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Mulitple sclerosis meets smoothies

Keith Richards impression

I don’t actually have moves like Jagger. It would be cool if I did, but I don’t. About the only way someone could say I moved like Jagger was if that someone happened to be drunk and listening to Brown Sugar while they watched me try to recover from a near fall. In such a case, I would proudly own my Jagger-esque move.

Honestly, I only mention the Rolling Stones frontman as I am a fan of the band and try to sneak in Stones references wherever I can- see laugh lines for some classic Keith commentary. Or, check out this pic of my young nephew. While I held the camera I told him to show me his Keith Richards face and this is what he came up with. I swear the child is brilliant.

I had hoped that by improving my diet, I might improve my chances of at least having Jagger’s energy. It didn’t work. Turns out the diet for health and energy I designed, combining the wisdom of Dr. Terry Wahls and my Portuguese upbringing, had some flaws. I guess when Dr. Wahls mentioned 9 servings a day of leafy greens, she wasn’t promoting 9 bowls of kale soup, 9 slices of bread, 9 pieces of pastry, and 9 glasses of wine like I assumed.

If you are totally confused, you might have MS. But see my last blog post, Kale, the New Frontier for some clarification.

This eating healthy stuff is totally confusing. Since I wasn’t able to accurately decipher Dr. Wahls’ plan, and I don’t move like Jagger, maybe I can be smooth like Montel. My sister Laurie told me that Montel’s plan involves smoothies. I love smoothies! Especially the kind with peanut butter cups swirled in.

Oh, wait, that is actually a Blizzard and not likely endorsed by Montel. Dammit. Montel is fit, gorgeous, famous and black. 4 things I am not. Ok, maybe I can’t be smooth like Montel but I guess it wouldn’t hurt to try his eating plan.

As you know, Montel Williams is the handsome, debonair TV personality who was diagnosed with multiple sclerosis more than ten years ago. He has used his fame to show MS’er’s ways to cope with this illness. Montel believes in eating better. He says we need to start our day with veggie juice and make fruits and veggies a regular part of our day.

Do we have to? Has Montel even bothered to check if ice cream, cookies and popcorn have any essential ms fighting nutrients? What about birthday cake? Maybe that is filled with nutrition? I bet he hasn’t checked.

Birthday cake!

Montel says he has done some research and understands folk’s dread of vegetables. Here is where the smoothie idea comes in. He suggests putting leafy green veggies in the smoothie so you won’t know you are eating them. He mentions spinach and, like Dr. Wahls, also recommends kale.

I was committed but before I went out and bought a blender my mom suggested that I come over to her house and try out her fancy new appliance to see if I would even drink the stuff once it was made.

For Christmas, Laurie had given my mom the hot new juicer/blender/food processor system that due to potential legal issues I probably shouldn’t name here. For fun, let’s call it Ancient Warrior. Laurie had bought the Ancient Warrior after she saw it on an infomercial and thought it might help her eat healthy too. When she opened the box, it looked really complicated and exhausting so she gave it to my mom instead.

I made a plan with my mom to test her Ancient Warrior, and went to the grocery store where I bought spinach, blueberries, and strawberries. Next to the convenience store for bananas. Yes, the grocery store sells bananas but they weren’t ripe for the smoothie experiment so an extra trip was required.

At my mom’s house we pulled out her Ancient Warrior and set it up. Then we washed out the pitcher and all the fancy attachment thingys that came with it. Then we tried to figure out how to use it. This took a while. Especially since we were trying to figure out how to use her Ancient Warrior by reading the instruction manual for her Bose Wave Music system.

Once we realized the reason why nothing looked familiar, we went looking for the right instruction manual. Then we pulled out a colander and washed the strawberries, the blueberries and the bananas. I know most people don’t wash bananas since you are just going to peel them anyway but I am pretty anal. Do we wash the pre-washed bagged spinach? We got into a debate about that and settled the issue by washing half of it. That seemed to be the easiest way to settle the dilemma and I was starting to get tired.

Then we dried the produce. We pulled out trays of ice cubes and tried to crack them open without getting any on the floor. We picked up the ones that we missed. Next, I complained about how much work all of this was-Montel must have an assistant that makes smoothies for him. MY assistant was getting impatient so we started throwing the produce into the Ancient Warrior. We topped it off with ice and pushed all kinds of buttons.

The roaring sound gave us both a headache. We struggled with how to take the top off of the pitcher, but eventually figured that out. The smoothie was a pretty pink with specks of green swirled in. I had hoped it would look and taste like a Shamrock shake since St. Paddy’s day was coming up. It didn’t. I cautiously tried it. And it didn’t suck. Montel was right- you really couldn’t taste the spinach. It almost tasted like a regular smoothie. A big almost but it wasn’t horrible.

We used the energy it gave us to clean up the mess we made. My mom cut her fingers on the blades of the Ancient Warrior and cursed. She packed up the appliance and gave it to me to take home to make all the smoothies I want. And I will. As soon as I get enough energy to repeat the above……

Image: zirconicusso / FreeDigitalPhotos.net

When picking out ice cream flavor I would choose a vanilla base- vanilla being a type of bean. If went out to eat and was asked which side I would like with my entrée I would pick the French fries to get potatoes (a veggie after all) in with the meal. And, of course, I never held the lettuce, onion, or tomato on my burger. The pickles I would toss aside, you can only go so far on the health kick.

But for some reason all of the hard work above was not enough. Apparently I needed to take a more thorough and active stance on eating vegetables in their natural form. I have been told that they are a necessary part of the diet and eating more of them will help my health and my BMI. But as someone who has taken great pains to avoid them whenever possible, where to begin?

