New news

I saw an infectious disease (ID) specialist today, and I'm looking at at least eight weeks of twice a day vancomycin by IV plus some other oral antibiotic. I go in next Wednesday to have a Hickman device inserted for the vanco IV. This medication is very harsh and can burn up the smaller peripheral veins (the ones in your arms). The Hickman is a device inserted into the jugular toward the vena cava (much bigger and tougher veins). The other good thing with this device is blood can be drawn from it to gauge my health without extra needle sticks.

Besides having IV vanco twice a day, I also see the ID every single week. If my orthopedic surgeon decides that the rod has to come out, then my eight weeks of vanco starts all over. I won't be able to call him until Monday because he's not in the office of Friday.

When we left, I went and got a chocolate Freddy's Frozen Custard. Screw my diet.

Here's a good schematic of how the device works.

This just keeps getting better and better

Happy day! My leg hole has MRSA!

Listen here you nasty, sneaky little bacterium of doom -- you will NOT prevent my graduation. You might delay it (what else is new?), but you will not prevent it.

*rather loud string of colorful metaphors*

Enough is enough

I would love to have a few days to work on this dissertation. On Feb. 2 and 3 I had a horrible muscle spasm that nearly made me throw up. On the 3rd, my doctor was out of the office, so I saw his partner who gave me 10mg of Valium to take three times a day -- with my 5mg Percocet. So, needless to say, I have done nothing but fall asleep in my chair for days. And I still have pains. Not as bad, but still enough that I can't concentrate on shit.

Oh, and it turns out the Valium and antidepressants (I've been on Zoloft since the Wreck) don't generally mix well. I literally bawled my eyes out Friday night because I was missing brisket and potentially chocolate creme pie at a church Valentine's banquet. Yes, I hate Valentine's Day, but I love brisket and chocolate pie! Mom and Dad, bless 'em, bought me Woodie's BBQ (nummy ribs and pulled pork) and a chocolate pie on Saturday. And on Monday, my doc told me to double my Zoloft.

AND I have a minor surgery on my leg tomorrow because one of my Wreck scars has been seeping goo for months.

FML.

I just want to freaking graduate! It's been EIGHT EFFING YEARS!!!

I miss you, Stacy

Eleven years ago, the first of two events occurred that I never thought I'd have to handle -- my younger sister died of respiratory distress related to spinal muscular atrophy.

I miss you, Stacy.

Is it really about to happen?

I just completed my "Application for Degree", a first step to graduating in May.

Now I just need to:

-- complete my application for a Smithsonian Postdoctoral Fellowship by January 15th to work at the Smithsonian Environmental Research Center -- assuming Dr. Denise Breitburg sponsors my application and accepts me as a contributing member of her lab

-- analyze a buttload of data and complete a rough draft of my dissertation by February 6th so my advisor can look it over for me to work more on it

-- defend said dissertation on April 6th and pass my dissertation exam

I can do it. I'm a rock star. *bites nails*

EDIT: Dr. B is interested! Now, just ten days to pull together a research proposal.

Words to the wise

I received an email yesterday from Nova Publishing asking me if I would like to contribute a chapter to a book they're putting together called Environmental Degradation: Causes, Issues and Management.

*squees*

A book chapter offer? And I haven't defended yet?

*squees more*

I sent an email to my advisor to ask his thoughts. I just hope it doesn't take him a month to write me back because the abstract deadline is January 10.

*squee to the 10th power*

A peek from under the pile

I've been absent lately -- not just from posting but also from reading on my flist. I want to graduate in the spring, so I need to defend my dissertation no later than April 9, which in turn means I must turn in a draft to my advisor no later than February 9.

Actually, as of last night, those deadlines will get moved up as I purchased tickets for the Celtic Woman concert being given on April 12.

My motivation has been nil. Once I start writing, I move right along. Fortunately, I also have a grant application that wasn't funded that helps me write my introductions, but the materials and methods still need work. I have analyzed data for my 2008 experiments, so I should be done with that damn chapter, but I'm not. I'm so annoyed with myself.

Dad has an appointment in Wichita this afternoon, and Mom is driving him. Ordinarily I would ride along, but I am opting to stay home and take full advantage of approximately three hours of alone time to write.

C'mon D -- let's get this thing banged out.

