I've written out this whole plan of how I'm going to re-do my room and make it fabulous.
And let's not even go there with my love for pricey mid-century modern furniture.
Ever since I was little, my grandmother told me I'd better get a good job because I had "champagne tastes and a penny pocketbook."
Yet another piece of advice unheeded, though not intentionally.
Ever since I've been home I've been driving myself nuts doing housework, writing poems, editing poems and submitting poems. Anything to feel useful. Okay, so I can't do regular work, but I can still write and do housework.
Tomorrow I have to head down to the local public aid office while praying continuously to Jesus not to see anyone I know. The last time I went I did and we ended up talking and she was telling me about her kids and then she asked me about my non-existent kids and I half-mumbled, "I'm disabled."
"Oh." she said. End of discussion.
I'm reminded nearly daily how people feel about people like me, siphoning off the hard-earned tax dollars of others while relaxing and watching cable. One guy wrote a long, impassioned editorial to the local paper calling us "pigeons" as in people who relied on the handouts of others for their well-being. I actually cried about it.
I think it was because it was not long after one of my doom-atologists(thanks Ioma) kept telling me to get a job. And I kept trying to tell her I wanted to!
And my other doctor who accused me of letting the pain control me, as if this whole mess were some sort of character failing instead of a GENETIC MUTATION.
My grandmother also used to say that doves and pigeons were practically the same bird and it was silly for them to be praised in one context and hated in the other.
Also, I don't know how much readership I have, but I wanted to mention that the world-renowned Cleveland Clinic is having a conference on the management of heritable connective tissue disorders. They will be discussing not just EDS, but Loeys-Dietz Syndrome and Marfan Syndrome. Some of the EDS heavy-hitters who will be in attendance are the eponymous Dr. Hal Dietz himself, as well as Dr. Peter Byers.
The cost for patients is just FIFTY dollars, far less than what the EDNF charged for their conference. The conference is November 11-12 and will take place at the hotel adjacent to the Cleveland Clinic's campus. More information can be found here.
If anyone wants to come up and attend I have a spare bed. I read through the presentation titles, and although it's more geared at treatment than information, I pronounce a worthwhile investment, particularly at the price which is the same whether you register online in advance or at the door the day of.