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REPEATED DOSES of IC Info Might Help

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  • REPEATED DOSES of IC Info Might Help

    By now, you all pretty much know that I advocate giving people in your lives printed information and/or websites to read about IC so that they can at least understand that it is a real disease. However, we know that sometimes people read the stuff and take it with a grain of salt... and then still treat us like we're lazy jerks even though our chronic illness is what is limiting us, not lack of ambition.

    You all probably know, too, that my workplace has become rather toxic in the last year or so, and I am pretty fed up with it. So much so that I am contemplating getting out of laboratory science and changing to a career in science writing and/or teaching instead. Much of this is because these days in science, supervisors are intolerant of those of us who do not work 100 hour weeks (staying until 9 or 10pm, coming in both Saturday and Sunday, etc). Unfortunately, due to IC, fibromyalgia, MPS, migraines, and possible chronic fatigue syndrome, I am unable to do this kind of thing anymore -- and I informed my boss about that in the beginning, when I started working here. I also gave him some info on IC at the time, and in the beginning, he was quite understanding.

    As time passed however, and I "didn't look sick" a lot of the time, I think the gravity of the situation became lost on him, and then I ended up being reprimanded for working what most people would consider a very full week (40-50 hours), which was frustrating. For a while, I tried to work longer hours and didn't leave the lab until at least 8pm for two weeks -- but I became seriously ill after doing that. In fact, I've never mentioned this, but the fatigue caused by stress on my fibro/CFS/IC during that time resulted in me falling asleep at the wheel of my car -- luckily, it was near our home out in the boonies, and I was driving slowly, so I just drifted slowly into a corn field and came gently to a stop against some corn stalks.

    That made me realize that if it had happened earlier in my commute, I could have killed myself, or worse, someone else. It also made me realize that working those kinds of hours was absolutely impossible, so I cut back... of course, that led to another reprimand and comments that I did not get enough done, even though I busted my butt during the hours I WAS able to be here and only called in sick one or two days despite feeling horrible. I ignored the reprimands that time, though, and just kept working the way I was able... there is nothing else I can do besides that and look for a different job in a different form of science.

    Finally, my boss began acting very cold to me and then scheduled a meeting with me for this morning a week ago. In the meantime, I found some more articles on IC... ones that stressed how intense the pain was, and how 67% of those with IC are not able to work full-time (they either work part-time or need to be on disability). Speaking of disability, I found another article stating the fact that IC is indeed covered under the ADA and is considered a disability. I emailed him the links with just a simple "FYI -- the newest information about interstitial cystitis" and then just gathered up all my work to prepare for the meeting (while tending to labwork, trying to go to the development classes he wants me to go to, and dealing with at least 5-6 meetings a week....)

    Anyway, when I went in, he was pretty grumpy at first but I presented my stuff to him and there was really nothing to yell about so he kind of sat back in his chair, looked ****** that his moment to yell didn't happen for a sec, and then calmed down.

    And then he actually said, "You know, I guess I didn't really realize how much of a toll this IC takes on someone's health. I feel kind of bad for getting upset when this disease really does set limits on you."

    Unbelieveable! We also discussed the fact that I am considering changing careers to something other than lab work, and he was kind of upset about it and kept saying, "Well I hope you stay in science in some way or another because you're a great thinker..."

    We shall see how long this episode of understanding lasts... but at least I have a period of reprieve coming up that will likely last a month or two. 'Course, dunno if I can say the same about my coworkers, but at the moment most (except for one) are being decent people.

    So I guess the moral of the story is -- sometimes it can take repeated doses of IC info to give someone a kick in the pants about it. Maybe a good thing to do with some people in our lives is to send them the newest IC info every now and then, just "for their information" or "because I thought you might be interested."

    It stinks that we have to do that though... if I said I had cancer, they'd all understand after that one announcement. But with invisible chronic disease, they need reminders -- another symptom of "You Don't Look Sick" Syndrome, I guess.

    *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.

