The Scoop

THURSDAY, JULY 20

I checked into the hospital to have a hole made in my side through which the doctor would laser the remaining stone. I asked the nurse tending to me for those warm blankets they had -- the idea being to wrap up my arms and get my blood vessels dilated for labs and IV. The lab lady came to draw blood for an HCG (pregnancy) test, and not only did she get blood on the first stick, she got A LOT of blood. Hooray for warm blankies! The arms went back into their blankets to wait for another nurse to come put in the IV. Her first attempt was between the knuckles at the bases of my middle and ring fingers on my left hand. Even as she was actually getting in the IV, I was thinking, "This isn't going to last." Sure enough, when she started the fluids, the tiny vein instantly blew. She tried a second time in the middle of my right hand, and we had a winner! More hooray for warm blankies. After quite a wait, the anesthesiologist came in and asked her many questions. She decided she wanted a renal profile and a hemoglobin on me because of the metabolic acidosis I had back in April. The IV nurse called the lab to see if they had enough blood from the previous draw to do this new set of tests -- they did not.

So another nurse and lab tech came in for more blood. They got a tiny bit from my left wrist -- man, does THAT hurt with all those nerves there! The lab lady filled a tube for the hemoglobin while everyone brainstormed where to stick me next. I lamented about it being too bad they didn't have enough after the HCG.

Lab girl: You had an HCG? When? Today?

She called the lab and learned they didn't have enough to do BOTH ordered tests, but they had enough to run the renal profile. We were done drawing blood!

After the results were in on the new tests, I was off to the operating room. Next thing I knew, I was waking up in recovery, and I noticed two bad things right off the bat:

1. My breathing tube was still in.
2. I couldn't move anything.

OK, this was so not good. All I could do was blink my eyes and grunt -- not very loudly. Through my panic I registered that my side/back didn't hurt as much as I had been expecting them to. Not my main concern at that moment. I proceeded to grunt as much as I could, and my left arm helped out by moving a little bit. My body kept trying to go back to sleep, too.

Oh no. That was SOOOOO not going to happen.

The nurse noticed me struggling, and I think I heard something about my O2 being up. All I know for sure is that the tube came out shortly after that, and after all the mucus was suctioned out I managed to whisper, "I can't move." The nurse asked the anesthesiologist, and she said to give it a few more minutes -- I was still feeling the medicine.

Geez, lady, I thought. What the hell did you give me?

Slowly but surely, things began moving like they were supposed to -- everything except my bladder, that is. Just like last time, when I tried to pee, nothing happened. In went a Foley catheter. Hooray (she said sarcastically).

Everything I learned after that I remember hearing, but not in what order or how (stupid anesthesia). I learned that because of my scoliosis and the way I'm all scrunched on the left side, the doctor couldn't get to my kidney. Frickin' great.

Not to worry, I was told. He decided to try through the urethra again. In the month since the last procedure, the remaining stone had shifted enough that he could get it. He told my folks he felt much more confident that he'd gotten it this time. I was to stay in the hospital overnight and have a kidney x-ray the next morning.

Fine by me. After the panic of not being able to move, I didn't exactly feel like getting up too quickly and roaming around.

So I stayed the night, and I couldn't get to sleep until about 3:00 a.m. Then I was awakened at 4:00 for vitals. Bloody marvelous. Spent the next three hours dozing only to be awakened by the nurse checking my IV, the nurse putting a new bag of fluids on my IV, the CNA emptying my catheter bag, the CNA putting a new fluid intake/output sheet on the bulletin board, and the CNA giving me new ice and water. Can anyone tell me why those last two had to be done at 5:00 in the freaking morning? And can anyone explain to me why it is so difficult to close a door when leaving a room -- a door that was clearly CLOSED when one entered the room to begin with? I called no less than three times just to have my room's door closed so the hall lights weren't shining in my eyes.

Oh, and I started my period after the surgery, too. I had been hoping the stress would put that off until I was out of the hospital. No, insisted my body -- we simply MUST be on time and heavy. Hooray (she said sarcastically).

