I bought a new book

I know. You're shocked. Me -- buying a book. Amazing.

Yesterday, I went into an independent local bookstore to see if they had the new Laurell K. Hamilton book. While we looked for it (never did find it, much to the owner's confusion because she'd still had one copy when she left the night before), I saw a book that I had read a synopsis of a couple of weeks ago.

The Book Thief by Markus Zusak.

Briefly, it is about a girl living in Nazi Germany who discovers books. And the story is narrated by Death himself because he becomes interested in her after he comes to take the soul of her little brother. He keeps her tale tucked away in his pockets among the legions of humans' tales, but he takes hers out to share with us.

I'm only about thirty-five pages or so into this book, and I'm entranced by Zusak's writing style. He uses simple words and phrases, but the way he puts them together evokes amazing images. Sometimes he even makes up words, but it takes you reading on for another sentence or two before you think, "Hey! That's not a real word!" He's that good at weaving them in.

And Death is a pretty interesting character.

EUREKA Moment!

About an hour ago, I had one of those rare, deliciously sweet moments when it seems all the planets have aligned and your path, at least for a while, is crystal clear.

I've spent the last hour trying to organize the myriad thoughts that were spawned so that they will make sense to others.

It seems so obvious to me now. I just hope my committee goes for it.

Surgery Follow-up

Saw my urologist today. I still have "a third to a half" of my second stone left. Doc doesn't know for sure if he could get at it repeating this last procedure, so we're gonna go through the body wall. We'll get it scheduled as soon as I know when I go to NOLA for my qualifying exam -- I told him I wasn't doing any more surgery until AFTER the QE is done.

So basically they'll make a hole in my side and laser the rest of the stone through that. Doc said I'll be in the hospital about three days afterwards.

::sigh:: But at least one stone is completely gone!

What I'm doing (and NOT doing)

Engaging in dissertation-writing avoidance behavior. Last week was not so good, and my concentration is off. First there was a couple in my folks' church leaving -- a couple to whom I have gotten a lot closer since I've been back. Then after church I got the call about my friend Gina's dad dying. Then I wasn't able to go to the funeral. Then Friday I got another call saying my NOLA pal Rachel's boyfriend of 3+ years was killed in a motorcycle accident.

Stop the Earth. I want to get off.

So I spent a lot of yesterday afternoon and evening reading through "Protectors" (my six-year-old story project). Got up to chapter 26 or 27 (there's a total of 56 or so thus far). Did a couple little grammar touch-ups here and there. Had the occasional chapter that when I read it I thought, "I could not have written that. That must have been a bit where Anita's muse was inspired and I was allowed to use it, or my muse took over. I don't write that well." I'm hoping to reinspire my muse so I can work on it again. I can't remember the last time I wrote on the piece, and it's distressing me that I can't finish it.

I also finally sat down and tried a mosaic kit that I bought at Hobby Lobby a couple of weeks ago. I arranged and glued down the glass bits yesterday, let them dry overnight, and today I applied the grout and have just done the initial clean-up. Today's steps were messy but fun. The glass pieces still have some residue on them (yes, I'm frickin' anal-retentive and obsessed with tiny details -- that's why I'm good at science!), but I have to wait for someone to get me some clean water before I can clean it up the rest of the way. The mosaic is of a fish, and I think I'm going to give it to my occupational therapist Holly as a thank you for helping me with hand exercises and such. After my OT appointment Tuesday, I'm going to try to talk Mom into taking me back to Hobby Lobby so I can get some more stuff and make b-day prezzies for Anita, Jonikka, and Melissa.

Anita, Jonikka, and Melissa -- pretend you didn't read that! ::grin::

Speaking of, I need to call Jonikka and sing obnoxiously to her. Then when Anita finally gets back from CA, I'll sing a belated song to her.

Who Am I?

Sister
Daughter
Friend
Aunt
Cousin
Niece
Granddaughter
Sister-in-law
A service dog's person
Student
Scientist
Disability advocate -- but in a more subtle sense than the title typically implies
Spiritual seeker
Novice healer
Soap-maker
A woman with spinal muscular atrophy
An educator -- about a number of things

The Continuing Kidney Stone Saga

First there was the nurse who asked Mom no less than five times if she was SURE she wanted to lift me onto the bed. Criminey, lady, how many times does she have to say "Yes, I've been lifting her since she was a baby" before you get a clue and get out of the way and let her do it??

