Still trying to work

[doodlebugsmom]

I am still trying to work. I find it very hard at times. Anybody else that works or has worked...is there a way to continue on? How do you deal with the pain at work? I am in a job that I can't take pain meds at work. Just wondering if anybody else deals with this too. Thanks in advance for the replies.

[Jocotter]

I still work. Sometimes I can go weeks and things are OK, not bad at all. Then it comes back for about 3 months and I am in pretty bad pain quite often. I am the director of a large nonprofit and it's hard to miss work, so I have learned to function on pain pills, if I have to. I try and go without during work, and sometimes that is OK. If it turns out to be a really bad day, I might take one about lunch time.

I rarely mention pain to my coworkers, because I feel like they probably get sick of hearing about it. But some days when I'm feeling bad, someone will look at me startled and say "Are you OK? You are so pale." or "You're having that pain again, aren't you? You look awful."

The whole thing really sucks. When things are stressful at work, it gets worse of course. I don't know what the answer is, since I don't feel like it's bad enough to get disability, even though we offer it at work after 90 days off. All you have to do is get a doctor to say you can't perform your duties for at least 6 months and they accept it. It's not as bad as social security. But I would feel guilty even trying it, being the director for the past 27 years.

I hope you can find some relief. I can't imagine getting through the day without a pain pill on those bad days.

[doodlebugsmom]

Jocotter-Thanks so much for your reply. I was just recently diagnosed and was not sure how some people handle it at work. Your reply was what I was thinking. I am still not regulated on medicines yet so I am still in alot of pain! Thank you so much and God Bless!:)

[Jocotter]

Hopefully, you will feel better over time. I know it's really frustrating and difficult. For me, the IC diet helps some, too, when it gets bad.

[EmilyAnne]

Hi,

I also still work. I'm the children's director at a church and there are definitely days where it is hard to teach. Before I worked here I was the 3-5 grade coordinator for a camp and sometimes it was agonizing. I love working with kids and really feel like it's what I'm supposed to be doing, but oh my goodness, is it hard sometimes to keep up with them when I'm in pain!

But I have a great support system between my boyfriend/best friend Joel, parents and friends. I think they're what mainly gets me through it. When I'm in a lot of pain during work, sometimes I will call Joel or my dad and talk to them. That helps because at least I know that I have people who understand and support me and I can talk to them about it. I also don't take pain medication, not because they won't allow me to at work but because the pain medication has never worked for me. Sometimes I will lay down on my office floor for a while. No one has caught me doing that yet. :) But I know they would understand. I've been known to bring my heating pad with me to work. Also you can buy menstrual heating pads that attach to your underwear, heat has helped me in the past, so perhaps that would help you? They're very discreet so no one would have to know. I would try to stay off your feet as much as possible as work, which I know can be hard if you have a job that demands a lot of movement.

I'm sorry I can't be more help. I hope that you are able to figure something out soon and it gets better!

[Jocotter]

Ironically, I had to leave work yesterday and I'm home today sick. I can't believe how much it was hurting the past couple of days. I went my doctor yesterday and she gave me some antibiotics, since they help sometimes.

Tell me more about the menstrual heating pads. I take my regular one to work, but if I'm up and down alot, it's no good.

[EmilyAnne]

They're made by ThermaCare and they're part of the product line called heat wraps. They last up to 8 hours, which is wonderful, I use them for cramping too.

Here's the link to their website so you can see what they look like...

http://www.thermacare.com/producthub.aspx

I'm usually able to find them at my local Jewel or Walgreens, which are the main grocery stores and pharmacies around me.

Hope that helps!

[Jocotter]

Thanks, Emilyanne! I have to go to Walgreens today and I will buy some. I see we work in similar fields. I'm the director of a nonprofit childcare agency with 5 centers. Luckily, alot of my work is at my desks or meetings, etc. if I had to work directly with the children, that would be too hard when I feel bad.

[doodlebugsmom]

Thanks for the help EmilyAnne and Jocooter. I really appreciate the advice. I am a nurse, but can rest during the day. I will try the heating pads as well- I forgot about those. I use to use them alot when I had cramps.. I do take my TENS unit and wear it at work now. That really helps alot too.

[Jocotter]

Looks like we are all in service type professions. I don't know about your jobs, but I think stress has alot to do with aggravating mine.

[doodlebugsmom]

I agree with the stress part. But, I know God called me to be a nurse- so I don't know how to do anything else..lol..very nice to meet you both!

