Thursday, July 30, 2009

Reinvention - FAIL!

In the last week, I have had 2 beloved old friends from high school & college days let me know "I'm going to be in town this weekend. Can we get together?"

And, seriously, the first thought that crosses my mind, even before the inevitable
"Is it possible to lose 20 pounds in 2 days?"

Okay, maybe I don't look THAT bad,
but it makes me realize that that part of my reinvention has not gone well at all.
If only they could have seen me a year or 2 ago.

I really don't like myself very much at this moment.
I'll do better.

And I'm going to have fun with my friends.
They still love me anyway.

Tuesday, July 28, 2009

Pushing & Pulling & Pushing

On the same day that Brandon had his beach party, St. Mary's kids, past & present, joined in the Allen Stone Memorial Run*Swim*Run at the oceanfront with Team Hoyt Virginia Beach.

Special beach wheelchairs, similar to the one we used with Brandon, were pushed.

Rubber boats were pulled.

Jogging strollers were pushed.

It takes a lot of muscle to get the kids through the course.

BUT, muscles are a plentiful, yet underused commodity for a lot of us that we sooooo take for granted. Find a group in your town and join in on the fun. You will find it incredibly rewarding.

Wednesday, July 22, 2009

Going the Extra Mile

Medicaid is the major provider of funding for facilities like St. Mary's, and they have implemented a 'new' approach to the provision of services to persons requiring long-term services. "Person-Centered Planning" is a means of coordinating services that places the wants, hopes and choices of individuals with disabilities front and center.

What, you say? Isn't this a big "duuuuh!"? Isn't this what has always been done? Well, yes and no. While all health care providers certainly want to give their patients the best care possible (or at least we hope they do), much of it has historically been geared toward what we (as the providers) feel is important FOR the patients vs what they feel is important TO them.

At St. Mary's, we've always been concerned with our kids' happiness, and I give great big kudos to the staff and administration there for being so willing (gladly willing) to go the extra mile to ensure that not only are their physical bodies cared for, but that their hearts are nurtured as well. It's tough enough to have to live with permanent disabilities. We want happy kids. I am constantly amazed at the lengths we will go to see that smile, to bring that bit of joy.

Enter Mr. Brandon. He has definite ideas and strong opinions about his wants, hopes & needs. We have already taken him to Blacksburg for Virginia Tech football games (go Hokies!) twice in the last 2 years (scroll to Nov 13th). And in the last few months, we have put together "Team Brandon" to determine what his thoughts are about what goes on with his care and what he wants for his future.

No, we're not talking college at this point. Baby steps, folks.

Among discussions of boring medical issues, we discovered that he wanted to go to the beach. He has been to the boardwalk in his wheelchair a couple times, but he has never felt the sand between his toes or the sea wash over his body. Such simple things, things that we take for granted, can mean the world to someone who is totally dependent on others for his care. So he wanted a beach party for his team, including his family. And a beach party is what he got.

There's a lot of planning that goes into something like this. We have to think about things like transportation, shelter, getting him from the boardwalk to the sand, etc etc etc etc. It took a couple weeks to work out all the logistics of what we would need. One of the main things we needed was a beach wheelchair - the kind with the big balloon tires that are easy to push over the sand. We were loaned one that belongs to a friend of his. It was perfect, and many many thanks to Brandon's friend and her family for their generous offer.

The weather was also perfect - sunny and in the 80's.

First things first though - we needed a nice stroll to the Dairy Queen because the ice cream was calling.

The next thing that we had to do after we all got there was to set up the canopy and get him out of his wheelchair. He had been in it for quite awhile, and he has near-constant back spasms. He wanted to go on his belly, and he quickly discovered the pleasures of digging in the sand. Normally, his right arm doesn't cooperate with him at all, but this gave his crazy arm something useful & fun to do.

Unfortunately, we saw this coming, but luckily had plenty of water on hand to wash the sand out of his eyes & mouth.

