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Saturday, August 30, 2014

back in the days when I hid from the world

This is from a private blog originally posted 11-11-08, long before I went public with how difficult things got for awhile. Blogging gave me something to focus on while things were really hard, and I made a few observations in this one about public perception of handicap while we were traveling.

Sunday

@ 12:20 p.m.

Scott's outside multitasking, I'm in here with football drooling over the smell of a punkin pie cooling down, and the Quack Attackers are stomping the Crazy Jaizzys big time so far. I'm sitting here hoping Scott doesn't get shot by some idiot out there. He's upset because someone snuck a vehicle down the hill across the road from us, and he got the binoculars and saw them carrying deer stands, so he's out somewhere on our lot (4 acres seems kinda big when it's all a tangle of woods on a 45 degree slope and you can't see anything through all the trees and brush) pounding in stakes so he can tape off our boundary. We should be able to shoot deer practically in our own backyard, but it's never happened in 15 years because so many people poach, and you know they're doing it if you hear a gunshot during bow season, like I heard today. So I texted our scores to him just to see if he'd text back, and he did, so no one has shot him yet. He's getting to where he tells me his walk route before he heads out now just in case he does get shot. Sometimes it's hard to believe we live in a nice subdivision where everyone seems to own an AKC registered dog.

Our weekend trip was pretty awesome, except I got really wiped out and we had to come on home. We shouldn't even be back yet, but I'm fine with it. I'll hafta wait till tomorrow to load the video and pix because football really impacts computer usage, so it'll take awhile. Got home after dark last night, so didn't check the chickens till this morning. Jaizzy's trough was still half full, so at least we know it's probably just a single chipmunk stealing feed, as opposed to a gang. We plunged into a cold snap, holding in the 30's, kinda doubt it makes it up to the 48 degree projected high, so Jaizzy pretty much stays in her house. She came out for leftovers out of a restaurant box this morning, so at least she's hanging in there. Not quite halfway to naked yet, but only one tail feather left, wings are half gone, underside fluff is gone, and there are patches on her chest that make her look she's a pillow walking around that got ripped open. Funny how white she is under all that red.

I don't get out much any more, so just getting out at all was a really big deal for me. We've mostly lost all the leaves around here now, but heading south we passed the color line and got back into more autumn. The Ozarks are gorgeous in the autumn, and we went through several ancient mountain ranges (so they're not as tall as like in Colorado and stuff, but still very rugged). Got to check the progress around Clinton where the tornado went through end of last winter, still looks pretty rough, some of the houses were abandoned. I hadn't been in Little Rock proper for about 20 years, and the change and growth was amazing. I mean, it was big before, but I think the highways had a bunch of babies.

Stopped at the North Little Rock information center, very nice lady at the desk, told her I mainly just needed to sight see from the car, and from there we couldn't get the poor woman off the trolley. Take the trolley, it takes you to all these neat places, you've gotta take the trolley, etc. Trying to get her to understand that I literally can't even take the trolley was a waste of air. The route was miles long, a round trip would have taken a full hour *without* stops, and I would have been screaming to dive right out while it's moving. But we thanked her, grabbed a bunch of brochures, and I wobbled back out.