We're in the money

The ceremony for the Peter John Loux award was Thursday, 1 December. Both of my parents and one of my best friends attended. I figured they'd read a bio of us -- which is embarrassing enough -- but they made each of us stand at the front of the room while they did. Awkward! As I've mentioned before, I don't see myself as doing anything particularly noteworthy or "inspiring", so watching people make a big deal out of me getting a BS and MS and working on my Ph.D. makes me uncomfortable. As for the disability activism, someone has to do it, but no one WAS doing it.

After, the folks, my friend, and I went to Bella Luna for lunch. I said screw my diet and had hummus and the six-cheese pasta. I requested grilled shrimp on top of the pasta, but it was delivered with grilled chicken. I mentioned this to the waiter, and he said, "Go ahead and eat that, and I'll get you some shrimp too." Bonus!

It was a great day, despite the cold.

And the winner is . . .

I just received a letter from the Cerebral Palsy Research Foundation that I am one of this year's recipients of the Peter John Loux Award. The award is given "in recognition and honor of an outstanding Kansan who has demonstrated exceptional desire and dedication in overcoming the difficulties caused by physical or neurological disabilities." My friend MF nominated me, and my friends SB and AF and my aunt CS sent letters of support.

I receive $1000 which will go into my "special needs" trust with my Wreck settlement.

Guess I'd better finish setting up the trust.

A Day of Remembrance

Our modern holiday of Halloween has its roots in the pagan tradition of Samhain (pronounced SOW-en). Samhain is the last of three harvest festivals, celebrating the end of harvest while preparing for the long, dark nights of winter to come. It is believed that at this time of year, the veil between our world and the world beyond is at its thinnest. Rituals to honor and/or speak to those who have gone before us are common. I, like everyone else, have lost family. Due to my disease, I've gotten to encounter Death a bit more often as He has taken most of the friends I met at MDA Camp. To mention all of them would take hours, and frankly I don't have the fortitude to undertake a task of that nature. However, I must mention two, for these deaths are with me daily, always at the edge of my waking thoughts, sometimes even entering into my dreams.





My sister's death caught me completely unaware. She had been in the hospital over Christmas with pneumonia. I spoke with her the day she was released, and I was utterly amazed that she had been sent home. The congestion I could hear in her lungs made ME want to cough, and she clearly didn't have enough strength to cough all that crap out. A month later, her best friend called my brother to say Stacy was gone. Her death was so sudden that Dad requested an autopsy.





The report stated that nothing unusual could be found, merely the expected physical changes consistent with her disability and a slightly enlarged heart. Folks in the family started freaking out -- enlarged hearts run in the family, what about Dawn's and Paul's hearts? We were checked; we were fine.

Years later, I found a report in Stacy's university paper that stated she had called campus police in the wee hours of the morning (around 2:00am) complaining of an asthma attack. She was taken by ambulance to the hospital, she was treated and released, and she was taken home by the ambulance crew around 6:00am. According to Stacy's attendant, when she arrived a couple of hours later to get her up, Stacy stated that she was exhausted. Could she please sleep a little longer? The attendant said no problem. When she returned a couple of hours later, Stacy was breathing but unresponsive. She died at the hospital a short time later.

My sister and I were the best of friends as kids, but as adults it became clear that we were two very different people. Actually, I'm not even sure how true that last statement is. I think we were still a lot alike, but we just took different paths when we moved out on our own. I was studious, trying to make the most out of the scholarships I'd earned and trying to keep my college debt to a minimum. The extent of my "partying" was a group of dorm friends sitting around getting hilariously plastered. I was the obligatory babysitter since I didn't drink. I rarely skipped classes. Stacy, on the other hand, was not too concerned about school. She didn't party, but she was a huge flirt. When the Internet got big, she'd spend all day and half the night in chat rooms. Once, she announced to the family she was engaged to a half Native American man from New Mexico -- she neglected to mention she had never actually MET the dude in person. In her first year of WSU she had more "canceled" classes than I'd had in five years of undergrad and one year of grad school. We fought like crazy. I called her irresponsible. She called me a prude. When she moved to Illinois, we weren't on speaking terms. I'm fairly certain the only reason she came over and said goodbye was because Paul and I were living together; she definitely had more to say to him than me.

