Gimps unite!

Mom and I are heading out of town tomorrow to attend a disability caucus. We'll get home Friday afternoon or evening. I've never been to one of these, so it'll be interesting. Tomorrow's highlight is a performance by Flame, a rock group made up completely of people with disabilities.

Everyone be nice to each other and share your toys while I'm gone. *hugs*

Ouch!

If this "cold front" that's moving through the state today is making my legs ache like this, I have a horrible feeling that Spring with all its thunderstorms is going to be hell.

Yay.

Big News!

I'm going home Feb. 2nd.

*happy dance*

2010 in Review

As I lay in bed late last night (early this morning) listening to the fireworks and gunshots ringing in the new year, I was momentarily depressed as I realized I had spent more than half the year in rehab. I'd lost my entire summer and fall, and I'd spent my birthday and favorite holiday (Halloween) locked up. My poor, dear Moby suffered an early, untimely, and certainly undeserved demise at the hands of a careless young man.





My body, as though not experiencing enough physical challenges, was busted all to hell, resulting in me being pinned and plated and rodded to the point that I now have more hardware inside me than a Home Depot. I thought of all the rough things my friends have also gone through this year.

But suddenly I thought, "Wait. It's the first hour of a new year, and thinking of the negatives is not the way to start it." So instead, I started thinking about the good things that have happened in 2010, and suddenly I realized that even though so many bad things have happened, some pretty amazing things have happened, too.

March -- My cousin Josh and his wife Kyla welcomed the newest member of their family, Makynna Lynnlee. "Kenya" (a slip of one of her sisters' tongue) is Josh's fourth and Kyla's second.





March -- I was introduced to the group Great Big Sea ("from the tropical island of Newfoundland") via a concert my friend Lynlee took me to.








March -- My friends Jonikka and Erik were married on the Spring Equinox. I was the maid of honor.







April -- I received notification that I had been awarded one of the prestigious Ford Fellowships to help me complete my dissertation.

April? -- My friend Suzanne successfully completed her Ed.D. at UCSD.

May -- My friend Anita quit her job. You might think this would be a bad (maybe even a horrible) thing, but if you knew even half the s--- she had to put up with from her boss, you'd realize how fabulous this is.

June -- My cousin Amanda and her husband Jim welcomed the newest member of their family, Grace Ellen. She is Amanda's first and Jim's third.





July -- I got up in my chair for the first time in a month.

August -- I went with my folks to see Celtic Woman in concert. Fab. U. Lous.

August -- I celebrated my 39th birthday. Many people dread birthdays of this magnitude, but not me. According to the doctors in London who diagnosed me when I was 3, I wasn't supposed to live past 20. Every birthday since then has been a celebration.

October -- My fluctuating asymmetry review -- on which I'd been writing and rewriting for four years and had submitted to three journals -- was finally accepted for publication by Reviews in Fish Biology and Fisheries.

October -- I officially became eligible for the state program "Money Follows the Person" because I had been in rehab at least 90 days. This program automatically gets me paid attendant care at home when I finally escape this joint -- something I've been trying to get since I moved back to Kansas last December.

November -- My friend Marrus married her very own G.I. Joe (term used affectionately) in a "shotgun" wedding as Jay will be deployed very soon. You can see their custom cupcake topper and a picture of their gorgeous selves on Marrus's LJ.

November -- I got to go home for the first time in six months.

November -- My friend Amanda and her husband Roger welcomed the newest member of their family, Kaylynn Lee. Kay was a little early and experienced some respiratory issues, but to my knowledge she is now doing well. She is Amanda and Roger's first.

November -- My friend Anita successfully completed her masters thesis at WSU. She was so amazing.

December -- I was contacted by a masters student in the Philippines and a professor in Germany requesting copies of my review as their universities do not have subscriptions to that journal.



So now, my goals for the year. I really only have two major ones. First, I'm getting out of this rehab hell. Seven months is far too long for someone like me to be locked up, and it's time to go home. Second, I'm completing my Ph.D. It might take me until November, but you can put money on being able to call me Doctor Dawn no later than Christmas. Early notice to my New Orleans tribe -- you are hereby invited to my dissertation presentation and to my hooding at graduation, and we should start planning where to have my celebration. As to that last, there had better be fruity-rum drinks involved! To my biological family and to my Kansas pack -- anyone who wishes/is able to come to either the defense or the hooding is soooo welcome!