After having seen the entire trolley route later and the patch of town I would have been expected to browse around, not to mention the big long bridge over the Arkansas River, Scott and I got to thinking about the public's perception of what handicapped is. You see Hoveround and Jazzy power chair commercials, but we so rarely see people out and about in public with them that they are nearly nonexistent. And you say Oh, that person can't walk, but you never really think about their pain level or what is really going on with them, and until you've gone through some difficulty, you don't realize what a challenge all this stuff is. So it's interesting learning how to gracefully handle letting people know my limits (which are much more severe than your regular wheelchair idea of simply not being ambulatory), and how to maneuver around my limitations without winding up just laying on a sidewalk and letting people step over me. When my disability case does go through, even if I have the chance, I doubt we'd get an electronic wheelchair just because they're so heavy and bulky and difficult to rearrange your whole life around, including the expense of a wheelchair accessible van and stuff. When we go out and park in handicap spaces, we try to leave the wheelchair access spaces open, because not all handicap spaces have that, although I've noticed the general public doesn't seem to be that considerate. And sometimes if I get a close spot, I don't even park in handicap because it makes no sense. Even Scott is noticing that handicap spots are sometimes further away from the destination than regular spaces, or they are lined out so that by the time you get the last one at the sidewalk, you are further from the door than if you'd parked out in the parking lot directly across from the door. So there is a severe deficit in the way the public laws understand and define handicap provisions to the public. For instance, I need a hand rail when I'm alone, so I walk along walls of buildings (if I had to carry a cane around I would be dropping it constantly, and a walker would be outright dangerous). Simply parking in a handicap spot doesn't make it easy. Being on a trolley would have been the most miserable thing I could possibly do in my condition. They aren't handicap trolleys, so you don't get dropped off at the door to anything, you have to walk the entire block to see anything or shop and then get back to the trolley, and then ride back, all in whatever weather and the least comfortable conditions and no opportunity to curl up and die quietly in a corner somewhere. I would never have survived the trolley. That idea just doesn't occur to people who have never lived with continual pain and severe fatigue. I *want* to walk, I want to do things, but I've got a time limit before I crash, and sometimes it's only 10 minutes depending on the time of day, the weather, whether I've eaten, how much I've already done, etc. And once I'm wiped out, it's over. Hard to believe I was unloading trucks and running a retail department just 5 years ago.

It was clear during this trip that I have gone really downhill since our last two trips. My tolerance and stamina level have dropped drastically. And Scott said he can tell when the pain spikes because I get so goofy and don't make sense any more. But back to the trip.

Some of you have picked up that I'm real big on the little things, right? I'm really frugal about shopping, but I'm totally against cheap. When I do shop, I know exactly what I want before I go, and I get it fast because my fatigue clock is ticking. Don't get me wrong, I love a good sale where I get like 80% off something, but I *will* pay top dollar for quality.

So you won't be surprised to hear that I paid $18 for about 5 ounces of premium loose leaf champagne oolong... Thank goodness we had the Tom-Tom to help us find this place, because it was quite a ways and over the river from our hotel, and took us through some really pretty and very hilly and windy residential and quaint old business parts, but we finally found the River City Gift Company on Kavanaugh Blvd. According to their brochure, they've been Arkansas' largest source of gourmet tea and coffee for 30 years (and now very awesomely cool gourmet chocolates and fine cigars and other neat stuff), and they've been featured in Southern Living magazine.

Now, you know Scott, he's a manly man. When he buys tea, he gets the Chinese stuff with no English on it that promises to enhance your brain and immunity and, well, your other brain (ahem), and the weirder or scarier the name or description, the better. So he bought about 6 ounces of Gunpowder tea for only $6 (I know, crack me up), and then he had to pick out his own little tea strainer ball.  The cup in this picture came from Caribou Coffee in Minnesota, a very manly combination with his manly loose leaf tea.



So anyway, champagne oolong is all the rage right now, also called 'white' tea. When it comes to your basic brands, I'm a Lipton girl for black decaf teas, Bigelow for green decaf, and I really dig Tazo 'calm', Numi 'honeybush' and Numi Monkey King jasmine green tea, Celestial Seasonings 'sleepytime', Pompadour rose hips and hibiscus, and of course I like Twinings and other stuff restaurants serve. I don't know why I'm so obsessed with tea, but I'm always reading more stuff about tea and trying new tea. I've tried so many kinds of tea (my mom was into loose leaf herbs when I was a kid, and my grandmother collected some really beautiful cup and saucer sets), some of them were pretty weird. I like Bigelow's 'Constant Comment' decaf orange spice, but lately I seem too sensitive to anything from oranges or citrus, so wah. So this direct import white tea is interesting, now I'm going to compare it to a big company white tea off the store shelf and see what I think. The older I get, the happier I am with tea companies regulating the flavor and quality for me. I once got what was supposed to be a really cool batch of loose leaf herbal tea, and it was so full of sticks and dust that it was undrinkable.

Ok, sorry about the jaunt off into tea. But you can imagine I was thrilled to get to go see this little shop first hand instead of through a magazine or internet page.