Then there was the usual hunt for a vein for the IV. At least three nurses and a lab assistant looked, none of them could find one or get the IV in when they tried. I kept trying to get them to get a Doppler machine to check for a deeper arm vein, and they went to ask the anesthesiologist if he could just mask me to put me out. No go, because they (understandably) have to give me fluids during the procedure. He starts talking central line.

Oh, I don't think so, buddy -- not without sedation, pal.

He said, "We'll give you lidocaine. That'll take care of any pain." Bull. I know better. He started telling me how good he was, how I won't feel anything. Uh uh. Been there, done this. I know better. The LAST guy who tried this on me was supposedly really good, too, but after 45 minutes and no central line, you'll forgive me if I don't take you at your word. We argued back and forth, I tried hard not to cry and wasn't terribly successful, and my dad piped in with, "Why can't you give her a shot of versed or something?" The guy said sure I could, but we have to wait 20-30 minutes for it to work, and I have to be back at the pain clinic in 15.

So, what, like, you're the only guy who can do this?

Well, no . . . .

Give me the shot.

The anesthesiologist ordered the shot (a versed/morphine combo), Dad headed off to the bathroom (I have a suspicion he was also at his end with the doctor), and I cried. Mom told me to calm down and not upset myself further, but I told her that I COULDN'T calm down until I got all that frustration out. So I cried. And I felt better.

The nurse finally brought me my shot (ouch!), and a new anesthesiologist, Dr. Tonga, came in. He asked if I minded if he just took another try at a regular IV. I stuck out my arms and said, "Please! Be my guest!" He tried twice in the back of my left hand -- no luck. Then, joy of all joy, he got it in the inside of my right forearm.

I think I love you, Dr. Tonga.

In short order, I was off to the OR. Next thing I know, I'm awake and couldn't decide if my kidney or my throat hurt worse. I got a couple of shots of morphine and something else, then I headed back to the other room. Things were going great -- I had some toast, a few sips of water and a few more of Sprite. Then it hit me -- I had to pee. Bad. Mom put me on the bedpan, and all I got was a trickle. When I had the first stint put in back in March, a nurse told me that sometimes, after you've had a procedure done through the urethra, your body will fool you and make you THINK you have to urinate when you really don't. Except that when Mom folded my leg up to adjust me on the pan, I shot off (good thing the pan was there). I took a break, tried again later, and I still only got a trickle. The nurse called my urologist and he said to straight cath me and see what happened.

Mom said it was like a fountain -- and they got more than 1000 cc.

Nurse called doc again, and he said to put in a Foley catheter. I have to have it until Monday at 10:00 a.m. ::sigh:: This thing is a might uncomfortable when you sit on it.

Then last night, after we got home, I threw up twice. I'm thinking it was all the drugs in my system because I'm feeling better today. Still not terribly hungry, but I WAS able to eat lunch and haven't felt like it was trying to come back up.

As for the surgery, Doc put in a bigger stint and got one stone completely broken up. He's not sure how much of the second one was broken up because it was "around a corner" plus it was hard to see through the debris of the first stone. We find out for sure on the 26th when I have my follow-up.

Fun times

I had gotten an email yesterday from Lynlee about coming up today for a visit, so last night my dad informed me that my "brother-in-law" was coming out today to continue the bathroom tiling project and he was bringing my "niece" with him. "So," Dad adds jovially, "guess who gets to wrangle the kid?"

So I called Lynlee and gave her two options: plan our get-together another time, or bring Pax with her and we let the girls play together. She thought Option #2 sounded good.

L and Pax arrived first, and as Pax was modelling her "new crocheted shirt that my mommy made for me" (which was beautiful, by the way -- maybe I can talk L into posting a pic of it), Jamie and David arrived. Pax, in her precocious, adorable, un-shy manner, walked right up to Jamie and said, "Hi, my name is Pax. What's your name?" How cute is that?

I suggested that Jamie show Pax her toy box, and they were off. There was only one snag in the whole afternoon. The girls were holed up in Pauley's room doing whatever it was they were doing, when we heard the door close and Pax exclaim from the hallway, "You're not the boss of me!" Lynlee called her in, and she told us Jamie was being "snotty." Personally, I was not surprised as my niece, Higher love her, can be a bossy little cuss. I asked Pax if she'd like to play in my room by herself for a little while, and she agreed. As soon as Pax went in my room, Jamie came out of P's room, telling me she wasn't being bossy and that she wanted her "real friends" Isaac and Natalie. This was all with a very convincing pout.

Have I mentioned my niece is a drama queen?