Looking back, I know she was going through the same "FREEDOM!" phase that many young adults do. I was thinking then that if she wanted a break from school to stretch her social wings, then she should just stop racking up debt for classes she never attended. I was stuck in the mentality that I was the big sister and I knew better. What a joke.

After Stacy died, our parents and our aunt and uncle went up to IL to clear out her campus apartment. Mom and Aunt Chrys told me later that though our relationship was only in the beginning stages of rebuilding, we were still more alike than we were different. Similar decorating styles, similar leisure reading choices -- we even had the same damn perfume in our bedrooms.

I now regret those last few years of wasted time, that both of us were so stupid and just had to be RIGHT. Sometimes it still hurts, but Stacy has let me know that for her, it's all water under the bridge. She's forgiven me, so it's time I forgive myself.





If my sister's death caught me off-guard and sent me into a tailspin, then my brother's death hit me like a Mack truck. It didn't help that I had been sick with a stomach bug for a week and had just admitted myself to the hospital for dehydration. Most people who know me well know that I'm a pretty cool head in a crisis. It took me ten hours to allow myself to cry when Stacy had gone. With Paul, I lost it. Bad. I even yelled at my father when he tried to calm me down. I was going to pieces, and at that moment I didn't care. The nurse came in with my pain meds, and I went to sleep. I didn't want to wake up. Ever.

Paul had spent 31 days in the hospital to get rid of pneumonia (sensing a theme?). During this time, the chronic pain he'd been suffering for twelve years had gotten so much worse. Dad told me he would be given Percocet, then two hours later Dilotid, then two hours later Percocet, then two hours later Dilotid, and so on, ad infinitum. I know big guys who couldn't handle that regime, but it barely touched the pain experienced by my 41-pound brother. A few days before he died, he told our mutual friend, "I'm so tired. I don't want to do this anymore."





Paul and I were the opposite of Stacy and me -- we drove each other crazy as kids, but as adults we were as close as a brother and sister could be. When he started university, everyone thought he was a biology major because he spent so much of his free time in the lab with me. My fellow grad students made him part of the fold. He knew more about my thesis project than my lab-mates. Together we took a Shakespeare class, an anthropology class, and a fiction writing workshop. I was the one he turned to when he needed help selecting poems to submit to contests. His two favorite nicknames for me were "tree-hugger" and "bunny-lover". He rolled his eyes at my tirades against styrofoam, but he'd use real plates -- at least when I was around. The only difference was political views. He was a staunch Republican, and I was . . . well . . . not.

It hurt me that I wasn't in Kansas when he passed -- one week after getting released from that 31 day stretch in the hospital. He endured more pain and illness than any one person should ever have to. Every night I prayed for his pain to be taken away. The first time I thought of that after he died, I screamed at the Higher, "That wasn't what I meant!" I spent months in a strangely functional form of depression -- I went through the motions of research and interaction with others, but I had absolutely NO emotional investment in anything.

I think the biggest hurt is that he never told me goodbye or gave me any indication that he was OK the way Stacy did. I dream about him, but only rarely. I know my sister keeps an eye on me, but I feel as though my brother just went on without looking back -- which is so much his practical nature. Gah, I sound like such a selfish bitch.

So, this turned out to be longer than I intended, so if you made it this far, let me know and I'll send you some cookies as a reward.

For my sister and brother: I couldn't have asked for better siblings. I have to be honest -- I hate that you left me alone. You gave me strength, and you forced me to see my insecurities. Everything I accomplish in my life is due in large part to you (and our parents). I love you and miss you every single day.

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*

*trumpets sound*

My FA review is finally in print, and my official PDF is saved! Please send me a SASE for your autographed copy. *grin*

Meh

Hopefully the pain specialist can figure out why I've been having all these new and interesting (she said sarcastically) pains and spasms over the last year, especially in the last couple of weeks. Hopefully it's not autonomic dysfunction resulting from the Wreck, as my GP thinks.

Edit:Turns out, Medicaid doesn't recognize the need for pain management. The place that called me said they would give me their "special self-pay rate" of $325 per visit, due in full at the time of my visit. Oh, and I get to drive 45 miles one-way in a van that maybe gets 15 miles to the gallon, with gas at $3.59 per gallon. Did I mention I'm only getting $672 per month in federal supplemental income -- assuming, of course, that the government doesn't default?

Guess who's not going to get pain management.

