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  • #31
    I used to work for an indepoendat living center working with and teaching others with disabilities how to get what they needed and how to advocate for thyemselves. I was familiar with the ADA and what it meant as far as equal access. If I remember correctly it is about making sure that people with physical disabilites/wheelchair users can also get into places that non wheelchair users can get into. This applies to making sure there are wheelchair accessable toilets in public restrooms. It does not mean just because you have a bladder disability that you can use a non public bathroom. Please correct me if I am wrong about this, I really should go back and reread the law.

    Comment


    • #32
      Originally posted by Judith56
      It does not mean just because you have a bladder disability that you can use a non public bathroom. Please correct me if I am wrong about this, I really should go back and reread the law.
      I took 2 developmental disablilties classes in college, but we didn't get into these codes specifically. You could be right. I am planning on calling the holine to get more info. My point is that other states have been able to pass laws in addition to the ADA that would allow customers with medical conditions to use non public bathrooms with an ID card or Doctor's note and I am trying to find out where NY state stands on this matter.
      I was saying earlier that in my state the store has the right to deny access to the bathrooms, but my point is that they should not be hanging signs up in their store stating that they appreciate their disabled customers business and will be glad to accomodate them and then do the opposite. But from what I could find online, I do believe you are correct.
      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


      • #33
        Thanks N'importe Qui

        Originally posted by N'importe Qui
        The law in New York does not require anyone to provide bathroom access, but I've actually found it pretty easy to navigate the city, bathroom-wise.
        Thanks for the tips. I really appreciate it! My husband took a day trip there yesterday (we are about 6 hours away from the city) and he said the subways are alot cleaner than when we were last there 2 years ago. He said the bathrooms wer very clean. So I feel alot better about our trip now. I am taking a travel john just in case the toilets are too scary to sit on!
        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


        • #34
          Thanks Day tripper!

          Thanks for sharing your stories with me. There have been so many days I get dragged down with self pity. I feel like I have lost so much of my dignity and am sick of dealing with things that the average 25 year old wouldn't even have a clue about (catheters, enemas, incontinence, etc). I complain so much to my family about how long it takes me to go places now. I can't imagine what life would be like in a wheelchair and how big the simple tasks I take for granted could seem. I really appreciate your insight and lovely sense of humor!
          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


          • #35
            For Illinois restroom access act: Look for "Ally's law" which also have some restriction, but it is a start.

            Huigs, Trishann

            Comment


            • #36
              how rude!

              Rachel,
              don't you sometimes think that we get treated that way because we don't "look sick" I do . I hate it when people say that to me. I know what it feels like to be denied public accsess to a restroom. I say you go girl, We need to shout it from the roof tops and tell these people what it's all about! I don't know about your local news, but ours will do a segment on people that have gotten treated badly or ripped off etc. You know what I mean? If your local news does something like that I would go to them too.
              Blessings and BIG HUGS!
              Eva:woohoo:

              Comment


              • #37
                Hi,
                I agree with the board here... you have every right to complain. Remember though ... kill them with kindness and really explain the pain and suffering that they caused. You will get farther by explaining with controlled emotion rather than anger.
                It is a law in some states to deny a patron to use the restroom. I am not sure about my state.. Georgia. That would be something we should all learn more about.
                In my life, there have been two stores that were adamant they "had no restroom". Both times I was fortunate to have my very mild but very outspoken husband with me... he told the person each time that he knew that no store could be built without a restroom and though it may be private and that it may be their policy that customers could not use it that I had a bladder condition and when I had to go... I had to go! One place still refused and he went to talk to the manager while I did like you and ran to get to the nearest McD's. The other place was not nice about it but let me go. They also let me take my daughter another time we were there when she was potty training.
                I used to be an asst. manager of a christian bookstore. We only had an "employee bathroom" and sure we worried about every one from the street coming in to use it... of course we worried about germs and them stealing any of the items we had in there (soaps, tissues, sanitary items, etc...) but for goodness sake when someone asked in urgency or if it were a child... we never denied them access.
                I am so sorry that happened to you and I would surely contact the company.
                Prayerfully,
                GL
                Faith is not believing God can; Faith is believing God will!

