cytotec...life

[sacausa]

Cytotec gave me my life back... but over the last few days I started getting my period and it's giving me a full BLOWN IC flare!

I have 3 exams this week: tommorow (or actually today) I have philosophy, wednesday I have a british lit exam and thursday I have a history of medicine in western society exam

yay :(

tommorow I also have a bio lab quiz and bio lab report due (and my B*** of 2 of my lab partners STUCK me with their work), sometimes I WISH IC ON OTHERS, I know this is wrong but I think it's so twisted that the "sick" one is stuck with the most work....

so now, It's 12:15am, I have to get up in a couple of hours to finish THEIR lab report which is part of MY grade... study for both my history and philosophy exams and bio quiz and TAKE MY PHILOSOPHY EXAM

aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah (ok why isn't there a smily face that's just plain screaming??!)

the complication now is that I've broken out in HIVES! I no longer take an antihistamine because I DIDN"T NEED IT! But now I have 3 HUGE hives along my spine, on my legs, head etc. and I do not want to take atarax because I KNOW it's going to compromise my ability to take that exam tommorow so I just used hydrocortisone cream that's obviously not kicking in.

oh, and last week my mom left for South Africa for 3 months and it's in the middle of the night there so I can't even call her to vent... I called my darling brother and he tries very hard to understand what I'm going through but I don't think he quite gets it....

I'm registered with the awful student's dissabilities services but they are honestly a joke.... I'm not even going to go into that, but seriously they're no help and not an option

TOMMOROW I FEEL LIKE WEARING A T-SHIRT WITH MY CYSTOSCOPY PICTURES POSTED ON IT

[Sarojini]

Whoa... sounds like you are totally stressed out and have good reason to be!! It's really unfair when we are stuck with the work of people who are too lazy to do it; the worst thing is, they'll get credit for whatever it is they didn't do anyway. I can see why you are angry and stressed.

I'm sure your hives and IC flare are at least partly due to this stuff. :grouphug:s

[aprilmae]

Benadryl makes a cream for allergic rashes. It is great stuff - along the lines of calamine lotion. I use it when I start itching from meds or coming into contact with something that makes me breakout. It works well - especially when you can't take an antihistamine.

Your situation is one reason I am against group work in school or other places.

You really have too much going on - I hope you were able to get everything done and that you are able to get some rest.

[sacausa]

thanks for the replies... I think my philosophy exam went okay and the hives are gone today (although I was talking to my mom an RN today, and she said that the fact that the "hives" were running along nerves... that it sounded to her like shingles?)

[aprilmae]

Was it painful? I have heard shingles are painful but really have no idea. I have had hives before and I just remember itching like crazy. What did your mom tell you to do for it?

[sacausa]

It was really painful but also itched like crazy.... but I wouldn't touch it because they hurt too much.... she told me that if it happens again I should go to the er

[Babs RN]

Yikes, I think your Mom might be right. If they are following nerve pathways and are painful it could be a possiblity(shingles that is). Are the lesions open? I hope your exams and lab turn out well. I completely understand the group who dumps on the hard worker and then ride your coat tails and hard work for an A. Had quite a few projects in nursing school that were that way and I can still remember those slacker people by name. If those areas don't improve, I would go to the doc as soon as possible. They maybe able to put you on an oral antiviral like Valtrex or Zovirax(if it is shingles)and I believe Zovirax comes in a cream as well. Hang in there!

Hugs,
Barb:smile tee

[ICNDonna]

My husband had shingles and I learned that one way to know that's the problem is that if you were to draw a line down the center of your nose, completely to your crotch, up the center of your back and around the center of your head until the lines meet (dividing your body in half) --- if it's shingles, every one of the bumps will be on the same side of the line. When my Terry had them, it was on his scalp and face and you could definitely see the dividing line.

If it IS shingles, please see a doctor ASAP --- there are some very effective treatments for it.

Donna

[ICLori]

Hope you feel better soon! Hang in there!

Blessings,
Lori

[sacausa]

I took Allegra last night and covered all the "bumps" with hydrocortisone cream and they're gone today..... if they happen again I'll definitely go to the doctor, thanks for all the replies :)

I was telling my "best friend" basically what I said in the top post and this is the reply I got:

"Just because something bad happens it doesn’t mean you can be negative, things happen Carla, which is the way life is, and things are not always going to be dandy. I know people whose lives are worse then yours and I have never herd anything negative come from their mouth, you have it very good compared to some people. You have it VERY good."

and

"What? Why? omg, is that health disorders. Don’t f**** start with me. GET OVER YOURSELF. I am so sick of you complaining, and talking about the whole ‘oh sorry me, I am sick’.
You are to busy worried about your own self, and feeling bad for yourself."

great friend huh?

