Frustration

[LithEruiel]

I'm either in a normal flare now, having a bad reaction to a new medicine (Vesicare) or just my new med isn't working at all and I'm having even more frequency than usual. I have school all day on Mondays and Tuesdays and have to sit in hard chairs all day which just seems to make everything worse. I got to school extra early today so I could sit at one of the more comfortable desks...btw, where I sat today was my original seat where I sat the first few weeks of school - I got there early so I could get a seat in the front by the door incase I needed to use the restroom during class and didn't want to be a disturbance. Anyway this girl has been taking my seat so I've been sitting a row back in a different kind of desk...which was fine at first, but then I realized it was making me hurt more than the other kind of desk (it's a harder more solid plastic). So I decided today I'm taking my original desk back, so I did and the girls were complaining about it. I said to my friend next to me (who I had talked to the day before about the desk situation) "I'm so sick of this, I have a serious medical condition, I'm going to sit where I want. I'm not trying to be a *****, I'm just trying to not be in pain all day." and she said "I know. And the thing is that these were our original seats." And the girls behind us were laughing at me. Ok. IC and PFD are not funny and if they had them for even two minutes they wouldn't be laughing. Of course these girls are like 19 and act like they're still in high school (no offense to anyone, I didn't act that way when I was 19 so I know not everyone does). It's so frustrating. All this over a seat that I had every right to sit in.

I'm thinking one of the pillows they sell on this site would help me, but I feel ostracized enough as it is. I already go to the bathroom on each and every one hour break and sometimes more than that (today and yesterday it was very hard to wait one hour). I proudly wear my IC Awareness bracelet and I'd gladly have an intelligent discussion about it with anyone who wanted to know more about it, but these girls are incapable of intelligent discussion.

[Mothergoose]

Sorry you don't need that on top of everything else. Just go early take you seat and ignore them, letting them upset you gives them power over you. Take your power back, and it is nobodies buisness if you pee on every break, it is not their buisness it's yours.

I feel for you I can not make an hour, I remember being accussed of cheating on an exam in college because I couldn't make it through a test without going. I knew nothing about IC in thoughs days. In highschool our classes were an hour and fifteen mins long and I always had to ask to leave class to go, this one teacher in cooking class just would not let me leave the class to go, boy if I could go back and give thoses people blasts now I would. But only in my mind it is not worth it.

Chin up you will get through this. MG

[leelee88]

Hang in there.. You have to do what have to do!!

[VickiB]

I agree with MG & Rhonda,...ignore them and do what you have to do. I know, a whole lot easier said than done! Hopefully they'll grow up, -someday!

Vicki

[LithEruiel]

Thanks everyone.

About the tests, that always worries me whether I'm going to get through the test or not. So far our tests have been short, but I know boards are very long! I went to their website though and it says you can take breaks, but it uses up your time.

It just bother me that these girls are in nursing school and are so insensitive. One of them works in a nursing home, I think.

[Mothergoose]

Sometime people in the health care feild can be the most unsensative, I by no means mean all of them, but some, maybe they just get burn't out by what they have to deeal with on a daily basis. but if they girls are still in school and that insensative then maybe they should be looking for a new career, or at least one that dosen't put them in contact with the public. I would hope that by the time they are finished school they will have grown up considerably.
Hang in there MG

[LithEruiel]

Yeah, I've definitely had insensitive and rude doctors and nurses (I've also had wonderful doctors and nurses of course). Learning how a nurse is supposed to act (a lot of it is common sense and general consideration for others) always makes me think of the nurses I've had that were judgmental, lectured me, didn't take my problems seriously or just plain didn't do their job. I think the numbers of those types of nurses is only going to grow because of the difficult economic situation. Everyone knows there are always nursing jobs and everyone knows jobs in healthcare have security, so a lot of people are going into nursing for that reason - I mean that's why I'm in it! I already have a degree I can't find a job in, so I need a program that's short, relatively cheap and one where I know I'll be able to find a job after graduation. I never wanted to be a nurse, but I also care about people and about doing a good job (in any job) and I know what it's like to be chronically sick and desperate and hopeless because no one knows what's wrong with you or really takes the time to find out. Unfortunately most people can't or don't emphasize it seems. Of course, most of the people in my class are at least reasonably nice, mature and intelligent, but of course there are some who aren't.

[sailawaygrl]

Don't worry about the nasty people in class. Hopefully you won't have to deal with them for long.