I suggested she and Pax take a little break and asked her if she wanted to rest on the couch. She mumbled no and curled up. I looked at L, and she nodded knowingly and said, "That's a yes."

I went back to go to the bathroom, and before I was done I could hear the girls squealing and playing together again. Don't know what L did, but it worked. ::hugs L::

Our afternoon ended with the girls sitting together in Dad's recliner, coloring and watching "The Prisoner of Azkaban," while L and I discussed how we got into the books and what we liked and disliked about the movies and debated whether Harry is going to die in Book 7 -- I'm a happy ending girl and say no, L is a poopyhead and says yes. ::sticks out tongue at L:: But we both agree that Severus isn't bad -- she says Dumbledore ordered him to kill him, I say he came out and knew the Death Eaters were going to make a painful death for him so Sev ended it quickly and painlessly.

After L and Pax left, Jamie and I continued to watch HP while Jamie "combed" my hair. In short order, she fell asleep on the couch. When it was time for her and her dad to leave, David and Dad were ornery and let Achmed and Rebel wake her up with puppy kisses.

After they left, my grandmother called to wish me luck tomorrow, then Dad and I finished watching Star Trek TNG and shared a pizza while watching South Park. Soon it'll be bed time so I can get up and go have my stones lasered tomorrow. Hopefully I'll be home tomorrow evening.

Hmm . . . I think I need some razzleberry pie. Don't want to be TOO hungry while waiting for surgery tomorrow. ::grin::

Well said

The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself.

Friedrich Nietzsche

Clinical SMA Study

A comment made by my old friend Jennifer (who is a new mom -- congrats, Jen!) reminded me of something I found last night. While puttering around on the MDA website, I found mention of a clinical study of SMA that is still in open recruitment. As you can see if you visit the link, there isn't much info, so I emailed the study coordinator and asked her if she could clarify the study's goals and requirements for participation. So far no response. I'll let y'all know if/when I hear anything!

Would be fun if I were able to participate -- my pal Natalie is attending Columbia!

Appointments

I had a neurology appointment yesterday. My GP thought it would be good for me to see a neurologist for my MD, and the one with whom he set me up is awesome. On a personal level, he loves NOLA and is as irritated as I am with the reelection of Nagin the Racist, Useless A--, er, Guy. He was very interested in my career path and asked a couple of very pointed questions about current politics and the environment, concluding by saying he thinks I'll have plenty to do with my degree. On a professional level, he made a thorough initial exam of me and asked me several questions about my initial diagnosis -- thank the Higher Mom was there! He tested my strength and my mobility, and he set me an appointment today with occupational therapy for an assessment. He said that I should explore any and all possibilities of assistive devices and that there is a therapist in the Hutch Hospital OT department who has done some great work with another of his patients who has either MS or ALS.

Dr. M apparently has worked with a lot of ALS patients, and we talked a bit about the creatine supplementation for my SMA that I read about a while back thanks to my brother. He said it's been used quite a bit with ALS, and since ALS is pretty closely related to SMA (they're both forms of muscular dystrophy) he doesn't see any reason for me not to try it. The key is to have healthy kidneys, so I'll talk with him more about it once I see how this laser thing goes on Thursday.

He also told me to stay up on the SMA research, so I came home and started doing some searching through MDA's website and the primary research literature and came across two recent drug therapies. I haven't read in detail yet to see if these are therapies that are being used in a clinical setting only or if they have expanded to use for John Q. MD-Patient.

I kinda like being a science nerd and being able to read the primary research rather than just relying on the lay-public releases. ::grin::

I was in Hutch by a quarter of eight this morning for my OT appointment. Was pretty cool. She did an eval of my arm, wrist, and finger mobility/dexterity as well as my grip and pinch strength, then I got to do some goofy little tests that test the same. First involved her timing me while I picked up a variety of small objects (safety pin, key, finish brad, paper clip, nut -- stuff like that) and put them in a box. Then came the "nine peg test" -- put nine pegs in slots one by one and then take them out again. Then a test with different strengths of clothes pins -- removing them from one rod and putting them on another. I breezed through the pins of 2 lb strength, but I couldn't even get ONE 4 lb strength pin off the rod. Not that I didn't try, by God! ::grin:: I fought with that bad boy for about two minutes before I really wore out my hand and finally acknowledged I couldn't get it.

