I need support!

[PickPink]

I've been in a 3 day flare now and I'm ready to pull out my bladder and stomp on it! Its been a pretty moderate one all weekend, where I was in pain.. had the pressure and the urgency, but it wasn't where I couldn't handle it. A pretty typical flare for me and I can handle that. But then last night I woke up, with such urgency that I felt like I was going to wet the bed. And I woke up twice more to pee before waking up for work at 6:15. My bladder hurts so much today, and I'm stuck here at work until 4. I keep breathing and trying to relax, but it's only 11am and the frequency and urgency and pressure.. it's getting to me. I just need some supportive words right now. I've been going med-free for 3 months (since i got DXed) and I can't tolerate the pain anymore. It's just too much. I feel like I'm losing my mind because it's never ending. It's finally starting to sink in that this is my life. the rest of my life I will be watching what I eat, and taking meds, and peeing constantly, and always being in pain. I feel like the light at the end of the tunnel has gone out. And I'm usually a very optimstic person - but I think I'm finally beginning to realize that I do have IC. That this isn't going away. It's chronic and that's it and no matter what I do it won't go away and it's really getting to me right now.

I have a doctors appointment tomorrow.. but that seems so far away at this moment. My husband and I were trying to have a baby, which is why I have been going med-free. I knew it was going to be challenging, and I do kind of feel like I'm failing, and I'm weak.. especially since no one around me understands this terrible disease. I don't know what to expect at the doctors tomorrow. I feel like I have to choose between having a child and having a real treatment that can give me some relief. I'm so torn and confused and in such pain. ugh!

[petrie86]

Jenny,

I totally understand the pain your in right now. Dont ever forget that you have a family here that will always be right behind you. I'm always here to listen and give as much support as I possibly can. I know your trying to get pregnant and I wish you all the luck in the world. Ask your dr about your options on medicine. I dont think you have to drop all your meds. I'm not an expert but i believe there are other options. I'm sure some women on this site will be able to help you with that. I'm only 20 and I have no clue about trying to get pregnant! lol
There is always light at the end of the tunnel, and when you cant see it anymore we are here to help you see it again. Please dont give up!!! Can your bladder tolerate tylonal or advil?? Maybe that will help a little. And try a heating pad too. I wish I could give you a hug, ((((HUGSS)))) I will be praying for you.

Rachel

[PickPink]

Oh I really wish I had a heating pad.. but I'm stuck at work! I think this is a good lesson for me, and I'm going to start leaving a spare at work for cases like this. I've never had one last THIS long.. and bother me this much at work. I'm totally suffering I think I'm going to go to 7-11 on my lunchbreak and get some tylonal! Hopefully that will help some.. and not make it worse! Thanks for your kind words Rachel <3

[dancemomof2]

Oh no. Maybe keep some of those heat patches at work for flares. Hope you feel better soon.

[ICNDonna]

You might try a stick-on heat pad. Is there any way you could go out and get one so you can give it a try?

I'm glad you're seeing your doctor soon.

Warm well wishes,
Donna

[PickPink]

That's what I have a home, the kind that sticks to your underwear for 'menstural pain'. I think I'm going to run to CVS instead and stock up on some stuff for work.. I just can't believe is 11:45 and it's getting worse - not better! I just keep drinking water like I'm a camel! I just hope this ends soon I'm so sad.

[vm]

It sounds like you are in such discomfort right now. One of those times I wish I had a magic wand to *POOF* away someone's pain.

I bet it is terribly frustrating to be in the process of trying to get pregnant and trying to stay away from medication for that reason ----- and then to flare so badly.... I am really sorry you are having to go through this - it is definitely not fair.

You are most certainly NOT a failure. You are fighting the good fight against this stupid disease and it's a fight that hardly anyone can win without some sort of treatment. It says nothing about YOU personally that you are in pain and everything about this disease.

I was really upset about having to take medication at the outset, too. As each pill was added I just couldn't believe it. I felt like I was 80 years old with my weekly pillbox sorter. LOL I felt bad that I was putting all that stuff into my body. BUT I discovered that it was so much better than living the way I had been living with IC.

I am very grateful for all those many, many pills in my pillbox today b/c they have given me my life back. I have not had bladder symptoms in a long, long time and can do whatever I want and eat and drink whatever I want. I have my life back.