I regret to say that when I was in my early 20s I worked with a girl that always called out or went home due to migraines. We all scoffed at that and thought she was over playing it for sympathy and to get out of work. Well, at 27 I was suddenly hit with migraines, (inherited from my mother) and I certainly learned a thing or two then! I have always remembered that and tried not to repeat that same judgement on others. Then on '07 when IC entered my life I am sure there were those at my work that thought the same. Luckily, my boss would set them straight if she heard any of it, she always said, I wouldn't wish what you have on my worst enemy Sandra! Unfortunately for me, my job was not the kind that was in anyway able to work "around" my IC and I finally had to leave. I hope to return to work in some capacity one day, or even volunteer in some way.

So, I am sure oneday they will realize in some way how wrong they were or maybe not. What matters most is that you and your close friends know and care. Hard to keep in mind when those moments occur I know. You are strong and you will make it!

Sandra

[LithEruiel]

Thank you Sandra. I'll be with the same people for the next two years, but it's a hard program so who knows how many will make it, lol. We already lost one (just started in August).

[LithEruiel]

Well to add to things my great-grandmother is in the hospital - she's 93. She had been falling and was having pain in her ribs so my mom and gram took her to the ER. Well she does have a broken rib, but not only that - she had a heart attack! It was probably a week ago - women and the elderly can have only very subtle signs of heart attack I guess, so no one knew. Now her blood pressure is very low which explains the falls. She's in the CCU. She has worsening dementia and I don't see how she's going to be able to live alone anymore. It was always her biggest fear (it seemed to me anyway) to get dementia (her father and sister had it) and to be in a nursing home. It hurts to see her this way. I don't know how to say it better, but she was like a friend to me, not just a grandparent and now she's not herself anymore. It's so hard.

[LithEruiel]

I really don't know what the point of going to school is. I'm probably going to be unable to work in a few years anyway.

[musiclover]

Ashley, I predict you're going to be feeling a heck of a lot better in two years, not worse!

[LithEruiel]

why? 63% of people with IC can't work full time...

[Stella1609]

Where did that statistic come from? That seems very high to me . . . I work full time as a retail manager in a department store (a very intense, highly stressful, highly physical job at times) and I also work part time at home. I've had IC since I was too little to remember, and I get by. Remember, a lot of IC patients, even those who aren't helped by medication, go into spontaneous remission. We just don't know enough yet to predict how it's going to affect someone, but it seems much more likely for it to get better, and not worse.

[Mothergoose]

LithEruiel

I know you are getting down about IC, and are tired of feeling this way, but truely many many people do get better, not that it ever goes away or that you can ever let your guard down completely. But I am sure you will get to the point of being able to enjoy life again and yes work. I am sure your schooling is stressful and stress dosen't help the situation. But don't give up, it just often takes alot of trail and error to find the right treatment for you.

I am proud of you being able to still go to school with this. MG

[enots1558]

I did not attend college until I was in my 40's so I always sensed and saw at times the young kids making fun of me in class. I spoke up and participated and they use to get mad at me because all the cared about was biding their time until class ended. I sloughed it off because I knew why I was there and was so grateful to be in class and learning and I know one day they will wish they had paid closer attention. Do what you need to take care of yourself and ignore everything else and be proud of what you have to go through to be where you are and that you are doing it! Best of luck!!!

[duana]

ashley,don't get too down.you are very young and lots of times ic never gets worse.i still have a lot of faith that science will come up with a cure,if not a cure but something that will at least treat the symptoms of ic so we can all live normal lives.

as for the girls at school,don't pay any attention to them.you deserve to be in as much comfort as you can be in.i give you a lot of credit.here you are with an illness and lots of discomfort and going to school and here they are laughing.how childish!these girls may need a course in compassion for others!!remember,there are rude people everywhere.just ignore them.you did nothing wrong.i hope they grow up before they get their nursing license!!!!!!


hang in there!:smile tee:angel:
duana

[jvr]

Hi Ashley,

Things will get better for you and you're going to be a fabulous nurse! That 63% stat in regards to IC patients unable to work full time...I'd like to know how long ago this was done. I was diagnosed in 2001 and there are more options available today than there was back then. There are some great researchers who care and are working on helping us find better treatments:) There are clinical trials on IC happening right now. I just heard recently of a very well known pharmaceutical company that is finalizing test sites in preparation for an IC clinical trial. I honestly believe you will find more answers. I know it's hard to remain positive when we're feeling bad:( Hang in there:) You seem like such a caring and compassionate woman-we need more nurses like you! Don't give up:)

Jill

[LithEruiel]

thanks everyone.

