Turkey Fixin’s Most Fowl

Here we go. The holiday season is about to kick off with the Thanksgiving festivities. Personally, I plan to go to the movies and maybe stop somewhere to get a turkey pita pocket  for dinner. Not too exciting but that’s my life.

But for those with MS who actually have more exciting plans, be careful about how you celebrate. I’m a big proponent of watching your diet because I think it can affect your body and trigger unpleasant side effects.

Food with too much salt i.e. appetizer cheese and crackers, sausage stuffing, or those with too much sugar i.e. pre-dinner drinks, candied yams, pumpkin pie, heck even the cranberry sauce, or those carbs i.e. that yummy stuffing, buttery dinner rolls, mac and cheese, mashed potatoes, any stuffed breads, and pasta are all minefields.

So what can you eat? The turkey, minus all the gravy you want to slather on it, cooked or raw veggies minus the sauce or dip, salad without gobs of dressing (a little goes a long way) and maybe water with fresh lemon. Reading over that last run-on sentence makes me realize I am no fun at all. But, believe me, your body will thank you for your due diligence.

However, I am willing to concede that this plan might not work. Say you’ve been invited out and your hosts have gone to all the trouble of cooking for you and there you sit with your plate looking rather bereft of food. It might make them feel bad so, to avoid offending, take a small sampling of whatever else you can eat and still adhere to common sense.

I’ll end this by saying “Remember the Pilgrims!” I doubt they or their Indian friends were left slumped by their cooking pots feeling distressed because they ate too many marshmallow-topped sweet potatoes.

If you must have an overabundance, make sure it’s of love and gratefulness.

Happy Thanksgiving!

Off the Grid? Off the Rails.

After last week’s deeply profound and unusually motivating essay, I got nuthin’ but mediocre but sensible words of wisdom this week i.e. people with MS shouldn’t live off the grid.

I like to watch shows on cable TV highlighting some wacky new way of living like “Tiny House Nation” on A & E. I can’t figure out why these folks don’t just buy an RV. Those things are small, too, and are moveable as well. Oh no, they’d rather build a shoebox then stuff themselves into it.

My newest fascination is with DIY channel’s “Building Alaska.” My husband likes to watch that show, and I got interested in it by default. It was either watch the show with him or find someone who would come to the house and play chess. Which would be nobody.

The premise of the show is that people find and buy land in the most remote Alaskan area in order to live “off the grid.” I, personally, don’t get it. Why would anyone want to try and build on sites so far from civilization? It takes specialized equipment to first get the supplies there, then the elements will do all they can to make human lives crazy with causing one delay after another.

Don’t even get me started on the wildlife whose homeland they’re invading. I’ve only seen one episode where the builder was savvy enough to have the doors into the building open out rather than in. Why? Because if a bear moseys up to your home and wants to stay for supper, the door couldn’t be broken inwards for easier entry. Geez.

Another thing: These homes are also built, they say, for friends and family to come and visit. Really? Who would travel miles by boat or plane then hike or snowmobile to get to you just to roast some wieners over a campfire? Not me. I would decline the invite and be busy that day and every other day.

So, all in all, I don’t think off the grid living is for most folks. And those of us with chronic problems need to be living in society where help (and food) is readily available. And furthermore, if you’re like me, you couldn’t outrun a bear anyway. Stay safe in your own cozy space, eat a Hot Pocket and watch Jeopardy! …… .Grids are good.

 

“Never give in….”

Actually, Winston Churchill’s famous quote is “Never give in..never, never, never, never..” It was part of a 20 minute speech he gave in October of 1941 at his former school, Harrow, just outside London, England.

The war in Europe was just beginning and a prescient Churchill knew what the Brit’s were going to be faced with in dealing with Hitler and his Nazi army. It was sound advice and one MSer’s should also take to heart.

Let’s face it. There are some days when it would be so easy to give in. But let’s think for a minute what that would ultimately do to us.

Scenario #1: I think I’ll give up today. No more watching my diet or exercising. I’ll give up on my medicine and do nothing to help myself.

Scenario #2: I think I’ll give up today. Give me something to smash and I’ll feel so much better. It’s as good a therapy as anything else I’ve tried.

Scenario #3: I think I’ll give up today. I’ll snap anybody’s head off who gives me an encouraging word. What do they know, anyway?

Results? You will become a lazy, fat, foolish person, probably with no cash because you’ll have to replace stuff, and ending up lonely because no one wants to be around a psychotically nasty person.

