Desperation

[Toto]

I am sorry that I have been posting so much. It the only way I'm surviving this these day. I have good moments and then terrible moments. I have reached the point of desperation because I can't stand the IC roller coaster ride that I'm on. I want to get off... And IC seems to be becoming an obsession to me and I hate it.

I was feeling a tad better and then boom. This morning I woke at 6am with pain and had to pee. Then I had to pee every 15 minutes until now. (it's 1pm) I tried drinking more fluid, thinking that would help. It didn't and now I have the chronic feeling of having to pee.

This would be ok...I could handle it. BUT.... At 3:30 I have to pick up my daughters at their father's. It's a 1 1/2 hr drive because of traffic. I ALWAYS stop to pee after 1 hr. (sometimes 30 minutes...) I'm in severe pain when I finally stop. Anyway... after I pick them up I have to drive my daughter to a party which is another 30 minutes maybe. (not sure) THEN I have to wait two hours for the party to finish. AND then I have to drive back to my place which will be an HOUR or more. I planned to take my younger one to have a vanilla shake and burger while waiting for the party to end. But honestly, I'm sick worrying about my bladder and if this afternoon with be a COMPLETE nightmare. I can't tell you how many times I've suffered when picking them up. I have to pick them up. There's no other option for me.

If you pray, please pray for me to make it through the day.

I REALLY wish I could find a driving solution. I can't wear a depends because I can't psychologically pee in one. It won't happen. And it's hard to push the pee out in one while driving... I could go in some bucket...but again... how can I do that while in traffic? I need like some small pot under me. But imagine if someone saw me.

Thank God I'm going to the doctor this week because I'm going to lose my mind.

Thanks for responding to my MANY posts. I've been on this site almost continuously this past week or more to help get through this. I've read so many posts that my mind is like mush trying to figure out what to do to better my situation...

What do you all do to handle driving that is unavoidable. I sometimes don't drink fluids but that's not a good think but I have no choice. But lately I've been having flares even when there is no fluid in my body. I have no idea where the fluid is coming from!

I just read on this site there is something called a Travel John (which is sold out). Do any of you recommend that? Do you think I could use it while sitting in traffic, being the driver?

[earthlady]

The unpredictableness of this condition is so maddening. It takes such a psychological and emotional toll on us sometimes. No need to apologize for posting- we need support from somewhere and there's not always someone around who understands this condition like the people here. I have seen people mention that they take a portable john with them in the car and it sounds like it works very well. I think Donna has mentioned it. I've also read where some people here take a small frozen water bottle to put between their legs while driving. I'm sending you good thoughts and hoping that your day won't be as bad as you think it will.

[Toto]

Thank you so much earthlady.

I decided I'll get the portable john and am waiting to hear what to purchase.

I thought about stopping at Target to get depends. But I am just not able to bring myself to do that yet, I guess because of my pride. And I worry if my kids found out I was wearing a diaper. Oh gosh... That would be awful. They so wouldn't understand, even though they do know I have bladder issues. I'd rather pee on the ground (and I have) than have them see me in diapers. They are 10 and 14!

I suppose you might not see the depends under a dress.

[passion4life]

So, so sorry to read the potential for a very upsetting day. First, I would like to congratulate you on your willingness to engage in life. You are a person to be admired. Second, I usually leave much earlier than normal to allow for bathroom stops. This usually reduces some of the stress associated with driving.

I totally agree about wearing Depends. I cannot urinate while wearing one. You are not alone.

Do you have just frequency/urgency? Perhaps you can take AZO prior to leaving. Do you have pain? There are some good non-narcotic medications available. These will not make you sleepy. The one I take is Toradol. Perhaps your doctor can phone in a prescription before you leave.

You are in my prayers! Please keep us posted.

[Toto]

I am due to see a doctor next week and hopefully can get a plan to make these trips a tiny bit easier. I'm going to ask about the pain meds. I do have pain. Sometimes it's worse than other times. The worst part is the feeling of having to pee and then going to the bathroom with just a little pee coming out to relief it. Makes me nuts.

My period is so strange. It stopped and now it has returned somewhat. I think this is what is causing my agony.

Angel...thank you for your encouraging and kind words. Thank you for praying.

[Toto]

I decided not to be a martyr and bit the bullet and asked my ex to let me pick up the girls another time (either late tonight or am). He agreed to tomorrow morning. I got myself so worked up and stressed about driving that I got a severe migraine and am now going to lie down after taking meds. Feels like a nightmare because of course I can't stop peeing.

I realize I've been trying to be a martyr and that I don't ask for help enough. This is a wake up call to force me to do things differently. I guess I feel guilty and selfish sometimes because this darn condition has always burdened people around me and I'm the type that wants to burden NO ONE ever...