Ow! Ow! Oh crap that hurts!

Over the weekend, I had some HORRIBLE shooting pains in my left foot. On Saturday, the pains hit me every 15 seconds to 5 minutes, and this went on for SEVEN HOURS. I've had a few pains since then, but nothing like Saturday. I went to the doctor today to see if he could help me with it. He's worried that I'm experiencing autonomic dysfunction due to last summer's Wreck. He's sending me to a pain specialist to sort it out. He's also sending me to a lymph-edema clinic because my legs and feet are badly swollen. It would be nice to have more normally sized feet again.

A mark of the despised barbarian

Being a review of The Eye of the Beholder: Deformity and Disability in the Graeco-Roman World by Robert Garland

On one of my Amazon skims, I was browsing through a lot of disability literature. Most of it is current (i.e., within the last 20-30 years), with quite a bit even going back to the turn of the century. I was clicking "Add to Wishlist" pretty regularly.

(For those of you who don't know, I use my Amazon wishlist not as a way to get folks to buy things for me but rather as a reminder to myself of what I'd like to read one day. Then I look for one or two at a time at the library or order it through inter-library loan.)

So, I was noticing a pattern of disability literature being not more than a century-plus-change old, when this book appeared. Hmmmm, I know about Hephastus (Vulcan to the Romans), the lame-footed god who was the blacksmith of the gods and cuckholded by his wife Aphrodite, but that was pretty much it. Garland went through as much of the sketchy literature and art available to try to piece together how the deformed and disabled fared in Greek and Roman society. Obviously, there isn't much available, and of course, most of it is bad. Naturally there is the tale of Odysseus's dealings with Polyphemus, the one-eyed giant. Aristotle philosophizes on the deviation from the "ideal form". Pliny goes so far as to describe the "monstrosities" of humanity and animals as almost equals. Dwarves and deformed slaves were bought specifically for the entertainment of the elite, and whomever had the oddest, strangest being was envied by his peers.

Depressing as the actual history was, I still found it interesting and informative. The set of 60-something panels in the center of the book was fascinating. I mean, the way the non-disabled portrayed the disabled just fricking slays me! Because of their low, looooow social status, naturally the gimps weren't portrayed in high art with the expensive media, i.e., they weren't carved marble or painted. Sculptures were created of bronze or more commonly terracotta. Drawings/paintings appeared on the cheapest of vases or water urns. The mentally ill/disabled were not exempt, and their portrayal is probably the saddest of all -- grotesque and twisted faces shaped to supposedly reflect the internal madness.

One practice in a particular village was strangely resonant of today -- that of punishing or even executing "scapegoats" (generally the deformed or disabled) as a means of appeasing angry gods. Garland remarks, "The incident tells us much about the universal tendency to heap blame upon the weak and defenceless in periods of acute tension as a way of re-directing frustration and fear." This puts me in mind of the current state and federal budget issues of cutting money to the programs which help the weak and defenseless (poor, disabled both mental and physical, at-risk) in order to redirect constituents' frustrations and fears from looking more closely at the spending habits of those in power. Those in power call these programs "a drain on resources" which just reinforces the stigma.

Wow. I just realized how conspiracy theory that sounded. I've maybe been watching Hodgins too much on "Bones".

This June 7 is much better than the last one

A year ago today was the infamous Wreck. Aside from extra pain spots and a Foley catheter, I'm pretty much back to normal. Took me a while to get here, but here I am.

Onward and upward!

AAARRRGGG!!!

The newest issue of Reviews in Fish Biology and Fisheries is out in print, and my article (which went online last October) is STILL NOT IN. What -- the -- hell -- is -- taking -- so -- long?

Day of awesome

Thunder, rain, hot cocoa, a relatively painless hip, and (so far) totally painless legs. Can the day get much better?

Happy anniversary, Mom and Dad!

Forty years ago today, they said they would -- and they still do. I love you!

Sleep is elusive

I was awakened this morning by numerous puppy kisses -- first by Spanky (the four-month-old cocker spaniel who loves to roll around on my head), then by Mairead (the eight-week-old snuggle-icious rottweiler). Not a bad way to start the day, but I'm still so sleepy. I don't even have the energy to be annoyed that said puppies are currently shredding a Ding Dong wrapper that the Spankster got out of the small trashcan next to Dad's recliner.