How many with IC work full time?

[dking2]

I hope this is not an inappropriate question, but I would like to know how many IC patients are able to work full time? Has a study been done percentage wise?
I was diagnosed in Sept 2008, I also have some other health problems. It has been difficult to work for a long time now with chronic pain, but the IC is too much to take. I am lucky I have an office job where I am in charge and can go to the bathroom whenever I need. I bring my heating pad. I have followed the diet sice my GP first told me he thought I might have IC and sent me to the uro. I had the cysto/ hydro. I had 2 instills that were awful and painful, and am currently taking UTA and elmiron.
I do not have insurance coverage right now , and can't afford anymore instills until March (will have new coverage).
It is just really hard. I drag myself to work , and I know I am not as productive as I want to be. Then I go home each night and on the weekends and lie down to recover from the workweek in order to do it again. My family has to have my income, but I wonder if I will ever really improve while working.Also my company is small and FMLA does not apply. Thanks for listening

[ICNDonna]

I'm retired now, but I did work full time for almost twenty year with IC.

Donna

[kadi]

I work full time as a teacher. The first 2 years with IC, I used up all my sick leave and then plenty more so lost a lot of pay, but still worked anyhow. The next 2 years I worked full time & lost no pay, stayed within the 10 days sick leave per school year. This year, I'm having a harder time, but am still working...and still love being a teacher:)

[asIshallbe]

It is extremely hard!!! I do sit for 8 hours. To some that may be good, for me, I hate it. Sitting for this long hurts so bad. We are also a smaller co. so FMLA does not apply. My family need my income as I am the bread winner, so I am trying to hang in there as much as possible.

[leelee88]

This is what I say to the people who work with IC :bow::bow::bow: To YOU!!!

I was working full time before IC hit me.. I am hoping I can go back there one day!! But as of right now I just do not see how it would be possible.. I am one who feels I have to give 100% at work and I know I could not do that right now..

I commend Any ICers who work PT, Full Time!!!

[rosezclark]

I work fulltime with IC and it’s not easy. I have days, weeks; sometimes even months that I just want to quit, sell everything, give up my place and move back in with my mother. But I just try and keep moving forward. I do the same thing as you; I work during the week and rest on the weekends.
From all the research I have done, working (especially a desk job) won’t make your IC worst. They say IC gets worst over about 5 years and then levels off. But everyone is so different! It’s so hard to say what will help and what will hurt us.
Hang in there, you’re not alone.
:angel:

[joann2008]

I work full time and my supervisors have been great. They suffer with their own medical conditions so have been extremely understanding. I am a therapist so some days are hard for me and on those days I switch my therapy appointments to other days for the sake of my clients (adolescents). They (clients) have noticed a change in me (lost weight, looking tired) and have been understanding as well. Although work increases my pain, it helps with my happiness which in turn works out. I have used all my sick time in the past 4 months for my entire year but sometimes I am able to switch days i.e. work Saturdays and get off on a Wednesday that is bad. It is hard to work, but I think it has been worth it for me. I would like to add though that I have a mild/moderate symptoms so the real discomfort comes with the flares. The rest of my days are manageable for the most part!!!

[ABliske]

I have been at my admin job 8 years. Three with IC. The last 4 months I have been working only 32 hours per week, but I will have to start full time soon. I also have a 6 mo. old baby. I feel just like rosezclark with wanting to sell everything and move in with my mom sometimes. I can't not work and keep my house with my husband. It's so hard!
I read once that about half of all ICers do not work. I have not been doing well at my job and was totally hurt and cried after reviews several times. I was pregnant and taking 15mg of MS Contin and my old boss was demanding to know why I couldn't consentrate. I still think I was doing fine and her notes and things were scattered and she wasn't training me well. But what can you do. I've looked for a new job. I desperately want one but there isn't much out there. I had a great reputation before they tried to make me a customer service assistant to someone I did not vibe with at all. It is hard for me to even look at her now. She has no assistant now and I feel sorry for anyone who ever does work for her.

[mary124]

I was dx with IC in 1992 after more than a handful of years trying to find doctors who could figure it out that was wrong.

I work full time with the State of Texas. Still have 4 more years to go and then I can retire--I will still be too young so as long as I can work I will.

Most days I feel great, but there are days that I don't and when I'm not my boss doesn't say nothing as she knows that on the days that I do then I give more than 100% (which is more often than not).
I can have my heating pad here if need to.
For the most part my bosses have all been really great, I think I had one supervisor that really couldn't understand why I was out all the time, (either with this or something else); but we all think it was because she was 65 years old and never really sick in her life.
Working with IC can be hard, especially if you have little ones to take care of.

