The Wienie Wagon gets TOSSED!!!

This afternoon, my mom drove me into town for my physical therapy appointment at the hospital. I've been going there twice a week since I got home to stretch the muscles in my lower back and relieve some of the pain I'm experiencing from squished spinal nerves (the result of almost 37 years of sitting in a wheelchair).

First, let me give you a picture of my ride while I'm home. Some of you know the Wienie Wagon well (only TOO well, you might say), but for those of you who don't: it's a 1974 extended Dodge Maxivan with a turtle top that's painted like an ambulance (all white with a broad orange stripe down the side) because that's what it was for 20+ years before my brother bought it for $800. My dad stripped it of the extra lights and the siren and replaced the backwards-reading "AMBULANCE" sign on the turtle top's front with a new sign which reads, "WIENIE WAGON" (wienie being one of my brother's familial nicknames). It still contains cabinets down one side for storage (complete with non-operating switches for non-existent oxygen), ceiling hooks for hanging I.V. bags, and a jumpseat in the back which still has its seatbelt.

So, the town we drove to is one of those smallish towns which are "big" for Kansas, and very rarely do people bother rolling up the windows or locking the doors on certain vehicles while they go into the grocery store, vet, or P.T. appointment (at the hospital). I mean, who thinks they're getting very far with a 3/4 ton van with a hydraulic wheelchair lift in the side and a "WIENIE WAGON" sign on the turtle top -- especially when the driver has turned off the batteries?

So, we came out after P.T., and Mom opened the side doors to let down the lift. We noticed that the battery charger which is normally stored in a box at the back was sitting just behind the front seats where I park my wheelchair. I got in the van, and as Mom stowed my transfer lift in the back, I noticed all kinds of things in new places -- a power steering fluid bottle that had been under the seat was also where I park, the horse dewormers were lying in different positions, and a tissue box which had been under the seat was on the console. I pointed out all this to Mom when she climbed into the driver's seat along with a bunch of trash out of its container lying between the seats. She started putting things back to rights, and that's when she noticed something missing.

A small brown prescription bottle.

The sneaky punks made off with . . .








THE DOG DEWORMER!!!

::falls out of wheelchair laughing::

You know SOMEWHERE in McPherson somebody is wondering why s/he's not high right now -- because you KNOW they were thinking, "Ambulance. Windows down. Let's get their good stuff!"

No go

The esophageal/gastric/duodenal endoscope I was supposed to have yesterday didn't happen because my blood was still too thin. Grrrrr! The surgeon's nurse called me today to say they're either going to get me into another surgeon or she has "another idea" to get me in next week.

Would someone please tell me why I allot two months for things when all my doctors wait to do everything in my last 2-3 weeks here? ::sigh::

Something to think about

As seen on lupabitch's LJ (thank you for letting me snag):

Indeed, there would be no hatred of others without hatred of self. If we truly felt good about ourselves, we would have no interest in wasting precious life energy resenting or attacking anyone. The urge to blame others arises only out of feeling bad about ourselves, which originally developed out of not feeling truly seen or honored by other people. Self-hatred is the hidden underbelly of all violence and nastiness in the world.

--John Welwood, Perfect Love, Imperfect Relationships: Healing the Wound of the Heart, p. 97

Nothing new

Just checking in. Got back to physical therapy this week after a two week hiatus. I'm really going to have figure out which of my friends I can train as an amateur PT when I get back to NO. The muscle massage and the stretches make my back feel SOOOOOOO much better.

Two faces of SMA

First, my sister Stacy. This is one of my favorite pictures of her, taken when she was about 20. She was 27 when she died.




This is a closeup of her headstone. Don't mind my mom's shadow there.




This shows the entire headstone mounting. The turtle statue is painted to appear like Poe (as in Edgar Allen, her favorite author), her pet at the time of her death. Her best friend's son inherited him.




My brother Paul. He took this picture of himself with his webcam a couple of years ago.




A closeup of his headstone. He was a computer geek and gamer, and he was an English lit major.




The full mounting. Since the concrete company had nothing resembling books (not even books as bookends), my parents opted for this Celtic cross as an homage to his interest in Medieval history and literature.

Health update and goals

Sorry it's taken so long, but there wasn't anything to report on the hemoglobin situation until this week. My GP simply did another blood test (Hb still low), told me to take double the Prevacid until I was checked for an ulcer, gave me hemocult cards to check my stools for blood (big negative there, thank your Higher power), and referred me to the surgeon. I saw the surgeon this week, and he was at first as confused as I was about why I was there. He called my GP so they could consult, and they came to the conclusion to check my esophagus, stomach, and upper duodenum (first part of the small intestine) for an ulcer using a scope and to see if my uterus is building up too much lining during my cycle using a sonogram. I do the sono on Tuesday and the scope on the 30th. The surgeon said if he had to go to Vegas and bet money at the Anemia Game, he'd put his money on my heavy periods combined with the coumadin I'm on for my November blood clot.

