Daily Archives: 30 August, 2010

I Wonder If I’ll Get Delay of Game…

I received an email from my Primary Care Manager the other day.

She responded to my message that I needed refills even though it wasn’t time for me to come back in for a visit yet to let me know she had arranged for all of my scripts. At the end was something that winds up keeping me awake with worry.

“I’ll be leaving [the hospital] 10 September.”

Fuck.

“I’ve told [new doctor taking her place] about you to make sure he is up to speed.”

*panic begins*

“I wish you well.”

I’ve made bad sports metaphors about the way that good health care goes when you have a chronic condition, and your doctor leaves. Basically, my center is out for the season. The thing is, pucks just started flying in from all directions as very slight things have started to go awry, and we’ve been trying new things to fix them. I’ve agreed to a few new referrals that I’ve declined in the past (such as seeing the Neurologist when in the past I’ve been shamed and yelled at by them), some alternatives to my current regimen.

Now, I feel not only ill-prepared for the season, but naked on the ice for the game.

A change of doctor, especially when it is unexpected is alarming. When things have been going well for so long. When my current doctor has done so well advocating for me. When she has insisted that I not be ashamed to ask for more pain medication. When she has listened, not only to my medical concerns, but to my life concerns, because she really believed that they were equally important.

Perhaps the new doctor will be just as wonderful. Perhaps he will storm onto the ice and intercept the puck and make a saving play, and find answers we didn’t see before. Perhaps things will continue and I will notice little or no difference. I might get lucky and this new doctor will allow me to email him for prescription refills to.

But what if he isn’t?

It’s the “what if?” game that is causing the voice inside to shriek that everything is going to fall apart. If for some reason this new doctor turns out to be a nightmare the process of finding another one is not simple. It takes time. It takes spoons. It takes a calm place in my mind that I am not sure I can achieve during this stream of events.

*The title refers to this hockey penalty. In keeping in the spirit of my bad sports metaphor, for fussing about a new doctor…

Recommended Reading for 30 August 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Venus Speaks: Despair

Now, I don’t have a good history with the social security office. The two times I visited one, I was brushed off. I don’t know if they took one look at a mostly able-bodied young girl and said, hey, she must be trying to trick us, but it sure as hell felt like it – they told me that I needed to apply online, entirely online, and that they were so far booked into the future that there was just no point in scheduling. As in they refused to schedule me.

And lo, as I am filling out the disability report tonight, not only do I lose the internet and all my progress, but I just happen to notice before it goes down that you can’t apply for SSI online, you can only fill out the adult disability report, print off a few forms, and schedule an interview. You know, that interview that my local office couldn’t afford to give me.

Those Emergency Blues: The Title is About the Power

Titles, in short, are about establishing status and power. Why else worry about them? They are utterly irrelevant to actual patient care and one’s ability to do the job. Insisting on their use can create an atmosphere of professional intimidation that suppresses the free exchange of information. Health care professionals expressing power over patients is definitely not a good way to create therapeutic relationships. Implicitly saying (or believing) the title makes you a better person or supplies you with definitive or superior knowledge about patient care is dangerous as well as destructive to collaborative relationships with other health care professionals. In the end, it results in bad care of our patients, and of each other.

Pipecleaner Dreams: A Modicum of Sense

Well, at least the Academy of Arts and Sciences haven’t completely lost their minds. I was appalled when I first heard that the TV show, Family Guy, got an Emmy nod for their song, ‘Down Syndrome Girl.’

Haven’t heard it? Well, here is a sampling of the lyrics:

And though her pretty face may seem a special person’s wettest dream. […]

You must impress that ultra-boomin’, all consumin’, poorly-groomin’, Down Syndrome girl. […]

ABC News: Too Special for the Special Olympics (via Patricia E. Bauer, thanks to Nightengale for the link!)

The problem arose when Jenny’s school district entered an agreement with the Special Olympics, promising to abide by the organization’s rules. That meant no court time for Jenny, though the organization won’t say whether it’s because of the oxyen, or Simba, or both. [sic]

Ablegamers: Bungie Punishes You For Quitting Early

The fear is that disabled gamers who need to quit in the middle will be labeled as rage quitters. Certain people’s disabilities can hit at a moments notice, forcing them to quit out of a game. While according to the statement Bungie is only punishing those who habitually quit, it doesn’t discuss how they gauge that. Is that a certain percentage of total games? Frequency? What?

What has gone so wrong that it has come to this? Has Bungie exhausted all other options before walking down this path? Not really.

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