I like the idea of corn- well cornfields anyway. They present such a nice image of middle-America and kids with overalls and ribbons frolicking in the fields. But a super healthy cousin who has a small farm in her backyard (too weird, even for my family, a farm in Massachusetts,) informed me that corn is now the root of all evil.

  Seems, she insists, that we Americans eat too much corn and give too much of it to our livestock and that is why we are falling apart. I guess that is good news. It is only the idea of corn that I like, the actual stuff is icky.

Ok, I can handle a salad. I will go with that. But no, it turns out iceberg lettuce is really just a big clump of green water. It is not that healthy, the experts are starting to say.

I was about to give up when a friend directed me to Dr. Terry Wahls website that shows a super good-for-you eating plan, designed especially for people with multiple sclerosis. At first, it was terrifying. Dr. Wahls wants you to eat nine cups of green leafy vegetables a day! That just seemed insane and totally overwhelming.

But I was committed so I continued exploring. One of the veggies she recommends is spinach. Well, I can kind of deal with that. Especially if I use the bagged, dry spinach and load it with dressing in order to pretend it is salad. That might work for me. The wet stuff Popeye used to chug is out of the question but maybe I could accept the dry stuff.

Then Dr. Wahls said something wonderful, something I could totally work with. It turns out that kale is a green leafy full of all kinds of nutrients and good stuff! Wow, I thought only Portuguese people knew about kale.

 And I had no idea it was a vegetable! Is Dr. Wahls sure about this? I always thought kale was just a soup additive that you got from your grandmother’s house or your cousin’s yard (oh yeah, a farm, now I get it).

 This whole time it seems we Portuguese folks were already on the health track! I did some more research and it turns out that kale is the new black, meaning, it is the new super food. And since it is super good for ms’ers, it is the new orange as well. Yay!

It shouldn’t surprise me that my Portuguese friends and family were leading the way in this regard. Didn’t our Brazilian cousins discover last year’s new super food- the Acai berry? Who knows what we will discover next? Maybe the delicious Portuguese pastry trutas are the next super food? Why not? Trutas are filled with sweet potato so there you go! We Portuguese folks have now discovered three new super foods.

What about codfish cakes? The poor cod is one ugly fish but he is a fish and so maybe filled with good proteins and stuff. Hey, I bet he eats kale too so if you eat codfish cakes you might be getting protein AND a vegetable.

And then there is the wine. I don’t care what the French or the Napa Valley people say, the best wine comes from Portugal. And, research shows that red wine is really good for you. The experts suggest drinking it in moderation but I know a lot of other experts that drink it all day and they seem pretty healthy. They are pretty vocal and animated at least.

I guess my dad knew what he was doing when we visited his homeland when I was twelve and he wouldn’t let me drink American soda. “You are in Portugal and will drink wine like all the other Portuguese kids!” I thought he was being weird. Turns out, he was just worried about my health.

Encouraged and energized, I set out to start my new healthy eating plan and the world fell into place! A nice, hot bowl of kale soup filled with all things good. Vegetables- kale-who knew, potatoes, and a tiny bit of carrots to give the soup some extra color (carrots are no longer one of the best veggies and I don’t want to muck up the soup up too badly), beans-this soup just gets healthier and healthier, linguica- protein, thank you, and salt pork.

I don’t know too much about salt pork- is it a vegetable too? Even if it is not it just adds a bit flavor so how bad can it be? Red wine, some Portuguese bread- hello-grains, butter- dairy of course, codfish cakes as a side- all kinds of health benefit there, and trutas for dessert. Repeat this meal nine times a day. I love Dr. Wahl. This is going to be a cinch!

Image: worradmu / FreeDigitalPhotos.net

Image: Carlos Porto / FreeDigitalPhotos.net

Image: Sailom / FreeDigitalPhotos.net

Multiple Sclerosis Meets Spring-

It’s official- Spring is here. And I am probably the only person in the world who is not happy about it. The rest of you are lying to yourselves about how wonderful the arrival of Spring is. To me, what Spring really means (think of this in the singsong voice of Dorothy from the Wizard of Oz), “heat, and pollen and bathing suits, oh my!” None of which I am excited about.

The heat and pollen completely do me in medically speaking and only serve to make me long for the cool days of Fall and Winter when it is perfectly acceptable to curl up under a blankie with a good book and a cup of tea. Unfortunately, that cup of tea also includes a cookie or two which is why I must throw in the bathing suit part of my dread.

How do I know Spring is here? Is it the weather? Of course not. I live in New England and it was seventy degrees last week with a chance of snow for the following weekend. Is it the ridiculous looking daffodils that shot up on the sides of roads and yards as soon as one March day’s temperature hit over 40 degrees? Everyone sees the yellow and white blooms and begins to remark how lovely the flowers are, even as they sneeze and sniffle away.

“What a joyous reminder of the change of seasons we have,” say those jaded Spring loving fools.

Many can look at the daffodils and see their sappy little faces just oozing smiles and grins.

“We have sprouted and we are so beautiful,” they seem to gloat.

I just want to bring out my scissors and chop their happy little heads off. Right before I run to the store to buy more tissues and allergy drugs.

Crucially important disclaimer. While I honestly admit that I want to chop off the heads of the happy little buds whenever I see them, with one hand on the Bible as I type I SWEAR that I did not actually cut the daffodils in my friend’s yard. I may enjoy fantasizing about early flower homicide but I would never actually commit such violence. My deepest sympathies go out to my friend who is still mourning her flower loss and bad season vibes to the person who committed the vandalism. May pollen forever coat your car you real flower killer.

