with someone.

[ICNDonna]

I agree with Carolyn. An interstitial cystitis diagnosis is a huge thing to accept. A counselor can help you come to terms, and deal with IC.

Sending encouraging hugs,
Donna

[mystereys]

I feel the pain, so to speak.

I'm 27 now, and I was diagnosed when I was 24 (I think). I'm lucky that I don't have symptoms on a daily basis (usually I flare one or two days a month). But I do get paranoid about those off days, especially if I have a vacation coming up or something.

Prelief has really helped me, both physically and mentally, as has pyridium. I think building up the IC arsenal helps, no matter what your weapons are. Would it help you to see your doc again, to get meds to prevent flares or relieve your symptoms? As ICNDonna and Berkshire Road wrote, a counselor is a great idea, too.

There are bad days and there are good days. But you can not let the bad days run (or ruin) your life. The annoying thing is the more you stress, the more you might flare. So vent away here, and know that there are good days to come. You have to remain hopeful, because the other option is just too depressing for words.

[stacyoigirl]

It is pretty crazy when you think about it.
Sometimes I like to pretend I am normal and eat cocoa puffs at breakfast, not a good idea. Reality comes back.
I am going to vegas in a few weeks. I have been there with IC, but not sure how it will go now. I think I have gotten worse since I have been. But the good thing about vegas, is the bathrooms are everywhere! So maybe I will try and pretend I am normal when I go.

Hope you feel better, there are others with those problems too!

[petrie86]

I'm 21 and deffinitly feel your pain. I know I have amild case of Ic but it gets so frustrating thinking baout how hard life is with it and being so young. Its horrible to think about the rest of our lives ahead of us and enouring this terrible disease. Not to mention my anxiety on top of the ic. I saw a therapist in the fall for about 3 months, she helped me get over my family issues and the trauma i went through with that all. I was fine for a while and my axiety and pain subsided for a few months then started all over again when my sister's left bc then my parents blamed me for their decisions. And now i'm back at aquare one. I try to sleep and night, if its not the pressure,burning and frequency, its my anxiety! I hate it, I have a hard time getting the rest I need. And working full time, iyiyiyi sometimes it's too much for me to handle.
but then i think about people who have it way worse than i do and try to stay positive. I've come a long way since being diagnosed. It takes time to find the right meds. I will keep you all in prayers! Sending lots of hugs

Rachel

[NewLife]

Hi! I also have mild-moderate IC. Being diagnosed is the best thing that has happened to me in a long time! Before my diagnosis, I was a chronic overachiever but I was harly ever happy. I kept complaining about life and wasting my time on unproductive relationships. Now I have a whole new perspective on life. For example, my husband and I used to spend 4-digit amounts of money monthly on restaurants and alcohol but I found that boring and repetitive, and now it just feels good when I can go out once a week and have a little treat from a frozen yogurt shop on a summer night or have Sunday breakfast at my favorite bagel shop without having a flare. I used to keep wanting to make more and more money to buy unnecessary things and facing the possibility that I may one day become disabled and stop working and we will still have a good life made me feel more secure about money. IC made ordinary things extra-special for me and I am very grateful for that. For years people had been telling me that life is about the journey rather than the destination but I never got that concept until IC taught me. It also motivated me to eat well, stop drinking alcohol, exercise and rest and I love doing good things for my body. I'm sure may other people on this board feel the same way about IC :) To me, it is not a limiting factor because it actually improved the quality of my life.

[Claredale]

Newlife, what a nice post.

Tracey

[Schmee]

I was diagnosed when I was 19, so it's been about 7 years now. It took about 4 years to get my symptoms under control and now they are pretty moderate. Luckily, I haven't had a serious flare in a few months (knock on wood). You learn what your triggers are and when it's safe to do the unthinkable, like have a forbidden glass of wine.

I was on the boards for a long time after I was first diagnosed and it really helped being here and just venting, listening and voicing concern. IC can consume you. I always used to feel like it stole my life. I couldn't go out with my friends as often, or even drive the 1 1/2 hours to see my boyfriend at the time. But you learn to cope with everything and find a balance. IC becomes a part of you and it's necessary to make adjustments in order to live a full life. It isn't easy. It took me years to find a balance. Even now, I still have days when I can't bring myself to get out of bed.

