I broke down at school today crying, went home...

[green_the_fish]

I'll post more later in a reply to this message...need to calm down... :toilet:

[kelly McC]

(((((huggss)))))

[amaris]

Sending you a warm hug and a prayer for healing...
Amaris

[green_the_fish]

Okay, I'm ready.
The pain kept me up last night, so I didn't get to sleep until 12:30. I woke up at night to urinate. When the alarm clock rang at 6, it took me a half an hour to even become aware that it was going off. I missed my bus, my mom had to drive me too school.
I could feel myself on the verge of tears at school. At the end of English Honors, I just started to cry. That's my favorite class, too. The teacher was really nice about it and kept me after class to talk to me. After a few minutes, he brought over the school councellor. She brought me over to her office and talked to me there. I was worried that she would think I was crazy or trying to play hooky, but she seemed to understand.
The councellor had once gone through a period of bladder spasms, and once had a painful cyst in her ovary. She talked to me for hours and let me cry. Then, the vice principal came over to talk to me. She said that she had interstitial cystitis! What are the odds? She says that Elmiron changed her life. It worked very fast for her, within one week. I'm glad that I have people at my school who understand. My councellor told me to not go back to school this week, though. She says my health should be the top priority in my life.
I think I'll cut the dose of Ditropan XL down to 15 mg. Should I?
I don't think that Ditropan is doing me any good, actually. It said on their website that it should take one or so to take effect, and I've been taking it for 11 days, with 5 of those days being on double the highest prescribed dose on their site. It should be helping by now, right?
I have a DMSO treatment scheduled for Thursday. I'm going to have to spend these next few days preparing myself for the pain. On the phone, the urology clinic said that they would schedule a cystoscopy with the works ASAP. They'll schedule it with my mom on Thursday, and said that it should take place within a week, "no promises", though. I also bought some Prelief today, I just took two pills.
I'm sad that I broke down at school, but happy that I seem to be on the right track here. Hopefully, this nightmare of pain will end soon, and I'll be able to wake up to my life.

[work it]

Hey green, what a day you had, so sorry to hear that. That is so nice of the school to understand what you are going through. Sounds like you are strong person so I know you will be okay with your next DMSO treatment. As for the Ditropan XL call the Dr. or have your mom call and speak with them over the phone to see what they suggest. I will be thnking of you.

Teisha

[kadi]

Don't worry, I've had kids fall apart in my high school classes before & I've never seen anyone give them a hard time about it. I'm so glad your teacher, counselor, & VP were helpful. About the DMSO treatments, as much as possible, try to stay relaxed about them. Don't forget to ask your doctor about taking Pyridium &/or a painkiller first if you're worried about pain. Those things are helpful to me. I usually take them about 2 hours before the treatment so they're already in the system by the time treatment starts. The DMSO cocktails have helped me enormously & I'll be praying for you that they or something else is equally good for you.

Wishing you only good things & better days SOON!

[SharonA]

Green...Sometimes a good melt down is just what the doctor ordered. I don't know about you but I tend to internalize my emotions, grab on to them, and do not let go until they just bubble up and explode...MELT DOWN :yikes:

You know what? It sounds to me like this situation had a good outcome. Not only does your teacher understand what you are going through, but so does the School Councilor. And then, to top it off, you found out the the Vice P has IC. Wow...talk about friends at the top. :woohoo:

Take the time given to you to rest, recuperate and recharge. :kissing:

[Katrina]

(((green the fish))) I am so sorry it really hit you hard today....don't feel bad, that happens sometimes. I am so glad your vice president at school has IC....maybe she can be a sourse of support there for you. I agree with you about the Ditropan. I hope your treatment does start going better for you. Let me know if there is anything more I can do ok? :grouphug: :kiss:

:kissing:

[Sarojini]

Green... I'm so sorry you had a bad day, but I'm glad you found there were understanding people at school. I hope you have a better night tonight!!

:grouphug:

[XoChelsey03Xo]

At least your teachers were nice to you about it. Chelsey

[icnmgrjill]

{{{{Green******** I just love everyone's responses to you! Yes, we've all had those meltdowns... nothing to be ashamed of. Sometimes it's more healing to let it out... then to keep it all in. But, wow! This is really exciting because you have not one, but two people at school who totally get it. I think you should spend some time with that principal and talk about IC. Bring your mom too. Sometimes just having someone to ask questions to is the most comforting of all. I'd be more than happy to talk with you and your mom too!