But again, how do we in Cape Cod know when Spring finally arrives? For some maybe it is the influx of traffic on our local roads complete with construction to tie up those roads. Construction that begins right about the time everyone decides to leave their homes after a winter hibernation and get out and enjoy the unlovely air.

Is it the sounds of businesses opening or the lack of sound of complaints about the people who frequent those seasonal businesses?

No. For me what made it official that Spring is here was this- today I found a dead carpenter ant on my kitchen floor. That, like no other sign lets me know that I am in for it. This dead ant is a warning of great trouble to come. I don’t know how he died and why he chose to die in my kitchen but I can correctly assume that he has lots of friends that will come looking for him.

I am a Christian and believe that God created all things, even happy looking ridiculous daffodils that sprout too early and annoying bugs that invade my home. But why do they have to invade my home? You don’t see me going to their house and collapsing on their little ant hill floor. I know the Bible that I have just put down says that I am to care for all creatures and feed them when they are hungry.

Ok, I am good with that. Hey ants, tell me what food you like best and I will deliver it. Brownies? Sure, I will surround a trail around your little ant hill. Chips? Absolutely. Barbecue, sour cream and onion or just plain? 

Are you healthy bugs?  I have a ton of veggies lying around I am supposed to be eating but would be happy to share with you-outside.  Spilled drinks? Name your favorite-lemonade, Kool-aid, oj, milk- whatever and I will pour it all over my yard. Whatever you want just stay out of my home, at least until you help pay the rent.

The Bible also says you must shelter those who are homeless. Fine, I will build you little bug shelters around my yard, hey even around the daffodils that an old tenant planted, giving you a nice happy view. I just don’t want to throw you a party in my living room. I have enough trouble walking without tripping. Worrying about stepping on you dead or alive is just too much trouble. You gross me out and, like the flowers, remind me that my least favorite season is here.

After I try to get rid of you I will need to pull out my AC and fans, dust the pollen from everywhere daily, do errands first thing in the morning to avoid crowds and in complete terror try on my bathing suit in case I ever happen to get enough energy to actually hit the beach.

Ahhh, the beach. The colors of the water are especially gorgeous right now. And, since it isn’t that hot yet and the mosquitoes and green heads haven’t arrived, maybe I can actually enjoy hanging on the beach for a bit before the real humidity sets in. And hey, since my MS feet have gotten used to the “sand in my toes” tingly symptom, maybe I can actually walk on the beach and get some exercise.

Ok, so maybe there are one or two perks to this least favorite season of mine. Dead bugs and overly zealous flowers are not among them however. Quick, find me some bugspray and garden clippers and let’s get through it.

 Photos by Barbara Eppich Struna

http://barbarastruna.blogspot.com

There is bird poop on the outside of my storm door. A big white clump of bird poop. It has been there for weeks, maybe months. I can’t accurately pinpoint the date because I first noticed it after having been out of town for a month. After the flight home, my friend dropped my exhausted self off at my front door. It was late, dark and cold and I noticed nothing except how comfy my bed would be once the heat kicked in.

The next morning I forced myself out of bed very early, meaning before 10:30. My goal was to hit the post office before it closed at 11. It was a Saturday and I had convinced myself that I needed to spend the weekend going over all the mail that had accumulated while I was gone. So I threw on jeans and a large coat to cover my pajama top and headed out the door. I had no idea where in my flung on the floor suitcase was my toothbrush or hairbrush. I just knew that I was back from vacation- must get mail.

Opening the door to the sunny morning, I noticed the poop. Mostly I was fascinated at how it got there- that bird had some amazing aim. It was directly at eye level with anyone coming in the door. “That is gross,” I thought. “When I get back I will take care of that right away.”

At the post office I was handed a huge stack of mail and some random packages. The postmaster had to give me a box to cart all my treasures back home. On my way I realized I was hungry and of course, I didn’t have any groceries. First, to the coffee shop for some tea and a bagel, then to the market for some basic supplies. All the while praying no one I knew would spot me running errands with un-brushed hair, un-brushed teeth and a pajama top under my coat.

After pulling into my driveway I began to cart everything inside when I again noticed the offending poop. “Damn, I have to take care of that. Let me put the perishables away first and then I will take care of that mess.”

But after putting away the milk, I realized my tea was getting cold. And the mail looked interesting. After sorting through the mail, my teeth felt really icky and it was time to attack my suitcase to at least find the immediately needed items. Then I took a shower. And after that, I was exhausted. The poop was long since forgotten.

On Sunday I woke slightly more refreshed, showered and headed to Church. Damn, there was that poop again. “As soon as I get back from Church, that will be gone.”

The poop was almost forgotten as I confessed my sins and gave thanks to God for all beings and things, including the being that had crapped on my door. Pulling into my driveway my thoughts were on the laundry that should be done and how tired I was again and I just plain decided to ignore the poop.

Though it was always in the back of my mind, needing to be taken care of, I only actually made a plan to clean it when I was coming and going. Returning home one day, I did start to grab paper towels and glass cleaner with a definite mindset to attack the annoying evidence of a visit from a feathered friend. But before I began I noticed how dirty the whole door frame was. And there was some poop not only on the outside door but the shingles surrounding the door as well. The inside of the frame also needed to be swept and cleaned and it was cold out, heat was escaping. Suddenly I was very tired and it seemed a big a job to tackle right now. I will put it on my list.

These are how my days go. I used to have a kitchen table but it has become buried somewhere under all of my lists. Before we left on the trip I had lists of things I needed to get done before traveling, lists of things I should try to do while we were away, and the list of things I should so as soon as we got back. Ok, I will write ‘clean up bird poop’ down on the ‘as soon as I get back list’ even though I had now been back for five days.