It didn't deter him from his mission of digging straight through to China though. We ended up doing quite a bit of rinsing, but he figured it was worth it. He loved this best of all.

But hey, the waves are waiting.

Us: Brandon, do you want to go down to the water now?
Brandon: Uh uh.

5 minutes later:
Us: Brandon, don't you want to go in the water yet?
Brandon: Uh uh.

Couldn't figure out why he wasn't keen on getting in the water.

Us: Brandon, don't you think it's time to get in the beach chair and go in the waves?
Brandon: Uh uh.

Okay, this is getting silly.
Us: Brandon, it's time to go to the water.

So, because we're all meanies, we put him in the beach buggy and wheeled him down to the waves.

He was NOT impressed.

But it was only some anxiety of the unknown.

Didn't take him long to appreciate the enthusiasm of everyone around him, the crashing of the waves, the coldness of the water, and the doggone FUN of it all!

He loved this best of all. Oh, what the heck. He loved it ALL!

These are some clips of him getting progressively deeper in the water. I swear, he had a blast.

This last clip has a random little boy that was totally without pretense or curiosity about the boy in the chair. He just kept running back & forth between Brandon and the waves, talking & high-5'ing Brandon like he was any other kid. I wanted to hug him.

And, on the way home, exhausted but happy. We are totally going to do this again.

Monday, July 20, 2009

I Wanted To Be An Astronaut

I am loving the History Channel today.

The date is July 20, 1969. I am sitting on the living room floor of my father's townhouse and we are watching history unfold on his old black & white console television. I am mesmerized, rapt, awestruck, and I can. NOT. tear my eyes away.

For the next few years, I was spacestruck. I read everything I could get my hands on about the space program. I wanted to go to Purdue University because that's where Neil Armstrong went to college. I wanted to work for NASA. A 13 year old girl so fascinated with space? Hmmmm, how to convince you?

Ooh ooh, I know. I'll show you some of my toys, none of which I have been able to get rid of. BS will have to do it after I'm dead, because these will stay with me as long as I breathe.

I saved Cheerios box tops until I had enough to send away for this totally awesome moon globe (which, by the way, currently resides in my living room) . . .

I saved my meager allowance until I had enough to send away for this 4 foot moon map (which BS is holding up for scale & to show you I still have that too). It lived on my bedroom wall for several years, but now I really need to do something to preseve it . . .

I read this book (copyright 1969) until it was dog-eared and whole pages practically memorized. It still lives in my bookcase . . .

And this Saturn V rocket model? It's my 2nd one. The first one was glued together & painted about 39 years ago and has long since disappeared. I'll show you this one when I'm done with it . . .

When I think about the computer class I took in 1975, when the computer took up a whole room and we wrote programs on IBM punch cards, I feel nothing but awe for the engineers & pilots who orchestrated the space program using the technology of the 1960's. Even more amazing is the fact that NASA didn't lose a single astronaut during any of its missions. I know, all 3 Apollo 1 astronauts died, but that was during a routine test while still on the ground.

Would you have trusted the technology of the time to put yourself in space? Before anyone even had a pocket calculator?

And today, the History Channel is chock full of specials about the space program. I am reeeeeeally glad I don't work on Mondays. I'm not leaving my couch all day!

Please leave a comment and tell me where you were when you watched the moon landing. And yes, I know I may get some sarcastic comments about still being in utero, or not even a twinkle in your dad's eye yet. Tough. What did the space program mean to you?

Sunday, July 19, 2009

Lieutenant Dan, ICE CREAM!

Today is (thank you Ronald Reagan) NATIONAL ICE CREAM DAY!!!

So, go and have that big ol' bowl of creamy deliciousness for dinner.

(I can't say the words "ice cream" in my head without saying them in that voice)

Tuesday, July 14, 2009

Goodbye Beloved Boy

Sometimes our kids don't always grow up to leave the nest when they turn 21.

Sometimes we can't hold on to them, no matter how hard we try.