The stat is from here: http://www.ic-network.com/whatisinterstitialcystitis/#epidemiology

Tomorrow we have to do abdominal exams on each other and I'm going to have to tell them I can't have people pushing on my bladder. Not sure what my partner is going to do to test out of this section (we have a day of practice with our partner, clinicals where we practice on the patient, and then after clinicals we have to show our instructor we know how to do it by doing it on our partner again), but she's not doing it on me!

[LithEruiel]

I'm just so frustrated that there's nothing that can be done for this frequency. The Elmiron helps with everything else but that (which I know I'm lucky I don't have pain anymore). I've had so much trouble taking OAB meds. I just have to live with going allllllll the time and everything I can't do because of it.

[maryla]

Ashley,

I'm really frustrated too for one, I just basically wrote a whole book here and lost it???

I have had IC for many yrs, since my late teens and one of my biggest symptom was freq. I guess that if it has always been that way, I didn't think much of it. However, 5 yrs ago it all came on and has never left.

I didn't start college until I was 34 and some how with all the freq, I made it and even graduated with honors.

I'm 53 now and was only d'x 5 yrs ago with IC and I'm one of those who had to quit work and go on disability. I miss work so much!

I have been having a horrible week. Pain, spasms and everything that goes with IC. I know your frustration!!!! I also feel so depressed right now! I've been in bed 85% of the week, but I hurt so bad and I just feel crappy all over!!

Just give it more time with getting adjusted to the freq. I'm sure after a while it just becomes the norm.

I see you live in Ohio........go Bucks! i live about 30 miles North of Dayton.

Hugs and blessings

[LithEruiel]

Maryla,

I'm sorry you had to quit work. I worry that I'll have to also and will be doing this for nothing. I'm not married so it's like what am I supposed to to if I can't work? I live with my mom and was hoping I wouldn't have to forever... I'm already $30,000 in debt for a degree I can't use and when I'm done with nursing school I'm going to have $17,000 more. I'll probably still have to live here until I pay off my loans at least, plus all the credit card debt I have.

I've been dealing with the frequency since April 2008. Also before I had IC, I would get up at night a lot to go when I was on Effexor...this was from like 2003-2007. Sometimes I wonder if Effexor started my bladder problems (never had any before then) and then the UTIs I had in 2008 just really exacerbated it until I had full blown IC.

[suncaro23]

Ashley,
Please do not consider leaving school because of IC. Your education is really important, and you cannot predict what will happen with your symptoms. With IC, I have managed to work full time and get a Master's degree at the same time. There were many times where I left class every twenty minutes for a bathroom break, but I made it through and am so glad I did. Right now, I am working part time by choice, and it keeps me in the regular world that is not all about my illness. Please stay with it. I can't imagine that finishing school is something you would end up regretting. Good luck!
Dawn

[LithEruiel]

Thank you Dawn.

One of my problems is...a big problem...is that I don't want to be a nurse. If I did, I would have went to school for it when I was 18 and wouldn't be having the problems I have now like massive debt and no insurance. I went to school for what I wanted, but I couldn't do anything with it. Now I'm screwed. I don't feel like I'm cut out for dealing this closely with people, I'm very awkward... I'm doing well in school in the academic part of it but I'm not good at doing the actual skills. It's very frustrating...

[suncaro23]

Ashley,
So sorry I dropped the ball on responding sooner to this. When I read it, I tried to come up with something wise to say, but I really couldn't come up with anything that I felt would be helpful. I'm sorry that you are in a bind like this. Have you made any decisions about what to do?
One thing I can say is that when I first started out in my career as a teacher, I was really terrible at it, and I'm not kidding. My first year was so incredibly difficult, and I was teaching middle school, one of the toughest ages of kids. But after that I really rallied and have been doing it for a number of years. I am quite successful at it now, and feel good that I stuck with it after that first awful year.
I'm not trying to talk you into anything. You know yourself and what will make you satisfied in your career. I just know that sometimes hearing others stories can give you insight into your own.
Do you think your awkwardness is somewhat a result of having to deal with IC symptoms as you go through the classes?
I wish you the best with these big decisions.
Dawn

[ICNDonna]

There are many things you can do with a nursing degree that doesn't involve bedside patient care. The first one I think of is diabetes education; you might also think about nursing management.

If you truly don't want to do this, I urge you to talk with your counselor about transferring your credits to another field.