I understand trying to get pregnant completely complicates all that, but please don't think you are doomed to an entire life of discomfort. Most ICers do go on to find treatments that help their symptoms.

As you said in your first sentence, I think pulling your bladder out and stomping on it would be a great idea! I bet you could round up some other people on here to join you! :woohoo:

Seriously, though - I hope you feel better soon. (Any chance this could be an infection?)

[PickPink]

Infection?!

I've been wondering the same thing.. is it an infection? But I've had.. I don't know.. a billion of them And it's definitely not feeling like that. However, I have not had one since being DXed with IC - so maybe they feel different now? I don't have the constant burning, just a tiny bit during the last few drips of pee - which is what I normally get in a flare.

Thank you so much for your post and all your support. It makes me feel a lot better knowing that you have been symptom free and can eat and drink freely. It definitely makes the light at the end of my tunnel light back up. So thank you so much <3 I'm going to lunch now and stocking up on some supplies.. so I'll keep you all posted throughout the day (because work is boring, and I'm in pain, so what else am I to do?! )

[Rhonda Garrison]

Flare

Hi Jenny,


I wish you the best today. Try to stay strong. I know how difficult it is for you, I have been there many times. I just wonder if you have ever tried an ice pack. I read a lot about IC sufferers using heating pads, and it really makes me want to cringe.

For me, the idea of ice seems to work better because I am on fire. Also, the ice might not be able to reach my bladder, but the intensity of the ice can be numbing. In my experience, at work, I would keep a bag of ice in the frig, I hope you have one, and or bring several ice packs to keep in the freezer. When one would lose it's coldness, I would return it to the freezer and then use another one. If you want your privacy, label a paper bag or whatever you may use with your name and hope your co-workers will stay out of it. You can buy the ice packs that you break open and then they become cold. These you can keep at your desk. Along with the ice pack, I would put a stack of books or box under my feet and put my feet up. Of course this is a desk job environment. If your on your feet all day, this would be at lunch and on your breaks.

That's what I do. I have had IC for 4 years, or actually a lot longer, but I was diagnosed 4+ years ago. I have had 3 children before that and a hysterectomy after. I still have my ovaries, but that once a month thing usually puts me into a huge flare. Sometimes I luck out, but not very often. I am currently going through bladder instillations. I know a lot of people use these while they are working. If you are interested in not taking any medications that might be harmful to your future baby, you might check with your OB/GYN and your PCP, and of course your urologist and find out if using lidocane, or the "cocktail" in a bladder instillation would help you. You can find out what the bare minimum of medication could work for you. I know it's not pleasant, but once you have reached the point where you would like to throw in the towel and know that is not possible, this could be the best resource available for you.

I currently am speaking with my urologist about using this at home and doing the instillations three times a day. I have also been in contact with other patients who swear by this. My urologist said the improvement rate is extremely high with this procedure. I'm trying this, because I have had the interstim, 3 hydros, am allergic to most of the medications I have tried, or there usually is some awful side effect I can't handle, but most of all I hate taking narcotics or basically anything that messes with my mind.

Bless you, your not alone. Try to relax as much as possible.
Rhonda

I am only sharing my experience. I am not a license therapist, nor a Dr.

[PickPink]

Thanks Rhonda, I definitely appreciate any kind words I can get right now! I am so thankful I have found this network, my "alone" feeling I get during flare ups definitely disappears once I come on here and see how much all of you care about me, and everyone else on here I really can't express how much I appreciate all of it!

I haven't tried an icepack yet. I just got back from CVS and threw my heatpack on immediately! It's working, slightly.. but any improvement is a big one right now. When I get home tonight, If I'm still flaring ( lets hope not!!) I'll try the icepack. I don't typically get the 'fire' effect from my flares, so that might be why the heatback works well for me. But I can definitely see why you'd cringe if that's how you feel!!

My symptoms tend to worsen the day before and the first few days of my period.. but that was a week ago! So this isn't one of those types of 'expected' flares. I really don't know what caused it. I haven't had any of my trigger foods to eat, and I've been really super good about having only water to drink.. of a while now (ugh.. i'm so sick of water! haha). I'm just to the point where I realize I can't do this alone, despite how much I want to. And I hope that my doctor will have some sort of solution for me tomorrow. I definitely have a lot more hope now though, knowing that there are some treatments that are available during pregnancy.. or pre-pregnancy in my case!

