Yvonne deSousa's Blog, page 13
April 17, 2017
Produce and Junk
If you were an earlier follower of my blog you may be familiar with my complete dislike, distrust and disuse of vegetables. Technically, I know they’re important. And so, little by little, baby step by baby step, I’ve been working on developing a better relationship with them. It’s taking years but I’m getting there. I’ve even developed a list of veggies that don’t totally suck-
Potatoes
Yucca (See how hard I’m trying-I bet you didn’t even know there was such a thing as yucca!)
Peas
Asparagus
Lettuce
Kale (Especially in a nice hearty Portuguese soup- see my prior posts- Kale, the New Frontier and Portuguese Soup with an MS Twist)
Spinach (when used as lettuce or mixed with pasta only- the whole gobbling up a full can was only something Popeye could appreciate.)
Tomatoes
Onions
Garlic
Leeks
Olives (I’m not sure that olives are a vegetable but since I don’t know what the heck they are I’m putting them here. I’ll take all the veggie credit I can get.)
Squash (Butternut AND Summer)
Sweet Potatoes
Zucchini
Then there’s the completely inedible vegetable list which includes broccoli and mushrooms.
I’m not sure that mushrooms are vegetables either. What they are is fungus. Seriously? That’s disgusting.
I tell you the above to prove that I’m trying. A friend recently told me that some grocery stores will actually take veggies and turn them into healthy spaghetti. I LOVE spaghetti and actually tried the squash version- not too horrific. I’m trying the zucchini version next. And I might even try cauliflower rice.
Why should you care about any of this? Why should I expect you to keep reading my boring produce list?
Because MS keeps messing me up when it comes to produce!
An unfortunate multiple sclerosis reality-if you have MS, you should eat a lot of vegetables. But if you live alone, and have lost some dexterity in your hands, vegetables are freaking dangerous! I just can’t cut the little suckers.
So I was thrilled when I saw a commercial for a product called a salad bowl cutter. It’s this simple thing that allows you to cut, wash and eat vegetables safely and easily. I figured this was the answer. Oh the fancy and healthy meals I would make once this was in my possession.
I added the $10.45 to my credit card and waited three weeks for this miracle worker to arrive in the mail.
And it did.
And it’s a total, ridiculous piece of junk.
First, it arrived with lousy packing that left the box demolished and totally unusuable to return without spending more money on a decent box.
The big problem? Oh, it might do what it’s supposed to. You probably can safely cut, wash and eat the vegetables in this device.
The problem is in order to use it safely you need to lock the top and the bottom pieces with a simple turn and lock motion. Similar to how you open pill bottles which I have completely mastered.
This, however was impossible.
I’ve yet to be able to use the salad bowl cutter because I as checking it out, I locked the thing and it’s still freaking locked!
If my hands are too feeble to slice and dice veggies they are certainly to weak to unlock the plastic vault that is this useless piece of plastic.
I live in a small apartment building so I could probably knock on a neighbor’s door and ask them to try to unlock the salad bowl cutter. But what about when I want to use the thing? Should I knock on doors after I’ve cut and washed my salad and other produce and then hope people are home and ask them to help?
Do I want to be THAT neighbor?
I already have to bug them to put my ac in the window each spring.
You might think that this blog post really belongs on a product review website and you may be right.
But, I put it here to show one of the aspects of MS that people don’t think about and that causes incredible frustration. Using a product like this should be simple. Who would think it required any skill, especially if you are buying it to avoid another skill you may not have- professional knife juggler.
This little item should have been a problem solver. Instead, for me and my MS it is a problem maker. I now have this locked piece of junk sitting in my kitchen and no easy means to return it making me out a whole precious $10.45.
That may not sound like a lot but with MS budget issues that’s almost three whole RX copays.
I could call the company and yell at them but that sounds useless and exhausting. Plus, I can’t find a phone number anywhere!!
And so it comes around to the original veggie issue. Just like it’s difficult for me to chop veggies it’s also difficult to open cans, even with the fanciest of can openers, manual and electric. So I’m back to using frozen which means limiting options.
Thankfully french fries come frozen.
Are the problems that come from preparing vegetables and purchasing supposedly helpful pieces of plastic that are pure junk a huge problem when it comes to living with MS?
No.
Are they another unusual and frustratingly ridiculous part of living with MS that no one can really predict and can make someone like me outright crazy?
I’ll let you decide…..