  • #2
    I am so glad that he responded that way to you. I also know that people have short attention spans and have to be reminded about almost everything. I hope that one day soon, this disease will be common knowledge and that more people will recognize that it is a real disease and creates many difficulties for the people who have it. Until then, I guess it is up to us to continue to remind them of the costs we pay because we have IC.

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      HI! WoW thie is SO true! Some times you have to pound people on the head with the info to get it through to them. No one really understands how painful and disabling IC is for all of us who suffer from it and the many other conditions that tag along with it! Thank you for reminding me/us we need 'repeated doses' for some people we know and love! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


      • #4
        I am so proud of you for the way you handled that situation. I hope your boss will continue to treat you with the compassion you deserve.
        Miss Bessie

        Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

        Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

        Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life


        • #5
          Good for you! The ADA article should let him know he could be headed for huge problems if he doesn't comply by making allowances for your disability.

          I'm proud of you.

          Giant hugs,
          Stay safe

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          I am not a medical authority nor do I offer medical advice. In all cases, 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.

          Anyone who says something is foolproof hasn't met a determined fool


          • #6
            You handled that great!! Now that he knows your armed with all kinds of info, he cant say anything. If he does, you could get him for discrimination against a person who is sick.


            • #7
              Good for you Jen on standing your ground. Some people are simply ignorant. As mean as it sounds, it is the truth. Oh and about the cancer thing, when I asked to go back on the wellbutrin my gp asked why. I told her the IC was killing my spirit, and then she asked why again. I told her that cancer would be easier. I would either die and the pain would stop, or I would get better and my pain would be gone. If the cancer came back, the process would repeat itself. IC can be treated and not cured. The pain can subside, but it will or can always return.

              IC diagnosed officially via cysto/urodynamics 1/26/07

              Grade II Endometriosis diagnosed via lap 12/11/07

              "Fall down seven times, Stand up eight."

              "Life is a tragedy for those who feel and a comedy for those who think."

              Current Treatments:
              Interstim Since 5/25/07!
              Birth Control


              • #8
                Good for you, Jen - for being so presistent and not giving up on making him understand what life is like on the job in your shoes. I am so surprised to read how he has changed a bit for the better. Amazing.

                Diagnosed August 2001

                Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                • #9
                  so glad that he is coming to the conclusion that ic is real.
                  'The will of God will never take you where the Grace of God will not protect you.'


                  • #10
                    I was going to mention the ADA thing too. My boss (who by the way isn't here most of the time) made a remark to me about being 30 minutes late last Monday. I told him that I had to get my prescription that was told on Saturday that they would have ready at 8:00 on Monday morning. Well, it wasn't and therefore I was late. He was lucky I came in at all since it was my pain meds and I went through the weekend with just 3 Lortabs, so I had not had any sleep nor was I in the best mood. I really need to check into finding another job, but I really like the other girl that I work with, plus it is low stress most of the time.

                    Well Jen...I hope that things will improve for you!



                    • #11
                      Good for you for keeping on keeping on informing him. Persistance does pay off!! I hope that his understanding lasts this time and he will treat you more compassionately from now on.



                      • #12
                        That's so great Jen that he finally seems to get it. I hope that he continues to be more understanding. Even though my boss made that joke the one day about needing depends she is really understanding about my IC. I don't think any of my bosses in the past would have been as understanding. I got my uro appt moved up to March 30th and she's letting me take a half a day. Someone else asked for a vacation day that day and she told me that mine was medical and much more important because I'm so miserable all the time so she denied her request and aproved mine.
                        I hope that everything keeps to improve at work or that you figure out what you really want to do.

                        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                        I have tried every oral medication as well as rescue instills and DMSO.

                        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                        Also proud mom to the best Bullmastiff on earth, Claus


                        • #13
                          ADA and IC

                          I would like to find the article that talks about IC being covered under ADA.
                          Could someone tell me how to find this article?


                          • #14
                            I agree. I am SO sick of people saying you don't look sick! Am I supposed to look like a corpse? It really annoys me!


                            • #15
                              I've also been told by Social Security I did not make enough money in my lifetime so far to qualify for disability? I am 47. I chose to stay home with my children for 28 years. I'd say that was a very full time job. Shame on SS and Disability