Thanks again!!

[toby75]

This is a quote or message I heard from a popular news anchor, I cannot remember his name though, I heard it on News Radio.

My wife may have a disease that is not curable but it is treatable. She will do everything she can as far as treatments go, medications go and exercise to stay ahead of this disease.

Her disease is COPD.

There was a lot more to this statement then what I wrote which was really touching. We know that IC is not fatal, that we know of, but it also is not curable and we will just have to fight and stay on top of all the treatments and suggestions to keep our IC in control.

[amartaingirl]

have you tried the ALOE?

Desertharvest.com

aloe vera pills.supposed to work like elmiron

i dont think they would hurt a baby or anything

ive been taking them for a few weeks now
and i feel great

i had to stop elmiron because my hair started to fall out.

ask your obgyn

a baby
how exciting
i dont have any..i dont think i'd be very good at it

you know..i squashed my cat this weekend...
i was putting laundry away...i opened the dresser drawer
went to get more laundry..put it away..
then tried to shut the dresser drawer...it wouldnt go..
i thought a shirt fell back there...but i wasnt about to dig it out..now
so i pushed it again..only to [email protected]!!

damn cat
shes ok
flat, but ok

[PickPink]

Your poor cat ! lol, I'm glad he is okay! That would totally freak me out!

I haven't tried Aloe pills yet, but I will be sure to ask the doctor tomorrow. I have much to ask him! I just hope that he is able to give me some little tiny bit of hope.. I don't want to give up trying to have a baby

[Berkshire Road]

I can understand how much you want a baby, and I do not want you to think that I'm telling you how to live your life or anything else. But, in my experience, a baby also needs a reasonably functional parent once the pregnancy is over with. So I am just submitting the possibility, here, that maybe you might consider delaying the baby project by a few months, in order to try some treatments. Especially heparine-lidocaine instillations, at least those are the best for me. You may get your symptoms under control sooner than you think; then you can try going off them and re-starting the baby project.

This is only a thought for you; I don't mean to say that what you're doing now is wrong, only that there might be other options to consider. I can understand that deep longing for a baby; I was lucky and had one, but I've never stopped regretting the others that I couldn't have. My baby is 12 years old now, though, and remains the joy of my life.

Also, I know not everyone feels this way, but in my view, adoption is a beautiful thing. My mother was adopted and so was my best friend, and they have both turned out fine!

I hope you get some relief, as soon as possible. I am thinking of you.

My American grandfather used to say, "There's always light at the end of the tunnel,kiddo. If you can't see it, it just means that it's around the corner.." (He called us all "kiddo," probably to disguise the fact that he couldn't remember all our names ) And my French grandmother always used to say, "Ça ira mieux demain," things will be better tomorrow. Tomorrow, I think, is used as a metaphor for the future, in that saying. Anyway, those are the words of encouragement I was often given as a child, and so I pass them on to you, and I hope they help a little.

[PickPink]

Thank you Carolyn.. and I can understand the 'waiting'. We do have a daughter together actually, a three year old, and she's wonderful <3 Right now I'm working full time and going to school full time! So I'm spread thin with just that.. then add in IC and I just don't know how I do it! But I'll be graduating college soon.. very soon!.. And we just bought a beautiful 4 bedroom house, that we are ready to fill with another baby. We always wanted our children to be 2 or 3 years apart, but as it is they will be at least 4 years! I just don't want kids that are 5 or 6 years apart.

And besides IC - I have other health problems (cervix issues and cysts) that add to my concern and my want to rush. The way my family and I look at it, I may only have a little bit of time left to have another baby. And if I start meds now and wait - It may be too late.. or I may just get horrible flares again during the whole pregnancy, so I'd feel like what was the point! So know I have to decide what is the best option for us.. just stick it out a few more months and hope I conceive soon (we've been actively trying for 3 months).. or do I put it on the back burner and hope that I don't run out of time before we get a chance to conceive. I'm very torn.. and I'm hoping that my doctor can help me decide tomorrow.

Thanks again though, it definitely helps to know that others have been through similar situations <3