I have lists of things I need to do to get healthy, lists of things I need to do once I am healthy, lists of things I should do to further my writing career, and lists of things I should do to try to get my financial house (or lack of a financial house) in order. Then there are the lists of things people say I should list-my symptoms, my drugs, my doctor’s appointments, things I should read that would be helpful and things that I should do to feel better. I have to have a list to keep track of my lists.

“It is all part of keeping yourself organized as you figure out what works for you,” the experts say. I say it is just easier to ignore the lists, crawl into bed and pull the covers over my head. Yet the lists keep growing and keeping track of them continues to be a project

Oh, the small joy when I can cross something off the list, or even, bliss when I have so much of one list done that it is more efficient to crumple up that list and start a new, smaller one. That happiness lasts for only a short time as that list continues to grow. The lists and the items on them are like rodents as they multiply unreasonably.

People are always telling me to write things down and I don’t see how that is helpful if the things I write down one day are buried under the things that I wrote down two or three days ago. I once tried to keep all of my lists in one list book but flipping through the pages of the book for the particular list I was looking for became depressing. I would have to pass the other lists that I hadn’t even started.

But, again, I digress. The bird poop is the real problem and it is bugging me. Right now, I swear, I will clean it up. Unless it has now frozen, then it will be a real chore. Maybe it is better to add it to my ‘things I want to do when I do my spring cleaning list.” Or, maybe not. It is really obnoxious. I am going to get to it right now! Except I now realize that I am out of paper towels and glass cleaner. Where is that darn grocery shopping list???

Image: digitalart / FreeDigitalPhotos.net

Image: Tina Phillips / FreeDigitalPhotos.net

It was Elmo that finally did me in.   Yes, Elmo, as in Tickle Me.  But maybe that is not fair.  While he was the catalyst, it was really his helpful, female puppet friend Betty Lou that was the root of my actual demise.

It didn’t help that I came late to the magic and wonders of Sesame Street.  Growing up in the early seventies, public television was a somewhat radical concept and the new children’s programming seemed to threaten subversive and counter-culture undertones in my mom’s mind.   The Brady Bunch and The Flintstones were much healthier- nice, safe family values.

As I grew out of my toddler years her television concerns continued.   The Partridge Family was NOT ok.   The fact that Mrs. Partridge was traveling around the country in a bus and allowing her children to perform rock concerts in front of out of control teens was EXACTLY what was wrong with the country.  At least that’s what my mom always said.

By the time she became a grandmother she relented somewhat and relaxed her television rules.   I would watch Sesame Street with my four year old nephew and we enjoyed it immensely.    I remember rolling around on the floor laughing and crying after a recent breakup with some guy or another while Patti Labelle sang “How I Miss my X” to a very sad looking X.   I thought the scene was adorable and was speaking directly to my heartbreaking soul.

“Drew-don’t you get it?   Her ex is the letter X!   Isn’t that a riot?  And look, X misses her too.  They’ll get back together- I just know they will.”

My nephew looked at me as though I was nuts and ran off to play with his toy fire engine.

Anyway, back to modern day.   I was in the midst of a horrible month filled with paperwork, appointments, highs, lows, good news, bad news, good advice, bad advice and whatever else one can throw into a month.   After a frustrating breakdown during appointment number six, it was recommended that I see a therapist.

Thus it was that I was at appointment number seven in the lobby of the one therapist that took my insurance and answered the phone when I called.  Much to her dismay as it was her lunch hour, I was an hour and ten minutes early.   No, I hadn’t bothered to check what time I was due there.  My MS brain knew the time.

While she handed me more paperwork to fill out I asked about her practice.

“No,” she told me, “I don’t exclusively treat children.”   It was hard to believe based on the emotion charts, animal posters, blocks, and teddy bears that sat in her waiting room.

I started the paperwork while I listened to her pack up the hundreds of Legos I noticed on the floor of her office when she opened the door to greet me.    My mind continued to swirl with all that had piled up that month and of all the things I had to do.  But it was my fault I was early (apparently my MS brain knew something that her planner and my calendar did not).  And so, with this round of paperwork done, I grabbed the thing closest to me to read.

It was a book from a Sesame Street series called Sesame Street Library.   In it, loveable Elmo ventures into the library looking for a Little Black Puppy.   As he searches he gets distracted from his important task by story hour.   I do that all the time.   Could Elmo have MS too?

He meets his buddy Betty Lou and, when asked, remembers his mission.  Betty Lou offers to help.   She givse him all library info he could possibly need and then produces a book called, you guessed it, Little Black Puppy.  Poor Elmo has been misunderstood.  I can relate to that too.  More evidence our furry red friend might be afflicted with a myelin damaging illness.

He explains his plight again.  He is looking for an actual puppy that is missing and happens to be black and little.  Again, the kind Betty Lou wants to help.  Back to the card catalog they go and then to the stacks where she produces a book called “How to be a Detective.”

“There Elmo, you can read this book and then you will know how to find your puppy.”

It doesn’t end there.  Betty Lou is a dear friend after all and really, really wants to help so she proceeds to find several other detective books to help Elmo in his search.   Elmo excitedly thanks her.   That’s when I lost it.  In the lobby of therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceed to yell at Betty Lou.

“Betty Lou that is NOT helpful!!!!!  What kind of friend are you?  I know you mean well but if you really want to help, start looking for the damn dog!   How long do you think it will take Elmo to read all those books before the search begins?   After reading the books he will have get the detective kit and then start questioning people and calling insurance companies and hitting search engines and all kinds of crap that take time he doesn’t have.   Can’t you just help look in corners and yell ‘here Fido’ or something?  How bout you read the damn books and then get back to him?”

