I'm having a pitty party

[stac7_8]

Well I'm having a pitty party....I have come to terms with the fact that at this point in time IC has me. I do not have it under control and that just really !!!

It is so mind blowing that just a few years ago, I was doing ok. It is mind blowing at how fast this diease can pull you down. My friends say to me "Stac, you don't look sick" "Stac, are you ever going to feel better" "When is the old Stac going to come back" I hate this and I know that if it is hard for me......it has to be twice as hard for my kids and my man.

A friend of mine said she was going to stop asking me what was wrong, she said that she is just going to ask what is not wrong. Honestly that hurt my feelings. This girl is the one girl that I thought would understand....she has MS. I mean come on!!!!

So I can't vent to my friends because well they just don't understand.

Now it seems that I'm going to stop the Elmerion. I wasn't taking it 3x's a day at first and then of course the URO told me that I needed to start taking it 3x's a day. Ok I have been honest.....NOW THE BRUISING THAT I HAD AT FIRST IS WORSE. I just got done with a shower and noticed that the front of my lower leg is almost all brusied up. That is not NORMAL!!

To make matters even worse.....my hair is coming out. I have always lost a lil here and there but I just like I said took a shower and OMG it is crazy.

So I'm making the call to the URO tomorrow. So Now what!!!

To top off my pitty party...my 8month old is crying so much right now. I think he is teething. I know he doesn't have an ear infection, just took him yesterday, that's what I thought it was. So teeth is the only thing left.

Oh and last....I hate the fact that I can't enjoy sex anymore I'm able to enjoy a lil but well you ladies know what I'm talking about. It just really sucks.

Thanks for letting me vent I needed this soooooo much. I wish everyone a blessed day and I wish for myself......to just have a day without pain!!

[GriffsMommy]

((((((((((((Stac)))))))))))

I'm so sorry that you're having such a hard time. I know how hard it can be when people just don't get it. My hubby will say things like don't you ever feel good. Or there is always something wrong with you. Sometimes he makes me feel like he doesn't believe me. I know he does he just gets frustrated.

I'm sorry that you're going to have to go off of the Elmiron but if you're having all of those problems it's probably better for you to go off of it. I'm on it but personally I don't know if it's helping at all. I just ordered another 3 months which costs me $120. That just about killed me. I'll listen to the uro though and stay on them until my next appt in July and then hopefully I can try to go off of it and see what happens.

As for the baby, gosh, I remember when Griffin was teething, how miserable. Heck he's miserable now because he's still getting over being sick and he is so unhappy that mommy has to go to work. I always gave Griffin baby ibuprofen when he was teething, that stuff is great, it lasts so long. I hope he feels better soon.

[Curly]

I am so sorry you are having a hard time. I know that I throw pity parties too. None of my friends really understand either and sometimes that makes me angry at them and even resentful because they are so healty. I would give so much to have a normal bladder. Wouldn't we all????? I hope that you get your symptoms under control. This too shall pass. Wel,, I just wanted to let you know that you are not alone. You can pm me anytime to vent. I have only been diagnosed with IC a year so I am not an expert on it. I'm still figuring it all out. I dream of the day my uro calls and says there is a cure for IC, then I run to her office and take a pill once and my bladder is happy again forever. Hope you feel better soon.

[ICNDonna]

I'm sending well wishes your way. I hope you feel better soon.

Warm hugs,
Donna

[humpieumpumkin]

Don't let it get you down! We are your friends here too. We always care about how you are doing and how you feel. I am very sorry you are having a hard time. I hope that you feel better soon. Elmiron didn't work for me either. I lost some hair and had SEVERE nausea. THere is always something else to try so don't feel bad about that. Wishing you a better afternoon...

Erika

[lasrlsrps]

I am sorry your going though a rough time, I can relate to you feelings about your friend having MS and not understanding what you are going though. My sister-in-Law has RSD and that is not too much different than MS but there systems seem to be worse and there is no cure for this either. I would say something about a flair up and she'd say oh it's your back not your bladder as if I can't tell the differnce where my pain is. I have spinal stenosis in my lower back so if my IC flair's up really bad it makes my pinch nerve make everything go haywire, so I try to keep everything under control and I am still learning. It seems it all comes together if I just have a bland diet, witch depresses me. I had very little hair fall out with Elmiron, but I had gasses bloated and felt sick the first month I was on it, and now I don't have any and I need a refil on them. They cost so much without insurance, and I am still not sure if it is working or not. I heard some people on this net say they use Elmiron and Prelief and it works very well, but I don't know because I have not tried it, you might want to give it a try? Ask your Docotor about it another alteritive is Gabitin, it gave me a headach at first but it is gone not, I take 900 mg now a day three 100 tabs a day, I hate taking them, but it makes me feel better. I have to get refills on those two Yuch I hate taking so much stuff.

I hope your baby gets better and passed the teething stage I remember Ryan and Russell with there's and I gave them IBM, and they handled it much better. Ryan always ran a fever and was so sick with them, but he is four now, and trying to potty train at night witch is no good right now! Fusterating. Sending you a hug and support!

Lori

[mary124]

Sorry Elmiron didn't help you!. There are other things out there that can help you, ask your doctor. Sorry that your friends just don't understand, I think that we all have friends like that (please, don't let that get you down!!) You still have us to come too!) I stopped telling my friends about my problems a long time ago, because most of them just don't or didn't understand- saying, "oh, you will get better" or " you look just fine!" or something like that. So please, just remember, we are here for you.
Hope you feel better soon.

[amartaingirl]

Try Cystoprotek

I quit elmiron 62 days ago...due to hair loss.
Please know..that by day 62..the hair loss has just about stopped.

My bladder is well.
Please try Cystoprotek
It helped immensly with Frequency

Atarax helped w/ the stress of it all

[SharonA]

(((Hugs)))

[dancemomof2]

Feel free to vent away. I will listen, I have my own pity parties also.

[stac7_8]

Thank You

Please let me say THANK YOU for all the words of encourgment. I truly appreciate it and needed to vent.

Thank you again ladies.....it is so wonderful to have friends that really understand. I'm glad that I can call you all a friend even if we have never met. :woohoo:

Have a great day

[littlemyrn]

I just lie, I try not to tell anyone how I feel ever, unless it is here on the boards. For one, I knew people get tired of hearing people complain, two, they don't understand this disease, (I don't even know if doctors do), and three it makes people feel uncomfortable in how they should react. Like tomorrow, I am having my hydro done, god I wish I could drive myself, but of course I can't, we do not have cabs here so I can't do that, and I have to rely on my mom and last time she threw such a fit because my dr. was running late that I left recovery before I should have and threw up in car coming home. Now she is already complaining that she wished my dr. would call in my meds today so she wouldn't have to wait on them or go back to pharmacy to get them. So, I will probably just call a friend that lives not to far away and have her go get them. I wish she was available to drive me, but she has two kids and can't.

[Sunflower2]

[GriffsMommy]

Oh wow Little that just sucks. I can't imagine how that must make you feel. My hubby has ADD so it is hard for him to sit around and wait and he by no means made me feel like I was being an incovience to him when I had my hydro done in April. He took the laptop with him so he would have somethig to do while I was having the procedure done. He was great during the whole thing even though everything was running behind.

I hope all goes well tomorrow and your mother shows some compassion about the whole thing.

[dg2901]

Everybody deserves the occassional pity-party; dont feel bad about it.

Hope you start feeling better soon!
Diana