Finally, I'd like to thank everyone who has been so supportive of me over the last seven months. Your visits, calls, and emails have really helped keep me sane. I love you all, and I hope your 2011 is filled to overflowing with love, happiness, and blessings in your personal and professional endeavors.

Steamed

Somebody in the voter registration office dropped the ball and failed to send out the mail-in ballots for all the voters registered here at DH&R -- so now I am not going to able to voice my opinion about our next governor, attorney general, or congress-people. You can bet that I will voice my opinion about the irresponsibility of the voter registration office.

Still around

Still at the rehab facility. Still healing, though not nearly as quickly as I'd like.

We now return you to your regularly scheduled day.

Yes, I'm alive

For those who didn't know, I was in a car accident on June 7th in which a 20-year-old failed to pay attention to the large red stop sign in front of him, causing us (my parents, Reba, and myself) to hit him at 50-55 mph. Mom bruised her right hand and knee, Dad had a concussion, Reba's sutures from a surgery that morning tore open, and I broke my right humerus and both femurs and cracked my left tibia and fibula. I underwent a six-hour surgery on June 9th to attach plates and screws to my humerus and right femur and a rod along my left femur. Basically, I now have more hardware in me than a Home Depot.

I was in the hospital for three weeks, then I was transferred to a rehab facility where I still am. I get therapy on my arm five days a week and on my legs six days a week. I'm not healing as quickly as *I* would like, but I am healing. Moby (my van) was totaled, which upset me a lot. She was a good van, and she didn't deserve to go out like that. My folks quickly found me a new ride, though -- a maroon-colored 1993 Ford with a working AC. I have christened her the Red Baron.

Isn't life grand?

ADAPT Blogswarm

Check out my contribution to ADAPT's blogswarm about budget cuts and PWDs living in their own homes over at Road Hog. Then follow the blogswarm link at the end of the piece to read other 'swarmers.

In Remembrance

Today is my friend Gina's birthday. She would've been 35. As some of you may remember, she died from pneumonia in May. Spinal muscular atrophy and respiratory problems do not mix.

I miss her almost every single day. When you've known someone since you were eight years old, she becomes a major factor in your life. You overlook annoyances that would cause splits with other friends. As we grew older, we had less and less in common, but we were still always there for each other.

I miss you, Gina Bina.

How any bad things can wonky breathing indicate?

Last Sunday I was watching some of my taped programs when I felt a tightness in my upper chest and a shortness of breath. Sometimes I can ignore my asthma and it goes away, so I kept watching "Criminal Minds" and "CSI: NY." After the shows were over, I was still feeling off, so I took my inhaler. Nothing. When my attendant Sarah got here, I starting thinking about going to an ER to get my blood pH checked (remembering my metabolic acidosis of a year and a half ago). Sarah checked to see if Charity Hospital had reopened after the storm, but it hadn't. University Hospital has somewhat taken its place in that the poor, uninsured, and under-insured go there. My Medicaid only covers me in Kansas, and I don't want to lose my suite of amazing doctors by transferring it to Louisiana -- therefore I fall into the uninsured category while I live here. So University it was.

My friend Erika drove me, and we got there at about 1830. Normally the staff only allows family back in the rooms with a patient, but I pleaded. I had the sense things were going to be strange there, and I wanted moral support as well as someone I knew would add her voice to mine if need be.

So here is 14 hours, yes, 14 hours of ER time in a short summary to determine if I had a pulmonary embolism (blood clot in my lung):

-- seven IV attempts (with bruises to show for every one)
-- six different med students/interns/residents/full-blown doctors
-- chest x-ray
-- attempted contrast CT scan (my IV blew when they were administering the dye, puffing my arm to nearly twice its size)
-- full blood work up
-- urine analysis
-- blood gas
-- ultrasound of both legs

The ultimate diagnosis -- I had a blood clot behind my left knee. This is more than likely due to my sedentary nature (i.e., being in a wheelchair), but the part that irks me is that I have been taking an aspirin a day for years now to prevent this. ::sigh::

