Bladder test pass, accessibility fail 2

Yesterday I went in for testing of my bladder and it was a disaster accessibility wise. [Warning: this blog entry contains descriptions of medical trauma.] They said to get there at 3:15, so we did. Brad got a great shot of Hestia in line to check in! She is a white and black Japanese Chin wearing a purple service dog vest, and she is very funny looking with big eyes and a smushed nose.

We hung out in the waiting room for 15 minutes, where Brad got some more funny looking shots of Hestia in my lap.

They took us back to a room and took my blood pressure etc. But then they left us there for 45 minutes! To pass the time, since there wasn’t good cell phone signal so we couldn’t play online, Brad took lots of photos! Below are some of my favorites. In them Hestia looks cute, I talk with a nurse, we get pictures in a mirror, and I took pictures of Brad with the small reflector he was using to get better lighting.

I started to get anxious about the upcoming test after a while. I am a sexual assault survivor, and they were going to be doing a lot of things with catheters to test my bladder. But I comforted myself with the thought that I had my two best support people with me—Brad and Hestia.

I’ve had Hestia on my lap for numerous medical procedures. She’s on my lap every time I go to the dentist. I’ve gotten stitches with her on my lap. I’ve had pap smears with her on my chest. So many medical procedures I’ve been through, and everything except for surgery she’s been right there to help me. She just lies there and provides pressure therapy to calm me down so I don’t have panic attacks.

After 45 minutes in the room, I was also getting nervous that we’d be unable to get home to Alice before she needed to potty. The doctor’s office is 45 minutes away from us, and Alice can only hold it about 4 hours reliably.

Finally they were ready, and took us into another room.

At first when we went in the room, they took out the chair that a support person can sit in during the procedure so Brad could fit there in his power wheelchair. I got ready for the procedure, and then a nurse came in and told me that Brad and Hestia would have to leave.

Brad nicely said “Well I’m optional, but Hestia isn’t”.

The nurse explained that there would be lots of people in the room, so there wasn’t room for Brad’s wheelchair. And that Hestia might damage their equipment by pulling on wires or somehow scratching the expensive equipment.

I tried to argue my case, but they weren’t having it. No Brad and no Hestia, so they went outside the room. I warned them I’d probably have a panic attack, and the nurse said she’s used to her kids having them so no problem. I guess she thought I was worried that my panic attack would be a problem for her.

By this point we had been there waiting almost an hour and a half, and I knew we needed to start soon to get home to Alice. So I just said fine, let’s try it.

At first it wasn’t horrible. I got through the first test OK. Then they started the second test and I started to panic.

My panic attacks are pretty silent and undetectable to others. I have had them so many times that I’m very good at just holding them in except for the telltale tears streaming down my cheeks.

So I’m panicking and crying. They are just doing their procedure. Finally one nurse asks if I’m OK. I respond truthfully that I’m trying not to panic (because I am actually panicking at that moment). She asked if I wanted to take a break, but I knew that if I took a break, I’d only have to come back and finish the procedure and probably panic again. Plus I had Alice at home to think of. So I said just get it done.

I was having a full blown panic attack during most of the second procedure. After that one interaction, no one stopped to ask if I was OK. No one cared that I had tears streaming down my face. I was just a vagina on a table. And they were all business.

Finally they were done and I was reunited with Hestia and Brad. I was so happy to see them again, and Hestia was pressed up against my chest as hard as she could. Below is a picture of me after the procedure with Hestia helping.

The doctor came in to discuss the results, and when I told her I was having a panic attack during the procedure she seemed shocked (the doctor was not there for this second procedure—it was two nurses and there was plenty of room the entire time for a wheelchair user in the corner).

Her point of view is that I should have asked them to stop and not done the procedure. But I am always trying to be a good patient. I don’t want doctors to be mad at me, so I felt like I had to get the procedure done.

We talked again about how Hestia is with me in every other medical setting, and the doctor again said she might have gotten tangled in cords and wires (none of which were anywhere near my chest or face for the entire procedure—it was all concentrated around my bottom half).

The doctor said that the nurses probably didn’t realize I was having a panic attack because one third of their patients cry during these sorts of procedures. Gee, I wonder why… They nurses pretty much ignored me the whole time. Not once did they warn me before touching my sensitive areas. They never explained what they were going to be doing to me. It was just one big series of medical traumas.

By that time I just wanted to leave. I don’t even really remember the rest of what we talked about, except that because of my panic attack and my test results, they don’t think I’m a candidate for botox in my bladder.

We left without making another appointment, and honestly I’m not sure I will make another appointment. If she wants me to continue on this med, I can have my GP prescribe it. I definitely don’t feel respected or welcome at this urologist anymore.

We had to stop by the pharmacy for antibiotics on the way home, and made it home just a little after 4 hours since we had left. Alice had not pottied in her crate, so all was well with her.

I am thinking of contacting ASAP (Advocates for Service Animal Partners) to have them do some advocacy on this issue for me. They left me without a support person or my service dog. They weren’t even allowed in the room for me to look at, after we repeatedly tried to advocate and educate for me. It was awful.

There is guidance on service animals in medical facilities by the CDC. There are very specific reasons a service animal might be denied in medical environment, but unfounded worries about damage to equipment are not among them. They also say that speculating that a service animal might be disruptive isn’t enough of a reason to deny them. The default is to allow them, performing a case-by-case analysis if there is some event or evidence a disruption is likely. This doesn’t even touch on the ADA violation of excluding my spouse because of his disability when a support person is clearly allowed normally.

Theoretically, we could have tried harder to provide professional disability training for free to the employees. But we were there for medical care, and after the trauma, I just needed to get away so could feel a bit of safety again.

Below are the pictures we took of our (mis)adventure. In them, I have curly brown hair and am wearing a long blue dress. Hestia is a white and black Japanese Chin wearing a purple harness. Brad is a power wheelchair user wearing a red and gold vest, Carolina blue shirt and sweater, and red and blue hat. Understandably, most of the pictures are from before the procedure.