Last test was removing a plastic cone from a holder and placing it on another. Next cone stacked on the previous. I probably should have stopped at five because I couldn't easily get more cones on in the "conventional" manner, but I ain't learned how to compensate and give up THAT easily! I made seven and just couldn't get an eighth on because the stack was too high. As I was maneuvering #6 onto the stack with a grunt, I said to Holly (the therapist), "Did I mention I'm stubborn?" Mom just shook her head as I was growling and stacking the 7th and said, "She's been this way her WHOLE life. You see her having a hard time with something and ask her if she needs help and she says, 'NO!'" Holly laughed and said, "Well, she probably wouldn't be as far as she is today and able to do the things she can do if she WEREN'T a little stubborn."

Shut up, Anita! ::grins, hugs Anita::

After all the goofy tests which tell an OT a lot, she gave me some finger and hand exercises to do at home and said she wants me to come in and do exercises twice a week. All this will hopefully maintain the dexterity I have so that I can continue to do my research and type for many years to come.

Now, if I could convince Pauley to go to an OT . . . .

Lynlee's Meme

First, name six of your favorite Life's Simple Pleasures.

1) Belgian dark chocolate -- or, assuming the lack of Belgian, Hershey's assorted dark chocolate miniatures
2) Spending time with KM, Psi, Lady, Nay, Edie, Hywela, Lynlee, my brother, Kevin, E
3) Reading a book outside on a warm, sunny day
4) When we first get in bed at night and Reba lays her head across my ankles
5) Having a van that runs reliably
6) Kibbitzing a cheesy movie -- with my dad and brother, or with friends


Second, write a list with six facts about yourself.

1) There are a lot of things about myself I am learning to love.
2) I am a firm believer in my dad's addage: "If you don't want to know the answer, don't ask the question." I am not responsible if you do not like my response.
3) I believe there is more to understanding the Universe and the Higher than is written in any one book -- and the key to learning ANY of it is the ability to listen to their voices in your own heart and soul.
4) I am in a wheelchair -- and it was a major force in shaping who I am today. And I'm teaching myself the GOOD shapes.
5) I believe the key to HAVING good friends is BEING a good friend. I like to think that the reason I have such wonderful, caring, supportive friends is because I return the sentiment.
6) I have been in love with Richard Dean Anderson (of "MacGyver" infamy) since I was fourteen. ::grin::


As Lynlee said in her journal: I'm supposed to tag six people now. But I won't. If you want to do this, do it.

Age Gauges

World Events

You said your birthday is 8 / 22 / 1971
which means you are 34 years old and about:
54 years 10 months younger than Walter Cronkite, age 89
50 years 2 months younger than Nancy Reagan, age 84
47 years 2 months younger than George Herbert Bush, age 81
39 years 11 months younger than Barbara Walters, age 74
37 years 9 months younger than Larry King, age 72
31 years 6 months younger than Ted Koppel, age 66
28 years 2 months younger than Geraldo Rivera, age 62
25 years 2 months younger than George W. Bush, age 59
20 years 1 month younger than Jesse Ventura, age 54
15 years 10 months younger than Bill Gates, age 50
11 years 0 months younger than Cal Ripken Jr., age 45
5 years 2 months younger than Mike Tyson, age 39
1 year 1 month younger than Jennifer Lopez, age 35
4 years 4 months older than Tiger Woods, age 30
10 years 10 months older than Prince William, age 23


and that you were:
30 years old at the time of the 9-11 attack on America
28 years old on the first day of Y2K
26 years old when Princess Diana was killed in a car crash
23 years old at the time of Oklahoma City bombing
22 years old when O. J. Simpson was charged with murder
21 years old at the time of the 93 bombing of the World Trade Center
19 years old when Operation Desert Storm began
18 years old during the fall of the Berlin Wall
14 years old when the space shuttle Challenger exploded
12 years old when Apple introduced the Macintosh
11 years old during Sally Ride's travel in space
9 years old when Pres. Reagan was shot by John Hinckley, Jr.
8 years old at the time the Iran hostage crisis began
4 years old on the U.S.'s bicentennial Fourth of July
2 years old when President Nixon left office
not yet 1 year old when Alabama Gov. George C. Wallace was shot