The things that really helped me:
-Having an awesome doc that always listened and was always there when I called in tears.
-I got a counselor that specialized in disease management (or something like that). This helped immensely! I could talk to them about anything.
-Being here on the boards. My hero back then was/still is Aunt Debbie. She was truly an amazing person. The people here are genuinely concerned and want to help. We all need a close-knit support group. You'll find it here.
-Communication. Telling people close to me about IC. Even if they don't fully understand (most of them didn't), the people that you tell love you. They want you to be healthy and happy.
-I strive everyday to not feel defeated. This was hardest when I was first diagnosed. It just sucked to be a teenager and have to plan your trips around the bathrooms. Not to mention having to change from wearing all my cute clothes and get used to wearing those non-restrictive "old lady" clothes. hehe But, it's kinda my style now, so I just roll with it.

There are lots of resources out there, you just need to know where to look. You're in the right place, though. The support you will get here on the ICN will be invaluable to you as you live your IC life.

Mel

[breannavich]

I'm 26 and had sporatic symptoms for about a year until I was (just recently) diagnosed. For me the diagnosis was extremely overwhelming. I cried a lot. But I've come to realize, not only does that make the IC worse!, it doesn't get me anywhere. I'm not going to give up my life to IC..now that doesn't mean I don't listen to my body and take it slow when needed, but when I feel sad I allow myself only a few minutes to sulk and then remind myself that comparitively, many people have far worse problems than me. It might just be me, or the fact I'm newly diagnosed, but I find having a milder case makes me worry more--thinking about what could come scares me, so I'm trying my best to live in the moment and be pro-active about my treatment and educate myself so I don't do anything to worsen my bladder. I think talking to someone about IC is a good idea especially when first being diagnosed--my problem is, aside from my uro, other doctors, not to mention people and therapists have no idea what IC is..the idea of sitting and talking to someone about IC pain seems daunting. It's not like cancer where people are aware of the condition, pain, side-effects of treatment..an IC looks normal and knowledge about the condition is so sparse I'm just not sure talking to another person who isn't educated about IC is the answer. If anyone has had a positive experience with a counselor or knows of a doc who was particularly helpful i'd love to hear about it!

[Charisse]

Breannavich I agree counselors have not been very helpful to me in this department. It's like someone said. . this is an invisible disease to many (even medical professionals). While I'm very grateful I don't have cancer, I wish IC was as recognizeable! It would make living with this disease a lot easier. My IC is also mild/moderate although it's been worse throughout my current pregnancy. Even so I get so angry that I can't do simple things that so many people take for granted like vacuuming. I miss cleaning my house . . I do what I call the above-waist cleaning and must depend on my husband or younger brother to help with cleaning floors and picking things up or anything that requires bending over. Even loading the dishwasher or switching laundry can be too much somedays. Everyone tells me I just need to accept the help from other people but that's not that point. I WANT to do these things myself. I know I can hire a housekeeper or ask family/friends to help out but I miss doing it myself. I miss wearing jeans, having sex, and EXERCISE oh my I miss exercising!! So thanks ladies for chiming in on this thread. It helps to know there are others out there feeling like I do and I would rather talk with some of you then pay a therapist anyway :lmao:

[cowdean]

Let me ask you this are you taking prelief with the foods you are eating that are on the bad list? There may be a food that was on the ok list but it affects you we are all different. Do you have gas and constipation? The reason I ask these questions is because I was moderate ic and now I am mild. How I did this. I am taking prelief (sometimes 4 pills) with some food I eat, I also take a vegative laxative (not everyday just when stools start getting hard), and I take rolaids with gas relief. Some of the meds I take for diabetes causes constipation and some of the pain pills. I also take aloe vera gel 50 mg with each meal. In the beginning I was flaring alot and like someone else said it takes some time to find what is right for you. Good luck to you and hope you can start feeling better real soon.

PS in the beginning sex was out of the question, now I can have sex in certain positions and as long as my boyfriend does not go to deep. I wanted to share that so you know that there is light at the end of the tunnel. Again, I hope you feel better real soon.

[Schmee]

Ahh, Prelief. This was a godsend when I was first diagnosed. I had a bottle of it everywhere. In my purse, in the car... I even kept some at a couple friend's houses, just in case the one I had in my purse was empty. :) Prelief can be expensive, so these days I've found Alkaseltzer to be very helpful. I just take some before I eat a 'bad' food and I'm usually able to tolerate it. The other thing that helps me a lot is pear nectar. If I'm feeling a flare come on, I'll drink a glass or two and it will either eliminate it or lessen my symptoms. It's awesome. Hope it helps!

[ICNDonna]

Anyone with a blood pressure issue should avoid alkaseltzer. I used to take it for headaches, colds, etc., but it's contraindicated if your blood pressure is even slightly high.

Donna