Scenario #4: Become a stiff upper lip Brit – and no, let’s not all move to England – but let’s not give in – only if we “give in to convictions of honour and good sense.”

Since we are not facing a World War at our doorstep, possibly we don’t need to channel moments of honor just yet, but we should be possessors of good sense. Good sense to treat our bodies right and that includes our brains and thoughts. We have before us a personal challenge. We should be ready to meet it.

So…never, never, never, never give in or give up. Eventually, research and a cure will prevail.

six..seven..eight — good job!

Why is it that gym instructors use the rep count of eight when torturing their clients? And why would they assume you did a good job when you’re still huffing and puffing  on #3? My take on that last question is that those words are supposed to make you feel energized – right up until you fall dead on the floor in front of them.

OK, I’m exaggerating a bit there, but practical exercise is definitely recommended for MS patients. The key would be not to overdo it. All things in moderation. No pain no gain is absolutely wrong for us. Probably it is for everyone.

Early in my treatment, I really made an effort to exercise on a regular basis. Then I slowly tapered off. That was a mistake. I used to feel awful because, of course, I was overheating myself and causing my symptoms to flare up. I became frightened I was doing more harm than good. I was in error. Lack of exercise can be a problem, too.

I now do chair exercises, and I stop when my body tells me to. My MS doctor recommended the MS Gym website.   http://www.themsgym.com   Sometimes I just watch folks on regular online aerobic sites doing impossibly vigorous stuff. I figure there’s a chance I can get fit through osmosis.

Seriously, one path to good health is to keep moving – doing any exercise you can to keep fit. Also, keep moving away from that Halloween candy stash – therein lies the divergent path to disaster. Trick or treat? The trick would be on us.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Sword of Damocles

Throughout my years in dealing with MS, I’ve lived with the anxiety of “What’s next?” Fear of exacerbations is always like waiting for the other shoe to drop – what will MS affect now?  Just when you think nothing worse can happen – bam! Your thinking is unfortunately corrected. Which leads me to my friend Damocles. (pronounced Dam-o-cleese)

As a history buff, I am reminded of Roman citizen Cicero’s 45 BC story of King Dionysius, a nasty ruler of 3rd century BC Syracuse (then a Greek city in Sicily) with lots of enemies and constantly in fear of assassination  He traded places with a flattering courtier called Damocles. This fellow was always telling the king how lucky his majesty was because of all the riches and power that came with the job.

Cicero’s story has Dionysius trading places with Damocles for a day. At first Damocles thought his situation was great. That is, until he looked up from the king’s throne to see that Dionysius had positioned a very sharp sword hung by a horsehair over Damocles’ chair. He wanted to show him how precarious power is and that his life was not all thick steaks and red wine.

From that point, Damocles could never stop thinking about what might happen to him. All his glee at finding what he thought was a lap of luxury vanished in moments. Damocles quickly traded back with King Dionysius and once more assumed his courtier role-only this time, I bet he kept his fawning mouth shut.

How does this story relate to MS? Well, we MSers have a figurative sword hanging over us every day. We may not be in a kingdom with power or afraid someone will try to bump us off, but we try to be masters of our own little kingdoms and MS is always waiting in the wings to mess with our rule.

On a lighter note, which has nothing to do with anything, our popular phrase meaning imminent danger is “hanging by a thread.” Guess where that idea came from?  Marcus Tullius Cicero was one sharp wordsmith and storyteller. He also came up with the phrase “Politicians are not born, they are excreted.” I wonder what the pols in old Rome thought of that turn of phrase?

Lost and Found

MS has caused lots of upheavals in my life. Here are a few things I’ve lost and found:

Lost – mobility (wheelchair dependent); clapping (my weak left arm prevents this); driving (ditto left arm-prevents me from using assistive driving controls); shoe hoarding (too bad, really) independence (obviously) and, maybe not so importantly, ability to put on earrings.

But, conversely, here’s what I’ve found: empathy (I am so much more in tune with folks who struggle); patience (I’ve got tons of it now); I’ve learned to slow down (time to smell those roses); blogging (taught myself, thanks for reading this); read lots more books (time to enjoy that again); and last but certainly not least – we get to park nearer to the stores now!

I want to say a word about gaining patience. MS has actually caused me to develop the patience gene. Who would have thought? Just today Husband took me to the dentist for a dental cap fitting. The office gal told us it would take about an hour. So I sent Bill off to do a 20-minute errand. Well, I was done in 15 minutes. I didn’t see him back for an hour. Not his fault. He thought he had time so he did extra stuff. I was left to ponder the cosmos in the office waiting room for 45 minutes.