Sending gentle hugs,
Donna

[LithEruiel]

Thanks Dawn and Donna. I'm staying with it for now. I do think I'll do better with other aspects of nursing than hospital work. I think I would like to work in a doctor's office (I'm actually thinking of going into urology) and I know that there are even other areas of nursing that require even less patient care. I just think it's going to be hard for me to get through the next two years. The school I go to is in a hospital, so 99% of our clinical work is in the hospital. A girl that is graduating from my school in December was working as a nurse's aide on my floor one day when I was in clinicals...she told me it gets better! We're not doing much right now, just basically what the nurse's aids do and we also practice our assessments on the patients. I think it will be more interesting once we start actually doing what the nurses do.

I don't think my IC affects what I'm doing on clinical days. I have less symptoms when I'm up doing things than when I'm sitting in class. And on clinicals it's no problem if I need to take a couple minutes to go to the bathroom. In fact, I usually have the most symptoms on days when I have class because I'm sitting from 8:00-3:30 except lunch and short breaks and don't have much to distract me from the having to go feeling. Even after class I still have more frequency for a few hours before it calms down.

I'm just a generally awkward person. I'm not good with meeting people and starting conversations with people I don't know...I have gotten better in the last several years from working in retail and I've always been better with people older than me than people my own age or younger, which is good since all of my patients so far have been elderly. But of course we have to deal with really personal stuff like giving baths and it all just makes me nervous. I don't have kids or anything so I'd never given another person a bath before this! I just feel right now like I'm going doing a good job at all with the patients, but I guess it'll get easier as time goes on. Some of the people in my class have already been nurse's aids, so it seems so much easier for them.

[suncaro23]

Sounds like you are still a bit frustrated, but thinking of some good options for yourself.
I know what you mean about sitting down and feeling more frequency. I have that same issue. It is a bad feeling for sure, but even if you have one or two people as a support system, it can help.
I hope you have a nice relaxing weekend and feel better about things on Monday.
Dawn

[LithEruiel]

Thanks, I hope you have a good weekend too.

I'm going to my doctor I see for IC in January (I don't have insurance and she charges at least $120 for an appointment), so I have a lot of things I want to talk to her about. My boyfriend said he'd go with me because he knows better than anyone how upset I get about my IC issues.

[bluetou]

Hang in there, keep positive. Negative thoughts will only empower your IC symptoms. Stress alone breeds IC. SO try to not let those girls get to you, hold your head high and stay positive.

Last year I took time off to get my IC under control and I am back to work. I chose to go au natural, not taking any meds and I am doing very well. I follow the IC diet. (and knock on wood...doing wonderful!!!) :angel:

I am quite blessed to have a very flexible job (literally)...I teach yoga so I go in and I teach my class 1.5 hours, and I can do it without the urge to urinate (whereas before I was going every 10 minutes).

Do not let the numbers (stats) rule how you live. Live free, live alive and allow for a lot of positive thinking, you'll be a fine nurse. :)

Peace
Blue
:pray:

why? 63% of people with IC can't work full time...

[LithEruiel]

Thanks :) That's so cool that you teach yoga. Does it help with your IC?

[bluetou]

:) I love what I do, and yes it does help a lot with my IC. Yoga has healed more of my ailments then I can mention.

A few being...I had two herniated discs, I did physio...acupuncutre, massage therapy (all which contributed to my healing) but I was still left in pain ...YOGA was the only thing that brought healing to my back and I live free of back pain now.

When it comes to my ic, stress triggers bladder pain for me almost instantly, a little yoga deep breathing and doing a few postures I am feeling no bladder pain. Its truly amazing how YOGA has given my life back.

It has to be the right Yoga. I teach KRIPALU HATHA yoga a very gentle style of yoga, focussing on deep breathing, slow moving postures, striving for spiritual mental clarity, living in the moment, and allowing for positive living so the body tries to live free from negative energy. It is very empowering.

You should try it, I am sure you would enjoy it. :)

Peace
Blue
:pray:

Thanks :) That's so cool that you teach yoga. Does it help with your IC?

[LithEruiel]

I have a video that I tried a little bit, but one of the problems was that I have carpal tunnel and I can't put my weight on my wrists. I have some exercises I can do and I have a ball to squeeze, but I forget to do them a lot. I wish I could make my wrists/hands stronger.