FRIDAY, JULY 21

Was again dozing when the x-ray guy came in. Got that taken care of, had some breakfast (bacon, which my still-sore throat didn't appreciate much, and cream-of-wheat, which my throat liked much better), and talked to my great-aunt Deenie who told me she wouldn't come up to see me that day afterall because she'd woken up with a 101 temperature. Later was a bed bath and call from my mom to see if the doc had been in yet. Then it was TV, TV, TV while waiting for the doc to come in. He finally appeared at 1:00, and that ultimately meant me staying in the hospital another night because there was no way for Mom to leave from Mac, get Moby, pick me up, and be to work by 2:00. All the doc said was that he wanted me to keep the catheter for ten days.

Me: TEN DAYS!?!? I only had to have it four the last time!

Doctor M: OK, OK. We'll take it out Monday.

::sigh of relief::

So that evening, I indulged in two episodes of CSI, one of Dirty Jobs, and one of Numb3rs. Part way through Dirty Jobs, I called Aunt Deenie again to tell her I was staying another night, and we chatted for a while. Then the Dockums (friends of the family) stopped by for a little visit. Throughout the evening, I grew steadily sorer and sorer, despite the "air mattress" I was given the night before which we discovered later wasn't doing the job it was supposed to. I kept having to shift every hour or so. By 10:30, I was in tears because I was hurting so much. My CNA, Michelle, and another, Corinna, were determined not to leave the room until they knew I was comfortable and could sleep. They found the softest pillows they could get their hands on and laid me on them, then found out I had orders for pain meds and asked the nurse to get me a shot of Diloted (a morphine derivative, according to Mom). I finally got some sleep, but it didn't last long.

SATURDAY, JULY 22

Soon it was time to weigh me (in the middle of the night, after not weighing me ALL DAMNED DAY), and the pain kicked up again. I couldn't get another shot because (I guess) it was too soon, and I knew Lortab wasn't going to work with this level of pain. I got as comfortable as I could and just decided to deal with it. After about 30-45 minutes, the pain had reduced some, so I decided to see if the Lortab could take care of the rest. The nurse gave me 10 mg, and I think the combination of that and what morphine was still in me did the trick. Next thing I knew, it was a quarter of eight and a CNA was yelling "MRS. A--------" as she brought in my breakfast tray. I jumped and started looking around for Mom. I ate more bacon and cream-of-wheat (I forgot to order something other than eggs) and waited for Mom to get there and the on-duty doc to come in so I could talk him into taking the catheter out. I just wasn't getting used to the thing like I did last time -- in fact, as more time passed, the thing hurt more and more. The doctor agreed to let me take it out and sent a kit home for Mom to reinsert if I started having trouble peeing again. So far, so good. Everything's working normally, and stones are passing. HOORAY!!

I was dismissed, and Mom and I headed to Lowe's to get closet shelving units and towel bars. I was still a bit woozy from all the drugs (oooh, pretty colors!), so that was interesting at times. I'd be OK, then I'd go all dreamy and lightheaded. Wee! Then it was off to Walmart for my meds, bath mats, and food.

Got home, and I was attacked by dogs. Apparently, I was missed. First was Achmed the speckled cocker spaniel who met me getting off the lift and vocalized just how happy he was to see me, then there were Reba kisses after I got in the house, followed by Rebel's rottweiler huggies (he lays his head and neck across my shins and pushes against me as hard as he can). Reba, naturally, wouldn't get more than two feet away from me all afternoon.

In the evening, we went to my cousin Josh's wedding reception. He and Kyla had decided to have a small wedding with only immediate family (parents, grandparents, siblings, and attendants) followed by a big reception. Hadley (Josh's six-year-old son) cracked me up, as he usually does because he always says something off the wall. His vest's back buckle had come unclipped, and he ran up to my uncle where he was talking with my dad and me and loudly announced, "Grandpa, my dress came undone!" My uncle refastened it, and Hadley ran off only to return five minutes later with, "Grandpa, my dress came undone AGAIN!" ::shakes head:: The child's not normal.