D and his sister both came to us when they were very young, and they were crazy about each other. Sometimes what affected one affected the other. After a time, in spite of the outstanding medical care we provide, he and his sister required more intensive services than we are equipped for. They both had to leave us for the pediatric unit of a long-term care hospital, where they stayed together as roommates, but where they each required a ventilator to breathe.

We wanted to keep them here, but their respiratory status was just too shaky.

We were able to keep in touch with him and his sister because the program that provides our educational services also provides the educational services at the hospital.

Even though he didn't live here anymore (and I know I've said this before), he was always ours in our hearts.

Today D's lungs gave out, and he died this afternoon.

He and his sister were very close, and now we worry for her.

Somewhere a journey begins at the end
of the worldly existence we know,
Somewhere a path stretches over the stars,
and rivers of memories flow.
Somewhere a silence is heard far away,
and the brightness of day fills the night,
Where the trials of life are resolved into peace
when a soul finds its way to the

Monday, July 13, 2009

He Gave Me Permission - Really (edited for clarification)

See, here's the thing.

On my last post, I put some of my favorites of the pictures I have taken that (I think)
show the exceptionally fine qualities of my li'l camera.
;-) to Russ & RAD

For example, there was a picture taken at the International Tattoo.
I have no sentimental attachment to that picture.
The only reason that picture was included is because the shutter caught the sparks very nicely, IMHO.

So, they weren't necessarily MY favorite pictures (although some most definitely were),
but there was some quality about the picture I liked - light, close-up, that sort of thing.

I had to leave out some of MY favorites,
simply because I did not have the permission of the subject to post them on my blog for all the world to see.

So, this morning BS asks me if I still had a certain picture from our cross-country road trip 3 years ago. Duh! Of course I do. I ended up copying a whole folder of pictures to his flash drive so he could have them too. The one he was specifically asking about was taken at the Grand Canyon. The unfortunate thing about this particular picture is that it was his BM (that's me - beloved mother) who requested & set up this particular shot.

Sadly, my siblings & I have never been known for being any kind of a good influence on young, impressionable minds.
All our kids will attest to that.

My mother sighs in long-suffering resignation.

The reason that BS wanted this particular picture is that he made it his new profile picture on his Facebook page.
For all the world to see.

BUSTED! Now I get to show it to you, along with another proud moment from that trip
(during our peek into Canada, the land where the air smells of maple syrup).

He told me I could, really.

These were taken when he was still a handsome long-haired hippie freak.
He is now the handsome short-haired hippie freak you saw in my last post.

I think the pictures need no captions, but you may want to click on them to enlarge them so you can note some of the details.

About this last one - he had just used the ATM machine behind him and was holding his credit card between his fingers, which,
because of the angle, totally looks like something else, I know. He was NOT a patron of that particular business establishment.
Just wanted you to know that.

Saturday, July 11, 2009

A Different Picture. Whew!

I know you are tired of looking at a diagram of your large intestines.
So, until I can think of something else to post about,
I hope you look at some of my favorite pictures that I have taken, in no particular order.

Oh, and Russ & RAD, these were taken with my Fuji E900 point & shoot set on "Auto" with no editing whatsoever.
Any pictures where I used the flash or 'macro' setting are duly noted.
Click on any picture to enlarge it.
(Mom, then click the back arrow - very top left - to get back to the post)

Cilantro blossoms on Rosie's cutting board in the fading afternoon light

Some of my flowers (macro)

Some mating june bugs looking out of my picture window. They stayed that way for hours (macro)

The mama fox from my swamp.
I made friends with her, and she would come to within a foot of me while I sat on my front steps.
Of course, I fed her, so that could be why she wasn't afraid.
I also sang to her, and she came back anyway.
She died last year. I miss her.

