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Don't think they believed me

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  • Don't think they believed me

    So, the other night Mike had a friend and his wife come down to pitch us this "career idea" thingy. Kinda like one of those pyramids, but not. Anyways, so they were telling us a pitch how you buy things you already use for wholesale and yadayadayada....and hadn't told us what exactly the products were yet. Then they started going on about all these energy drinks and vitamins and soaps that they get and how great they are, and Mike and I looked at eachother like, yeah, I can really use stuff like that. So we asked them what exactly the items were b/c I can't take Vitamins or energy drinks or use different soaps and they were just perplexed. They were like, well all of our products are all natual and for sensitive people so surely you can use them. So I said no, b/c I have IC, and of course they were like "what?". So they showed us some products and I was told them that I could use face soaps and stuff like that, but nothing that came into contact w/ my "body" (I was trying to put it delicately) and she was all "well don't face soaps touch your body?" and then her husband asked "well what do you use now?"' and I told him nothing special, Charmin, Lever 2000, stuff like that b/c I know its okay and they just kinda looked at me like they didn't know what to think if I was lying or what. Is it so hard to explain that "look, I know I can tolerate those things, so I'd really rather not risk it and flare for two weeks"? Anyways, Mike wants to try their deal so I guess we're going to, they have like a million products (why they had to make that so complicated I don't know, could have just said "we have a million products"). Lots of baby stuff too :woohoo: so I guess I can spend some $ there hopefully
    Just wish it didn't have to be so darn hard to explain this to people, then they just look at you like they have no idea anyway, why did I even bother?

  • #2
    Perhaps next time someone doesnt quite "get it" try the straight-forward approach...they'll either "get it" or go away.
    I never pussy-foot around the subject; if someone asks I tell them..end of discussion..

    Hopefully you'll be able to find something you like that doesnt cause you any problems..

    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.


    • #3
      LOL, I'm with D, I too got tired of dancing around it - hard isn't it? Because for every evasion you give, that just raises another question and another protest (as in "oh sure you can!") etc. LMAO!! So yeah, now I just say nope can't. LOL If it goes further than that, they'll get the scoop, lmao!! In restaurants I've just always stated I have food allergies, that's usually enough to where the waitstafff will become super helpful, etc.

      Again as D said, I too hope you find something you can use out of the "million products"!!
      How do you eat an elephant? One bite at a time...

      Harry arrived 2/23/09!

      *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.

      IC Diet Cheat Sheet:

      IC dx'd Nov 2004
      Lymphocytic Colitis dx'd July 2005
      Possible IBS
      Current IC Meds
      Vistaril 25mg in the evening
      Previous IC Meds taken:
      Cystoprotek - 2 caps 2x's a day
      Elmiron, 100mg 3x's a day
      Ditropan, 5 mg 3x's a day
      Wellbutrin 150mg 2x's a day for Anxiety/IBS
      Pepcid 40mg a day for GERD
      Zytrec for Nasal Allergies
      Align Probiotic daily for IBS


      • #4
        I feel like I still get this all the time from my own family. My step son tried to hand me a coke the other night. I told him I couldn't have it, why not he asks? Because it's not good for my bladder, and then the response is "are you serious I didn't know that". I guess he hasn't noticed that I have been drinking nothing but water for the past several months. I think the only one that really gets it is hubby and he forgets all the time and asks me if I want something that is a no no then feels really bad when he does, lol

        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


        • #5
          I hate when you get that look.... you know the one like a dog makes. Head tilted slightly with a weird look on their face. It's priceless. Someone should take pictures of people with that face haha. But anyways I hate that! I just tell people It's like having a UTI but a million times worse! They get it after that. My bf asks me if I want soda all the time! He feels bad too b/c I can see it in his face. Can anyone tolerate Sprite??? My bladder can tolerate a little. But it hate every other kind of soda!

          Dance like no one is watching
          Love like you've never been hurt
          Live today like it's your last

          Dxd with IC in June '06


          • #6
            Oh yea the look lol...I have finally learned.. When I have to explain IC to people, I just say my bladder is like one big ulcer and everything below it feels like that to... They just kind of curl their lips and dont ask anymore, sometimes being blunt works the best

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

            Link to Patient Handbook:

            Diet Reference Sheet:

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

            ICN 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.


            • #7
              I, too, tire of the pity face. However, I can usually shut people up from their incessant peppering of questions just by saying something they don't want to hear........proper medical terms for the whole thing. They stop talking and listening, and everyone can go on their merry way.

              Fact is, nobody but sufferers of IC or some other related illness "get it". I mean really "get it".

              Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

              Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

              IC Diet: Very diet sensitive, esp. to spices.


              • #8
                I said something about not being able to have caffeine to one of my drivers the other night. He asked why. I told him I have ulcers on my bladder. I told him it has a name (then said inter..) He asked me to repeat it. Then laughed cause I cant pronounce it very well. (took 5 years of speech as a kid working on s's and z's..still haunted by it). It was funny, but he understood it.

                It took me a while to figure out how to explain this to people. At restaurants, I also do the food allergy thing.
                Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

                I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

                Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

                I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!


                • #9
                  Mike made me sign papers with his "cult" tonight. Not real thrilled with it. Tonight she gave me all sorts of books on the products and one was on vitamins and she says as she gives it to me "Now I KNOW you 'can't' have vitamins, but this is just for you to look over". She just irks me now. So, I told Mike not to expect much help on this from me. From now on I'm referring to it as the "Jim Jones Project" and told him I refuse to drink any of the refreshments at the meetings-especially the kool-aid!


                  • #10
                    yikes meme... I know you couldn't do anything cuz of hubby, but I hope he didn't just sell you 2 short.. The reason I say this is Daves half brothers g/f-wife, whatever she is lol. tried to get me into her business.. She was telling me I could afford there small fee bla bla bla.. she even went so far as to tell me she knew people that had IC and used there certian product and now she is cured.. yea ok send it to me and then I wikk decide then.. I have never heard from her again... this was 7 years ago.. now loss for me I didn;t know them anyway,
                    'The will of God will never take you where the Grace of God will not protect you.'