The reception was fun. Most of the time my folks and I were there, I hung out with my cousin Sarah -- she and my aunt and uncle were up from Texas. I also got a present from my cousin Jenny. Last month, Jenny got to go on a student ambassador trip to Europe. Last night, she gave me a CD of all the pictures she took on the trip, and she gave me a T-shirt she bought for me in Germany. The previous was a promise that each student made when they were fund-raising for their trip -- if you donate X amount to my trip, I'll make you a picture CD. The latter was because she just wanted to bring me back something from her trip.

Places she visited that I can recognize from landmarks -- Germany (housing architecture), France (Normandy beach and cemetary, Eiffel Tower, Notre Dame cathedral, Arc de Triumph, the Louvre), Holland (the windmills, Anne Frank's house), and England (Big Ben, Tower of London, Buckingham Palace, Stonehenge).

I'm so jealous. She got to see Stonehenge. And she apparently liked it, because she took a TON of pictures there.



I've scanned through the photo CD today, and I can't help but think, "That's my girl." The majority of her photos are of scenery, architecture, and art -- EXACTLY the kinds of photos I'd have taken had I gone on a trip like that.

But, I digress. The dance started, and Josh and Kyla had their dance. Then they called the kids (Josh's from his first marriage) up for the second dance, and Josh danced with Jenika and Kyla danced with Hadley. Too cute. During the dollar dance, Sarah and I considered writing "I owe you" on napkins and going up for our dances with Josh, but we decided the joke wasn't really worth fighting through the crowds to get to the dance floor. My folks and I left around nine (after we got to see folks dance to the obligatory "Cotton-eyed Joe" and "YMCA") and I went straight to bed.

SUNDAY, JULY 23

I slept until 10:00 when Mom MADE me get up. How rude! Chrys, Bo, and Sarah came over around noon and we exchanged Christmas presents that neither Chrys nor I had ever gotten around to mailing. Chrys knitted me some leg warmers (she knows I get cold legs in the Winter) and bought me a new copy of Half-Blood Prince. She loved the square garnet ring I got her for Christmas, but the cast iron flying pig I had gotten her for her birthday was a smash (her catch phrase is "When pigs fly out of my derriere").

I think that pretty much covers everything. I'm still really sleepy, so I think rather than trying to focus on my diss, I'll just read some more LKH. Later, kids.

Oh! I forgot to mention that I had an email from Teresa (UNO bio secretary) on Thursday saying Mike and Danielle had a girl. I knew it! I KNEW it would be a girl! Don't know anything other than that, but I'll let you know all new and pertinent info as I am told.

Weekend Update

Friday: Mom and I went to Hutch. We went to Target to look for shower-type necessities since the new bathroom is finished. I also looked for extra-long twin sheets. Found some that were the same colors as the ones I'd seen at JCPenney the weekend before, but the Target ones were $5 more. Wouldn't've cared about the price (they were still just $20), but if I didn't want blue or red LAST weekend, I didn't want them THIS weekend, either. So all I came out with was a new purple V-neck T-shirt and a housewarming gift for Anita that I am SOOOOOOO excited to give her. Then we went to Home Depot where Mom got some metal electrical conduit pipe so Dad could make a shower rod. Have to make one since the new shower is six inches wider than any ready-made shower rod we could find. She also bought a shower curtain, a hang-over-the-shower-head caddy for soap and stuff, and a soap dish for the tub. Lastly we went to Health E-quip so I could see if they have a certain type of shower chair I want to get for bathing in NOLA. They didn't, but the rehab guy tried to describe a cheaper alternative that he had seen somewhere. I couldn't picture it, so he's going to try to find it again to show it to me when I go in tomorrow for the service guys to look at my batteries and tires so they can order in the correct ones.

Saturday: Got up at 4:30 so the parentals and I could go to El Dorado Lake for the Kansas Vietnam Veterans and Families Reunion. I haven't been in several years, but back when I was still going to MD camp, I went every year because it was held the weekend we came home from camp. My folks and a bunch of Hutch area vets would go over on Thursday night and camp all weekend. On Saturday afternoon, my mom would drive in to Wichita and pick up Stacy, Paul, and me from the bus, then it was out to the lake with everyone else. We'd eat, BS, dance, and enjoy the Saturday night fireworks. The guys would get drunk and pull all kinds of stupid stuff -- like the year they got in trouble for shooting water balloons at the helicopter with a water balloon sling-shot from several hundred yards away. No, not while the copter was flying. They'd yell "FIRE IN THE HOLE!" and launch. They got so good (despite their high blood alcohol content) that they actually shot a couple of them right through the open bay doors to the other side of the copter. I say good because they did it two or three times IN A ROW.