BTW... I first had my symptoms when in Junior High School and can remember the total embarassment of having teachers say "You AGAIN" whenever I asked for a restroom hall pass. Or, worse, having my mom explain to teachers that while on a field trip, they would have to stop and let me use the restroom. But, I got through it... and you will tool Best of all, maybe you'll write the best book/resource guide for other IC high school students to help them figure out how to handle it better.

[lindy lou]

Dear Green,

Like Kadi, I am a high school teacher and see kids fall apart and pick themselves up and keep on going all the time. Having IC isn't easy for me with all my life experiences and I can't imagine being a young adult facing what you do. Keep your chin up and know that there are lots of people cheering you on, at school, your family and all of us here. I can't give you much real practical experience 'cuz I'm a fairly newbie at this too. I do know that the first month was the most difficult, not only the pain but the emotional part. When I woke up in the middle of the night and couldn't sleep, I usually came here and found a lot of support and understanding. I've had students with severe Crohn's, Rhumatoid Arthritis, and Type I Diabetes and encouraging them to learn about their disease and then writing about it in a journal helped them deal with it. Writing can be healing for you and is a record of your journey. Then in a couple of months, or years, when you read what you wrote down at the beginning of your IC, I'm sure you will be surprised how well you managed all this. Have courage and remember that God loves you. Linda

[ICLori]

(((HUGS))) It's completely normal to have some meltdowns especially when you are first diagnosed with this/first suffering with it. It's really a big loss, to get used to having an illness, when you've been healthy before, and you don't know when the pain will end and you will go back to normal again. Like everyone else said, I think that you shouldn't feel bad about crying when you need to, or worry about what anyone else thinks. I think your fellow students probably just feel bad for you that you are hurting so much and they wish they could help.

I am glad you have some understanding people to help you at school, and that's really great about your VP having IC! I mean, it's not great she has IC, I feel sorry for anyone with IC, but it's great that she totally understands.

Ditropan doesn't always work for everyone with IC. It didn't work for me. It's a medicine that seems to have the most success with overactive bladder (incontinence) and only very limited success with IC patients. So I am not surprised, personally, that it didn't help you. That's what I was talking about, when I said a person has to have a lot of patience with this disease - sometimes you gotta kiss a lot of frogs before you find your prince, and it's that way with IC type meds too - sometimes you have to try several before you become comfortable. Don't give up hope!

On your next visit to the doc, tell him/her it's not working, ask to try some other meds (such as Elavil, Atarax, Elmiron etc.). I'm glad they are going to try to get you in for a hydrodistention right away. Many IC'ers go into remission for some time (a month, two months, six months, sometimes longer) after a hydrodistention, so hopefully you will too! In fact some people manage their disease just with hydrodistentions alone, and they feel comfortable most of the time! So please don't give up, you are just at the start of your journey and this is the worst part, but eventually you will get to the point where you say "hey I'm feeling just fine" and you will be glad you didn't give up or lose hope.

I will keep you in my thoughts and prayers and keep my fingers crossed for you. Just hang on sweetie, it will get better I promise, but you just have to live through a little more of this to get to the other side.

I like your quote by the way! Very inspirational, good way of looking at things!

Honey, the most important thing is just to keep breathing, keep putting one foot in front of the other. It will get better - I can't promise you which day it will get better, I can't give you a timeframe - but I can promise you, it WILL get better. You just gotta hang in there long enough.

Blessings, Lori

[windwalker]

I hope you are doing better, sometimes we all gotta let it out. Glad your teachers and all were so understanding, we know its a hard thing to go through. (((HUGS)))!!!!!! Sounds like ya got a lot of support :)
Dawn

[mayray518]

Girl, I used to cry every day when IC was bad. Now I Havent cried in years. I think I got all cried out, nothing upsets me. I feel good now and so will you. I know something will help. I am sorry for all of us but you are too young to have to worry about this. This site is a good place to come.

[Mel53H]

Hey Green the Fish! Better days ahead!

Hugs to you! :grouphug: :kissing:

Take care,

Mel53H

[VickiB]

Green, you have every right to have a melt-down. IC has a way of driving people to the edge!

I tend to think everything happens for a reason. Perhaps the contacts you've made at school today with your English teacher, councilor and/or vice principal will play a role in getting your IC under control. Or at least make living with it a bit easier until you do find a treatment that works for you.

Good luck with the DMSO Thursday.

