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We Are the Hero of Our Own Story
- Mary McCarthy
Friends Only

location: In Transit
Mood: contemplative
Music: "Are You Out There?" - Dar Williams

by John R Dybowsky and icon_goddess

~*~ Currently Closed to New Additions ~*~

creator unknown
Weirdest Doctor's Appointment EVER

Mood: bendy

Today was my appointment with the Neurologist. Ok, it's after 1am now, so yesterday, Sept 8th. I wasn't seen until about 10pm, and then I was in the office for quite a while, hearing the strangest, freakiest, good/bad thing ever from Dr. Luis Frias (who remembered me after 3 years, btw, and switched to English for my benefit).

"What has happened to you in the three years since I last saw you?" he inquired. "Why did you never come back?"

I told him my GP at the time had left me over in mental health because she said I had Fibromyalgia and was depressed. He wanted to know what mental health said. "Fibromyalgia, but not depressed." What was I on at mental health? I listed all the meds, including Effexor. "How did you feel on Effexor? Did you sleep well?" "I overslept. I was a total zombie. Why?" "Effexor is a stimulant." "What???" "You were never supposed to be on any of that. Why didn't they give you the Relafen I recommended?" "The GP said no." "Why didn't you come back for your EMG?" "Same reason." "I need to tell you something..."


"You don't have Fibromyalgia."


"Remember three years ago I tested your reflexes?" By then I was just wide-eyed and nodding. "Not only did all of them work, there were a couple you should have whacked me upside the head for touching at all." At that point I was gaping as much as my bad jaw allowed. "Hold out your hands and spread your fingers."

I did, thinking This is totally weird. What do my fingers have to do with anything? Dr. Frias took a long toothpick-like stick and placed it over my left pointer finger. "See how your finger isn't straight? This stick should be right in the middle of your fingernail, but your fingernail is way off to the side."

"That's been that way since I was little," I said. WTF with the finger thing? So I have weird hands. "So... I have weird hands. What does that have to do with why I'm in pain all the time?"

"You have advanced Degenerative Osteoarthritis."


I simultaneously burst into tears and started laughing. I asked him how 5 GP/Internists, three Psych Docs, and a Fisiatrist could all have been so wrong for 6 years, and he said "Frankly... most doctors wouldn't know an elephant if it sat on them," was his reply. He obviously thinks very little of non-specialists. He also said he felt really bad that I had to go through three extra years of medical ping-ponging and thinking I had Fibromyalgia rather than being treated.

He's known for three years. I've known for just over three hours. My brain still hasn't quite gotten around it.

I saw a Neuro when I was 16. He said Lupus. That came back negative. They bounced me to a Rheumatologist. SED rate came back normal. If only that Rheumy had taken two seconds to look at my hands!!! Rheumatoid Arthritis shows an elevated SED rate; Osteoarthritis doesn't. And it never crossed anyone's mind? Not when I was 9 and couldn't touch my toes, 10 and dislocated my hip playing tetherball, 12 and the endlessly unhealing hairline fracture in my right ankle, 15 and my left ankle turned under, 16 and my hip dislocated/relocated and left me in a wheelchair for a month, 20 and got random water on the knee, 21 and the TMJ kicked in, 21.5 and the pinched nerve in my back put me on a cane for 2 years, 22 when I first asked if I had Carpal Tunnel Syndrome because my fingers go numb and swell often, 25 and lost the use of my arm, or 27 and displaced the right meniscus in my jaw.

I thought all this crap was on the Fibro checklist and I'd just gotten bitch-slapped with the majority of what's on the list. I started listing these off, and Dr. Frias said "Yes" to the question "Is this related to the Osteoarthritis?" to all of them. "Aren't those all on the Fibromyalgia list, though? That's why I thought I had it." "TMJ is. Not a displaced meniscus. Your Maxillofascial Surgeon probably knows that, too. Did he ever ask?" Yeah. He did ask about arthritis, and I said I had a normal SED rate. Now I have to call him and tell him I have Osteoarthritis. It may change his opinion about my surgery. He may need to re-word the request to the Reform. I need to call the investigator from Patient Protection, too, once he gives his opinion.

I also need to strap my arm to my chest for three days, then gently physical-therapy it until I'm able to hold it at a 90 degree angle from my body, change all my meds as soon as I can get to the pharmacy in the morning, replace my medic-alert, research the hell out of Osteoarthritis, and completely re-define my approach to pain-management and injury-avoidance.

Holy shit, you guys.

The word I used when I called Leo with the news at 11pm was "bendy". My fingers are bendy, and so is my brain right now. I haven't quite absorbed it just yet. It's a genetic gift from Grandma Helen, and I'll probably pass it on to my kids. The only positive thing here is that it's treatable. And it sure as hell explains that partial compression in my cervical spine and why I'm half an inch shorter than I used to be.