This year, we didn't plan to stay very long because that was the first day it was supposed to get to 100 degrees. We got our T-shirts (now the only one I have since I my other ones were in NOLA), Dad got a funnel cake, we browsed the few vendors that were there (I bought a leather fanny pack for the side of my chair for $10 and a necklace of carved unakite that to me looks like a thunderbird), and we watched the helicopter and then the skydivers land. One diver carried nothing, one carried a POW/MIA flag, and the last carried a huge American flag. It was very groovy.



On the way home, we stopped at Wal-mart in Newton because Mom and Dad needed dog and cat food. Dad and I went to check out the movies -- he got a Robert Redford movie named "Jeremiah Johnson," and I got two Jim Hensons ("Dark Crystal" and "Labyrinth"). I also got a Scottish drums and pipes CD.

Sunday: The McClaflin Family Rebellion (a.k.a. reunion) for my paternal grandmother's family. I hardly know any of those people, mainly because Dad doesn't get along with very many of them. He has one aunt that he loves dearly, and the rest of the family talks about her constantly. Kinda the black sheep, I guess. I made a point of talking to two great-aunts (LaDene, a.k.a. Deenie, and Carol) in particular because they gave me money after I got back from NOLA to the tune of at least $100 each. Talking to Aunt Deenie can be a chore, and sometimes you have to be extremely careful so you don't offend her (you know how some older ladies can be), but it wasn't bad -- at least for me. She made a special point of asking me about school and when I would be going back. She also said a lot of encouraging things to me concerning school, and they even seemed genuine and heart-felt. I think some of it's due to the fact that we have at least one severe mental-deficient in each of the last couple of generations who just can't seem to keep his/her fanny on the right side of the law, so it makes people like my brother (who was asked after by many) and me look like we're saints because we're going to school. Talking to Aunt Carol was great -- we talked herb-growing. I didn't even know she liked to grow herbs. Neither of us has much of a growing touch, apparently, but we try. I also talked a bit with my Great-aunt Thelma (my grandma's sister-in-law), who was SO HAPPY to see me, and my Great-aunt Lila, who remembers me when I was "so little" in Topeka (my dad was stationed at the AFB there when I was about a year old). Both sweet as they can be. Aunt Thelma and my Great-uncle Clyde were celebrating their 60th wedding anniversary complete with BIG cake. Sixty years. Wow. I just can't imagine it.

Monday: Spent $125.73 at the vet on six months each of Frontline (flea preventative -- I hate fleas with a passion, and Reba seems to be allergic to their bites) and Tri-Heart (heartworm preventative). Had three calls with my GP about a second UA I had done last week. The GP got the results on Friday and tried to call me, but I was in Hutch and they didn't try my cell. Called them in the morning, but the chart had been reshelved so the nurse didn't know why they had called me. She'd find out and call me back. I called a second time because if they were going to call me in antibiotics, I wanted them to do it while I was still in town. The receptionist said she'd tell the nurse to call me PDQ. Two minutes later the receptionist called back and told me the nurse had said they'd faxed everything to the nephrologist and HIS office was probably the one that called. No, I said, it was the GP's office. Well, receptionist said, the nurse said the nephrologist will handle it. No, I said, because the nephrologist is releasing me back to the GP since my blood sodium bicarbonate levels are "fantastic." OK, receptionist said, I'll tell the nurse. The nurse eventually ended up informing me that I need to get a THIRD UA. ::sigh::