So I was admitted and started on anti-coagulants, but not before I lost my cool with a nurse at about 0600. This particular nurse, we'll call her Nurse Ratchett, was helping me get on the bedpan for the second time, and she put me on crooked (again). I told her as much and nicely asked her and the other nurse who was also helping to please adjust me. Nurse Ratchett quite unceramoniously jerked apart my legs (like she did the first bedpan round), looked at my crotch somewhat over the bedpan opening, and declared that I was fine (as she had previously). OK, I had had no sleep, had experienced this with her before, and was stressed (I still hadn't been diagnosed). I looked up at the ceiling, and said, "You know, I'm really getting tired of people telling me what's fine with my body."

Ratchett: No one's doing that.
Me: You just did. I said I was crooked, and you said I was fine.
Ratchett: Well, you're on the bedpan.
Me: Yes, I'm on it, but I'm crooked. I won't be able to pee if you don't adjust me.
Ratchett (with an exaggerated sigh): If you go off the side, we can change the sheets.
Me: I'm not going to pee off the side. I'm not going to pee at all.
Ratchett: You're fine.
Me: Lady, I've been living in this body for 36 years, and I know how I need to be situated on a bedpan to pee.
Ratchett (with a bigger put-upon sigh and an eye roll): Ma'am, I don't know why you're so upset. We're just trying to help you.
Me: No, you're not. You're trying to get by with what's easiest for you and not listening to me when I tell you what I need.
Ratchett (with yet another sigh): Well, what do you want?

Contast that with a couple of days later when I got to be the one who helped a nursing instructor teach five students how to change sheets with the patient still occupying the bed. I was instructing two students on how to support my bad knee and on the easiest way to roll me when the instructor called everyone's attention to what I was doing. "Always always ALWAYS listen to the patient, especially one with a disability," she said. "They know their bodies better than anyone. If you listen to them and do exactly as they tell you, you won't hurt them."

The only other incident of note was on my last night in (I was there four days). My friends who were babysitting Reba brought her to see me to help me with my stress, and security refused her access. I had anticipated this, so I had instructed my friends on what to say (she's an assistance dog, ADA allows her access, yadda yadda). The fellows working the door, who I have lovingly dubbed Einstein and Galileo for their amazing intelligence and forward-thinking, rather than just admitting they'd never experienced this before and calling for help, started making up reasons why they wouldn't let her in. My friend Kim's favorites were:

-- if she'd had the dog with her when she was admitted, we'd let the dog in
-- if the dog were yours [Kim's or William's], we'd let it in
-- if she were getting discharged, we'd let you take it up

William called to tell me what was going on, and I told him to put Einstein and Galileo on the phone. Naturally, they did not want to talk to me, but the threat of irate gimp finally kicked their shared brain into motion, and they called the nursing administrator on duty to enlist her help. She came to my room (with Galileo practically clutching her skirt) to tell me she was attempting to locate the hospital's policy on assistance animals as a CYA measure. In the meantime, I called Naomi for my own CYA measure, making sure I knew what to do to handle this properly and efficiently -- I was tired, hungry, sore, and stressed, and I needed someone calm to remind me of what I already knew. When Ms. N came back, she told me she had been unable to locate the written policy and could not let me bring my dog in without the policy in hand or a hospital administrator's permission. She apologized profusely and asked me many detailed and excellent questions about my disability and what my dog does for me. Like many people in this part of the country, she was only vaguely familiar with assistance dogs, but she knew enough to realize Reba will not be the last assistance animal the hospital sees. She told me she was going right back to her office to email her supervisor, the patient advocate, and the hospital administrator. I gave her my cell number and asked her to include it in the email along with my offer to help the administrators determine if their policy was in accordance with ADA law or to help them write a policy if the hospital did not have one.

The next morning, the patient advocate, Ms. C., called and also asked many excellent questions about assistance animals in general and Reba in particular. While she was searching for the policy, she offered to try to find some way of accomodating me seeing Reba if I did not get out that day as anticipated. That afternoon, she called me again to say she had found the ADA law. She had also found the hospital policy and it exactly matched the federal law to allow an assistance animal access to a patient's room. She thanked me for being patient and for helping educate her and others about assistance animals. She told me they would implement an education program for their staff so this wouldn't happen again, and afterwards she would send me a letter to tell me what they had done. I thanked her for her swift attention and help. I'm going to call her this week and offer to help with their staff education.