Top 40

You said your birthday is 8 / 22 / 1971
which means you are 34 years old and about:
38 years 6 months younger than Yoko Ono, age 73
30 years 3 months younger than Bob Dylan, age 65
28 years 1 month younger than Mick Jagger, age 62
26 years 5 months younger than Eric Clapton, age 61
23 years 3 months younger than Stevie Nicks, age 58
15 years 10 months younger than David Lee Roth, age 50
13 years 0 months younger than Madonna, age 47
9 years 6 months younger than Jon Bon Jovi, age 44
4 years 5 months younger than Billy Corgan, age 39
1 year 5 months younger than Mariah Carey, age 36
2 years 9 months older than Alanis Morissette, age 32
10 years 3 months older than Britney Spears, age 24


and when these songs were topping the charts
and these events occurred your age was:
ABC TV premieres In Concert: 1
Time in a Bottle, Jim Croce: 2
I Shot the Sheriff, Eric Clapton: 3
Silly Love Songs, Wings: 4
Elvis Presley Dies: 5
Do Ya Think I'm Sexy, Rod Stewart: 7
Another Brick in the Wall, Pink Floyd: 8
John Lennon is shot to death: 9
MTV makes its debut: 9
Who Can it be Now, Men at Work: 11
The recording of We Are The World: 13
Walk Like an Egyptian, Bangles: 15
Didn't We Almost have it all, Whitney Houston: 16
Back In The U.S.S.R. is released exclusively in Russia: 17
Nothing Compares 2 U, Sinead O'Connor: 18
Emotions, Mariah Carey: 20
Fleetwood Mac perform at Bill Clinton's inauguration: 21
The Sign, Ace Of Base: 22
The Rock and Roll Hall of Fame and Museum opens: 24


TV

You said your birthday is 8 / 22 / 1971
which means you are 34 years old and about:
45 years 3 months younger than Andy Griffith, age 80
41 years 9 months younger than Dick Clark, age 76
40 years 5 months younger than Leonard Nimoy, age 75
38 years 4 months younger than Carol Burnett, age 73
35 years 7 months younger than Alan Alda, age 70
34 years 1 month younger than Bill Cosby, age 68
28 years 9 months younger than Linda Evans, age 63
26 years 7 months younger than Tom Selleck, age 61
23 years 8 months younger than Ted Danson, age 58
21 years 4 months younger than Jay Leno, age 56
17 years 7 months younger than Oprah Winfrey, age 52
16 years 6 months younger than Kelsey Grammer, age 51
13 years 3 months younger than Drew Carey, age 48
10 years 2 months younger than Michael J. Fox, age 44
6 years 9 months younger than Calista Flockhart, age 41
2 years 6 months younger than Jennifer Aniston, age 37
1 year 4 months older than Alyssa Milano, age 33
6 years 3 months older than Colin Hanks, age 28
12 years 0 months older than Mila Kunis, age 22
19 years 10 months older than Madylin Sweeten, age 14


and that you were:
1 years old at the time the TV series M*A*S*H began
4 years old when Saturday Night Live first aired
6 years old when CBS introduced Dallas
9 years old during the first airing of Hill Street Blues
11 years old at the time the first Cheers episode was televised
15 years old when L.A. Law was first aired on TV
15 years old at the time the series Married with Children began
18 years old when Seinfeld was first televised
20 years old in the month Home Improvement began
23 years old at the time the TV series Friends began
25 years old when Everybody Loves Raymond first aired
27 years old when Who Wants To Be A Millionaire began in the US


The Movies

You said your birthday is 8 / 22 / 1971
which means you are 34 years old and about:
52 years 7 months younger than Zsa Zsa Gabor, age 87
41 years 3 months younger than Clint Eastwood, age 76
38 years 6 months younger than Kim Novak, age 73
35 years 6 months younger than Burt Reynolds, age 70
31 years 6 months younger than Nick Nolte, age 66
30 years 4 months younger than Ann-Margret, age 65
24 years 5 months younger than Billy Crystal, age 59
21 years 9 months younger than Whoopi Goldberg, age 56
19 years 1 month younger than Robin Williams, age 53
15 years 1 month younger than Tom Hanks, age 49
12 years 9 months younger than Jamie Lee Curtis, age 47
10 years 5 months younger than Eddie Murphy, age 45
1 year 1 month younger than Jennifer Lopez, age 35
7 years 6 months older than Jennifer Love Hewitt, age 27
16 years 8 months older than Haley Joel Osment, age 18



and when these movies were released in the U.S. your age was:
American Graffiti: 1
Jaws: 3
Star Wars: 5
Animal House: 6
Star Trek: The Motion Picture: 8
ET: 10
The Terminator: 13
Top Gun: 14
Planes, Trains & Automobiles: 16
Steel Magnolias: 18
Home Alone: 19
Wayne's World: 20
Jurassic Park: 21
Forrest Gump: 22
Fargo: 24
Saving Private Ryan: 26
Toy Story 2: 28