In the afternoon, I started on the review of the hoping-to-be-published FA article. The basis is sound, I think, but there are a few more things I'd like to see them address for publishing. I also made a flyer advertising my need for PCAs and emailed it to one of my friends asking her to put them up on campus. She emailed me today asking if she could take off the wage announcement part in an attempt to get me more inquiries. Seems no one may be interested in my $8.00 per hour when there's such a labor shortage that even McDonald's is paying $10.00 per hour. I may have to work at McDonald's myself to help pay for my attendants. So I told her to take off the wage part and add a part that emphasizes more than I already had that this is for EXTRA, supplemental cash. Unless the BoR wants to give me a couple hundred dollars more a month, I can't afford more than $8.00 an hour if I plan on paying for my credit card, my phone, my internet, Moby's insurance, my gas, and Reba's and my food. ::sigh again:: I'm trying not to stress over this, but my PMS is not helping that.

OK, I need to go do something academic and productive so I can lie around in the hospital Thursday night and Friday and whenever else and only concentrate on how crappy I feel and not all the academic things I need to do. Later, lovelies!

My friends are having a baby

My NOLA friends Danielle and Mike are expecting a wee little offspring, and they head to the hospital tonight so Danielle can be induced around 10:00. Please join me in wishing them luck and a healthy bebe (as they're called in Cajun country).

More Kidney Surgery

Well, I have my third kidney surgery scheduled for Thursday, July 20. Good in that I'm getting it out of the way so I can get recovered and back to NOLA in mid-August (if I repeat it over and over, it'll come true, right?). Bad in that I'm more than likely going to miss my cousin's wedding reception on the 22nd as the doctor said I'm looking at a minimum three day stint in the hospital. They'll be making a hole in my side and lasering the remaining stone.

I have lots of work to do before that. Wish me luck!

Shot to the Ego

This morning I received a request from Spain for a reprint of my FA publication -- the study I did for my MS was published, for those who have been under a rock or I didn't know at the time or otherwise were removed from my contact seven years ago when I was telling everyone under the SUN about it because I was so freakin' ECSTATIC!

Again, so exciting when people think it's worth reading.

Even more exciting when people cite it in their own research -- which has been done twelve or thirteen times that I know of.

*EDIT* -- I've been cited FIFTEEN times, the most recent being earlier this year.

::happy gimp dance::

Weekend in Review

Originally, Jonikka was supposed to come up yesterday and we were going to work on the quilt some more. However, she called me on Friday, saying that a friend of hers' work shift would be changing soon and this weekend would be her last for a while to spend time with him. So we made plans to get together NEXT Saturday, then yesterday morning I remembered I already have Saturday plans with my folks. ::slaps forehead:: I tried calling her cell, got no answer, tried the house. Jonikka wasn't there, but Anita was. She told me about the fiasco that happened at work the day before, and she was still so upset I said, "Too bad you can't come up here."

"I'm not doing anything," she replied. "Do you really want me to come up?"

So she did. We hung out here at the house for a little while, then we drove in to the Hutch Mall so I could scope out extra-long twin sheet sets. We hit Sears, Dillards (man, I hate that store), and JCPenney (where I found and bought a tan set) as well as hitting Bath & Body Works and Hot Topic.

B&BW: I was happy to discover that they still carry the aromatherapy scent Jasmine Vanilla, so I reacquired the body spray (to replace the nearly new bottle I lost to Katrina) as well as the matching shower gel. I also discovered Sandalwood Rose, so I bought the body spray and shower gel of that as well. Anita got shower gels of basil/something, sage/something (lemongrass?), and Japanese cherry blossom. All our shower gels were on sale for CHEAP, so that was a bonus, especially for A.

HT: First, I didn't realize the Hutch Mall HAD a HT. Second, they were burning so much incense that I started sneezing after ten minutes in the store and woke up with a sore throat. Finally, I like this HT better than the one at Towne East because it's bigger and I can get around in it.

After the mall, we ate at Chili's. Since I'm not on painkillers this time (the last time A and I went to Chili's, I was), I splurged on a Calypso Cooler -- spiced rum, peach schnapps, grenadine, and orange juice. That thing was GOOOOOOOD!! I normally barely drink a third of any alcoholic beverage, but I drank more than half last night. Was initially woozy (I have NO alcohol tolerance despite my Irish and German blood) and I slept like a rock. Didn't want to get up this morning, either -- though I think that had more to do with the rain than last night's bender.

