I am just so sick of this

[anewday]

I had been doing so much better- enough to usually take one or two pain pills a day (usually just one in the morning) and begin living life again- working, actually taking my kids to the park- not having to lay in bed until afternoon when I start to feel better....

And now a flare. I think it started w/ some MSG (which I am allergic to, so I know it was there- hives) in Chinese food that I thought didn't have it in there. I hardly ate any but had a reaction. That was about 2 weeks ago. Last week I had to IC coctail instills- after the first, I was sore for the rest of the day, but better the next. Friday I had another and I feel a million times worse. I usually hold the instills in for an hour- Friday I had held it for about 20 minutes and urinated all over myself -very embarrassing, thank god I was at home.

I am in severe pain and now have missed a day and a half of work. I left work yesterday because of severe pain and bladder leakage. I am waiting on the dr.'s office to call me back, but I am just tired of this. I want to live like a normal human being. Sitting seems to hurt the most, and I sit for 14 hours a day at my job, 3 days a week. My kids are out of town w/ the grandparents and I was stoked to enjoy a week to myself and my husband, now I just want to lay in bed.

No more Chinese food for Jen, that's one thing that came out of this.

[SharonA]

I am so sorry. Flares are the pits. Since you have instills done or do them yourself, it is always possible to get an infection from the cath. When you talk with your doctor, ask if you can come in to have your urine checked.

I hope you start feeling better. (((Hugs)))

[ICNDonna]

I agree with Sharon --- it would be a good idea to rule out infection.

Donna

[leelee88]

Good Idea Sharon, But hang in there and if it just a nasty flare it will pass. A good tip also is to up your water intake to flush out your system faster..Also if the instills are making things worse you might want to cinsider trying something else. Just remb it is your body and YOU do have a choice! (((hugs)))

[lisabar36]

I am so sorry your not feeling well. I would get checked for an infection just to be sure. I had an instill one time when I had a UTI and it made my pain so much worse. I hope you feel better soon.

[crkshnks79]

Dear Jenn , I hope your doctors office gets back to you and that you start to feel better !!!! I can relate w just wanting to take your kids to the park and not being able to do it , hopefully you can get back to where your were w your pain fast !! I swear I have the same bad luck , that when my fiance and I dont have the kids ( extreme rarity !!) Im in a flare , or just really dont feel well ! Fingers crossed for you !! Take Care !

[Mothergoose]

Just a thought you said you sit at work all day, have you tried on of the cushions you can buy on this site, they are built so you sit on your butt checks and not any pressure on you privates, sorry not to sure how to word this. My PT suggested I get one to sit on in the car. Maybe it could help you. Not with this flare but down the road.

Mothergoose

[anewday]

Thank you all very, very much. I did suspect a UTI since I had burning during urination, not a normal IC symptom for me. Of course, that was Sat night so they put me on an A/B without a culture being done.

I had an appt with the nurse practitioner yesterday, she switched my instills to Elmiron instead of Heparin. She said I will need to come in 2x week for at least 6 weeks. That's $200 a month (thank God for insurance!) and hard to do with a 2 year old, but if it will make me better I'll do it.

Thanks for the cushion suggestion, I am going to order one. I hopefully will be going to a 5 day, 6.5 hour workweek instead of a 3 day, 14 hour workweek soon.

[TexasHoney]

Jen, I hope you are better by now.

Take Care

[anewday]

Jen, I hope you are better by now.

Take Care

Thanks so much, I really appreciate it. You guys are so great, it's nice to have someone who actually understands how you feel.

I am feeling better, not quite back to "normal" but getting there.