[ICLori]

Okay, I'm kind of drunk right now because it is our anniversary and we went out to dinner and I decided to have a couple of brandy and cokes, so I'm probably going to say something I'll regret later, but - I would dump that friend. Does not sound like a real friend at all to me. I have nothing to do with toxic, hurtful people. Unless she is never like this and this is a very unusual case. If this is the first time she's been like this, maybe you guys can just talk and see what the deal is, but if she's been like this often, I'd say...get rid of the friend. Really, life is too darn short.

Blessings,
Lori

[swarr]

When I had shingles my dr. gave me a pill specific for the disease. It went away no pain. I think it started with a "Z" and stress definately caused mine!!

[Moonheart]

I took Allegra last night and covered all the "bumps" with hydrocortisone cream and they're gone today..... if they happen again I'll definitely go to the doctor, thanks for all the replies :)

I was telling my "best friend" basically what I said in the top post and this is the reply I got:

"Just because something bad happens it doesn’t mean you can be negative, things happen Carla, which is the way life is, and things are not always going to be dandy. I know people whose lives are worse then yours and I have never herd anything negative come from their mouth, you have it very good compared to some people. You have it VERY good."

and

"What? Why? omg, is that health disorders. Don’t f**** start with me. GET OVER YOURSELF. I am so sick of you complaining, and talking about the whole ‘oh sorry me, I am sick’.
You are to busy worried about your own self, and feeling bad for yourself."

great friend huh?


That is NOT a friend. Period. You are a very pretty girl and I suspect this "friend" has a bit of jealousy going on behind the scenes. Even girls that are pretty themselves will get jealous and snitty. They don't want anyone else to be pretty, just themselves. So you don't need extra stress in your life right?

HUGS,
Moonheart:angel:

[aprilmae]

I have to agree that this is definitely not a friend and with all of the stress you are under you definitely do not need this to add to it.

[miz_sunshine87]

I agree with moonheart.
Sadly, I wouldn't put it past some of my friends to say something like that either. People get mad if I ignore them, but sometimes I do it because I know I will start complaining, and then they will tell me to stop complaining, and then I will get mad at them so it is just easier to put off seeing them.

I'm feeling pretty crappy myself. I thought I was making progress, and now I am overdue on all these assignments, I lost a professor's CD (she is going to freak!), I have a cold, I've got my period which is making my IC worse, I feel as though I am about to give birth to a bowling ball, and I just yelled at my mom and she probably thinks I'm suicidal or something (I'm not, I'm just a big talker).

BUT I know I need to snap out of this, start doing some homework, try to make myself happier... maybe get a new haircut tomorrow...something, because if I don't I am going to loose all the progress I made and the IC really will get worse, and then it iwll be my fault.

I hope you can get past all this stress, and your flare goes away soon. You've come so far, I would hate it if things got worse again for you!

Anyways, g2g pee again :cussing:

feel better soon!

[glassd18]

Sorry your having troubles Sacausa!!! I hope your exams go well despite how you feel. I'm home today because I was too sick to make it to work this morning. Bladder is killing me. I'm trying to put myself together to make it to work right now ugh. I know how you feel!!!

Di

[sacausa]

So the exams went well! I got an A+ on the philosophy exam and a B+ on the biology exam (which is very good considering the class average is 50!)

I'm no longer friends with my "best friend" she acutally ended up being the one to say she no longer wants to be friends with me, and well I didn't argue.

[sacausa]

oh also wanted to add that I got a B+ on the history of medicine class which I'm happy with since it was the first exam of the semester and an A on the british lit exam.........

oh and most importantly my FLARE is over, but I can't wait for Friday which is the beginning of my Spring Break to just deSTRESS!

[glassd18]

Good for you Sacausa!! Congrats!!! To bad about your friend. Through experience I've seen friends come and go. It's a cycle or something!!! It's always a loss though!!

[yvette]

Congrats Kiddo, you earned it!
As far as the friendship thing...relationships come to end, sometimes,its not just with boyfriends....I'm sorry tho....it sucks just the same...
I'm telling you, you'll find friends who won't care about your IC or this or that...or what ever comes with it.....I speak from experience.

I cut all high-maintenance people from my life...I figure there's only room for one hi maintenance person and that's *me*! :lmao: It's funny, I'm finding that we all have problems and we all have different things to deal with....and I've got friends who have kidney problems (pain, pain, pain) and colitis problems (bleeding, pain, being bedridden for days or weeks).

You'd never know from looking at us, or talking to us....but's it there and well what can you do? Do the best you with what you got...the right people for you will get it and that's all that matters.

Again. Congrats! Rest and Relax :smile tee

[Firestarter]

wow... all your stories sound like mine!

Hi,I'm a 34 yr old man and sufferring from IC for the last year... God and you all only know my pain and anxieties. Reading the stories about how others dont want to listen to our pain reminds me of how some of the people in my life have back off and dont want to listen to my agony. I bare with my pain every other day and the frequency is daily.

It's tuff but I know that soon I will find a solution like many of you have. I'm currently taking Elmiron:loco: which does nothing, bladder installations which work momentarily and for anxiety Hydroxyzine Pamoate. I am also trying supplements with dinner like Gloucasamine w/ msn, quercetin as recommened here in the IC network by other patients.