Today I wrote some on my diss chapter and started on a book that A loaned me. The book is called Bones: Buried Deep and is based on a Fox TV series about a forensic anthropologist (don't know who plays her) and an FBI agent (played by the dude who was Angel in "Buffy" and "Angel"). It's written by the same guy who writes the "CSI" novels. I'm just short of halfway through, and I'm liking it A LOT. I think I'm going to have to try and catch the series.

Oh, yeah, I forgot that this morning I watched "Independence Day" for about the 5,186,376th time. Jeff Goldblum -- rrrrrrrrowr! This evening, I watched two eps of "Star Trek: TNG" and a new ep of "Mind of Mencia," then I ate a mint Drumstick and hopped on the 'Net. Mom should be home soon, so then I'll be off to bed.

G'night, y'all!

What is FA?

Because I've been asked, here follows an answer to "What is FA?"

FA = fluctuating asymmetry = random deviations from perfect bilateral symmetry = my area of research interest

It has been hypothesized that exposure to stressors (temperatures outside the norm, chemicals, salinity, radiation, etc., etc.) during development will cause an organism that is otherwise symmetrical to not be symmetrical. This does not mean six fingers on one hand and five on the other, but rather (for example) that the eye on the right is slightly wider than the eye on the left. The side that is larger can be either the right or left, thus the "random" in the definition above.

The jury is still out on whether this is true or not, and the reason the jury is still out is what led to my "EUREKA!" moment a short time ago -- no one follows the scientific method anymore. No one replicates studies. The journals all want something "fresh" and "new" -- what we scientists refer to as a "sexy" experiment/field study. The problem with this approach is that the results obtained in any given study could have been obtained purely by chance. As a fluke. By pure, dumb luck.

No one really knows if FA is caused by accidents during development because very, very few studies are ever replicated. We scientists are skeptical by nature (or we should be), and we are rarely convinced (or we shouldn't be) of anything based on one study of any given stressor or species.

OK, so maybe that was more than you really wanted to know.

I'm becoming a grownup scientist!

Last night, I received in my UNO email a request from the journal Copeia (one of the big, peer-reviewed journals in the fields of ichthyology and herpetology) to review an article submitted for publication. I read through the email, not a little confused about how these folks had gotten my email address. It wasn't some random deal where someone assumed I am a professor -- in other words, it was addressed to "Ms. A--------" rather than "Dr. A--------" or "Professor A--------." I read through the email, which included the paper's abstract, and saw two links at the bottom. The first was to accept. The second, obviously, was to decline, but included a request for the name(s) of anyone I might deem qualified to review. After seeing that, I thought maybe someone I know had gotten it and recommended me. I popped off an email to three of my committee members and my MS advisor asking them if they knew how the journal had found me. This morning, my current advisor informed me that a prof in the department (who is an expert in one aspect of the study) had been requested to review the article, but he had declined and recommended me as more qualified to review it since it is about FA..

Me.

ME!

A) I did not realize that non-PhDs could review a research article submitted for publication.

2) It still surprises me when people consider me an "expert" in the field of FA. I've done ONE study and am still in the process of completing a literature review.

My MS advisor told me, " . . . if you've got the time it's a good thing to become involved in
these activities!"

I just clicked the "accept" link. I have thirty days to complete the review.

When did I become a for-real scientist????

Surprise call

Last night just before 10:30, my cell rang. It was my friend Suzanne from San Diego. She'd been thinking about me, she said, and since it was almost the 4th she decided to call and see if I'd gotten any sparklers.

Suz is another MD camp friend I've known since we were little kids. As teenagers, she would have 4th of July parties at her house for a weekend. Her folks would go on vacation, taking the two youngest of the six kids with them, then a few of us camp people would hang with Suz and Jay (and sometimes Sandy) and have a great time. We had a blast making our own soap operas and talk shows, complete with commercials, using their folks' video camera. One year, Jay bought sparklers that turned three different colors and made a BIG deal out of it, and it's been a 4th tradition ever since:

Person 1: Did you get any sparklers this year?