[kuntrygurl78]

I work full time when I work. Im out of work due to the economy, not IC.

[sailawaygrl]

Not many in my company are labeled full time we just work the hours. I work as much as I can. Right now I am having to force myself to not push too hard on the days I feel well to make up for the days I don't. I am so sad, I loved my job but now it is so hard to just get thru the day and not make mistakes that can't be fixed-hopefully before anyone sees them. When I am not working I am home, in my jammies and usually collapsed asleep wich is taking a hard toll on my marriage. I feel so guilty on all fronts of my life. I am seriously considering counseling-I am so close to the breaking point.

So that is my take on working with IC. Sorry for the ramble.

Sandra

[snowgirl]

I worked 21 years full time. I had about 2 sick days a year. At my employer you whether ft or pt only got 4 sick days a year. After you hit the 4th sick day it is an automatic counseling session with the boss and union rep. It doesn't matter if you have md excuses for those sick days. One sick day- one point. They use points for discpilnary measures. I never got to the 4th point. If you are tardy 1/2 point no excuses allowed.
I found out yesterday if I want to go back to work and have a chance at keeping my LTD and it is complicated. I must go back to my former employer. Well, there are no jobs there for me that I can do with IC. So, I guess that is the answer to that question. I work anywhere else but one of their satelittes then I lose my LTD private employer policy. So, they kinda yes they do have me in a corner. VN

[3girls]

i teach 2nd grade full time and also have 3 girls under the age of 4. if i could afford it i would quit teaching for a while. no one at school understands and just thinks i lay out of work especially when i have to miss days because of sick kids too. plus my principal has no kids and doesn't understand "FAMILY' we are expected to be at every function and looked downupon if we are not. so that stresses me out on top of many other things

[dking2]

I hope everyone has the best day they can at work. I am so glad it is Friday, and I can lay down with my heating pad all weekend. My children are 12 and 9 so they are not as high maitenance as when they were younger .
I just wish I could take some time off and try to heal. I am worn out from the constant pain. It just tears you down body and soul. Thanks.

[Julie B]

I worked full-time for the past three years, but I was a remote employee. Thus, I did most of my work via computer and teleconference. I believe many companies are looking into this as an option these days to reduce their own overhead.

Just a thought for those of you who seem to be at your breaking point. The state of the economy doesn't help much I am afraid........

[Kara Isabel]

I work part time at the office, part time at home, I'm self employed with my DH so that allows me the luxury to stay home and work if i need to (most days) unless other people call in sick, then I'll have to go I think the remote-employee, or contract employee is a good option for us, or anything you can do at home as a service (if you have special skills) is something to consider.

I do not think I could work at an office, even my own, 40+ hours a week,I hope its just temporary, but kudos to all that do work fulltime!

[Dolphjoy]

I work full time and this is my 12th year as a special ed teacher.

[yvette]

I just finished a 45.5 hour work week (including 5.5 hours past Saturday). But there are some things that make it easier than most:

I work for myself (freelance), but I show up onsite to the same place. It's only a 7-minute drive each way. If I had to commute into Boston, omg I wouldn't last. Some people have to get up at 4 or 5 to prepare to get into Boston and surrounding for 8 or 8:30....no thanks, I'm all set.

I don't have to be there til 10:00 am. If I'm late by 15-20min, its no big deal. If I'm later than that it's still no big deal (but I usually call saying I'm on my way)

I don't dress up for work (jeans, sneaks and tees) and on those rare occasions where my a$$ is kicked: I wear gym/jog/sweatpants.

And I don't have to sit up straight and all proper...I have my feet up on top of my computer tower.

For a small time, I decided I didn't want to work Mondays so I could rest up and get a 3-day weekend. :)

[Nancypt]

Hi,
I work part time as a Physical Therapist but would work full time if they had a position. Right now I am glad just to be employed
Nancy

[sickofmybladder]

I work full-time as an admin - (40+ hours per week) - I also am the primary bread winner in my family - so I'm stuck. The commute is about 45 minutes one-way - and the job is very stressful. I try to get up and move around as much as possible, I use those sticky heat pads (I am not allowed to have my actual heating pad at work) - and drink lots of water on bad days.

It definately makes it harder - but I am blessed with a generous sick/vacation leave policy (we are also to small to qualify for FMLA).