The point? The old me would have impatiently chomped at the bit. When he returned, I would have querulously demanded to know why he was so late. Instead, I was the picture of calm. I am so accustomed now for everything to take longer. that a 45-minute wait is no big deal.

Why didn’t I just use a cell phone to either contact him or amuse myself with cat videos? I couldn’t. I don’t own one. You must understand. I am the product of the 1960s. Rebellion against social trends is in my blood, Yes, I’m out of step in more ways than one. But still, I have more patience than most with minor annoyances. Lucky me. I think.

 

The Great Mull-dini

Because of my pronounced reduction in physical capabilities, I have become an authority on mulling things over. I sit most days and ponder. There is never any shortage of things to think about.

My most recent thought-provoking quandary is what would I do if the Chinese, with their million-man army, decide to invade New England where I live. This is not as far fetched as you might think.

I was watching TV the other day and the reporter was telling us about China’s willingness to funnel millions into the hurricane-ravaged Caribbean islands. This would mean a scary presence of money and personnel just 50 miles off the American shore. I learned the Chinese have been gaining footholds all over the globe. And here was one more opportunity. My mind started whirling and my mulling ramped into high gear.

A few years back, I found a survivalist website run by a former army-trained doom-and-gloom-er. I know I should probably have moved on but I was fascinated – much like a snake,  I was caught in the charmer’s prepper music.

The site gave instructions on what to do if various scenarios presented themselves – war, famine, pandemics, natural disasters. You know, all the happy circumstances of humankind’s annihilation. A lot of it was mostly commonsense – go to a remote location with your hoarded food, guns and ammo. And yes, take your loved ones, too.

The part I remembered and mulled over now was how to help the disabled. Basically, if they were hospitalized, kiss them goodbye and run for the hills. If your loved ones are fairly mobile, don’t waste time but load them up along with your dry milk stash and motor, not run, for the hills.

Facing a possible new Red Dawn dustup, only with Chinese soldiers instead of the Russians (remember that movie?), I am thinking that the government shouldn’t be so fixated with disarming the public. They may need us.

Anyway, I’m thinking of assembling my go-bag, just like I did at the turn of the new millennium when we thought we would all fall into chaos if our computers failed. I’ll keep my van gassed up and my provisions at the ready. I’ll also purchase a Rosetta Stone Learn Chinese in 12 Easy Lessons….just in case.

Smiling Faces

I’m reminded of a song sung by the Temptations. It had lyrics that included the phrase “Smiling faces, smiling faces, tell lies; They don’t tell the truth…”  Sounds pretty cynical, doesn’t it? That was in the 1960s. We’re SO much less grumpy now.(???)

My referencing this song leads me to this conundrum: I receive a very informative MS magazine every other month or so. It contains interesting articles about people/families coping with this unrelenting disease. There are also updates pertaining to new research and treatments.  So what’s the problem, you say?

Their smiling faces.

The darn mag is chock full of them. They’re on every page…including and especially the ads.  Happy MS folks riding bicycles, playing with the kids, traveling all over. Always smiling.

Now, I am a fairly upbeat person most of the time. But I just want to see the truth on one person’s face…just once. I get that folks with MS don’t  necessarily want to see unhappy faces, but it would be nice to see a miserable face.

I was commenting once on this fact while reading an issue. Imagine my surprise when in the next one I found a letter to the editor bemoaning the fact of hidden reality. This lady took issue with potential travel problems MS people have, and that it was not as easy as just overcoming the natural reluctance to sally forth.

For example, calling ahead to lodging establishments about handicap facilities wasn’t always enough. Her husband used a Hoyer lift and they didn’t think to ask if the bed in the room was on a platform. It was. They couldn’t use the lift because the lift’s balancing extensions needed to go underneath the bed. Her husband spent the night pretzeled on the room’s sofa.

As a personal aside, I have found that calling ahead to find out if a restaurant or any other venue is accessible is not the same thing as asking if a place is wheelchair accessible. Believe me, if you’re in one, you’d better make that query perfectly clear.

Back to my cranky complaint, MS will sometimes wipe the smile off faces. I guess I just want some public acknowledgement of that fact. Anyway, I once read that wild animals see teeth in other animals and instantly assume defensive postures. To them it’s fighting words. I guess it could happen to some humans, too.

 

 

Take Me Out to the Ballgame

Veni Vidi Vici…or for those among us not Latin fluent..I came..I saw..I conquered!!

Yes, it’s true. One CAN travel by train to the Big Apple and see a major league baseball game in a wheelchair. And have hot dogs, beer, and peanuts! All that and the Yamkees won.