Vicki

[Pamela Joy]

Dear Green,

[Pamela Joy]

Dear Green,
I'm so sorry for your awful day. School is such a public place, as a teacher I often feel branded. There she goes, off to the bathroom again, can't she hold it? I make sure I have a liberal bathroom policy for my students, I know it is horrible to have to ask. I'm happy to hear you've found support among the staff. Good luck.

[KristaM]

Hi Greenfish,
Your really lucky to have such great support in school. We all have those bad days. I have only recently been diagonosed so I'm still learning about everything. I find that I get overwhelmed all of the time and have my breakdown moments. Just keep thinking how lucky you are to have support from your shcool and family. Good luck to you and Big hugs!
Krista

[amanda18]

wow you've generated such a responce! It's so difficult to deal with going to school. I know both sides, when you are at work there's more than just the social pressure but also from authority i.e. your boss when you're the only hostess and it gets busy, etc. School is so hard being with your peers and a place you are abesolutely required to be and expected to cooperate no matter what with sometimes nasty teachers. You are blessed to have such lucky circumstances, the pain is bad but for many I think it is not until this website that we can find people to relate to or talk to live. Good luck with everything this week!

[Nicolat]

Oh MY!
This is the first time I've logged on, I've been suffering a while but was only recently diagnosed - what a great site! Apart from my wonderful Husband I haven't met anyone who understands, you know...you get the "but you look FINE" and "What's reaaly wrong with you?" and "Do you think you might have an STD?" but not much sympathy - it's "ONLY" a bladder after all! I've passed out from the pain, I've cried lots and lots.
It does the soul good to see the support for Miss Green Fish and I'd like to add mine - it's not fair that you have this, especially at this time in your life. The DMSO is not as painful as you'd think, nowhere near as bad as other symptoms. I was diagnosed Ditropan yesterday and was wary of taking it, but I've had a good day today.
I'm going to try Accupuncture next week. If I was told that drinking goat pee would help I'd do it!
Don't give up EVER.

[amanda18]

the std thing- hits so close to home! a year ago, before diagnosis when i was having all the pain with sex and missing school i had an EX boyfriend of almost three years think i needed to get tested and actually became controlling and jealous because he whole heartedly believed it was an std from cheating on him... accepting the insensitivity is so unhealthy. i can't pick my dad but still no man treats me that way and hears from anytime soon. i'd suggest counseling with your beau, when you are in pain you need to at least know you deserve those who love you to stand by and even if they don't understand they need to have empathy. my dad does not but i can live with depending just on my mom if need be. this day on here and talking to my mom and others in the family who love me has shown me so much. God bless!
-amanda

[tigger_gal]

((((((((((((((((hugs))))))))))))))) can we please melt down togeather... cuz I sure aint holding up really well....... posted it fishy,, about whats going on with me in share your story...
Brat

[SheriG]

I am sorry that I haven't responed to you sooner...my computer has had a mind of its own this week...and it needs an attitude adjustment!!! Your post broke my heart.I am a stay at home mom, and, remembering back to my high school years, I am not sure that I could have handled IC and all that goes with it. You are a brave girl, going to school, trying to fight it, and I am so glad that when you needed to cry, there were people right there to lend support! :) I hope things get better for you soon...please keep us posted, ok??? Wishing you health and happiness Sheri

[Nicolat]

Hey Amanda,

About the STD thing; I didn't have medical insurance for ages, until March this year and had been feeling awful for quite a while before that. I"m married (August 21st - got through the day very well, 160 guests, lots o fun!) but my chap BEFORE that was convinced THat I'd "picked something up". I knew that I hadn't been anywhere to pick up anything. SOOO frustrating! To be accuused of being promiscuous...it was just other people looking for easy answers for the condition we know as IC. My husband is fantastic, understanding, never even speculated that I might have creepy sex crawlies. I first felt this in my late 20's and had NO IDEA what it was, truly thought I was dying. And people disappeared in DROVES, I mean - no-one wanted to know, I couldn't work (at the record store) and that was all that counted to some people.
Without the support of John, or his family (mine either don't get it or don't believe in it) I don't think I would have made it even this far, I would have opted out because some days, most days it's unbearable.
Don't pay attention to any "nay-sayers", what we have is real and it's got nothing to do with all that casual sex we didn't have.
Best best best wishes
Nix

[amanda18]

:) strongest women and men are here because ya'll know we don't to put up with more misery if we can help it. this has helped my attitude with my dad so much! read more on my new story