I keep hoping to win the lottery - so I can stay at home though :woohoo:

[ilovekittys]

i am on FMLA intermittent at all times renewed every 3 to 6 months, its so hard but at least i have access to a bathroom 24/7. its hard with bladder instill twice a week appointments u cant eat what people bring in:( plus i have an 18 month old, my day just begins when i get home!

[Krisandra83]

I worked full time for almost 6 years... and went to school at night. My last job, I sometimes had to work up to 60 hours a week.. which is what I think pushed my body over the edge, and I am now on medical leave. I am not sure if I will ever be able to work full time again.
I also had a desk job.

[jen74]

I use to work full time and was as healthy as a horse, and then I got sick with numerous health issues and now the IC which has caused me to not be able to work and now I am on disability. I would love to get well enough to go back to work. I miss my job.
Jen

[snowgirl]

Hi,
I work part time as a Physical Therapist but would work full time if they had a position. Right now I am glad just to be employed
Nancy

Nancy

Here in MIchigan that is the number one health job right now with the most openings even over RN's. You can call the shots and big 5,000k sign on bonuses. Hopefully, something will open full time for you. Enjoy the part time for now and let your bladder rest while waiting for FT. Vicky

[n2indigoky]

I work full time for an Opera Company as the Ticketing Operations Manager. While it can be very stressful at times, but I have a very supportive work family who are right there if I need help. I know how lucky I am to be able to be in this environment. I think that work takes my mind off of my bladder during the day and find I have a harder time in the evenings.

Cheers

[Claredale]

I was diagnosed with IC when I was 23 which was 20 years ago. With the exception of about a year, I have worked full-time. I had to quit my career job in 2003 mainly due to the stress (I loved my job working as an insurance adjuster and was good at it, but I just didn't feel I was keeping my side of the bargain at the time) and I had just had my interstim surgery the year before. I was also able to work from home many days while waiting to have my surgery. Again, I was very lucky to have the manager that I did during the worst time of my IC.

My doctor felt it would be better for my health to quit work for a while to get myself stronger. After a few months of insanity of staying at home because I had worked since I was 17, I just had a hard time. My 2 sons were old enough (one ever in college) and had their own activities, so I went back to work part-time for about 6 months. By 2004, I was back working full-time. Last year I started back working for the same company I worked at for 13 years. Not nearly the same pay, but it fulfilling all the same.

I am fortunate to have had doctors (3 in my 20 years of IC) that have worked with me to get me on a combo of meds to allow me to function as well as possible. I do know that there will come a day that I may not be able to work full-time again, but I take each day as it comes. I am also fortunate that I have FMLA to use on days that I can't work. Working for me for the most part actually takes my mind off of IC.

We are all different, if you anyone with IC needs to stay home so that they can deal with IC, I hope they can do it. I am very glad that I did have the months I needed to heal after my surgery and get myself as well as I could be. Some days it's still a day to day process, but there are many more that I feel so fortunate that I am able to work and pray everyday that the next day will be even better!

[charmedx3]

I work 45 hrs a week. 9 hrs a day on cement floors non stop craziness!

[dverba]

You have just described my life! I drag myself to work with more pain than i can stand and then as soon as i get home i am on my heating pad and read. I stay on it pretty much all weekend just so i can face going to work monday. It takes all weekend to recover from the week. I have to work for the groceries and not working is not an option. We are hardly making it now. I work at a desk in a call center. Sounds like we have alot in common.

[icnewlywed]

I am a counselor for children w/ behavioral and emotional disabilities. FT is only 25 hours a week. I work with each client 2-3 hours a day once or twice a week. I had to take FML in December because of my symptoms. Stick on heating pads are bought by the dozen at my house. The down side about my job is majority of the families I work with don't keep their house very clean and their bathrooms...well they're just gross. Also if you disapper every 15 minutes for the bathroom kids start asking questions. I still haven't quite fiqured out how to explain IC in a professional but child friendly way. Most of my kids parents know I have chronic health problem because of my medical leave but don't know exactly what I have. I am looking into getting the interstim implant because my symptoms won't let up and if I have to take another FML they will have to assign my clients to a new counselor and I'll get a new caseload when I return, but I love the kids and families I work with and have built a fabulous therapeutic relationship with all of them and would hate to lose that.

