This post is a desperate attempt to rip myself away from twitter on my phone. I've been up since 2 a.m., thank you solumedrol, and now I need to pull all my focus into getting out my door in a couple hours for an appointment with a nutritionist, which cracks me up. Gonna be fun meal planning around nut/peanut (includes mangos bcuz in the pistachio family), all citrus (pervades all things that taste good, avoid 'natural flavors' that spike flavor in prepackaged foods including salad dressings, sauces, and condiments), the bananas-avocado-potatoes trio because of latex, and now wheat. Which I'm really not supposed to be eating anyway because I'm controlling my diabetes without meds, and wheat in everything spikes glucose as badly as sugar does. I'm looking forward to a very interesting meetup, and it had better be for $84, because insurance isn't paying for this one. I figure I need the moral support right now, though.
Since my parents didn't believe in doctors and I was so terribly aspie (failing to communicate well) through most of my adulthood, it took a really long time for me and my medical team to figure out I'd been living with food reaction induced asthma for several years. I lived on cough drops for a decade before I got an inhaler, and then lived on advair for 9 months before it dawned on anyone I might be having deeper issues. When I finally found out I'm diabetic and changed my diet, a lot of that went away because I was severely curbing the carbs, and I discovered a carb rich diet was also causing other problems like IBS and bad headaches. Lost 50 pounds and started feeling a whole lot better.
Then the airway problems ramped up. Cashews were first, and it was nasty. I'd been eating cashews for years, so that was a big surprise. I was already suspicious of peanuts and had stopped eating anything with peanut butter because I was tired of the itching, but that blew up along with the cashews, and now I can't even touch something else that has touched something with peanut in it without itching and actual swelling. I purged my house. Then came the lemon. I'd already cut out orange juice for severe heartburn and limeades because my mouth went numby and tickly, but I love everything lemon. When that finally scared me with airway, I was almost devastated to give up lemon juice sqeezed on crabcakes and the rare piece of lemon pie, my fave dessert in the whole world. It's terribly difficult to purge citrus. Lemon isn't legally bound to be listed as an allergen and can get away hiding in ingredient lists in the form of 'natural flavor' in everything from salad dressings to condiments and sauces. I started making my own salad dressing. I was thrilled to find Annie's condiments and dressings, I can finally eat ketchup again without a reaction. Click this pic to go the to Annie's site. It's my way of saying thank you to them for helping me enjoy eating with all this going on.
So. Now it's wheat. This is my second round of steroids in 2 weeks and I got the rash this time along with the itchy tongue and croup. My allergist told me last year to take 2 zyrtecs twice a day and eat anything I want, and if I have a reaction then throw in some pepcid and claritin, crank benadryl round the clock for a couple days, and if I decide I can't live with the reactions, go in for steroids. Well, besides no one being able to live on that much zyrtec (my regular doctor pulled me off it after 3 weeks because I was such a zombie he was afraid I'd have a traffic accident), it's actually kind of dangerous to just keep putting your body through continual autoimmune reactions. And dumb. And sucky. Very, very sucky. No food on this planet is worth the suck I've gone through.
Let's put this into perspective, for those of you without food allergies. I can't walk into a bar without risking my life thanx to nuts and citrus. I can't eat anything out of a deli, fast food, or restaurants because of cross contamination with allergens. (Believe me, I've tried.) I can't enjoy other people's homemade goodies or potlucks no matter how diligently they try to cook for me because they don't realize how cross contaminated with allergens their kitchens already are. I check every single package before I handle what's inside or eat any of it. I'm braced for a reaction 24/7 everywhere I go because people naturally eat candies and foods and touch everything without washing it off their hands. And NOW I'm facing no birthday cake or nibbling on holiday goodies. Not even an oreo, which is peanut-free if I stick to the regular Double Stuf.
I hope you guys appreciate how much I really don't whine about this. And I hope I never ever EVER become allergic to chocolate and dairy because Hiland chocolate milk and packaged cheese is my go-to on the road.
Ok, those thoughts are organized and pushed out of the way now, time to wash my hair and get ready for the nutrition counseling.
We’re *all* terminal in the end. I’m a ‘slow’ terminal. I’ve already lost a niece who was born terminal but lived to 20, in spite of all medical odds. So define terminal here. I was diagnosed 20 years ago, I’m lucky I’m still alive, and I get up and face every day with progressing neurological deficit and severe pain througout my body. So someone is asking, what would I do if I found out I’m terminal. Well, if a doctor told YOU that you would be completely crippled and blind in less than 20 years if you were *lucky* and didn’t go into organ failure first, what would YOU do? I went to college and got my degree. I went on to grad school. I raised a child as a single parent and then remarried and helped raise another child. Every day I prayed that I would live long enough to see my children grown up. Every day I did laundry, made meals, and somehow made it through my day. Recently, just this last winter, I faced that I might die from liver involvement. But here I am, I’m still doing laundry and making meals. Slowly, with lots of rest. What did I do? I faced it and kept LIVING. I didn’t ask ‘why me?’, because statistically, why not me? Everybody’s got something, right? I didn’t blame God, I didn’t hate my body, I didn’t go on big campaigns to fundraise for a cure for my disease. What did Stephen Hawking do? He helped flip the world of physics upside down. And dang, he’s still alive, too. Some of us just won’t die. Being diagnosed with a terminal disease isn’t a license to feel sorry for yourself. It’s not a ‘get out of responsibility’ card that says you are now free to smoke and drink and do whatever you want to your poor body. It’s not a sign over your head that says you get to go to the front of the line for a free meal. In fact, being diagnosed with a terminal disease is a sure bet that all your friends will fade away because they don’t know how to deal with it, and that you won’t be able to keep up with the fun stuff any more. So you take a good long look at your life, you learn everything you can about medications and nutrition and how your body works, you have a long talk with God, and you get real with the people around you. If anyone out there has recently been diagnosed with something scary, bless your heart, but take a deep breath and face it. Have a good cry, have another good cry, and keep moving ahead. Say the things you need to say to your friends and family, on a blog, whatever, and get that safety net around you. Communicate with your medical team, talk to a counselor, and don’t be afraid to ask friends and family for favors, and tell them thank you. Oddly, for those on the brink and about to step over (I’ve seen this a few times), some feel the need to reassure the ones they leave behind it’s ok, even though inside they are scared out of their wits. They can walk up to the bridge with you, but you step out alone. I think that’s what we fear most, unless we’re so sick that we’re glad it’s finally over. Live your lives. ‘Terminal’ doesn’t mean you’re done yet.
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 theRiver City Gift Companyon 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 fromCaribou 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 lupusroad, 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.