After the long morning drive and finding the hotel (near the McCain shopping mall, which I thought was ironically cool) and then finding the coffee shop, I was too tired to do more, so we stopped for supper out and then crashed at the hotel watching the new shows on SciFi. I did ok, thank goodness I took the heating pad, but next morning was able to pull off getting up and packed and going down to breakfast. But it was pretty clear I wasn't going to last much longer. Scott had wanted to go to Hot Springs again, which we visited around ten years ago, so I said let's go, and we were in Hot Springs by 10. Found a great spot to park right in front of the Arlington, where we stayed when we went down last time.



If you EVER get a chance to go to Hot Springs, you HAVE to stay in the Arlington. They are a full service hotel and boast several presidents and a whole bunch of famous people staying there, and last time I was there I got the full bathhouse spa and massage package and ate the most wonderful food in their restaurant. Unfortunately, I was pretty ill at that time, too, so I wasn't able to do much more than visit the wax museum across the street and take a carriage ride, but they have everything you need in the hotel, including a salon and shopping, plus amenities galore. This year I snatched a few info flyers off the table when I walked in, and they already have the menu out for a fabulous Thanksgiving dinner. This isn't one of those 'continental breakfast' hotels.  Unfortunately, I was already too sick to even think of checking in this year, but here is what you see when you first walk inside.
(this video is gone now, sorry)
Arlington Hotel in Hot Springs
  
 
View of the street from the Arlington's front entrance.





The reason we went over there is because Scott wanted to hang his legs in the hot springs in the park across the street....
visit to Hot Springs
  
 
Poor guy.  He had been having some severe shin splints and muscle cramping from doing hard work and was hoping that would help. It helped, all right, about burned his skin right off, and it must have done the trick because he hasn't mentioned his legs since. It's a miracle!

@ 2:30 p.m.

Thought I'd stick the time in there. I haven't sat here all this time. The Crazy Jaizzys finally overtook the Quack Attackers, and I'm hoping it holds because he's still got 3 guys playing tomorrow. This is really tense. I finished at 6-3 last week and I'm second in the league, and Scott was actually going to try to lose on purpose (he didn't try very hard) so I could wind up in the playoffs, because he doesn't stand a chance on that anyway. But the way he was ripping through points for awhile kinda looked like the fates were against me.

So back to the trip. After leg cooking, I wanted to go to Oaklawn. (Oaklawn Jockey Club - Horse Racing in Hot Springs, Arkansas ) I didn't get to go check that out last time I was there, so this time I *had* to go in, at least get a t-shirt. They are open every day of the year. Thank goodness there was a little tram running from the parking lot, but we were early and I had to sit out and wait. That horse is changed every year to resemble the year's latest derby winner.





We couldn't believe all the really old people showing up to gamble. They tottered in from every direction, most of them dressed up like they were going to a nice social function, couple of them nearly got hit crossing the street, and I'm not kidding. The screeching tires didn't phase them a bit. When it was nearly time we all queued up, and I think I was the youngest person there. Then the doors opened, and talk about stampede. Those tottering old folks ~raced~ up the steps in a flood around me while I was hanging onto the wall taking one little step at a time. Scott couldn't believe how agile they became. I mean, some of them were so frail we thought they'd fall over on the sidewalk. One really old guy was so skinny and shaking, you could tell he was starving to death and going to die gambling. I think he'd already gambled it all away and had no place else to go but into the jockey club to wander around until someone might give him food. I couldn't stop looking at him, almost felt like I was looking at a person I knew would be dead soon, and no one else around seemed to even notice him. He looked clean and neat, but could barely get across the street (one of the ones who was almost mowed down in traffic), and you could see in his eyes it was over. I don't know if he'd had much or even anything to eat in days. I felt so bad being near him, almost felt like angels were just waiting for him to fall or something so it would be over, but Scott told me not to worry about it, he made the choice to gamble it away and become like that. Scott's not a mean guy, but I think he was worried it was going to make my own day worse. Later on as we were leaving, I saw him wandering in front of the rows of screens, and no one noticing him and just waiting for him to go by and get out of the way. I told Scott I wondered if his spirit would haunt the place, and people would swear later on that they could see him still walking around. It was very sad.





