So humiliated!

[kjd]

god I am so mad that they treated you this way! I think you should complain without a doubt that is awful! I would have been exactly the same as you but would have probably ended up screaming at the store lady! God how dare they descriminate against people like that. Just because its not obvious to look at you that you have a disease/condition it does not mean you dont (if you know what I mean).
I hope you feel better soon
x

[RAS6]

Jilly and Dianna

I am so sorry you both are having a hard time right now. My family didn't understand IC at all and it took lots of explaining for them to realize that this wouldn't go away with antibiotics and that even when I take all my meds and follow the diet I still have days I will flare. I don't have as much control over flares and bladder spasms as they think. Thankfully my Mom, Aunt and older sister all went online and did some research. My aunt even picks up pear juice and organic canned soup for me for family gathering when I can't eat or drink what everyone else is having! She is so great! The hardest one to educate has been my husband (God love him!) but he is getting there.
I can sympathize with the hair loss. I only had one very small bald spot, but all over I am thinner and my naturally baby fine hair just hangs now. I am off of Elmiron now (after 7 months had no improvement and now cannot afford it, so Doctor took me off) and the bald spot is growing back in. I am getting a shorter cute cut this weekend. My hairdresser friend said when you have hairloss due to nutrional problems or medication usually a shorter cut that you can tease the ends out will disguise it well.
I hope you both feel better soon!

[RAS6]

Update....

You have all been so great and supportive to me and I wanted to share what has been going on since I last posted. I wrote a very clear and polite lettera few weeks ago to the company explaining my experience and how IC and similar diseases requiring bathroom access are truly disabilities. I emailed one to the corporate office and sent a copy to the particular store I shopped at. I haven't gotten any responce. I guess I shouldn't be dissapointed. I just thought I would at the very least get an impersonal apology letter. Well, it has only been about two weeks. And the whole point of me writing wasn't to get an apology but to make them aware of how I was treated. But it does feel like I am a VERY little fish in a huge pond!
Thanks again to all of you who supported me and posted encouraging words!
Hopefully we will some day live in a society were we will never be denied the restroom again!

[ICLori]

Rachel, I'm so sorry this happened to you. I am aghast at how badly you were treated, and I wanted to just cry when I read your story. How dare they deny you bathroom access?

I am so proud (in the sense of being an IC sister, I mean) of you for advocating for yourself, for having the courage to go back and talk to the manager, and draft a letter to send up through the management. And also for talking to the ADA to see what actions might be taken to help others in our situation. Bravissima for you!

I'm so sorry this happened to you, but thank you for telling your story here, and for all that you are doing to make things better for those coming after you. Please let us know if there are any letters we can also write in support of you, or if there is anything we can do. I know I shouldn't speak for anyone but myself, but I am totally convinced that all of us here would do anything we could, to support our IC sisters.

Blessings,
Lori

[colourmetwice]

No Peeing On The Plane

No only is flying difficult in the first place, but if yo have to go to the bathroom as soon as you get on or soon after take-off, you're not allowed to.

At least, I have been refused just about every single time.

I've even tried just getting up and going without asking and lo and behold there's a flight attendant refusing right there to deny me relief of my pain.

I try to explain to them but they just say over and over again, "its regulation" that no one can use the bathroom during boarding or during the safety brief (but of course right after that you are taxiing and taking off and you also can't go).

Once though I had a very nice male at first say no, and then, after a few minutes of him glancing in my direction and seeing how obviously uncomfortable I was, he snuck back down the aisle and whispered "If its really an emeregency and you can be quick go ahead". Yes!

AND, at least as far as US Airways goes, I had a fligth attendant admit to me that she wasn't allowed to give me permission to go to the bathroom, but she wouldn't stop me if I needed to go. I can live with that.

My husband lives in Virginia Beach and I in Washington state so I'm looking at a five-hour flight no begin with.

One thing that helped before I had those BodiHeat heating pads (which rock! (much better than Thermacare) I called ahead and explained that I had a medical problem and if I brought a microwaveable heating pad would they be able to heat it up for me upon request? They agreed! Something to keep in mind...

[dianna_rose]

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.

MOONHEART!!! Happy Belated Birthday! I hope you are feeling better now. and thanks so much for the encouragement.

And Rachel, thank you so much for the kind words.

I feel like a whole new world has been opened to me now that I've been here. My Uro never said anything to me about changing my diet, staying away from certain foods, etc. But--DUH--I probably should have had half a clue And when I was diagnosed, there was little to nothing out there to learn. Now I have hope. And new friends. Jill and all of you angels out there, THANKS!!!
Blessings,
Dianna

[Moonheart]

MOONHEART!!! Happy Belated Birthday! I hope you are feeling better now. and thanks so much for the encouragement.

And Rachel, thank you so much for the kind words.

I feel like a whole new world has been opened to me now that I've been here. My Uro never said anything to me about changing my diet, staying away from certain foods, etc. But--DUH--I probably should have had half a clue And when I was diagnosed, there was little to nothing out there to learn. Now I have hope. And new friends. Jill and all of you angels out there, THANKS!!!
Blessings,
Dianna

Thank you Dianna!!!