Poor Betty Lou.  Perhaps she didn’t deserve my wrath but she was not alone.  Elmo was next on my “need a good talking too” list.

“Elmo, don’t be a putz!  Tell Betty Lou what she can do with her freaking books and where to go.   Don’t stand there with that stupid smile expressing all kinds of false gratitude.   Throw the books at her and start looking for the dog.”

I suppose the moral of the story was that you can find anything in a library.   But I have yet to find a dog there and in my current state, and not being a kid, the message was lost on me.

Perhaps my outburst caused the therapist concern.  She called me in and handed me ten more pages of paperwork to take home and fill out at my leisure.  She asked me what I was looking for, therapeutically speaking.  Then she told me where I could research the answers to what I was looking for.  She recommended some books.  I smiled and expressed all kinds of false gratitude, just like Elmo.

I am even more convinced than ever that MS has got him too.

Image: sheelamohan / FreeDigitalPhotos.net

Stupid Scout!

Warning- this most recent blog post is written just days after returning from a month-long family vacation where the main travelers were two sisters with MS and their mom.

It is absolutely not politically correct to call someone with multiple sclerosis, stupid. It is not even ok to call yourself stupid if you have MS and you act stupid sometimes due to cognitive difficulties. It’s like how it is not politically correct for me to call myself a ‘portugee’ even if I am Portuguese and I am saying the slang term affectionately. My poor aunts are cringing and desperately shaking their heads as they read this paragraph.

So it is completely inappropriate to say that MS makes me stupid. It is far better to say that MS itself, is stupid.

Stupid MS- think of this title as in- stupid airline that was short-staffed and made everyone stand in line forever in a hot, super crowded ticket gate and had lines too long to wait in to get fancy pre-boarding status for those with disabilities.

Or,

Stupid Bed- as in stupid wooden bed frame where my crawling great nephew cracked open his tiny chin. In the bed case, he and I stood by the bed and repeatedly beat the mattress with our fists over and over again yelling “stupid bed”, (once the bleeding and screaming had stopped of course.)

Or,

Stupid Scout-as in, stupid stuffed dog with a computer chip in him that allows the baby to push on one of the dogs various extremities for lullabies, learning numbers and letters and spoken sentiments of love for the baby himself, by name even! What chance does an extra soft, fuzzy, stuffed blue bunny bought by a loving aunt stand against a dog that can say the baby’s name. Stupid Scout!

How about,

Stupid Local Police Dept-as in the substation of the police department in the town you are staying in that actually closes on Martin Luther King Day. Since they are not open to correct you when you stop in to ask for information on the exit ramps, you wind up giving your friend wrong directions, causing her to drive the opposite way from where you are for over 30 minutes. Stupid police substation!

Stupid police sub-station!

Then there is the,

Stupid car rental place-as in the silly car rental agency that requires you to produce a driver’s license to drive one of its cars when you forgot your license as you were so proud to think of how much easier traveling would be if you used your passport for identification, no more constantly pulling the little card out of your wallet- the passport is so much better. Until you try to pull the little card out of your wallet at the rental agency and remember you left it home because you were being so smart.

We can all likely agree on the,

Stupid RMV- as in the absurdity of why the Department of Motor Vehicles will not give you a new license the same day you request it, causing one of the party to travel with a paper copy of her license that expires only days after arriving. This then causes the least likely person in the group to be designated driver and all of the party to worry about the expired paper license member being held at security on the return trip. Since we are visiting a state near a pretty active border, we worry about her being held in federal prison for days until the stupid RMV can get her a new license.

But the worst has to be the,

Stupid car- as in a fancy car rental that has a ridiculous key-less entry system. What is with that? You still have to carry around a key chain as it contains the new age computer chip called a fob that actually sparks the car to turn on when you push the fancy key-less entry button. And you still have to make sure that the key chain without a key is near the button which happens to be right near where the hole would be where you actually would put a key. Luckily you don’t have to put the key in the hole as you have key-less entry.

The stupid car can lead to a problem with the,

Stupid Brake Sign- as in the stupid car highlighting a brake sign as you push the key-less entry button over and over again. You have the key chain near the key-less entry button and you push and push but the car doesn’t start. Your sister is behind the wheel and she begins to think maybe the brake sign means something. So she does the first smart thing her MS brain comes up with and pushes the emergency brake down. The car rolls down the driveway. Neighbors come to help. Your sister lets ups on the emergency brake and the car rolls further into the street. She is fiddling with the emergency brake constantly and the key-less entry rental car is not starting.

 You decide this is not worth the effort and call the car’s Stupid Roadside Assistance and insist that they come get this stupid car. They explain that your sister has been messing with the wrong brake. You must step on the car’s main brake while you hit the key-less entry start button while making sure the key-less entry key ring is near it.

It all hits home with the,

Stupid Nephew who is also the father of the baby and who cracks up laughing hysterically when you tell him the trouble you and your traveling companions had with starting the stupid car.

I must side with those in authority in the “protecting the rights of the disabled world” who would be upset to hear someone say they have a disability that has made them stupid. I might personally be offended to hear that as well. I am not stupid. Neither are my family and friends who are also dealing with this chronic illness.

But MS and the rest of the world is!

I am afraid of my TV.

Well, not my TV exactly but the little computerized community of wise guys that live in the Wii in my TV. They are the Mii’s and I am convinced they are out to get me.