This weekend has been spent recuperatng from a lousy bed and lack of sleep. I have to take an anti-coagulant for six months with clotting time monitored every week for the first month and once a month for every month after that. The up-side is that my dad will not be allowed to "teeny pinch" me when I go home for Christmas.

People piss me off

It well and truly pisses me off when people don't do what they say they will. You want to quit because after three days you decided wiping someone else's butt isn't for you? Fine. You say you're going to help me until I find someone to replace you?

Then do it.

Show up when you say you're going to. Don't decide a couple of shifts after that to just not show up and not call -- ESPECIALLY after I thanked you for being honest and quitting rather than just not showing up and not calling.

I can't even blame it on her age (19) because I have two other attendants (barely 20) who have both been honest and don't pull this airhead BS. They might not have always been available when I needed them in the year they've worked for me, but they have NEVER failed to show for a shift without a call.

And this at the end of a day where I accomplished nothing because I was fighting depression.

Stupid children.

Quick post

No internet at home and a hundred things to do in the office, so a few quick notes.

Moved to the new apartment on Tuesday. Like it so much better.

Also had an accident on Tuesday. New attendant (only her 4th day) was turning the lift on the strange, thicker carpet, when the lift tipped over. Amazingly, with the apartment in total disarray and thus so many things I could have fallen on, I only fell on the floor. Nothing twisted, jammed, broken, or otherwise damaged -- my guardians were on duty and sharp that day, bless 'em! My neck was sore the next day, but yesterday and today I'm back to my semblance of normal. I'm still claiming "head injury" whenever I have a brain-fart because it's fun! ::grin:: Yes, the attendant wanted to quit, but I think I've coaxed her out of it. The damn lift is just unsteady when the legs are together, the carpet is thick, and she is too small a person (literally about 90-95 pounds and lucky if she's five feet tall) to have stopped the momentum. S--- happens, but no one got hurt. Moving on.

Can't find Reba's cape. I remember exactly where we put it during the move, but it's not there now. It's not anywhere (yes, I'm completely unpacked except for books). The company takes 4-6 weeks to get you a vest (cape) because each one is handmade to your desire. I could get one in about two weeks if I get a patch instead of embroidery, but the patch won't look as nice on the purple cape. ::sigh:: I don't know what I'm going to do.

Dropping stats. Too much calculus, too much theory, too many proofs, not enough programming instruction to analyze data. I guess I'll just have to teach myself.

OK, I need to walk up to Walgreens for Mucinex. See ya!

Groovy gimp videos

This first is thanks to my friend Kim. This one was posted by the same person.

Now if my apartment complex would learn a lesson from these. Maybe if I say the automated door is for enrichment?

Rant

My rant is something I forgot to mention in my recent hospital chronicles, and I don't know what brings it to mind two weeks later other than a general post-menstrual crabbiness exacerbated by a bad night's sleep. It involves the woman who was inserting my IV when I was admitted for the UTI. Mom was mentioning how my kidney stone had postponed my return to school in New Orleans, and the woman (I put her in her 50s, maybe early 60s) looked at Mom and said, "Oh, is there a special school there?"

I looked her dead in the eye and replied, with a bit of pissed in my voice, "Yes. It's one of the few places in the country with a Ph.D. program specifically for conservation biology." I only just managed not to tack on the end, "you bigoted, short-sighted, ableist bitch."

If she were 80 or 90, I could understand -- wouldn't make it right, but I'd know the social upbringing that had put it in her head. But this woman is not from a generation who should still be spouting that kind of BS. And she didn't even apologize -- just gave me a look that said she didn't quite believe me and left. I knew she was a callous bitch by the way she inserted my IV -- picked a vein and dug until she got it, no matter how much it hurt me -- but damn.