At the International Tattoo

A field of buttercups in coastal North Carolina

My "happy little" Bob Ross tree (macro & flash)

Macro but no flash

Trees in my front yard

These trees at the beach didn't listen to the weather report saying there was no wind

What can I say? I love these guys (that's mine on the right)

A glassy pond in my father's neighborhood

My father's backyard

Virginia Tech - BS's alma mater

A frozen waterfall on Rt 460, just east of Roanoke

Lllllliterally on Rt 460

The ghost town of Glenrio TX on an abandoned portion of Rt 66 at the Texas/NM border
The sign originally said "First Motel In Texas" on one side and "Last Motel In Texas" on the other

Rocky Mountain National Park, Colorado

Desert Sunset

And, last but not least, my profile picture - a random pretty cloud.

Sorry, I think I got carried away,
but certain people who read this are interested in the "Auto" setting on my camera.
I have to defend the honor of my point & shoot.

Tuesday, July 7, 2009


This post is about a colonoscopy, so some portions may exceed your allowable gross-out factor. In fact, I loved teaching pathology at the college, so I might get a little out of control. Just be warned.

You like that brown font color? Heh.

I had my colonoscopy yesterday.

I posted a blurb about this a few days ago, but let me refresh your memory for some statistics: colorectal cancer is the third most common form of cancer and the second leading cause of cancer-related death in the Western world.

It killed my grandmother.
My mother has gotten part of her large intestine removed.
It doesn't like my family.

So, I started getting screened early. Typically, you start at 50, but, because of the family history, I got my first one at age 48, with 2 polyps snipped out then. Polyps themselves are usually benign, as mine were, but if left alone, they may turn cancerous later. And their presence predisposes you to developing nasty, angry ones later in life.

I CANNOT overstate the importance of regular screening.

On to the story.

First of all, there is no way I can write about this and be as entertaining as, say, Dave Barry. So, I'm going to let you read his account of the procedure. At least I think he wrote it. Sounds like him. My mom sent it to me in an e-mail.

The Colonoscopy Journal

I called my friend Andy, a gastroenterologist, to make an appointment for a colonoscopy.

A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner.

I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'

I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep', which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America's enemies.

I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then, you fill it with lukewarm water... (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.' This is kind of like saying that after you jump off your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep.

The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?' How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep.

At first I was ticked off that I hadn't thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.

When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point. Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand.

There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate.

'You want me to turn it up?' said Andy, from somewhere behind me. 'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, ABBA was yelling ' Dancing Queen, feel the beat of the tambourine', and the next moment, I was back in the other room, waking up in a very mellow mood. Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

No doubt, when good ol' Dave thought about what was going to happen to him, he envisioned the feeling as something like this . . .

I knew that wasn't quite accurate. I've had one of these before, so I kind of knew what to expect. But time can ease the pain & dull the memory. Previous experience aside, in order to do this, you have to leave every single shred of your dignity at home. Even more so than for childbirth. At least with childbirth, everyone's careful & very public scrutiny of your naughty bits at least gets you a precious baby for your humiliation.

This? They aren't interested in anything so sentimental. All that careful scrutiny of your hind parts is purely for their fascinated interest in your bowels and what emanates from them. Nice.

If you've ever done this before, you know the worst part isn't the procedure itself. It's THE DAY BEFORE.

My mise en place for Sunday's eats:

I didn't drink the horrid stuff this time. Noooooo. This time, I was smart and asked for the horse pills.

Doc: Swallowing pills doesn't bother you?
Me: No, I love to swallow pills. Wait, that didn't sound right.

Truth is, I am an expert at swallowing pills. Wait, that didn't sound right. But my mother made sure we learned how to swallow pills at a young age, and I am very grateful for the lesson. We even used to have contests to see who could swallow the most vitamin C pills at once. Vitamin C is benign stuff. You can't OD on it, and any excess just gets pee'd out. So, given a choice between drinking foul liquids or taking a bunch of pills, I'll take the pills, thanks.