See, it doesn’t help that the Wii and I had a dysfunctional relationship from the beginning. I had bought it used in a suspicious back alley deal with an employee of a big name electronics store that shall remain nameless, when in desperation, I begged for one when they had been sold out for months.

He took pity on my plight and offered to secretly sell me his used one as he had utilized his discount to purchase an X-box which had become cooler with his fellow teen males. He felt so bad for me that he threw in his Wii games which was kind but obsolete as I had no interest in Legend of Zelda, Dragon Ball Z, Resident Evil, or any football games. I was only interested in the Wii Fit.

Several weeks before I had gone to a friend’s house where her young daughters showed me all the cool things you could do with Wii Fit. That was of course after they put me through the trauma of making myself a pathetic little Mii and then having a computer I had never met decide how unhealthy I was.

It told me that my BMI was completely out of control and my Wii age was somewhere around 95, long past having moved to a nursing home. Once I had dealt with my trauma from that shock, and the humiliating assessment by someone else’s Wii that I needed to lose forty pounds (ok sixty according to the stupid system but is counting really necessary?), I decided that even though I didn’t agree with it, the games were kind of fun.

I enjoyed playing with the kids as I tend to be competitive and even though they had much more practice, I was getting the hang of it and would be able to beat them in no time flat! Plus, I was actually exercising.

I started the quest to get my own which was impossible as it seemed that now everyone wanted the Wii. Once the electronics store employee took pity on me, I only had to find the Wii Fit program. I searched, I begged, I even called Nintendo directly when I could not find any other employees to take sympathy on me and sell me theirs. It took weeks to track one down but I finally did. My nephew came over to help me set it up and he made me a Mii.

He made his own little Mii too who remained adorable on the screen. But once my Mii went through the body test she became a little shorter and a little chubbier than Drew had designed.

I felt for her. She was such a determined and cute little thing and would be so hard on herself when she didn’t do well. I just wanted to hug her and tell her it was ok. I wanted to take her by the hand and buy her an ice cream.

But she kept at even when the Drew Mii would whip hula hoops at her so fast they would knock her out and consistently threw his cleats and shoes at her during the soccer game. Why was the physically fit Mii so hard on my Mii? Even when she did the aerobics step game, Drew and the other Mii’s would be cruel. Every once in a while my little uncoordinated Mii would get enough steps in sync to get the word “Perfect” flashed at her.

“Perfect”, what a lovely word. The other little Mii’s would smile at her as if they were truly proud but their smiling would catch her off guard, causing her to lose step and go back to getting the dreaded “Miss” word instead. This would cause the other Mii’s to shake their heads in contempt.

It was very upsetting for her but I have to say, she was a little trooper. She would do it again and again and when she would do well her little smile and whoop of joy would inspire. And then the emotion of it all would overwhelm me.

It didn’t help that the main brain of the Wii was obnoxious. If I hadn’t turned it on in a while it would sarcastically remind me of that fact. “It is that Yvonne? Oh how nice to see you. It has been three zillion days since your last workout!” And “do you want to re-take the body test now?”

I could just hear the wicked evil little snicker in its voice. It blamed me for Drew not working out-“perhaps you are not paying enough attention to him” it had the nerve to tell me. I stood on the balance board yelling at the Wii brain that Drew moved to Arizona with his girlfriend and is probably playing X-box as we speak. So there!

The yoga girl in the Wii was very supportive, very Zen like. She would offer encouragement and concern if I seemed too wobbly. She would tell me it was ok to breathe and rest. She would remind me to try my best but not to push myself to hard. She was very relaxed and relaxing. But one day I turned on my Wii and she was gone. The guy instructor took over and said he would be working with me instead!!! What did he do to her??? Where did he put my nice girl instructor? And why? Did he hurt her? Did he give her a vacation? How come he’s the boss?”

As if this all wasn’t stressful, even the Wii Fit Board was out to get me. Whenever I stepped on it it would exclaim “Ohhhh!” which I took too mean, “you’re too heavy, get off!”

It was all too much to take. So I didn’t. I forgot about my little Mii, alone in a dangerous and scary Wii world. And I took walks instead. When it wasn’t raining of course. Or too hot, or windy, cloudy, cold, buggy, whatever. But that wasn’t working either.

The holidays had come. And with them came the carbs, sweets, alcohol and all kinds of delicious and terrifying things. Plus, I had to rescue my little Mii. I had to see if my girl yoga instructor was still around. Did the evil guy instructor destroy her? I had been too scared to check. And too scared to see what sarcastic things the Wii brain had to say when I turned her on. But I knew it was time to find out. I needed to be brave and face the Wii. I can do it. I have my adorable plucky little Mii to help me.

I turned it on. The Wii Brain told me it had been fifty-five days since my last work out. That couldn’t be right, could it? But then it told me it was nice to see me again. And there was my girl instructor- she was safe! She was back. And my little Mii was there too and looking so excited, I just had to smile and get her to start moving. I stepped on the board. This time it simply said “great!” It was time for my Wii and I to become friends again. My Wii missed me and was glad to have ME back.

NOTE-   This was written towards the end of 2010 and was published in the 2011 Winter issue of Cape Women Online.   Check out the links section for the actual article and great illustration by Sebastian Francis-Burnell.

One year later my Wii and I are still trying to resolve our differences.   For my MS friends I do recommend the Wii Fit system for help in working out, especially the Balance games that come with the system.    They do work great. The problem is you have to actually use them.  Ahh well, the year is young.

Image: Idea go / FreeDigitalPhotos.net

My nephew Daylen looks like I do when I go shopping

I can just see you rolling your eyes as you read that line. You are thinking “ok, Yvonne has finally lost it for real. Christmas is a beautiful time of year filled with love, peace and joy. It has absolutely nothing to do with the dreaded illness of Multiple Sclerosis.”