[lizzie_71]

Toto

I understand your anxiety about traveling. I so just alittle and have fear of a traffic jam, or not an available reatroom.
Now, this is going to sound extreme and I don't know if your Dr. would go for it. because it sounds like you have alot of inflammation in your bladder already. However, wearing a catheter with a leg bag just for temperary trips might be a solution. Other people have to wear catheters for bladder disease or colostomys for intestional disease, so its not imposible. But if you don't have to then don't because they can increase your risk of infection and some people say it makes them feel like they have to pee all the time. So I don't know if this is feasible. Please ask your Dr. . I sincerely hope you find something that can work for you.
Lizzie_71

[rosechild12]

I am so sorry for all of your stress and pain. I have totally been in your situation and I avoid long car rides like the plague. In fact my ex and I have an agreement that he does all of the transportation. I have my son full time but he gets visitation and because of my condition we made up our agreement so that he does all of the transporting (he gets some money off of child support for his time and gas but it's well worth it if you ask me). If you can talk to your ex about it and maybe make up some sort of agreement about it it is well worth it. If it is totally unavoidable then I suggest having a serious talk to your doctor and see what kinds of things he would suggest. I also think AZO would be a good thing to look into as well. It has saved me during some bad flares. Also see about investing into a IC cushion for your car. It has helped me with some long trips that I haven't been able to avoid. I hope that helps at least a little. I will be praying for you!

Keep us updated on what the doctor says,
Jessica
Take: elmiron 2twice a day
Cymbalta once a day
Prosed ds as needed
Lydocaine gel for sex
Tramadol as needed
Oxycodone as needed
Orthro Evra Patch continuously
Diagnosed with severe IC April 2011

Suffered for 8 years without a diagnoses
I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC

[meResque]

Never, never, never feel like you need to apologize for frequent posting. This site is all many of us had to cling to in the early, darkest days with IC. We ALL understand your need for answers, and connection with people who know what you're going through.

I see from your signature that you have allergies. Are you medicated for them? My #1 drug for treatment of my IC, surprisingly is my allergy med, hydroxyzine. I also highly recommend the previous poster's idea of a cold water bottle between your legs and AZO. Numbing things up down there is a really great way to combat driving, and for me, really lessens the "gotta go" feeling.

As far as IC feeling like an obsession, I've been there. It seemed like the only thing I could think about, or talk about, for quite some time. My poor husband finally had to ask me to talk about something else, he couldn't handle only talking about my bladder. All I did was read this site. I charted when I peed, how often I peed, thought about how it compared to the day before, etc. It was pretty bad. It will fade as your symptoms become more controlled, I promise. Now, when my husband asks how my day is... I tell him about work, and he has to remind me he was actually asking about my bladder!

I hope you're laying down relaxing now. Let yourself off the hook. You are doing the best you can to navigate these new, and scary waters.

[Toto]

Thank you ALL so much! You guys are awesome.

Lizzie_71...I would so love a catheter. Though I did hear about the discomfort and infections. I did have one when I gave birth and it saved me from severe agony in my bladder. It wouldn't be a bad idea for a car ride and certainly is worth inquiring about. Believe it or not, I've gotten ONE UTI in my life. Despite 4 kidney stones and chronic bladder issues. Strange huh?

Rosechild12...Thanks for sharing! I was interested to hear how you handle the situation. I can't have my ex do the driving on my days, however, I am going to change my driving times and arrange it so that I'm not in traffic. You've motivated me to be more bold! Thank you for that. I'm uncomfortable sharing my illnesses with my ex.

meResque...I so appreciate your kind and thoughtful words and found them to be so comforting to me right now. I did rest today and treated myself to a vanilla shake. I did use AZO today and it took the edge off and enabled me to go every 30 to 45 minutes rather than every 5 to 15 minutes. I take Claritin daily but am wondering if I might need something stronger. I did try Atarax and it made me feel so strange...like jittery and anxious but tired at the same time. I was bummed about that. I took the smallest dose. My allergies are quite severe and I use a nosespray called Flonase. That actually works well but of course it doesn't help with the internal histamine issue. Perhaps I should look into controlling allergies more. This time of year is bad for me because of Ragweed and mold in my area. Ya know...I had no idea about the cold water bottle taking away the "gotta go" feeling. Never would have thought of that!

So I'm getting my girls in the morning at 9am. Let's hope I wake up in a better state...free of a headache and bladder pain. My ride should be only one hour tomorrow and there is almost no traffic. So I can stop easily if need be.

[ICNDonna]

I hope the drive today is easier for you.


Donna

[Toto]

Hi Everyone,

Thank you for the prayers and kind words. I was able to drive two times this weekend for at least one hour without any problems. In fact, at one time I was able to hold my urine for almost 2 hours. Amazing. I took all the advice here and it helped. I took AZO and I stopped drinking everything except for Crystal Geyser water. And I'm following the diet very strictly. It seems that my bladder has calmed down. (except for a short-lived flare last night)

Last night I tried Pear Nectar by Goya. Well... twenty minutes later I was in the bathroom every 10 minutes. I made the mistake of not checking the label. The ingredients include citric acid and absorbic acid. Yes...I was dumb not to think about those things. Now I know that I am ultra sensitive to certain drinks. I never would have known that if it weren't for this site and your responses!!! Luckily the flare went away after about an hour or so.