I'm really trying to cope and have a normal life again and stay positive.

Thank You all for posting your wonderful and insightful threads.

By the way does anyone know where can I get cytopec or Cyclosporine-A?

:confused:

[glassd18]

Hi Firestarter,

You are definitely not alone!!! It takes a while to learn about what we can and can not tolerate. I'm very sensitive to chemicals in vitamins, supplements, medications, and food. I have tried MSM tablets, but can not take them as I flare. I've tried the liquid without preservatives as well and flared from that too. I take Cysta Q, and Cystoprotek although right now I'm taking only Cysta Q. I'll add the Cystoprotek back in again soon, but of course you can't take these both at full dosage because they both have Quercetin. I take 2 Cystoprotek in the am, and 1 Cysta Q at night, and this combo seems to help a lot along with the diet. I hope you find relief soon.

[mayray]

SAcausa, I love your T shirt. I grew up with the Beatles, saw them in concert when I was 10 years old. Well Ill end right now is making me feel old.

[sacausa]

aawe thanks! I got it from Urban Outfitters.. .they have great shirts like that :)

[kadi]

Hi sacausa,
Hmm, your friend's comments sound a lot like something one of my "friends" said to me when I first got sick. And she said it to me in front of two other friends during dinner. She probably didn't expect me to tell her what I thought of her comment & her perfect little life, but she did turn gray by the time I was finished. We didn't speak for a year, but have exchanged notes of apology since. I don't think I'd have much to say to her even now though.

One thing about IC is that it does "sift" out the true from the weak friendships. It tests not only our own character, but that of those we are close to. I can honestly say that my friendships now are 10x better than before IC, so while the losses were sad at the time, I'm over it now & am very happy with the people who have stuck by me.

Hang in there with school, summer's right around the corner!

[sacausa]

That's awful Kadi! This particular friend and I have actually worked out our differences in the mean time (after not speaking for two months)... we had been best friends for 5yrs without any serious fights so I just think we reached a boiling point where we both needed to get things out... since then she's been much more supportive etc. and I have also been more understanding of her (since she has known me since before I got sick, there were also adjustments for her which can be easily over looked).... Anyhoo, so that's my deal.

[Briza]

Hey, you changed your picture! Looks great!
Are you still taking Cytotec? How is that going?:)

[glassd18]

I'm curious too Sacausa, and nice picture too pretty girl!!! I haven't even attempted to try it again after my first attempt.

[sacausa]

I've been on Cytotec now for almost a YEAR! It's been amazing, I'll write a detailed update soon... but right now I'm in the process of stopping Neurontin, so soon I won't be on any medications for IC/IC pain except the Cytotec. I hated the cystoscopy with hydrodistention, but lately I've been curious as to what my bladder looks like now. Before, my bladder was covered with pin point bleeding and glomurations*howeveryouspellit so I'm kind of interested to see how it has recovered. I do know though, that I can't skip a dose of the Cytotec, because if I do, I feel it!

[Briza]

That's great! I'm so glad it's worked well for you. Do you think you will always have to take cytotec, or will there be a point where you can try going off of it?
Hydros:mad: not fun. But I do also wonder what's going on in my bladder compared to my first one in 2004, since my symptoms are so much better now. But you'd probably have to hog-tie me or put me in a straight jacket to get me to the hospital to have one:lmao:
Keep us posted on your progress. Always good to hear a success story, especially with one of the experimental meds. :)

[sacausa]

I know using Cytotec to treat IC is experimental. However, I don't think people realize that Cytotec has been around for AGES to treat stomach ulcers by reducing acid etc. It's actually been around much longer than Elmiron. But I'll get off my little soap box now ;)

I think I'll probably have to take it for the rest of my life.... I can't miss a dose without feeling it in my bladder (insane burning/pain) so I'll happily take it forever..

I had a moment last night where I looked at my hand and there were only three pills that I had to take... One for my heart, one for allergies, and one for IC. It was an amazing experience because two years ago, I had to take 11 medications everyday (Elmiron, Ditropan, Ultram, Neurontin, Menest, Depo Provera, Allegra, Atarax, Bentyl, Toprol for my heart, and Levothroid for my thyroid!)

Quite a difference if I must say so myself :)

[vm]

(Even Elmiron has been around since about 1966 - used in Europe as an anticoagulant... :) )

[Moonheart]

I can tell that one for sure because even if I have a pore that gets overly cleansed it bleeds...and bleeds....and.....

you get the picture.

I have sores that just don't heal for weeks now. But if it works..... *sigh*

[glassd18]

Sacausa that's great!! I wish it would have worked for me, but I just had terrible side effects that I didn't tolerate well...diarrhea being the main one. Sorry for the description!!! I was just prescribed Neurontin, but haven't picked it up yet. Is there anything you can tell me about it? What to expect etc... It was prescribed for me from the neurologist for my back and hip pain at bed time.