PS There is a slight possibility that I accidentally bought the generic version of this item which brings up another MS frustration- making cognitive mistakes that you are not able to easily correct. But that’s a whole other blog. Specifically- MS Moments Not So Magical
Note #1
Friends, I know you have your own chronic illness humor stories. And always in need of a giggle, I and my readers would love to hear them!! Please share on the new Giggles page of my website. Then please visit to read giggles from others as well. Any chronic illness humor story will do as long as it is at least a tiny bit funny and PG.
Note #2
Off to the 2017 HealtheVoices Conference in Chicago soon! Cannot wait to share my windy city adventures and really looking forward to making my website a better experience for all of you! Stay tuned!!
Thank you Janssen for covering my travel expenses to attend! #HealtheVoices2017
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April 13, 2017
My relationship with my android phone
Let me start by saying that I am NOT usually a funny person and I hate being the first one to write but I adore Yvonne so here goes:
It took me several years to give up my flip phone (black, clunky and easy to put in my pocket, drop, put in the pouch of my hoodies.) Well you get the picture. On a particularly busy day (yes I have them) I was talking to a friend on my brand new Android phone (no one is paying me so I am not going to mention a name) and waiting for someone else to text and yet another person to call. The darned phone started pulsating and buzzing and I had no idea where it was coming from. I started to run around the kitchen like a nut case looking for the source of this noise and thinking it was my MS buzzing. Suddenly I realized it might be the phone with that call I had been waiting for (the noise) but still had no idea about the buzzing and didn’t care at this point. I started to rant to the person on the other end that I could not find my darned phone (edited for PG.) This went on until the noise stopped and a new noise went “bing” and the buzzing stopped. She was kind enough to let me finish my rant (mind you I am running up and down the stairs and in every room looking for the phone as surely it must be the phone) when she said very calmly – your phone is in your hand and to your ear – you are talking to me!
What a fool I was. I couldn’t figure out how to hang up this thing – I am amazed I figured out how to answer it at all. She told me she would hang up and I should look to see if I had a text and a voicemail. After a few minutes of searching icons I realized I had, indeed, received the text and there was a voice mail from the call I was waiting for. How can this one contraption do so much and my brain not even know I was already on the phone?
After much searching on the net I have, after a year, figured out how to use this phone, well sort of. Sometimes I can answer a text while I am on the phone without cutting off the person I am speaking with and the same with answering the phone and then switch back (I believe it is called putting them on hold.) I think maybe at this stage you just can’t teach an MS dog a new trick, but I am trying as I will be darned if some kid can do it all while walking I think I should be able to do the basic functions required of an android phone while standing still.
Now my son tells me they are talking about virtual phones on your wrist through a hologram – ugh I may never talk to anyone ever again and that may be a good thing, maybe.
March 31, 2017
Still Crashing
I’m reposting this old post because I still really like it and because my shins are telling me nothing much changes. They are still miserable from this morning’s crashing incident!
And then there’s Crasher.
You KNOW Crasher.
I know you do. Deny it if you want but I bet you’ve got the black and blue marks to prove it.
Crasher is not Crasher as in “I’m so wiped out. I’m just going to go crash for the next five days,” although if it was, that would be a good Crasher.
And no, Crasher is not responsible for crashing the best parties or events, crashing them early, while the alcohol is still free. Oh, how I wish that was the Crasher I’m talking about.
No, Crasher is yet another multiple sclerosis symptom that takes over your whole body and turns you into a whole other mode of being.
I’ve mentioned some of these before.
There’s the child I have written about-
“Daddy- I need to go potty RIGHT NOW!”
This child intersects with the grandmotherly little old lady. “Can you get me a sweater dear? I’m just going to drink my tea and rest my legs for a bit.” (The Curious Case of Multiple Sclerosis Part I)
There is Oscar- content to be mean, grouchy and if necessary, to hide away in our personal trash cans in order to protect those around us from our green, foul mood. (Call Me Oscar)
There is the zombie mode- shuffling about and existing as one of the super undead. (A Zombie Goes Down the MRI Tube)
Speaking of super, resembling but quite different from the zombie mode is Super Blah- a super hero of utmost strength of unthought and undetermination. Capable of coming up with no thoughts of your own and if any thoughts do arise, they probably aren’t even made up of real words but fake ones like unthought and undetermination. (Super Blah)
But now, I have finally accepted and proudly outed- Crasher!
Before this, the Crasher mode was just called clumsy, something I had been my whole life.
As a child, a real child not an adult in MS child mode, I was always covered in bruises, mostly from falling off of stuff I climbed to prove I wasn’t clumsy.
On a high school ski trip the instructor pointed to a tree way to the left of me on the beginner trail and said, “you’re not going to ski into that tree are you?” I assured him I wouldn’t just seconds before I promptly did.