                Comment


                • #38
                  To Georgia L

                  Originally posted by Georgia L
                  Remember though ... kill them with kindness and really explain the pain and suffering that they caused. You will get farther by explaining with controlled emotion rather than anger.
                  It is a law in some states to deny a patron to use the restroom. I am not sure about my state.. Georgia. That would be something we should all learn more about.
                  That is what I have planned I started writing a letter this morningand I decided I will send it to corporate and mail one to the store. It may seem weak, but I do not want to go back to that store right now, even though my husband offered to go with me.
                  Please look into what is going on in Georgia. I am still trying to find out if any groups have been writing Congresspersons and Senator's here in NY. I will still write, but I would like to know if there is any legislation they are trying to pass here.
                  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


                  • #39
                    Thanks Eva

                    Originally posted by littleva
                    Rachel,
                    don't you sometimes think that we get treated that way because we don't "look sick" I do . I hate it when people say that to me.
                    I know, it is one of my biggest peeves. It has happened SO much since my IC diagnosis this summer. This was the first time I was refused bathroom access even though I explained my condition, but I get the "you don't look sick" treatment constantly! I have had to go into detail explaning how IC works and how much it affects my life to co-workers, family members, even Doctor's and nurses. People have gotten their feelings hurt when I don't go to after work gatherings, family parties, etc. One of the most difficult parts of living with IC for me is that I live in the country and NOTHING is close! Driving more than an hour at a time is very painful and I have to stop every 45 minutes to and hour on a good day, 15- 30 minutes if I flare. So I tend to stay home when I am flaring (which is probably 10-15 days a month).
                    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


                    • #40
                      I'm here cheering!

                      Hi! I am sooooo happy I foundyou all. Oh, I am so sorry that so many people (myself included)have experienced such rudeness. I was thinking how ironic it was (for me), when I would go to my favorite craft store back in the days when I hadnt been diagnosed yet, the ladies knew me there and even when their public restroom was broke they would give me the key to the employee one. I cheer and applaud all of you who are pioneering this fight and I hope that soon I'll have the chance to make a difference too. In the meantime, way to go! :woohoo:

                      Comment


                      • #41
                        The "you don't look sick" thing makes me nuts. I was so thrilled to get a diagnosis at first because I just know my family was probably on the verge of doing something like an intervention because they couldn't see the cause of my pain. If someone is paralyzed, or has burns all over their body, or whatever, people go out of their way to hold open doors and lift things, and whatever. I am so grateful I can walk, and see, and hear, and talk, but I got tired of my family thinking silently "She's a drug addict, she's only thinks she's in pain because she needs her drugs".
                        Fortunately now they understand, but it's sad I had to live with the stigma for so long, and all of us that have suffered that humiliation.
                        http://www.TheCraftyEwe.etsy.com

                        Comment


                        • #42
                          Yes, I have had IC for about 10 years now, and my family still doesnt understand why I have so much pain and the docs can't figure out what's wrong with me, why I don't go out with the gals, why I miss family functions, etc. My mom thinks I should go off my drugs, especially the pain meds. It's never said, but implied that it's all a sign of weakness. I think that people with this disease are some of the strongest people I've ever come across. Even in the toughest times, in all the (almost) indescribable pain, their heads are up and their hearts are big. I'm proud to be here!
                          Dianna

                          Comment


                          • #43
                            Welcome Dianna! Thanks for the great response and sharing your good and bad experiences.
                            -Rachel
                            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


                            • #44
                              Had a bad day....again!

                              Jilly I am so sorry about your hair loss. I have lost a lot, too. And I know how you feel when you say your family doesn't think you're "that bad off"! I was in a lot of pain today, having a flair and dealing with a bout of IBS, too. I was in tears all day, hubby came home and talked to my daughter who lives far away and can't understand why mom is so sick all the time and can't come to visit. He had the insensitivity to tell her that my IC was kind of like a bad bladder infection and smoke started coming out of my ears and I let him have it! Sorry... Now I will go take a Vicodin and a Zanaflex with my peppermint tea and try to calm down and not cry anymore today. Sorry to be blubbering.If God hadn't led me here, I don't know where I would have gone. Thanks for all of your patience and for embracing me.
                              Blessings
                              Dianna

                              Comment


                              • #45
                                Originally posted by dianna_rose View Post
                                Jilly I am so sorry about your hair loss. I have lost a lot, too. And I know how you feel when you say your family doesn't think you're "that bad off"! I was in a lot of pain today, having a flair and dealing with a bout of IBS, too. I was in tears all day, hubby came home and talked to my daughter who lives far away and can't understand why mom is so sick all the time and can't come to visit. He had the insensitivity to tell her that my IC was kind of like a bad bladder infection and smoke started coming out of my ears and I let him have it! Sorry... Now I will go take a Vicodin and a Zanaflex with my peppermint tea and try to calm down and not cry anymore today. Sorry to be blubbering.If God hadn't led me here, I don't know where I would have gone. Thanks for all of your patience and for embracing me.
                                Blessings
                                Dianna
                                I had a terrible flare and IBS attack on my 40th bday last week! It was awful, so don't apologize for blubbering. I was a wreck! I couldn't believe I had to spend my b-day suffering like that. I was all about poor me that day.
                                http://www.TheCraftyEwe.etsy.com

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