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  • So humiliated!

    I am posting here b/c I have no idea where to talk about this. There is no legal/social section anywhere around and I doubt I have any rights concerning this anyways. But I am still SO MAD!
    I had a TERRIBLE experience today while shopping. I suppose it was going to happen sooner or later, but I am still so angry and humiliated anyways! I had to go to a town about 30 minutes away today to go to the bank and decided to go to my favorite craft store to spend my gift certificates. I won't name names, but it is a major chain, at least in NY. I had used the restroom at the bank and felt fine. After 15 minutes of browsing and shopping I had one of the worst bladder spasms I have ever had (worse than right after my hydro) I felt like if I didn't get top the bathroom I would DIE! Somehow I waited in line to ask an employee where the bathroom was (I don't usually go to this particular location) and she told me there weren't any. I explained that I was a customer (thinking that was the issue) but she said "there aren't any". By this point I was on the verge of tears. I had my two year old with me and was in SO much pain. I explained as nicely as I could that I had a bladder disease that was EXCRUCIATING if I tried to hold it and that I couldn't make it to my car, but she said again" there aren't any" I just took my daughter out of the cart and left. Unfortunetly I wasn't able to drive across the street to a fast food chain and ended up having incontinence in the parking lot(rare for me). I was so angry and humiliated. I just don't understand why it is so hard to get bathroom access! I guess I understand it is up to the store's policies, but what really irritated me was that they had a HUGE sign on the door saying that they valued their disabled customers' business and would help to accomodate them in any way possible. I mentioned this as I angrily left, but was told that wasn't what the sign ment. UGGGGGGGGH!
    There. It's out now!
    I am considering writing the company. Again, I guess legally they can deny public restroom access, but I feel that they shouldn't have a sign saying
    they will accomodate disabled cutomers and then do the opposite. If I was on crutches or in a wheelchair they would rush to help me. I am so humilated that I had all that pain and an accident in public. I have ordered an IC alert card and a travel john for an upcoming vacation, they're not here yet though.
    Now I am terrified to actually take our trip to NYC next month. This is bound to happen again!
    Thanks for listening. IC makes me feel SO worthless sometimes. Today was just another reminder how hard it is to leave the house even on a day I think I feel good!
    Rachel
    DX's:
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


  • #2
    oh no Rachel, I am so sorry, I too would write the company. This was rude and unnecessary. I had our electric company do me this way. I am under the understanding that it is actually against the law in Michigan to deny bathroom access. I would find out if that apply's there to and print it up and take it with you.
    (((((((((hugs)))))))))))
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      I'm so sorry that happened to you. I don't think people realize how much of a disability this really is for us. Try not to worry too much about your upcoming trip (if you're like me, anxiety really makes me flare) hopefully the people there will be more understanding.

      Comment


      • #4
        Oh gosh .... I don't know whether to hug you first or go off on a rant on your behalf!!!!!!!

        I am so sorry this happened to you. I absolutely cannot stand to hear stories like this; they make me so angry

        I would definitely write to the store manager and explain what happened. Tell them what IC is, what the symptoms are, and that it is a disability that is covered under the Americans With Disabilities Act (ADA). Explain what happened in the store, how angry you were, and how you felt that being denied access despite the sign about the disabled on the door was hypocritical. Tell them that you probably won't shop at that location anymore and that you'll also be telling others this story so that they can decide whether or not they want to shop at a place that treats customers so badly.

        I have been rudely denied restroom access before too and it is awful. This is the kind of thing I want to STOP ... I want everyone to know what IC is so they will never deny bathroom access to anyone. I keep writing to newspapers, TV, and magazines, and so far I have only gotten minimal responses... but I am going to keep at it, don't worry.

        Again, I am so sorry.
        ****
        Jen

        *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.

        Comment


        • #5
          I am with Jen - definitely send them a strongly worded letter! LOL Shoot, I'd just say I'd never patronize any of there locations again and would make sure all my friends and relatives shopped elsewhere also. Maybe even say I was thinking on contacting the local newspaper or tv station to share my story, since it's so ironic that your sign says you are willing to help your disabled customers - but yet you didn't. And rudely at that!