My food intake on Sunday consisted of 2 banana popsicles, a bunch of white grape juice with some strained limeade to kick it up, jello, and water. I decided not to have any of my homemade chicken broth after all. Just wasn't in the mood.

Then, at 5:00 pm, the horse pill regime started. Every 15 minutes, I take 4 pills with 8 oz of liquid for a total of 20 pills. Then, I wait . . . .


The anal sphincter is an amazing & incredibly strong structure. I have a newfound respect for it, as I did not leave any skid marks on my underwear all night. Although, that's not what would have happened anyway, if you know what I mean.

The sensation was like peeing out your butt. Seriously. Just relax that sphincter and Dave's geyser analogy isn't far off. It is a very odd sensation. There is no pushing or straining at all. Just the opening of the faucet. It's really very unsatisfying - you never feel 'empty'. In fact, when I mentioned this to BS, we had a lovely warm & fuzzy heart-to-heart conversation comparing that particular sensation to the male urine stream after 3 beers. I recall his boastful comparisons to fire hydrants and sandblasters, as well as games of aiming at things in the toilet. Ahhh, special moments between mother & son.

Anyhoooo, needless to say, I didn't get my 8 hours that night. The horse pill sequence was repeated in the wee hours of yesterday morning. Seriously, like Dave, since I had to go again when I got to the office, all I could think of was the hideous scenario of some residual Old Faithful being in there when they inserted the probe. ~s~h~u~d~d~e~r~

I even took my camera with me to document the whole thing, but my batteries died after 2 pictures. Sigh.

My blood pressure was equally lovely - 117/68

See the looooooong tube?

I did, however, ask for a little less anesthesia so I could watch on the monitor. The doc kind of smiled knowingly, and pretty quickly, I had a wee change of heart.

Me: Okay, it's really starting to hurt. Can I have some more stuff now?
Doc: Heh.
Me: Ahhh, that's....... better.......................

Then I woke up in recovery. See, here's the thing. They did what is referred to as a "flip" or "double-ender" on me, as they had to do an endoscopy (technically an esophagogastroduodenoscopy) to take a peek down my throat because of my reflux (for which I have been essentially taking Prilosec for the last 10 years). You can bet your sweet bippy I was asleep for that one. I had a polyp removed there 9 years ago.

I recovered at my mother's condo-on-the-beach, fully intending to gaze out at her view whilst lounging in the easy chair. What really happened was that I slept all afternoon (snoring, according to her) and woke up with a horrendous sore throat. BS came by after awhile to take me home after we all ate leftovers of sloppy joes & broccoli salad. Yum. And I got to bring home the rest of the sloppy joes. Thanks Mom!

The sore throat only got worse as the evening went on, and when I woke up this morning, I could barely swallow and it hurt to talk. It was deep in my throat, about the level of my collarbone, way beyond the reach of a soothing salt-water gargle. Drinking was agony, and eating anything was torture. I sounded like a frog, much to the amusement of anyone I spoke with today, and none of it eased until late in the afternoon, as I type this (4:37 pm).

The verdict?
Colonoscopy: 3 polyps (non-cancerous) removed and sent for biopsy.
Endoscopy: gastritis (biopsy sent), hiatal hernia (not a big deal), tight upper esophageal sphincter (which he dilated), and continued prescriptions for Prilosec, or it's generic equivalent.

My butt feels fine.

If you have never been screened before, don't put it off for fear or humiliation. You won't feel a thing. You won't notice anyone poking around your nether regions. You will be asleep. Hey, the docs & nurses get paid to do this, it's no big deal for them.

Many thanks to Dr. Jan Janson of Gastroenterology Ltd. in Virginia Beach. You are kind, skillful, and funny! You made it all very easy.

All in all, it was great fun.

edited to add: I scared my mother this evening when I spoke with her. "Are you sure this is Kathy?" She thought it was BS pretending to be me. And she heard me when the voice had improved. My co-workers heard me when it was at its worst. I've been told that next time I have to write 'singer' across my forehead so they'll use a smaller tube.