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Advice about WORK!!

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  • Advice about WORK!!

    I'm still in an intense flare, its been about 3 months now. I am on the FMLA through my work and using PTO and EIB to still get a paycheck. I have about 3 weeks left until I run out of PTO and I won't get a paycheck anymore. My husband and I can't make it without my paycheck. I am a nurse on a surgical unit in a hospital. 13 hour shifts, on my feet, in a high stress environment does not work well with IC and pelvic floor dysfunction. I have no idea what to do. My urogyno. has said there isn't anything else they can do for me right now so they are sending me to a pain mgmnt doc. I am in physical therapy twice a week for the PFD. I am looking for a counselor to help me deal with the stress to keep from exacerbating the flare. I don't handle stress well. I didn't put the option for short term disability on my insurance. So I can't do that right now. Any ideas?! I'm stuck. I spend every day at home, laying down with my heating pad. One house-hold task sends me into spasms and then I have to lay down again. The pain is horrendous. The worst is when people ask me when I think I will be able to go back to work. If I had that answer I'd be a lot better. Sorry that is not how IC works. Any advice would be greatly appreciated. Thanks everyone! Sending pain free vibes to everyone!

  • #2
    My advice is to listen to your body. It's trying to tell you something. Find a way to reduce your stress load. It's going to be hard to get a hold of your symptoms if you don't.

    I was a teacher when my symptoms first started and my body was desperately trying to tell me something, I know now. I regret that I didn't listen. I stuck it out for a few years but eventually had to quit my job and rest to get better.

    I had to make major financial sacfricies. I changed careers to something much less stressful. I've been in complete remission for almost a year now.

    Good luck to you.


    • #3
      My IC began when I was 8 years old, but I did not really know or get diagnosed until I had my first knock-down, drag out, screaming in the bathroom flare in 2004. At that time, I was a postdoctoral research fellow in a high-pressure molecular biology laboratory - the boss was a tyrant, and we were all working 100 hour weeks to please him and to try and avoid being "scooped" by other laboratories working on similar theories. The stress and the hours ended up being too much, and I ended up leaving that position and taking about a year off to figure things out. I went back to science in a lower pressure atmosphere, but the long hours on my feet and things were still too much, so while I was off recuperating from the surgery to put my InterStim in, I did a lot of thinking about what I could do instead, because like Briza, I knew my body was telling me something and I hadn't been listening too well.

      I ended up becoming a scientific/medical writer instead. While science is my first love, I have also always loved to write, and I realized that I could combine both of these things into a career that was more IC friendly. I still have to work some long hours near deadlines sometimes, but I can do some of that work at home in bed if I have to, and when I'm in the office I can sit down much of the day. I can also close and lock my door for 15 minutes in the middle of the day to stretch out and do a guided meditation using this cool app for my iPad or something like that to help cope with stress. I also work with a number of urologists at my new job, believe it or not, and I have told all of them about my IC, so they know what my "deal" is in a very real way.

      Sometimes, unfortunately, IC forces us to make what we think are huge sacrifices. It SUCKS when this happens - believe me, I know. All I had ever wanted to do was be a scientist. However, I have found a lot of pleasure in writing, too, and I often think that many of the experiences I've had since I switched careers would not have been possible if I had not ended up with such severe IC. There is always a silver lining, even in the thickest clouds.

      Is there perhaps another type of nursing that you could do that is not as intense and/or as dependent on standing for long hours as surgical nursing is? Would you be willing to change departments? Become a visiting nurse and work with people in their homes after surgeries or with the elderly? I'm really not sure what is possible for you, so I'm just throwing out ideas here, but my point in doing so is to maybe get you thinking about other options that are still in your area of passion (nursing) but that might not be as stressful to your bladder as the OR is. Do you have a mentor you trust from nursing school or from your current job that you could discuss your situation with? Mentors often have superb ideas in these sorts of situations as well and if you have one you trust it might be worth talking to him/her.

      I know the choice to change your career up is a tough one, so I wish you the best of luck with whatever you decide to do

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        I know you have probably done this,, but have you tried the IC diet? it works wonders for me. I have made really good progress.
        Do you think you could maybe get a nursing job that was less on your feet? It sounds like you are good at what you do and I imagine nursing in the surgical unit is one of the most stressful places to work. Maybe you could find something a little less stressful but where you are still contributing your great nursing skills?
        Good luck and let us know how it goes!
        -Pammylynn Rose
        Wishing everyone a pain free bladder day!

        Painful symptoms start in May 2011
        Diagnosed with IC in Aug 2011

        Axert (only for rare migraines)
        Strict IC diet
        Gluten/dairy/egg free diet