(Okay- that didn’t really happen to me. It actually happened to a friend of mine but it certainly could have been me if I wasn’t already sliding down the bunny slope on my butt. But it was too good an example not to share.)
At the best job I ever had my coworkers took to calling me “Grace” as I tripped around the office, dropping files left and right..
So it was not surprising that desperate for comfort upon learning of my multiple sclerosis diagnosis I asked the neurologist if MS was the reason I was so clumsy. My friend giggled when the doctor replied “absolutely not.”
But that was five years ago and things that we know about MS have drastically changed. And here is one thing I do know about MS– it completely, unequivocally, absolutely ramps up my clumsiness!
It ramps it up so much that my clumsiness becomes it’s own persona, way tougher than “Grace.” “Grace” will no longer do. Crasher is definitely more like it.
Clumsy is as clumsy does and in my world, what clumsy does is cover me with contusions sometimes just walking across my living room.
Crasher shows up when I am particularly fatigued physically but also incredibly stubborn mentally.
On these days, when I refuse to give into the tiredness and try to go about my world, that’s when I turn into Crasher, tripping, dropping things, throwing things, walking into things, etc.
When I’m perfectly calm and without provocation suddenly throw something I’m holding across the room, that’s Crasher.
When I stub my little toe on the coffee table leg three or four times in one day, that’s Crasher.
And when I walk into a wall just because it’s there? You guessed it- it’s Crasher.
When I unexpectedly fall and crash into the ground? Let’s say it together-Crasher.
Before I totally blamed the Crasher persona on MS, I decided I needed to know the truth on this one. Was that early neurologist I saw five years ago correct?
I decided to do some research. I’m proud to report that what I discovered was that she was WRONG!!
Right away I found a website (The McFox.com) that described an early symptom as “uncharacteristic clumsiness.” What does “uncharacteristic” mean to you? To me, it means I’m blaming MS!
Just one website didn’t seem conclusive enough and so I researched further. (I was likely in one of my random “think I’ll goof off on the web modes”- a cross between the zombie persona and Super Blah.)
I found that HealthyWomen.org talks about the MS symptom of balance and coordination problems although it would seem to me to be more of a lack of coordination problem but who I am to disagree with the web.
And MerckManuals.com refers to “clumsiness of leg or hand” as one of the many symptoms of multiple sclerosis.
So there you have it, Crasher is yet another multiple sclerosis personality that we MS’ers must accept. MS’ers are starting to have more personalities than Sybil.
But don’t fret, I’m used to Crasher. The awkwardness of my growing up years has prepared me well.
I’m used to being covered with so many bruises that I look like rotten fruit.
I’m used to tripping on air- I’ve almost perfected it actually.
And I’m used to crashing- both into things and crashing as in resting after I have crashed into things.
I’m tough. Crasher is no match for me!
But the greatest comfort I take from this knowledge? Ha first neurologist- I was right!
And I didn’t even go to medical school!
Guess what? Soon I will be tripping all over Chicago!
So excited to share with you that I’ve been included among several other health bloggers to join the 2017 HealtheVoices Conference! This conference brings bloggers together to share, learn and empower. I can’t wait. I’ll definitely be blogging about what I’ve been told is an incredible experience.
Thank you Janssen for sponsoring the conference and including me!
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February 20, 2017
Holiday Heart Madness
I’m not against Valentine’s Day. Truly, I’m not. Let the sappy saps in love or in intense-like-flirting have their sappy day.
Plus, Valentine’s Day ushers in one of my favorite holidays, half off lots of chocolate candy day, which I totally celebrate. Where was I on 2/15? In the clearance candy aisle of my grocery store of course!
But this year, Valentine’s Day led to my speculating about dating, Steve Harvey and multiple sclerosis.
No, no, no! Don’t panic! Steve Harvey has not been diagnosed with MS, at least not to my knowledge. I certainly don’t want to start any celebrity medical rumors.
But on one of my blah days you might find me watching his daytime show.
(Crucial Disclaimer- I’m talking about a regular blah day as opposed to a Super Blah day where my brain is not in any condition to watch anything. For the official, technical, medical distinction, please check out one of my former posts titled Super Blah.)
When I watch Steve Harvey I get concerned about my stubbornly single status. My buddy Steve is all about helping women find the perfect man and turning regular men into perfect men. His well intentioned goal is to pair us all up. But I don’t want to be paired up! Right now, I’m not searching for the perfect man.
(In truth, I’m not so eager to find a not-so-perfect man either.)