Person 2: Yeah, and they turn THREE DIFFERENT COLORS!!!

It's always wonderful to talk with Suz -- she's one of my dearest childhood friends and I admire her more than I can say -- and one of these days I'm going to figure out why we go so long between conversations. Last night we mostly shared about our various doctoral woes and fears (she's getting an education doctorate). She also told me about a program with which she's involved -- adults with disabilities mentoring kids with disabilities. The program received a five year grant and is the only one of its kind in the country (there are mentoring programs for gimp kids, but not where the mentors are also gimps). It's one of those things that makes total sense on a logical and practical level, so you gotta wonder why no one's done it before. Last Summer there were only five kids in the program, but this year there are 21. It sounds like an incredible deal, and I'd love to see one started in other places. I'm going to talk to her more about it after they have their workshop this weekend and find out what all they do. I told her I'd love to see one started in NOLA, and she thought it was a good idea as well.

Suz and my Sacramento-friend Kim (also from MD camp days) and Nay are my gimp heroes. Whenever I start feeling discouraged, I know I can vent my frustrations to them and they'll understand. They usually also help me figure out ways to deal with the frustration. Suz was the one who woke me up to "gimp culture" -- it's another one of those things that makes sense when she said it to me, but I'd never really thought about it before. We have our own language (which some ABs can become privy to after secret initiations -- ::winks at Anita, Jonikka, and Kevin::), our own support systems, our unique problem sets. Suz was telling me about it a while back when she was attending a workshop in Chicago, and it seemed so obvious after she described it. Duh!

I think that's why I'd like to see some sort of mentoring program started in NOLA, or at least something where we gimps can meet each other. I know I'm not the only one in the city down there, but I'm not exaggerating when I say I can go MONTHS without seeing another one so that it FEELS like I'm the only one. Not that I don't think there are ABs who can sympathize with my gimp struggles (of course there are), but just like a black person sometimes needs another black person to vent to or athletes hang out with athletes, so too do gimps need other gimps. I firmly believe that without MD camp and the people I met there growing up, I don't think I would have ever even THOUGHT about applying to a PhD program out of state let alone have actually moved. Kids especially need to know that their options are not limited, that adaptations can be made to help them.

I'm seriously going to look into doing something when I get back to NOLA.

Thanks for the idea, Suz -- and thanks for being one of my inspirations.

Fun Saturday

Jonikka drove up Saturday morning, and we spent a little time starting the cut-out of the quilt we're making -- after we found scissors, pins, and a measuring type device since Jonikka didn't bring any of those with her. After some lunch, we drove to Wichita and picked up her daughter and Anita before heading over to the tea-tasting at the new Chelmsford Tea location. We sampled some yummy (Jasmine with Flowers Green tea, Russian Spice) and some not-so yummy (Hawaiian Colada) teas, munched on scones and herb bread, and spent WAY too much money. I bought four teas (the aforementioned "yummy" teas plus decaf Earl Grey and "Joshua's Blend" -- lavender, peppermint, and rosehips) and a box of 100 bags to use in lieu of a strainer since all but the Russian Spice are loose teas. Jonikka uses these bags and says they're fab.

After the tasting, we had some time before we had to pick up Kevin for dinner, so we headed over to "Buns and Noodles" (Anita's name for Barnes and Noble) to hang out. I found a bonded-leather edition of the complete Sherlock Holmes for $20, so I snapped it up. After, we picked up Kevin and headed to Hana in Oldtown and consumed mass amounts of yummy Japanese food.

Later, we dropped off Anita and the youngling then picked up my brother who wanted to come home for a while. When we got to the house, Jonikka lamented, "I can't get the window up!" The driver's side window had managed to slip of its track, and it took my dad, my mom, and my uncle to fix it -- it involved taking the door completely apart. ::sigh:: But it's fixed.

Oh, and I got lots of books from Anita. She rescued almost all of the CSI books and one CSI: Miami book, a complete illustrated Sherlock Holmes (which I gave to P), and a shaman book from the Conway Springs library purge.

AND she brought me a beautiful rhino figurine from California. I think it's made of jasper. I know I love it!

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 . . . .