Kidney stones, lifts, and bonus book

Got my kidney stone removed yesterday. Not merely lasered to bits and I get to pee it out, but TOTALLY GONE. As Anita would say: "And there was much rejoicing." The whole thing was pretty effortless, actually. The nurse got my IV on the first try (nearly unheard of nowadays), they got blood on the second try for the obligatory pregnancy test (though it seems pointless to do it after I tell them I've been on my period all week), and I didn't wake up feeling like I was going to wet the bed (they had inserted a Foley, thank the Higher, while I was still asleep). I was, however, shivering uncontrollably when I woke up. They put this thing called a Bair Hugger on me -- it's two layers of paper (like a paper gown), and warm air blows in between the layers. Loved it. They also gave me Demerol for the shivering -- Mom thinks because it's a muscle relaxer, I think because it gives you that warm, fuzzy feeling. ::grin:: I can understand why people get addicted to that stuff. The nurse told me, "You might feel sleepy, so go ahead and sleep." In my head I said, "Just try and keep me awake," but all that came out was a dreamy "OK."

When we were leaving, I noticed a spot under P's van that I hadn't noticed when I got out. The lift had leaked hydraulic fluid. It barely had enough to get me in so we could get home. I have an email to my friend Jenni because her dad works on wheelchair lifts. I can't get back to NO until it's fixed because I can't get to the airport. I'm waiting just a bit anyway because I'm still on antibiotics for last week's "really nasty" UTI, and I want to make sure it's GONE before I go back.

And now -- the August bonus book of the month: Heart-Shaped Box by Joe Hill. I had an interest in reading this even before I learned that "Joe Hill" is in fact one of Stephen King's offspring. The premise of it put me in mind of a book my friend Brian has been working on for a while (not that they're the same premise exactly, but it kind of reminded me of B's style). The story was actually pretty decent -- a semi-retired rock star buys a dead man's suit and the ghost attached to it. You soon discover that the whole thing was set up by the man before he died and his oldest step-daughter as revenge for the younger step-daughter's suicide. Seems younger woman was an old girlfriend of the rock star who was prone to depression, and rock star sent her home when he couldn't figure out how to help her anymore. The plot twists later, and you learn things weren't what they seemed with the family. For a first novel, I give it a B+. The part that startled me came at the end. The rock star and current girlfriend wind up returning to where he grew up -- Moore's Corner, LA, supposedly near Slidell. I don't know if Moore's Corner exists, but the news reporter the rocker's aunt mentions does. Dennis Woltering is a reporter at WWL, the CBS affiliate in New Orleans. A tiny detail, but it lends authenticity to the story, you know?

I'm linked by someone "famous"

This last week has been, well, a drag. I'll post about it soon, but until then, I invite you to check out the comments Kay at The Gimp Parade was asked to give CNN about institutionalization of people with developmental disabilities in the 1950s and 1960s. Original CNN story here, Kay's response (and readers' responses to her) here.

Crappiest opening obituary line ever

From my friend Gina's obituary on Sunday:


Bauer, Gina Suzanne, 34, went to meet the Lord to run and play on May 18, 2007.


Was she a woman with a disability who lived exactly the way she wanted, or was she a fucking puppy?

Why do people assume that just because a person is in a wheelchair or otherwise has some other type of disability that s/he is some poor, pitiful, depressed little creature whose only wish in life is to die so s/he can run and play like all the lucky, able-bodied people s/he has envied her/his entire life?

Note to ABs who just don't get it: We are not unhappy. We are not miserable. We don't give a flying rat's ass that seeing us makes some of you uncomfortable. Get over it. We're a fact of life -- like blue skies and wheat bread and that pimple on your forehead from eating too much greasy food. In fact, why don't you do us all a favor and worry about that pimple. We'll get along fine without your pity and without you talking to us like we're two years old. We don't want to hear about how brave and inspirational you think we are. We're living our lives the best way we know how -- just like you, you ignorant schmucks. We bathe, we get dressed, we go about our days. We want a home and a decent job and maybe to get laid once in a while. Oh, what? Did I offend your delicate sensibilities by saying we actually think about sex? Too damned bad. We do. Having a disability does not equal losing everything that it is to be human. We laugh, we cry, we fuck. Accept that sooner rather than later, and maybe we can get past all this stupidity sooner rather than later.

Note to anyone who knows me personally: If you hear anyone spouting that BS about me when I die, smack them.