[AbbeyLew]

I really applaud anyone working a job with IC!
I work full time as a middle school music teacher with IC and IBS and it's really hard! Especially if you have 75-100 chatty bratty middle schoolers in the room and you're dying to use the restroom! :cussing:

I usually have to run in between classes to use the restroom and it's embarrassing to have to call teacher friends to come watch my class if I need to go to the bathroom.

I sometimes have to make the decision if it's worth disrupting my class to go to the bathroom and having them be off task for the next 10 minutes after I get back!

[Rivet Kitty]

Spring and Fall I am in school full-time and winter and summer I usually take one class, though this past year has been an exception.

I also work around 20 hours a week for my dad. Technically, my job is about 22 miles away. In Los Angeles, that means anywhere from a 30 minute- 2 hour (sig alert) drive. Part of my duties include driving around doing errands so at least once a week I'm driving about 60 miles round trip, PLUS my commute! :lmao: I sincerely think I am in the wrong business, haha. But very, very, luckily, since I am boss's daughter, I am never really late and won't get fired if I call in sick more often than everyone else. I think perhaps I am being blessed for working at an awwwful place for a year prior, where my bosses favorite thing to ask me when I was home sick with IC (before I knew was it was) was "It's not CANCER is it?" And not because she cared, because she liked to gossip. :( )

I used to have MASSIVE panic attacks in traffic when it would literally take 30 mins to go half a mile and then find a bathroom. Thank heavens I have a compassionate pain dr. who is willing to give me long-acting meds and breakthrough stuff for those "OMG gotta go" moments on the road. I would never be able to have the schedule I have now without my medicine. Things have much improved, and with the economy the way it is, I'm grateful to have any job at all (even if I'm swearing up a storm at the people who cut me off! :cussing:) :smile tee

A few years ago my old dr offered me disability, but I didn't end up applying. And also, for college, there really isn't a disability leave in the same sense as work, because no one pays you for not doing any school work, hehe. I wish!

[Dolby]

I worked full time as a Banker for 13 years. Towards to begining I would miss work here and there. But as time went on,probably the last 3 years I was workin, I starting missing more work. I was diagnosed about 2 years before I gave my career up. I was making very good money and had worked my way up to a Vice President with the Bank. However with the IC I have Huners Ulcers and was in pain all the time. I could not very well take pain meds or use the bathroom 10 times an hour. So with the support of my husband I quit.

[dking2]

It has been a long and stressful week. I have been completing my budget for the new year. It is so hard to get anything done at work between the constant pain and potty breaks.I feel guilty that all week I am just wishing for the days to pass so I can rest on the weekend with my heating pad. I literally come home on Friday afternoon , and do not leave until Monday morning.It is the only way I can live through the week.I don't even have the energy to interact with my family the way I should.I feel like my life is just passing me by. I live hour to hour at work telling myself I can make through the day and go home to bed. I have had other chronic pain issues for several years, but have always been able to push through and live a fairly normal life doing things with the kids on the weekend , running errands ,etc.IC has brought me to my knees though.
I am a BIG reader also.
Thank everone for the support and just listening.It does help to know that there are people just like me out there.

[CynthiaBW]

I'm a full time 1st grade teacher. When I'm in pain, it's really difficult.
I have been open and honest with my principals, and they are very
understanding. I thought I was going to have to quit at the beginning
of this school year. They told me to go to the bathroom as much as
I need to and to sit as much as I need to. I think you have to try and make your employers understand IC because a lot of people have never heard of it.
Best Wishes
Beth

[westiemom]

I work full time but am finding it harder and harder to do every day. The more I'm on my feet the worse my symptoms are.

One of the up sides is that my boss is extremely understanding and I've got all the software on my computer that allows me to access all the necessary files I need from home so when things get bad I can work from my bed and he let's me do that when I need to.

The bad part is that the current project I'm working on will be ending in March and I've got to find another to work on and will be transferred to another location. Hopefully I'll be able to work with the same boss, but at this point I just don't know.

Also, I'm the major bread winner and insurance carrier in my house. If I stop working that takes away most of our family's income and that's just something we can't handle, especially with the economy in the state it is in. With the terrible flares I've been having I'm so afraid of what's to come :confused:

[BT2008]

:(
No way, no how.

My version of IC is way too unpredictable and the pain is way too severe.

Ironically, I had just resigned from my job as a full-time book editor for a local publishing house 12 days before I was hit with severe IC pain. I was going to set-up a free-lance business of editing and writing services, finish a book that I started in 2001, and explore other types of writing of my own. I had no idea what the horrible pain was that fateful night, but for several months I assumed it was only temporary! Someone would surely figure out what was causing it--and fix it!! Now, almost nine months later, I know better...