Two-part EMG and an SSEP in October. Been there, done that, rather get inked (it hurts much less). Water therapy was mentioned. More counseling was recommended, but I don't want to go back to the public system... it's detrimental to my mental health. :P

Lots to think about.
Why I Fight for Gay Rights

Mood: awake

Some people wonder why I'm vocally Pro Gay Rights when I myself am not gay. Today I saw a movie that manged to put into words exactly what compels me to seek equal rights for gay couples. This is a conversation between a woman who has just figured out she is gay and her brother:

Sam: This is probably the biggest revelation of your entire life. It's normal to be going nuts. It's normal.
Gray: I don't feel normal. I'm sick and tired of everyone saying it's normal, it's typical, it's ordinary. I don't feel any of those things.
Sam: Well how do you feel?
Gray: Lonely.
Sam: Why?
Gray: Because I'm never going to be able to walk down the street holding hands with my partner without the rest of the world giving us a look. And may never have the wedding that I once dreamed of, and I may never have children. And one day, when I die, people will never give as much respect to my grieving lover as if she were my husband.
Sam: Gray, it's not as if you made a choice.
Gray: That's what terrifies me. It's so much easier to be someone else.

- Gray Matters

Why should anyone have to pretend to be someone they are not? I don't think they should feel the need to hide, but society forces them to. That, my friends, is why I am Pro Gay Rights.
Fibromyalgia Awareness Day

Mood: melancholy

I should probably be publically executed for this...

Mood: wary

because I'm obviously insane to be foisting this on the general public, never mind you guys.

That's me. One of my incarnations, anyway.

I'm now going to go find tea or chocolate, as I'm obviously in the midst of hypoglycemic shock. x_x

February 14th

Mood: cheerful


Happy Love & Friendship Day!

Did you know it's said if you put five bay leaves under your pillow on Juno Februa's day (that's today, folks) you'll dream of your true love? Pretty neat. I wonder if it works. And if my mother still has those bay leaves from the last time she made spaghetti sauce... ;)

That said... friends! I've noticed a couple of new screen names popping up in my inbox recently, but none of you have introduced yourselves! That's why this is the first entry you've seen from me in nearly a month, people. If I don't know you, how can I friend you back? So, please speak up, let me know who you are & where you know me from, and we'll see where we go from there. ^_^

To the rest of you, some of you who've been with me since before this journal was even conceived way back in (OMG!) 2003, thanks for always being there for me.
by lotrangel17

Mood: devastated

Heath Ledger is dead.

He's my age and I practically grew up watching him (does ANYONE but me remember ROAR??? Everyone's buying it NOW, fucking vultures.)

I can't believe he's gone. I can't believe The Joker will be his final role. But gods, what a role.

Thanks for calling, Mel. Sorry I'm still in no condition to talk. Mom had a hard time getting me to stop crying; she was afraid I was going to finish obliterating my jaw.

I can't count how many characters in my novels were based on Conor. Watch Roar, everyone, please. And this summer, in Heath's honor, watch the hell out of The Dark Knight. If not for him, do it for me.

I love you, Heath. Always have, always will. I'll never forget you.

New Mandy-esque Screen Name... Uh... Literally

Mood: rejuvenated

Okay, nobody freak.

This is your e-friend formerly known as mandysopranina: A honker of a screen name, really, and I've had to explain it and watch it be misspelled repeatedly since the year 2000. The reason I stuck with it for so long is that it was so original I could always find it available on any site. (Thanks, Mel! This s/n and I had a long and wonderful relationship. I'm simply too different now and it no longer suits me.)

Ah, well. I'd like to be a bit softer now, easier on the eyes and the brain. And more likely to get me sweet blinkies than that honker would.

As you can see, I'm now mandyesque; like Mandy, something Mandy would do or say, etc. Much simpler to get across. ^_^

Since I used a re-name token, the old url will always lead you here.

I'm now going to switch to this s/n on as many of the other sites I frequent as possible and compile a list for all y'all on my flist. I do hope you like the new name! ♥

Opinions, please!!!

Poll #979967 Mandy-esque New Journal

What do you think of the screen name mandyesque as opposed to mandysopranina?

It's simpler. I like it.
It's too simple. I find it boring.
WHY??? Are you trying to fry my brain? I hate when people use name-change tokens!!!
Mandy the Little Soprano is who you were. You should have kept it.
The Little Soprano lived out her time and deserves to be reborn.

What do you think would have been a mor suitable s/n, regardless of current availability on LJ?

OooH!!! Messaging for Money! Pick a charity!

Mood: enthusiastic

Microsoft works for you for once!

If you use Windows Live Messenger, add "I'm" codes to your display name to let Microsoft know where you want their money to go. Currently you can support the American Red Cross, Boys and Girls Clubs of America, National AIDS Fund, National Multiple Sclerosis Society,, Sierra Club,, Susan G. Komen for the Cure (Breast Cancer), and UNICEF.

If you use this version of Messenger already, why not add a code? They're very simple, like "*help" to stop global warming. If you're using a different version of Messenger, why not upgrade? WindowsLive is the best of MSN IM service anyway. And if you hate MSN Messenger... well, there are other ways to help your favorite cause; I hope you'll choose to do so.

Shout out  goes to Nina's daddy for posting about this on MySpace. ^_^
Summing Up 2006

Mood: hopeful
Music: "Beautiful" - Joydrop

Things that Changed, Things that Remained the SameCollapse )

Happy 2007

My plans for tonight consist of finishing my freelance webwork, making sure my room is tidy, and a bottle of sangria. My only New Year's Resolution is to put more effort into everything that matters to me. Everything. ^_^