          Sending you big squishy hugs!!!!!!
          Hugs,
          Tracey
          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:
          http://www.ic-network.com/diet/2009icdietlist.pdf



          Dx's:
          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
          Others:
          Wellbutrin 150mg 2x's a day for Anxiety/IBS
          Pepcid 40mg a day for GERD
          Zytrec for Nasal Allergies
          Align Probiotic daily for IBS

          Comment


          • #6
            oh rachael how awful.i could just kick that persons a**!!!!!!!!!!! they legally have to have a bathroom for their employees to go,and then you explaining your problem,it amazes me how rude people have become in this world.i've said it before but i don't care,whatever happened to customer service?????????it is such a pe ve of mine.i worked as a server for 10 years,working with people everyday,and i never treated my customers the way i constantly see people being treated .almost everytime i go somewhere i deal with rude people.its like there is no such thing as customer comes first.oh i could go on and on i am so sorry for what you went through.i think tomorrow you should go in there,ask for the manager,and let them know exactly how you were treated,and explain what ended up happening because of this.let them know how upset you are about it.

            Comment


            • #7
              That happened to me when I went to CALI to visit my brother. He was doing a marathon, and my mom and I were to meet up with him a little while later. Well, we first off didn't know really where we where so when we finally found a parking spot, I had to go super bad. Well, apparently people who live in CALI don't pee since there was NO public bathroom anywhere. We finally found one of those portal potty that was near the marathon, otherwise my bladder would have burst. I also don't understand how, even when you explain your situation that people still can refuse you the bathroom. Cause we also even offer to buy something. And before we got to the marathon place, we went to this classy hotel that was next to it, and they even said no. Course, I'm sure it didn't help that I pretty much cussed him out as we were leaving. But the pain was so unbearable, just to look at me you knew I wasn't lying about my condition. So, I def. would write to the manager, and the company, several times until you get a response. And if you know of others who have IC or other bladder conditions, I would have them sign it. Good luck with it, and I'm sorry you had to experience that!

              Comment


              • #8
                Definitely write that letter. I would send one to the home office of the chain, as well as the manager of the store involved. Also I suggest you check the internet and see if you can find where in your area you send a complaint about those who are not making reasonable accommodations for the disabled.

                You'll want to have a restroom access card, which you can get through the ICN Shop.

                I'm so sorry about what happened to you.

                Donna
                Stay safe


                Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                Have you checked the ICN Shop?
                Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                Patient Help: http://www.ic-network.com/patientlinks.html

                Sub-types https://www.ic-network.com/five-pote...markably-well/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                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.
                [3MG]

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

                Comment


                • #9
                  Now I don't feel so alone...

                  Thanks everyone for your wonderful responses! I was starting to feel so alone on this issue. My mother in law listened to me complain and siad that the store has a right to not have public bathrooms! It is so hard sometimes when the discrimination comes from well meaning family members! I am trying to research what the law is here in NY, but haven't gotten too far. I did find a great article about a 10 year old girl with Ulcertive Colitis who is trying to make it so businesses have to let individuals with medical conditions use their employee bathrooms in her home state of Texas. The only state it mentioned though with a similar law sucessfully passed was Illinios. It really has gotten me thinking: if a 10 year old girl can advocate for herself, I need to learn how to as well!. I am calling the ADA hotline tomorrow to get some info from them. Also my husband offered to go to the store with me tomorrow to talk to the manager. I am going to have him help me put an email together tonight to send to the corporate customer service department. He is actually being really supportive. He sometimes doesn't get how severe these symptoms can be for me, but he felt so sorry about what happened.
                  He is encouraging me to cantact the local news station that often has special reports, but I am not sure I am brave enough for that yet!
                  I have a co-worker who has done all sorts of lobbying for mentally ill children and their families and I think she would know who I could write a letter to on a state level. I am also going to email the leader at a local IC support group to see if she knows who I could talk to. I am unable to attend that group right now b/c my symptoms are too much for the hour and a half drive, so I don't actually know any of the IC patients in my area.
                  I do have an access card ordered as well as a cushion and the pelvic pain CD and can't wait to receive them all! I am desperate for items to make living with IC a little easier!
                  Oh, here is the link to that article of the the young UC patient. I could really relate to the stories of racing through stores trying to find a bathroom before an accident occured! I never realized just how much discrimination IC, UC, and Crohn's patients have to deal with! While it is pretty scary to hear how often it happens, it is nice to know that I am not alone on this!