By the time I made it up the steps and inside, I was hitting the 'wipe out' stage, where I blanch really white and can't keep walking and have to turn away from people seeing me while I concentrate on just staying able to stand up without doubling over in pain and gasping like a fish. There's nothing Scott can do but keep an eye on me and help keep steering me along when I'm able to move again. It took me almost ten minutes to make it from the front door to the main gambling, and by the time I got in there, all the old people were already settled in making their bets, ordering food, yapping about their stats and poring over their papers. I thought it was really cool going by the indoor paddocks where they do the final weigh and saddling and colors, except it's not in season right now, so no horses around.



Then we inched along and finally made it to the gift shop. Dang, that was at the very end of all the food courts and betting areas. Anyway, it was a very cool gift shop. They had ONE shirt left my size since it's off season, mostly just stuck with a bunch of kids' shirts. Mine was half price (awesome!) and had the Oaklawn Jockey Club logo stitched on it, so it wasn't just a screen print (super awesome!), and we found out they don't do sales online so my timing was perfect (uber ultra awesome!). And then I ran into the Trail of Painted Ponies display...  I'm not a collector, don't waste my money on pretties that no one can touch, but I fell in love immediately with Stardust, so Scott let me splurge and get it. I don't often purchase a memento of an experience or event, but I made it to Oaklawn, and Stardust is my memento.



After that I got a hot chocolate at the Pony Express grill, and Scott got their special of the day, which actually looked very good, a healthy hearty meal of beef stew over rice, steamed broccoli and carrots, and texas toast, and I was like wow, it looked like a corndog place... I guess they want people to really stick around, they feed 'em up. I've never been a gambler and could care less about even trying, but I thought if I were a couple of decades younger the Jockey Club would be an exciting place to come to work every day. But I was clearly done after the hot chocolate, and going down fast, so once we were back in the car I only wanted to come home.



It was a rough trip home, had to stop a few times because the pain was so bad and there was nothing else I could take for it, and the only relief was getting out and walking around. At one point my stomach suddenly hurt so bad I think Scott was afraid I was going to open the car door and just jump out on the highway. I think getting too tired and the spinal pain caused it, I don't know, but thank goodness for the great American kindness of free public bathrooms just about everywhere you go, because we were in the middle of nowhere and just happened on a tiny little store right about then. As I was walking out, a woman a few years older than me limped in on crutches, and I was pretty sure she has MS. Sometimes I wonder how close I might be to that extent of disability, but all these years they've never found any lesions anywhere in my brain or nervous system indicating damage (my doctor checked me for MS in my 20's, and I get regular MRIs on my brain, and I have a neurologist and neuropsychologist), so we have no idea if this, whatever is going on, is progressing or just a rough spell I'm going through. I'm wondering if I'm going down the CNS lupus road, but I've been wondering that for 20 years and I'm still functioning, so I guess it's a mystery. So anyway, we piddled VERY slowly around a couple of different Walmarts, picked up a few groceries to come home with, stopped for supper in Branson. THAT was just about a mistake. We forgot it was Saturday, and they're in full swing with their Christmas shows. The lights were really cool, though. Most of the pictures smeared to badly to see the Christmas lights, but I got this, whee.





The main strip was packed with cars crawling through, the restaurants were packed with busloads of older folks. Scott wanted to eat at Montana Mike's, and by the time we made it there I was nearly an unresponsive zombie screaming inside for a coma, but oddly, we got 'our' table in ten minutes flat after being told we had a 30 minute wait (we'd been there once before). We wound up with probably the best waiter we've ever had, and I was able to get a bit of a pill down and revive a little. It got weird when some woman came by and wanted to take our picture, but I forked over the $8 for the cute little keychain she made out of it. I'm really in no position to be fussy about that kind of stuff. How often do I even get out and have fun? I have proof on my keys now that Scott and I had a good weekend out, as the dead silver fox hanging on the wall above our heads in the picture can attest. I thought that was a strange omen, since we lost the duck to a fox last month, but the meal went so well it was almost like synchronicity, and I just went with it.



So today has been nice. I'm glad I got home to my own bed before it all got worse, and I made fish and chips for lunch (my chips are fried up with onions, mmmmm), and the laundry is nearly all done and I made punkin pie... And I'm cuddled in my fuzzy robe while Scott runs in and out doing stuff. Buncha birdies in the feeder, chickens are happy we're back. And football. Lotsa football. Hope I crunch the Quack Attackers.


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