Boarding the train in New Haven wasn’t as fearsome as I had anticipated. We checked in with a security person at the terminal. She advised us what track we needed and where the elevator was for us to get to the platform. She also radioed in to the conductor for that train and advised I needed assistance to board.

Once the train came in and my fellow travelers boarded, the conductor obtained, from inside the train, a small metal ramp. The ramp bridged the gap between the platform and train. I wheeled inside to a wheelchair-accessible spot located just by the entrance/exit door. I easily backed in and Bill pulled down a folding seat located in the same area. There are actually two wheelchair areas across from each other on each train car.

After that, it was just a question of people watching for the next two hours as riders along the route to NYC. got on. This train was going directly to the stadium which meant there were lots of Yankee attire being worn. It was so cute to see little boys and girls toting their baseball mitts with hope on their faces of maybe catching a ball at the game.

Arriving at E153rd Street, we reversed the boarding operation and exited the train via ramp. It was then a matter of using the  elevator up to a track crossover and another elevator ride down a wide walkway to the stadium. After about a ten minute walk, you then need to cross a four lane road supervised by police.There are ramp walkways to easily access the stadium and helpful personnel inside to direct us to our seats. It’s quite fascinating to watch the staff organize 47,000 plus people.

Once situated in our accessible location, it was time for the aforementioned eating/drinking goodies. During the game we saw the Yanks hit four home runs, saw outfielder Brett Gardiner and manager Aaron Boone get thrown out from the game, watched folks in the stands (plus the grounds crew) dance to the YMCA song during an inning change, and watched on the JumboTron screen while a fan proposed to his girlfriend! All in all it was a great time.

Just a quick word about bathrooms: I didn’t even try to scope out the facilities on the train. Just make sure you’re OK before you board. The stadium has accessible bathrooms.

During the 7th inning stretch when we all sang “Take Me Out…” I laughed when the crowd changed the lyrics at the end with a resounding roar…”Let me root root root for the YANKEES if they don’t win its a shame…” Nothing like hearing those 47,000 fans bellowing that word at once!

So, the game was over and we left the stadium. I was brought back to earth with a jolt when I saw SWAT officers in full gear -AR15s, vests and helmets- quietly standing on the outside stadium perimeter. If I had seen them when we first entered, I might have felt a little anxious. After all, it IS a target. Bill said there were probably plain-clothes people everywhere inside. I’m so glad I’m  oblivious to those kinds of things.

Anyway, the ride home was uneventful and we arrived tired but safely back home.  I had faced the dragon of my fear and it has been slain. What’s next to conquer, you say? Sorry, but my sword is in its sheathe. No more heroics for a while. I’m going back to being a wimp.

 

My Bucket List Revisited

I’ve been thinking about my bucket list lately. What an odd term that is. I know it refers to things to do before you die, but how did we get to use that particular expression? Am I to get a bucket and keep it handy to kick just before passing into the hereafter?

Turns out some say the phrase actually dates back to 16th century England. The word bucket had a different meaning then. It was a wooden beam used for hanging animals prior to slaughtering. The poor beasts were strung up by their feet. While in their death throes, the animals would sometimes “kick the bucket.”

Anyway, my list prior to 2000, when I had my first MS exacerbation, was pretty modest. Up to that point, I had checked off some items on it: see Grand Canyon, Las Vegas,  the Alamo, Bermuda, and London. After 2000, my world went sideways and the list got tossed. It took a few years to realize my life had not ended but a new normal had begun.

So what’s on my bucket list now? Nothing as grand as my previous trips, car rides mostly. But, I do have an upcoming a train trip to NYC to see the Yankees play the Cleveland Indians. Big deal you say? Well, I’m terrified of this adventure and have been putting off going to a big league game for years.

Here are some founded and unfounded worries about the excursion: Will I be OK getting on/off  the train in a wheelchair? Will there be bathrooms at Yankee Stadium? (huh?)Will there be hot dogs and beer to take the edge off my anxiety? (I certainly hope so!). Will a foul ball land in my lap and my mobility-impaired self will then be televised all over the place?

Don’t think that last thing couldn’t happen. I’ve already called the hair salon to fix me up before I go in the event it does. Not much I can do about hiding the wheelchair, unfortunately.

In conclusion; my list has devolved into doing stuff everyone else takes for granted as easy-peasy. Gone are thoughts of climbing Machu Picchu or of stomping grapes in Tuscany. That’s all right, though. There’s probably not much to see there anyway.