Interestingly, my friend Lance (who also has SMA and is a year older than me) emailed me a day or so later with another possibility that, though slimmer than the period/coumadin cause, is something I should still be aware of and get someone (whether my GP or my pulmonologist) to monitor -- hypercapnia, or high blood carbon dioxide. I don't think high CO2 will cause low Hb, but it can cause the symptoms of low oxygen in the tissues if its concentration is high enough that it occupies more Hb sites than does O2. He pointed out that while sleeping with O2 at night will increase my blood-ox levels, if I am shallow breathing while asleep (and I do to some degree), I may not be eliminating enough CO2 upon exhaling. His youngest sister (who also had SMA) did this, and she may have died because of it (if I read his email correctly -- please correct me if I'm wrong, Lance).

So, I'm practicing breathing more deeply, because I have stuff to do before I kick the bucket.

In other news, I'm suffering from strained muscles in a couple of toes on my right foot after they got caught in my jeans while dressing the other day and were hyperextended (well, for me). It's a darn good thing I don't walk, because those little piggies go "wah wah WAH" when they're bent backwards.

So, drastic change of topic -- seemingly, but hopefully my change of approach will become logical in a moment. We found out a few days ago that the monument company had "snuck out" (meaning, they didn't call my dad first as he had requested) and set my brother's headstone on July 3. My dad was a bit peeved because the main reason he wanted to be notified was so he could meet them at the cemetary and get them to lay the foundation for the stone longer than necessary and set the headstone to one side rather than centered. Fortunately, the setters had gotten the memo. We went out the day after learning the stone was set to mount a Celtic cross on the foundation next to the stone.

Going to my sister's and my brother's graves made me pretty morose for a while that evening. It's been seven and a half months since Paul's death, and I'm still dealing with anger and depression. Then a day or so later, my friend Edie emailed to ask if I'd ever seen pictures that were taken when my folks accepted P's posthumous master's degree. They also received my sister's bachelor's degree in the mail a few months after her death. This got me thinking about my current Ph.D. endeavors and stupid little health problems. I mean, they always start out stupid and little, right? I wondered if these health problems of the last two years after more than twenty years of nothing serious was just an accelerated opening act to my own dropped curtain.

But there's something here I'm really truly down in my soul starting to realize -- I want to be alive when I receive my Ph.D. I want to have to scrimp and save for the gown and hood so I can go across the graduation stage, flipping the bird to SMA. I want to do the General Exam and the dissertation defense, as scary as those are, and I want my parents there and at the graduation. I want to see my work published and referenced. I want to get a job and drive students nuts with the things I want them to learn. I want them to think I'm either extremely enthusiastic or just a bit bonkers as I extoll, "Mendel rocks!" I want more and more people to not think it's a big deal to have a teacher sitting crookedly in a power wheelchair who paces while she lectures.

So you see, I'm far from done yet. I have all those things to do, but not just for myself anymore. Now I'm doing it for my sister and my brother, too.

Oh, what a stressful, crazy, amazing, rewarding thing it will be!

Dreaming and Memorials

I had the strangest dream of buying jewelry this morning. I was looking at seahorse earrings carved entirely of amber and getting irritated that they were so expensive. There were some bronze ones that were cheaper, but I didn't want them because I knew they'd tangle in my hair. There were turtle/tortoise rings also made of bronze that I was considering. Late in the dream, I went to slip a silver band of leaves on my left ring finger, and I saw an elephant head carved from bone already there. The ends of its ears were broken off, and that made me sad.

I'm probably getting a stylized turtle tattoo this afternoon as a memorial for my sister. I found this one online and knew it was perfect:



On mine, the shell knot will be yellow while the leg bands, eyes, and tail will be orange -- Stacy's favorite colors. The toenails of each foot will be different colors (one color for each foot) -- red, yellow, black, and white -- for the Lakota medicine wheel. In the months before her death, Stacy was becoming more and more interested in our Scottish/Celtic and Lakota heritages, and turtle was her primary totem. I almost have this feeling my sister is trying to bind turtle to me.

I'm also going to get a line or two of one of Paul's poems for his memorial. I don't think I'll get it today, but definitely before I go back to NO. This is the poem I've chosen -- it's one I've carried with me for a long time:

Words Never Spoken

Love never sought can never be found,
Through the storm raging beyond and within.
Quiet yourself and wonder how
My words remain with you long after
The sound has fled away. When all is still
Except your thundering soul; Look beyond
The fears your mind contrives to send
Your heart to distract: Listen to my words
Never spoken, but silently heard to
Engage your heart in this glorious meaning
To this life, often meaningless.