I try to heed all the warnings about not allowing MS to turn me into a social outcast but being social can be exhausting! Add in love and sex and emotions and it’s enough to make me want to hide in my blanket fort with a good book and an even better bottle of wine.
Is that wrong?
I have some awesome writing friends who have MS, met at an MS event, fell madly in love and are now happily married. And I’m super happy for them. I don’t think it would be appropriate to name them, Jennifer and Dan Digmann, but I think their love story is amazing. Exhausting, but amazing.
Personally, I can’t even imagine dating with MS.
“Hi Yvonne, would you like to join me for dinner and a movie?” a potential suitor might ask.
“Uggghhhh…. Can we skip the movie? My bladder makes me miss most of it anyway. And can we do lunch instead? I’m usually a cognitive mess by 6.”
And what’s the latest rule on Going Dutch?
Me- “If we’re Going Dutch can we go to McDonalds? MS keeps me on a tight budget.”
Potential Suitor- “Well, if we’re keeping it low key, how bout pizza?”
Me- “Uggghhhh, ok. But be warned, with my MS shakes and my regular clumsiness combined with my MS clumsiness I’ll probably wind up wearing a slice or two.”
(Ok, so my blogs are tongue in cheek which means I may exaggerate slightly. It’s unlikely I would actually wind up wearing a slice or two. But I would definitely get sauce on me somewhere. And cheese. I just don’t leave a pizza joint without cheese on me in several places, chin, shirt, sleeve…..)
Perhaps you may think I think too much and that I’m totally exaggerating- of course I am, I just told you that.
And you may be right.
And it’s not like I’ve always been this way. I’ve had some super fabulous relationships. And I’ve had some super not so fabulous breakups. I’m just not sure I have the energy to go through that again.
I find comfort in the words of the great Katherine Hepburn.
“Sometimes I wonder if men and women really suit each other. Perhaps they should just live next door and visit now and then.” Katherine Hepburn
But then again, Katherine still had a busy social life.
I do try to keep social with my friends as much as I can. And I in no way begrudge those with MS who are searching for fun and for a mate. I’m just not one of them right now and I’m stressing myself wondering if that’s ok.
I don’t think Steve Harvey thinks it is.
Maybe, just maybe, if it’s meant to be, a great date will just magically appear and I’ll have a magically better willingness to appreciate it. But is it so bad to be so consumed with so not searching for that great date?
What do my single MS friends think about that?
Note 1- I actually did have a Valentine. This little cutie is a Valentine baby who turned six this year and who is my lovey dove all year long! Happy Birthday DJG2!
Note 2- To learn more about Dan and Jennifer Digmann and their very cool love story check out their website here Dan and Jennifer Digmann
Note 3- I believe the best thing for me right now is to watch Steve on Family Feud instead of his talk show. Families and feuds I definitely appreciate!
PS March is National MS Awareness Month! Want to get some awareness tied in with some giggles too? Celebrate the month by giving the gift of MS Madness! Available on Amazon and BarnesandNoble.com A portion of the proceeds from the sale of each book is donated to non-profit agencies helping those with multiple sclerosis and other chronic illnesses.
PPS- Happy Black History Month!
PPPS-Happy President’s Day!
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December 13, 2016
Cell Phone Upgrade Equals an MS Downgrade
When I say I’m technophobic, I really, really mean it.
You know those people who always head to the electronics store at midnight to wait for hours for the latest upgrade? I’m so far from that that there isn’t even a chart to measure how much that’s not me.
When I headed off to college in 1987 (totally dating myself for the purpose of a humor blog,) I smugly carried my manual typewriter up four flights of stairs to prove a point. My dorm mates with laptops were idiots- my typewriter, extra ribbons, white out, typing paper and physical strength were all I needed to write brilliant papers.
I didn’t get any tech smarter when it came to cell phones. I detail my cell phone history hilariously in my memoir MS Madness!– a laugh-a-page story worth purchasing if you haven’t already. (Yes, I know, total shameful self promotion but hey, it’s my blog.)
So it’s no surprise that my little flip phone has served me well. But for the past ten years friends, acquaintances, television, the web, the planet, the universe, have been telling me I needed to upgrade. I balked.
People told me I could use a smartphone to monitor my health.
I could use it to track my meds, (if I remembered to type them into my phone.)
I could use it to track my exercise, (if I remembered to exercise.)
I could use it to remind me to drink more water, (if I remembered to bring it into the bathroom with me when I was getting rid of all that water.
I could use it to play brain games away from home. Games like Solitaire and Free Cell that might help make me smarter. Hmmm, now I was listening.