[bluetou]

Yoga is very good for carpul tunnel when done correctly. I have a lady in my class who had very bad carpul tunnel and she is pain free now. I also have two elderly ladies in my class who also suffer from carpul tunnel and their wrist issues are improving because they are strengthening the area at their own pace through the yoga classes. Plus each posture that places pressure on the hand area brings a significant amount of blood supply to the area, creating better mobility and less restriction for their hands. (in moderation)
When they do a posture that calls for a flat hand you can use your knuckles for example, also when doing down dog, I suggest not to place pressure on the base of the hand but on the upper part of the palm of the hand just elow the fingers and then take the pressure of the wrist area. When in postures make sure the hand is straight, and slightly facing downeard, when the fingers face upwards it places discomfort to the nerves leading into the hand.....gosh does this make sense...it is so hard to explain....so much easier to show.....I am sure if you did a UTUBE search on yoga and carpul tunnel you could find some great videos to help you out!! :)

Maybe try that...??

Peace
Blue
:pray:

I have a video that I tried a little bit, but one of the problems was that I have carpal tunnel and I can't put my weight on my wrists. I have some exercises I can do and I have a ball to squeeze, but I forget to do them a lot. I wish I could make my wrists/hands stronger.

[LithEruiel]

Thanks!! That's great to know. I'd love to take classes, but I can't really afford it. Maybe when I'm done with school.

[Stella1609]

Ashley, I've really enjoyed Pilates. A lot of the same principles as yoga, but more core-centered, so less stress on the wrists, and it was easier for me to get into since I'm not very flexible.

[LithEruiel]

yeah, I've noticed that the ICN shop has a DVD with pilates for pelvic pain. I'd like to try it too, but hmm, I have lots of exercise DVDs I don't do! I think I'd have better luck with a class.

[77amy]

I really don't know what the point of going to school is. I'm probably going to be unable to work in a few years anyway.

Don't give up. I thought I would have to be on the i.c. diet and still occasionally having flares for the rest of my life. And i got better. You can't let your illness define, or limit you. You should stay in nursing school if that is what you want to do. After all you have had to deal with, with having I.C., you will have more compassion and offer more caring, compassionate care than alot of your insensitive classmates.

[LithEruiel]

Thanks Amy. I have thought of that. There are a lot of mean nurses out there that don't understand what it's like to be chronically sick.

[LithEruiel]

Well now I have more problems. Back in February I was working between two different stores and a pharmacy manager shoved me and I talked to a store manager about it. The whole thing ended up getting blamed on me (they thought I was lying) and they said the pharmacy manager was justified in being upset with me because I wasn't good at my job. Well after that I got sent to a third store which I ended up loving, but my hours got reduced down from at least 24 to 5 hours most weeks because that's all they could give me unless someone was on vacation or another store needed me. Well obviously I can't live on $30 a week, so I filed for unemployment and received it since my reduction in hours was no fault of my own. So I've been doing good because when I work, the money I make gets subtracted out of my unemployment and I get the difference. Well a couple weeks ago I was officially transferred to the third store's payroll - even though I've been working there since March, I was still on another store's payroll. And they found out I was getting unemployment and didn't understand why because I was working and I'm only available Thursday, Friday and Saturday (they're closed Sundays) because of school. Now of course even though I'm available those days they're still only giving me one day a week (5-9 hours). But anyway they asked me about it and I panicked and said I wasn't getting unemployment anymore because I didn't know what to say. Well now I can't keep filing for unemployment because I told them I wasn't, but how am I going to live on 30 dollars a week???????

[Mothergoose]

I am not sure about the rules in the USA, but I don't think it is any of there business if you are on unemplyment as long as you are not lieing to Unemployment about what you are doing. In Canada you can not go to school and collect umemployment.

Or you may want to go back to the person that asked you and tell them they took you off guard the otherday when they asked you about it and tell them what has happened and why you are on unemplyment. The last place doing your payroll muct have known and I am sure they would not want to have been doing anything wrong.

I don't think you are cheating the system you are decalring the income you get so unemeployment can take it off what they give you.

Good luck MG

PS look up the unemployment rules on the web site and print out what pretaines to you, and take them with you to work.

[LithEruiel]

Thanks for your advice. At least in my state you can get unemployment while going to school if you're in an approved training program (which I am) and you still have availability to work. I was only working part time to begin with at this company and I have the ability to work the same amount of hours as before my hours got cut...and I do when someone's on vacation or something.

It's my own fault I got into this mess. I knew I shouldn't have lied but I felt bad that they had faith in me enough to transfer me and then I was collecting unemployment... I don't know. I feel so bad about everything.