I beg to differ however. Take for example, the lights. I used to love Christmas lights of all kinds, the more, the brighter, the merrier. As I have aged I tend to prefer a simple theme in my light choices, say all white. Was this just because I am now more set in my ways? Am I just lacking in my imagination of lovely but erratic light patterns?

Who knows? But just two days ago I was driving through my hometown when I passed a house decked out five times as boldly as the Griswold’s home in the movie Christmas Vacation. Immediately my eyes began to blink, the dizziness settled like Santa on a rooftop, and my head started to swirl. Too many lights and MS both make my head spin. A brain explosion likely comes next.

Or, take the crowds. There was a time when I enjoyed the shopping. I would happily spend hours amid the other shopping folks looking for the perfect gift. New gift idea on the 23rd, no problem. Back to the mall I would easily go.

Why then in the last few years does the idea of holiday shopping make my whole body ache? The swirl in my brain begins again even thinking about it. Just the idea of the commotion brings the buzzing in whole body noise that does me in for days. Thank goodness for online shopping even for major technophobes like me. So the shipping costs add almost 50% to the purchase price, at least I can pay them in peace and quiet.

Speaking of quiet, what about the bells? The bells used to be a lovely sonorous reminder of the joyful season. They would attract the goodwill of the masses. Now when I hear bells, I run, which is an amusing sight considering I am happy when I pull off basic walking. See me running and the laughs are yours. And I don’t run because I am too cheap to throw my change in the Salvation Army kettle but because each clang of the bell throws me off.  It jars my already jarred brain even more.

The lines for everything don’t help either. At this time of year it seems no matter what you are in line for, humans who never existed are all suddenly in the same line. Need stamps? All fifty people ahead of you are giving Santa a run for his money by mailing tons packages to children all over the world. Don’t they know that’s the big guy in red’s job?

Need a quart of milk? Every shopper in the world does too along with turkeys, ham, sweets, flour, produce, wrapping paper, tape, tinsel and whatever. The masses are coming for dinner- watch out. Need gas? So does the entire planet. Christmas is coming, must have gas. I have noticed that standing brings on the body aches much quicker than simply walking. But if I walk even a foot away from the line, it triples.

So you see, the crowds, lines, lights, and to quote the Grinch, “the noise, noise, noise” of Christmas bring on many of the ill effects of MS. That is a sucky thing the holiday shares with the illness- the onslaught of symptoms.

The only way to minimize the symptoms in the season is to carve out your own special Christmas traditions. I decorate my tree (or actually asked friends to decorate my tree as the idea of carting the decorations up from the basement was just too overwhelming) with soft white lights that highlight the nativity scene in a calming way. I shop online a little at a time while playing my own favorite carols at a low volume.

When I do venture to the stores I try to plan trips when I am feeling my best, and take the shopping one shop at a time. If I don’t finish in one trip, I go home, rest and try again another day. If I hear bells then when I get to my car I turn off the radio and treasure what the sound of bells stands for in the quiet. If my brain does get buzzing, my head gets swirling and my eyesight gets blurring, I stop, and try to think only about one thing, what is really at the heart of Christmas.

If you are Christian or even if you’re not, under all the commotion the heart of Christmas should be simple peace, love and joy.

So, this leads me to the one main thing Christmas and Multiple Sclerosis have in common. As crazy and overwhelming as they both can be, where it matters most, they are what you make of them.

Have a very Merry and Healthy Christmas!

Image: digitalart / FreeDigitalPhotos.net

Like with everything else related to multiple sclerosis, it makes no sense that this disease would turn me into an Olympic worthy gymnast. It makes no sense as my whole life I have been an athletically challenged clutz. I still remember clinging for dear life to the neck of my 3rd grade gym teacher as she tried to get me to flip over the uneven bars. Those things were high! She might as well have been telling me to jump off the water tower. With my panicked cries and the limited breathing my clutching her neck was causing, she finally put me down and let me skip that exercise.

Entering into the middle grades I thought I might play basketball. My grandfather had loved that sport and really, how hard could it be? My two memories of participating were of confusing the referees and saving a crucial game in an embarrassing way.

In the former, I was on the bench where I spent most of the games when the ball came right at me. I caught it and was quite proud. It was a good catch and I thought everyone in the stands would cheer. But apparently, as I learned, catching the ball when you are not on the court is not the way to play. Fans jeered and the refs got into a debate on how to fairly resume the game.

The latter incident consisted of an exciting match-up against our arch rivals and I was actually on the court, defending an opponent. I managed to keep the high scorer from getting the ball when a throw bounced directly off my head. I was dizzy and mortified as everyone laughed, but we won. I will take credit for that win, thank you very much.

Me and the haircut

I’m not sure how far back you can go in blaming MS for your clumsiness but as I have learned to do with many things MS, I will blame MS for everything. Weird then, that through the illness I have picked up some amazing gymnastic feats. For example, I have become an excellent flipper, the 3rd grade trauma non-withstanding.

Two years before the diagnosis, my then boyfriend was visiting and wanted some ice cream. As he only wanted a little, I got a mug down from the cupboard. Everyone knows that even if you fill it to the brim, and go back for seconds and thirds, ice cream served in a mug instead of a bowl has far less calories. But the quart of cookie dough was frozen solid and I didn’t want my new love to have to wait.