I am the type of worker who is dedicated and has to be able to give 100+% at all times. I guess I am sort of a perfectionist! So, there is no way I would even try to pass myself off as a "dependable prospective employee" to anyone!

But--I wish I could work! I am bored beyond tears staying at home without any outlets and feel like a prisoner in my own home without any social interaction!

While I have come a long way toward reducing my pain in the past few months--with the help of long-acting narcotics and breakthrough meds--I am still not well enough to work yet. Heck, I still can't even clean my house--and boyo does it need a good scrubbing! The most I can manage is to cook most days, keep the dishes caught up, and wipe off surface areas. Even then, I still need my hubby's help to accomplish these things on really bad days! I feel like I have really accomplished something when I can manage to drive myself to my doctor appointments without crying...

My urologist recently advised me to go ahead and apply for SSD. Even though I don't want to "give in to IC" -- it is holding me hostage right now. So, I guess I will start getting all my information together next week in order to start my application process. Any and all suggestions for this will be gratefully appreciated! Please PM me with any helpful hints!

So, like several others who have posted: I am totally in awe of anyone who can work at all, let alone full-time, with a severe case of IC. I envy you all...

~Beth

p.s. When working full-time in any job, but especially challenging and stressful jobs, it is very common to 'wish' you didn't have to work at all! But...I have discovered that there a huge difference between choosing not to work and not being able to work! I wish I had appreciated it more when I was able...

[VickiB]

My version of IC is way too unpredictable

That was my problem in a nutshell.

When it flares I'm worthless, -can't focus, can't stay out of the bathroom for longer than five minutes! Basically, couldn't do my job. The result was it made me an undependable employee since most of the positions I'd held required my being present & productive.

Now I'm self-employed at home and have the flexibility of setting my own schedule. Much better!

Vicki

[momw/ic]

I was working FT when I was diagnosed 6 years ago. I had been there for 4 years so they knew me well. My boss was very understanding and let me move my office home. I worked from home most days and went in to the main office for meetings etc. There were times when he would come to my house if he really needed to meet with me and I was having a bad day. It was incredible! Then we moved to Texas.

I got a job as a grant writer for a christian agency that cares for the poor. They talked all about their family atmosphere, caring for each other etc. So I was there for 4 months and they fired me because of my abscences due to IC. They knew about my IC before I started and assurred me it would not be a problem grant writers don't have to be at the office to get their work done. I brought in tons of money for them in the short time I was there. THEN, they fought my unemployment claim! Of course they lost and I drew unemployment on them for almost a year. I haven't tried to work since then. It was so humiliating to be fired for something I couldn't control. My husband is a pastor. We have been at our church for 6 years. I had just been dx when we came here. They knew about my IC we explained what it was and that we were so early in we didn't know what it meant for me. Now there are some members who want us to leave and want a new pastor because my illness "sucks the life out of the church" and forces them to have to "pray for us and care for us rather than us doing it for them"! Way to go christians! They will get what they want - they aren't worth the stress!

I admire ALL of you who work with IC!!

[ABliske]

Beth, your story touched me. I feel, in many ways, it's similar to my story. I thought there would be a cure to the pain as well. I can't keep the house clean. I'd love to have my mom help but my family is all out of town! Do you have anyone close to you who could help?
I have only been working as much as I am because it's necessary. If I stopped and got SS on, I wouldn't be able to afford our mortgage, health care, etc. I feel like I didn't know what I was getting myself into with having a baby. On Fridays, I am home and it takes so long (up to 3 hours) before my pain killers kick in and I can walk around and do stuff. Until then, I'm just on the couch saying, "come here baby" when he gets into stuff.
I have managed to work and only because of the MS Contin. It's still hard and many times I feel like I can't go on like this.
I wish you the best. You can always PM me. I need more of an outlet for this IC talk! I hope you can find a way to work at least part of the time.
What type of book were you working on? I love to read. How exciting it would be to do that type of work!

[dverba]

I work full time now but am using fmla time intermitingly. That is without pay though so any day I take off I do not get paid. Any day I stay home I feel so guilty it is hardly worth it. I need to start looking into diability as I see this getting worse and worse, with the fibro in the mix. Plus I am not sure we could survive on disability pay. Does anyone know if you have to be unemployeed to start the process for disability?