                  http://www.statesman.com/news/conten...1restroom.html
                  Rachel
                  DX's:
                  IC; PFD; possible Fibromyalgia; IBS;

                  Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                  I've Tried:
                  three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                  Currently using:
                  Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                  Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                  I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                  Comment


                  • #10
                    Rachel, someone told me, which I do not know if it is true or not, but this person said, if so many people use a public place that they are require to have access to the restroom. The amount of numbers I don't know, and if you are good with finding things on the computer, maybe you can search and see if this is true.

                    But even without this information, you do have a right to fight this problem because they are the one that posted a statement about helping disablities. I hope this will never happen to you again. I am so sorry you went through this when this could have been prevented.

                    Sending hugs, Trishann

                    Comment


                    • #11
                      Good!!! YES, YOU CAN ADVOCATE FOR YOURSELF!!!! You are a lot stronger and a lot more wonderful than you give yourself credit for, please know that!

                      Write all of the letters that you are planning to -- everyone you mentioned should hear about IC and the discrimination patients face.

                      If you do get up the courage sometime, it might be worth doing what your hubby suggests -- write your local TV stations and the newspaper. I wrote my local media outlets just because I wanted them to do stories on IC in general; so far, the TV stations haven't replied, but out local paper did a story on me and my struggle with IC. It had great IC info in it, and it got a great response from the community.

                      I say, GO FOR IT.
                      ****
                      Jen

                      *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.

                      Comment


                      • #12
                        Sounds like you have a wonderful start and a great support system backing you up! Just remember to keep building your courage and if you need help, always come back here!

                        Comment


                        • #13
                          I agree that you should pursue this. When you think about it, it's really short-sighted of them to refuse you bathroom access. I mean, it's a crafts store, where people are inclined to browse and spend more money the longer they are there. I wonder how many sales they have lost because a customer (or customer's child) needed to use the restroom and ended up leaving $50 early.

                          Comment


                          • #14
                            i think it was just flat out rude when the salesperson heard your problem and still refused.i know there are places where they don't have public restrooms,but,there are also times when you HAVE to be leniant,and that was def. one of those times.that was just plain ignorance on their part,and you absolutely are doing the right thing.do not let this go rachael.you deserve to be able to use a damn bathroom when you need to.oh man i am still ticked please let me know what happens.

                            Comment


                            • #15
                              Found more info...

                              I looked around online somemore and found out that Michagan, Maryland, and Illinios all have laws requiring businesses to allow customers with medical conditions (and in some cases pregnant customers as well) to use the employee toilets, given they can produce a restroom access card, or Doctor's note or prescription. It looks like Texas will be next. I also found out about an organization called the American Restroom Association. They have some interesting stories there and sample letters that patients, Doctors, and other advocates have written to businesses, lawmakers, etc. So I feel like I have a good place to start now. I do wish I had my restroom access card today, I think it would have made a difference, at least when I talk to the manager and the company's customer service center. I had waited untill I had the money to buy several things at once. I should have gotten one a long time ago. But I will have one soon. And I am really heated up about this. It is so unfair to further dehumanize people dealing with life altering medical conditions!
                              Thanks again to all of you. I was really doubting myself earlier today and felt quite embarrassed for "making a scene", which really only included me explaining my situation and walking out of the store leaving a cart of items, but is still VERY out of character for me! I now feel like I have the right to go shopping without HORRIBLE pain and incontinence and I am not alone!
                              Rachel
                              DX's:
                              IC; PFD; possible Fibromyalgia; IBS;

                              Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                              I've Tried:
                              three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                              Currently using:
                              Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                              Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                              I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                              Comment

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