I also didn’t know the trick of running the metal scooper under hot water. Nor did I believe the trick about microwaving the whole quart for a few seconds. I struggled and struggled with the scoop until I formed a perfect ball of creamy sweetness. But I couldn’t get it out of the container. I pulled and pulled and the scoop of ice scream suddenly flew out of the quart, rose several feet in the air, did three flips, and landed dead center in the waiting mug. Amazing!

That was a 9.987 for difficulty and a 9.998 for execution. Hey Dorothy Hamil, take that and the silly haircut my mom made me wear in the 70’s-ha! But no one saw it. All my date witnessed was me laughing hysterically and trying to explain the reason for the giggles while also trying to breathe.

Recently, I was putting on mascara. Quite a brave feat for some MS’ers as Laurie has stabbed herself in the eye with the wand on many occasions. I was feeling brave though so I confidently applied my make-up. Suddenly, the wand shot out of my hand, again rose three feet in the air, did three flips and then wrote out my name on my back and on my floor. 9.854 for difficulty, 9.8675 for execution.

Ok, so maybe it is a stretch to say the wand spelled out my name. But as I looked at my left shoulder blade in the mirror, the splashes of brownish/black color took the rough form of a “y” and a “v”. Where the wand landed on the floor was a circle blotch “o”. Perhaps I have to keep working on that move to get the spelling of my whole name.

There is the sport of Falling Down Gracefully Without Getting Hurt and the Dancing Rhythmically Down the Bottom Portion of a Staircase if you Miss a Step or Two, sport. The staircase event is a little dangerous and I, for one, need some work to compete in that arena. And maybe protective gear. But I have also almost perfected the Elegantly Gliding Around Your Floor When You Spill Something Slippery On It competition.

Many MS’ers do okay in the balance beam events as long as spectators realize that the balance beam is actually the ground.

How come these feats of wonder aren’t worthy of a medal? How come we are only able to compete in them when we aren’t trying to? How come we aren’t being filmed at the time or witnessed in any way when we obtain the perfect aerial feat? It really sucks when you have this talent but no one is around to view it or believes you when you describe it.

Oh yeah, I forgot, it’s MS, of course it sucks.

Have you developed any Olympic skills since being diagnosed?

Image: Idea go / FreeDigitalPhotos.net

For the most part, we are all pretty nice people who want to be kind to each other. But when you have just been told that you have a chronic, debilitating, life altering disease, you are likely not feeling so great. So when someone wants to talk to about your diagnosis you likely appreciate their sympathetic comments. And they mean well, they really do. I have been on both sides of this conversation.

I was the sympathetic person wanting to make brilliant comments of hope, comfort and advice to my newly diagnosed sister, Laurie. And then, almost ten years later and newly diagnosed myself, was on the receiving end of the well-intentioned comments of hope, comfort and advice. So I know now how these comments can often make the MS’er want to scream. (See prior posting about how the movie Scream relates to multiple sclerosis.)

And, if you have been recently diagnosed, you have the right to scream. But to keep you from screaming at people who really do want to help, I have come up with advice to the well-meaning. Here is Yvonne M. deSousa’s top ten list of things you should NEVER say to someone with MS.

10. Are you sure it’s not just all in your head?

9. That’s not MS-that’s old age.

8. You should look into that.

7. Oh, that’s nothing- I get that all the time.

6. You’re tired? I’m really tired.

5. You could die from this you know.

4. But you don’t look sick to me.

3. You can’t blame MS for everything.

2. Isn’t that what Michael J. Fox has?

1. How do you get one of those handicapped parking thingy’s anyway?

So, if well wishers are reading and disregarding my above list they should be prepared that the MS’er they are talking to might just start screaming. If they don’t scream, but they have lost all semblance of worrying about the feelings of others, here is my top ten list of what they might just blurt out in reply.

10. Are you sure it’s not just all in your head?

Of course it is all in my head! And a bit in my c-spine too. Sit down. Let me show my MRI.

9. That’s not MS-that’s old age.

So for some strange reason I have just aged thirty years in five seconds. I feel so much better now.

8. You should look into that.

Thing is, I am a little overwhelmed right now and that is about the tenth suggestion I have received just in the last hour on things to look into that might or might not be helpful How about you look into it and get back to me, okay?

7. Oh, that’s nothing- I get that all the time.

Really? Nothing? Damn, I have been shooting myself up with drugs made from Chinese hamster ovary cells for the fun of it. (Think I am making that up? Get a magnifying glass and look through it at a box of Rebif injections.)

6. You’re tired? I’m really tired.

Tired huh? Last night I started sobbing at the idea of brushing my teeth as my arm was too exhausted to lift the tube of toothpaste. Are you THAT tired?

5. You could die from this you know?

Dammit it! I thought this meant I was going to live forever. Geez!

4. But you don’t look sick to me.

That’s great news. Could you call my doctor and let him know? Maybe he got it all wrong.

3. You can’t just blame MS for everything.

Watch me!

2. Isn’t that what Michael J. Fox has?

No, this is the disease that Montel Williams has. You know, the disease where he wrote that book and said it was ok to smoke pot. Got any on you?

1. How do you get one of those handicapped parking thingy’s anyway?

You’ve got to go see my buddy Vinnie down at the RMV. He hands them out for $50 and a subscription to the beer of the month club. Here, let me give you his number.

Please don’t think us MS’ers are ungrateful. We really do appreciate the support and talking about the disease is better than not talking about it. If, after reading the above, you are at a loss as to what to say to someone with MS then please note the following;

This is one occasion where it is perfectly politically correct to use profanity. Here is a no-fail example of something that is perfectly appropriate to say to someone with MS.

“I am so sorry to hear that. That #@%$@&$ sucks!”

Image: farconville / FreeDigitalPhotos.net