I'm so sorry I didn't see this sooner! I appreciate the birthday wishes so much.

HUGS,
Moonheart

[RAS6]

Dianna.
I understand. The first Doctor I saw said he suspected IC, but didn't explain anything about it! He just said take proced and come back in a month for more tests. I was shocked when I went home and saw IC could be so complicated, was chronic and has no cure currently. He didn't mention anything about that, or diet! I was in such bad shape the next few weeks I went to his nurse for a bladder installment and she was mortified to find out what I had eaten those past few days! (pizza, yogurt, soda, etc) Changing my diet is still a struggle for me but it does bringsome relief (not enough that I am ready to stop looking for more relief though! I ended up going through 3 Docs at 2 practices before seeing Doc #4, my current Uro who is an IC specialist.

[jiriji]

Wow, i've just been reading this message thread and have been horrified at what some of you ladies have been going through, but also amazed at how you seem to bounce back so well!

I'm really new to this and still haven't accepted the fact that my "problems" may be permanent. I just can't bear the thought of yet another health issue to deal with *sigh*. One blessing i have is a very supportive husband who hates to see me in pain and will do whatever he can to help.

I haven't yet had the experience of being denied access to a store restroom but found it a little humiliating to have to ask the cashier in my local CVS if i could have the key to the ladies' bathroom (only 5 minutes after using the Walmart one across the road - that's how bad the frequency was).. and then to have her announce loudly over the PA system: "Customer needs to use the restroom. Would a supervisor please unlock the door for her." Of course it seemed like everyone in the store turned around to stare at me! LOL i can smile about it now but it was embarrassing at the time. Still, if they had refused me it would have been even more embarrassing, if you know what i mean!

I don't have the use of a car at the moment, so have to walk or use buses, and have to hope that i'm never more than a few minutes from a public toilet. I think i've visited just about every fastfood restaurant in this area, and not for the purpose of buying food! When you have bladder and/or bowel problems it pays to know where you can "go". Does the USA have something like the Australian National Public Toilet Map? It shows all the public restrooms in the major cities - very handy information.



~jiriji~

[Moonheart]

Oh we just LOOK like we're bouncing well.

I used to walk everywhere, and now I don't do any walking because even if I walk down the road from my house, I may get caught out with a bladder issue, or an IBS attack, or leg/hip weakness.... it's getting so bad and I'm just now coming to grips with the "permanence" issue. I am trying to decide if I should file disability or not, and it is more an issue of admitting failure for me if I do file.

There is an internet site that is toilet issues and stuff, but I don't have it off hand. I'll see if I can find it and post it.

[jiriji]

If you could do that it would be very helpful.

Thanks in advance!

~jiriji~

[Portia17]

MOONHEART

GO TO WWW.BINDERANDBINDER.COM

THEY GOT MY DISABILITY FOR IN 7 MONTHS AND I DID NOT HAVE TO GO TO THEIR OFFICE OR SEE A JUDGE. WE DID IT OVER THE PHONE

I HIGHLY RECOMMEND THEM

HUGS,
MARY

[plaedes]

RAS6, the best way to address this situation is to call your building inspectors office to find out what the rules for New York are. In Tennessee it is illegal for ANY buisness to deny restroom access to ANYONE. This is code. Just look for the number for code enforcement and call them. They should be able to tell you whether it is legal or not. If it is not legal for them to deny you access then you can press charges. It may not get you anywhere really, but knowing your rights regarding this situation is helpful. When faced with this situation myself I just tell the ignorant worker that if they deny my access then I will call the local building inspector and could possible have them shut down. This usually ends all discussion on the matter and they graciously show me to the restroom. Just don't allow this incodent to ruin your self-esteem. Humiliation is the typical first response, but anger tends to override later on. Don't let this become your driving force. Just find out about your rights, use the knowledge you gain in a diplomatic way and hopefully all will be happy in the end.

[RAS6]

Thanks for the suggestion Kelley. I had thought to look into that, but wasn't sure who to contact exactly. I looked up the number for the building inspector's office for that county and found it easily today. I am getting ready to go on a trip to NYC tonight, so I will call when we get back. I appreciate your wise words as well. I still haven't gotten really angry, I am not sure why, but maybe it isn't a bad thing. In the letters I wrote I mainly addressed the fact that a large company like this should be aware of what defines a disibility before they loosely throw the term around, and that millions of people in the US alone have disibilities causing them to need immediate restroom access. I made sure during the whole thing not to get personal against either the employee or the company, even when it was happening. I actually just looked into what the code laws are here in NY and I did find an article about a women shopping at a large thrift store in NY who was denied access and became incontinent. She called the police and reported the matter and the next day the store not only let people use the restrooms, they had signs placed so customers could find the restrooms! I won't be calling the police, but the building inspector's office should be able to let me know if the store is considered large enough to have to allow restroom access to customers. It is a decent sized store and is in a very old shopping complex, so I am starting to think it is very possible they are violating building codes.