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21

Aug

A short TTC inaccessibility rant…

Today. Queen’s Park Station. Services a zillion bureaucrats - and part of Hospital Row. So you get a bunch of commuters - and some people who use the TTC to get to their hospital appointments with a variety of disabilities.

They have elevators. Yay. A lot of stations don’t. But they stuck the platform access elevator behind a gate that only takes a token or a monthly metropass. The token-spitter machines? You need to be of average adult height in a standing position to use them.

So, a woman with a large wheelchair can’t use the gate. Or the machines. She’s got to try to get the attention of the dude in the box - and the little “aisle” is too narrow for the wheelchair, and he can’t see her.

And the throngs of people trying to run for their Go train got irritated.

"Hi! Can I help?"

"I can’t use the elevator without a token."

"Want mine?"

"Sure." She gave me three bucks for it. I went through the cash turnstyle, and she went back to the elevator.

If you see an elevator in the TTC and think, “Oh. Accessible.” you’d be wrong. We’ve been dithering around worried about the letter of the law, rather than thinking “how is this supposed to work for the person in the wheelchair? or with the guide dog?”

As we make medical and technological advances, more and more of us are going to fit into that “disabled” category. So if you think, “not my problem”, you may want to stick a “YET” on the end of that thought.

So, let’s make sure this stuff works for everybody. Because you don’t know when it might be you that’s stuck behind a barrier.

One for you dog lovers… but he looks kinda like Louis…

liserichardsonphotography:

And because I know how much you all love puppies, here’s a bonus set of new photos. Nilla is the name of this Finnish Lapphund puppy, and what a sweetie she is too!

(Source: facebook.com)

Anonymous said: I don't know what to do, I feel so lost. I have hypermobility syndrome, but two rheumatologists say i don't quite have EDS. Pretty sure I have POTS too. I haven't had any dislocations, I sublux a lot and I don't bruise or have weird scars or any obvious heart problems from examination.

i-am-lost-in-the-tide:

irishzebramel:

the-ginga-nator:

the-ginga-nator:

i-am-lost-in-the-tide:

(Cont.) Same anon here…I’m really sorry, I feel guilty and you don’t have to respond, I don’t even know you and this is sort of creepy…but the only thing the rheumatologists said to do was exercise and go to physical and psycho therapy because “I’m not motivated to exercise” How do I get an EDS diagnosis? How can I manage this? I already see a psychotherapist and she doesn’t help and I haven’t started physical therapy yet, but I’m not in agonizing pain, so could I still have it, others don’t.

Don’t apologize at all. I am here to help if you need it. I say it all the time but EDS comes in many different flavors and there is definitely a spectrum of severities. My rheumatologist puts me in the same boat as you. According to him, I have HMS and do not have enough signs to warrant an EDS diagnosis. I was actually diagnosed with EDS by a cardiologist-physical therapist combo. My cardiologist saw the severity of my POTS and MVP and then asked my physical therapist to do a Beighton Scale on me. It’s a very odd way to get diagnosed, but you gotta do what you gotta do. One thing to remember is that an EDS diagnosis is very subjective in my opinion; it all depends on what doctor you get and what the weather was like that day (not really, but you get my point).

I would say keep working towards a diagnosis, but don’t get your heart set on EDS. I am not saying you don’t have EDS, just that you should keep an open mind. Have you considered seeing a geneticist? They are good people to pursue when it comes to anything along the lines of EDS.

Would some of my fellow zebras like to take a shot at this? agirlcalledcaptain, heyatleastitsnotcancer, the-ginga-nator, and heartfilledminds would you all mind taking a look at this for me and giving me your two cents? Thank you ladies.

Honestly I suggest getting some second opinions and seeing several kinds of doctors. I will warn you though many of the physical therapists have done more harm than help with me. Just take everything day by day and discuss options with your GP if they’ve heard of EDS. One of the most helpful things for me was researching the hell out of EDS when I first got diagnosed. It helped me understand what was going on with my body even though it’s kind of all overwhelming at first. Talk to your family as well (hopefully they’re supportive!).
Good luck to you anon! I’m always here if you want to talk!

I also forgot to mention when I was diagnosed I was diagnosed with HMS but progressively my condition got worse and developed into EDS.

I was diagnosed with HMS too as my rheumy said my symptoms not severe enough to be called EDS. But he used the two terms interchangeably during the appointment and said it’s a spectrum with HMS on one end and EDS-Hypermobility type on the other. Many experts now say the two conditions are the same, even if they were different it is impossible to distinguish between the two, and the treatment for both is the same. So although I am “officially” diagnosed HMS, as is my son, I call it EDS and so does my doctor. The label doesnt really matter as long as people take you seriously.

I totally agree. It’s like my favorite saying - Close enough for government work.

It’s sad how we need a big-name diagnosis to be taken seriously. My elation at finally having a name for this bullshit was almost immediately deflated by realizing… and now what? 

For my two cents:

1) The only added medical value I’ve really had in having an Official EDS diagnosis is knowing to get screened for big things like aortic aneurysm. Even if you’re Officially EDS, there is very little in the way of support or treatment. I think you should look for other potential diagnosis, but it’s more important you find effective ways to support your health, whatever that may mean. But I understand that having a name for it makes it much easy to shut down people who think you’re a malingerer. And that’s a huge, huge problem.

2) it *is* a spectrum disorder, and not one that’s well understood. Not having a name for it does not make your illness invalid or mean doctors should not take your issues seriously and keep trying to find you appropriate care and symptom management. Or that you should take anyone’s bullshit in being dismissive over your health issues.

3) Garden variety doctors -even specialists like neurologists and rheumatologists- aren’t equipped or trained to make this kind of diagnosis. If you’re a suspected case, you need a geneticist to make the actual diagnosis and typing.

But - this is very important - if you don’t have the official EDS diagnosis you need to be careful about declaring it to gov’t benefits or insurance. They *will* ask for proof.

I hope this helps. RR

20

Aug

asylum-art:

Wisteria bonsai proves big beauty comes in small packages-DDN Japan

19

Aug

Like the idea of using “supershredded” organza, all feathery.

Like the idea of using “supershredded” organza, all feathery.

18

Aug

Wearing a plastic tiara and a $3 boa to a club where there are drag queens is like bringing a butter knife to a gun fight.
Joan E Edwards
plur-panda:
nyooooommm

plur-panda:

nyooooommm

(Source: awwww-cute)

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17

Aug

manufactured1987:

What a week has it been for me! I got my hair super white and in a classic finger wave at the beginning of the week at hairstory, had four male models all at my apartment for a editorial, and went to Diesels grand opening in Brooklyn! This outfit was for one of those days…

This photo was taken by Willie Greene who I work with and is the founder of WeTheUrban magazine. So happy I saved these photos!

Outfit: studded jacket and leggings by forever 21, black crop top by H&M, jewelry by BOND hardware.

Make up: stain lipstick by Kat Von D, Black eyeliner by Sephora, mascara by Nars.

Jilly ready to rock…

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