[Jocotter]

I agree, I was called to do this job. I can't imagine anything else.:)

[EmilyAnne]

I definitely think stress has a lot to do with it, but again I also feel called to work with kids in some capacity, which will always bring some stress along with it. It's frustrating not knowing sometimes if it was a messup in the diet, or riding in a car too long, or stress or something else that's causing the pain. Then that just adds more stress... :) It's a neverending vicious cycle sometimes...

[kadi]

Hi Doodlebugsmom,
I've worked for the almost 8 years I've had IC. It was really hard in the beginning, but it's easier now. I use the stick on heating pads also - almost every day! I like the Bodiheat pads better than the Thermacare ones - they're hotter, more concentrated where I need them, fit better under my clothes and last 12 hours instead of 8. I buy them from the ICN shop linked at the top of the page. I also try to vary my position a lot, sometimes standing, sometimes sitting, sometimes standing with a foot up on the rungs of a stool.

I do home instillation treatments and those have basically saved my career. I can sleep at night because I do the heparin/marcaine/sodium bicarbonate instillations before I go to bed. And I can work during the day & usually not need pain medication because I do another one before I go to work in the morning. My IC is severe though and before the Elavil and home instillations, I was voiding 60x a day, and struggled to even function at all. I lost all quality of life for awhile until I got on the treatment plan you can see in my signature below this post.

I'm also a teacher and have had to make arrangements for someone to give me an extra restroom break between recess and lunch (it's 2-1/2 hours - ridiculous- the kids can't wait that long either & I wind up writing a million bathroom passes), but with a letter from my doctor, it's been handled professionally and without any fuss.

For me, working is an absolute necessity. I'm single & self supporting and my family told me they had no intention of helping me, so I have to work. Here in the San Francisco Bay Area, the cost of living is so high, it's hard to make ends meet on a disability check. But, more importantly, working kept me sane. It gave me a reason to fight for my health and push my doctors to get the referral to Stanford, which got me the instillation treatments that make my IC manageable.

The best advice I can give you is to document what gives you trouble with working and discuss it thoroughly with your doctor to come up with strategies to help you manage the symptoms and/or write you a letter to manage your work environment to modify it under the Americans with Disabilities Act. My letter states I need a classroom close to a faculty restroom as soon as one is available (didn't want to completely tick off new colleagues by making someone move!), restroom breaks as needed, and a preparation period at the end of the day. Those things have helped me a lot.

Hang in there, it will get better! The hardest time is in the beginning when figuring out a treatment plan and making adjustments!

Wishing you better days soon,

[mary124]

I still work (dx with IC in 1992) but probably had it long before than. I work for the State of Texas as an Admin. Assistant. There are times that I have pain, but somehow I still manage to make it thru the day, I have my heating pad and take pain medication if need be.
Stress is a big facture for us, and lately I have had it big time. I have a boss who really can't handle her job so she gets down on me and the other lady who works with her.
Its getting so bad that one of my doctors filled out FMLA forms on me (for Ic and my heart condition) so that when I miss work due to appointments and or flares that I won't feel too bad about taking off.
Most people at the office know what I have and if I am unusually quiet they know that I don't feel well so they pretty much leave me alone, however my boss will take the opportunity to just start on me and having me get up and down my chair all day long.

[Jocotter]

Mary, my husband works for the state of TX too. I think anyone working for the state right now is under stress due to the budget. My husband finally just became eligible for retirement and so if he gets laid off, it won't kill us. It's horrible to have a boss like that. Fortunately, I am the boss, but I still try not to take much time off. I hope things get better.

[Sarah85]

Doodlebugsmom, I don't have any advice but I understand your dilemma completely. I'm a nurse as well, but I don't know how much longer I can continue on like this. I think stress is a huge factor, since my pain is bad at home but definitely worse at work (can't do anything about b/c can't take pain meds). How can nurses with IC be expected to take care of the sick and hurting when we are sick and hurting too?? That's what I want to scream some days.

[KathiB]

I am still working, diagnosed in 2004. Some days it's extremely difficult. I use the Thermacare heat wraps, a microwavable hot pack, and sometimes pain medication at work. I

have days, though, where it takes all I have to get through the work day and then I'm fried at home. Not fair for a DH and 2 young DS, but we do what we have to do.

I am also struggling with some other health problems, but not sure that it's all together enough to qualify for SS, and my STD/LTD insurer through work has been extremely difficult in the past. I wish there was an easy answer! It helps, though, knowing that there are so many others in the same boat. We all do the best that we can do, each and every day.