My friend Gidget (not her real name, is Gidget anyone’s real name?) felt particularly strongly about my getting a smartphone. So much so that she offered to drive the two and one half hours from where she lives to where I live in order to help me buy one and learn how to use it.
I tried to warn her, I really did. And to thank her for making the trip I even made her dinner. (Since I’m a lousy cook I don’t know that that was the best way to show appreciation but she didn’t get sick from my cooking so that’s something.)
It took Gidget 15 hours that first weekend to get me used to the new phone.
I’m not kidding, I tracked it.
And before you go and get all excited on me I tracked her teaching hours using paper and, gasp, a pen.
It was three hours the night she arrived using her smartphone for practice.
It was 8.75 hours the next day, three of which were spent at the cell phone store where I whined, complained, made jokes and tried to accept the new cell phone reality.
And finally, it was 3.25 hours the next day before she left, leaving me all alone with this supposedly smart creature.
(Note, I’m not counting the hour or so when we both got so frustrated she almost stopped talking to me. Luckily, I had wine. The wine helped.)
But the phone and I, a Samsung Galaxy JV3 for you techies who are wondering, got through it.
The following week problems after more problems arose and poor Gidget, and the poor workers at customer service, did their best to walk me through those problems. And in just three short weeks, I could finally use my phone all by myself, just in time for a road trip.
My mom needed to go to her bank, a bank about two hours away that she usually just dealt with online. But this time she needed to talk to someone in person. I offered to take her although the area where the bank was located was not an area I’m comfortable driving in.
Still, I had taken her before and I could do it. I printed out the Mapquest directions and we set off. For the first time ever, we got to her bank without getting lost-a miracle!
But the bank building was no longer a bank. It was gone. Who moves a bank?
Now what? We saw a note on the door telling us where the bank, supposedly, had moved to. But where the heck was that??
I looked at my new phone, sitting quietly in the center console.
“Well new phone,” I said, “let’s see what you’re made of.”
I remembered that when I was practicing Gidget talked to her phone and it answered her. I tried this.
“Hey, phone, where the hell is the bank?” Nothing.
“Phone, if you’re so smart, can you give me directions to the bank?” Still nothing.
I saw writing on the phone that said “Ok Google” and I remembered that annoying commercial and so I tried, “Ok Google, where’s the bank?” And it answered me!
Next I said, “Ok Google, how do I get there?”
And the phone started to give me directions!!!! Though it was a little frustrating a first. “Head east out of the parking lot,” my phone said.
I’m the granddaughter of fishermen and should know my east from my west but even my grandfathers had a compass.
“Ok Google, which way is east?”
We went back and forth a bit before my new phone finally said, “Dumbass, leave the parking lot the way you came in!”
I handed the phone to my mom and she held it tenderly, in fear of it blowing up or something as we both were in awe of its wonders.
“Mom, I think we can still talk while it gives us directions.”
“SHHHHHH!!!!,” my mom said. “I’m trying to listen to your phone.”
And before we knew it, we were safely at the bank’s new location and I was suddenly very appreciative of my new, very smart, smartphone.
It was still rude though. I wanted to show my appreciation and so I said, “Thank you Google. You just saved us. You’re super smart!”
And the phone just ignored me!!!!
It’s been some time now and I’m happy to say that I do feel comfortable with this new technology. But, of course, MS wasn’t going to let me get away that easily.
Recently I was sitting on my sofa and decided to start downloading those free games to help make me as smart as my phone. I got some good ones too and became increasingly obsessed with a game called Toy Blast. No more MS cognitive issues for me! Toy Blast will save me!
I got so into the game that I ignored the aches that were beginning in my left shoulder, left arm and neck. I was so fascinated that I played away for hours until I finally ran out of game lives and headed to bed.
It was then that the pain of being in the same position for too long hit me with a vengeance. And it wasn’t ordinary before MS pain. It was full on, who do you think you are, MS is going to get you pain.
A pain that decided to hang around for several days to prove its point-several gaming hours on a phone is not conducive to life with multiple sclerosis. Perhaps I should have been downloading one of the health apps.
The point of this long post is that if you have MS, you can love your new phone. You just can’t LOVE your new phone. It’s all things in moderation except for MS which never moderates anything.
Right now, MS is smarter than all the smartphones put together and it’s going to make sure you know it!
Still, every once in a while, I pick up my phone and say, “Ok Google, how the *&@#@%^ do you get rid of MS?”
And one day, my very smart smartphone may just answer me…
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December 5, 2016
Guest Blog- Living with a Disability
I have something to share with you, my friends. (You may want to make sure you’re sitting down.) Here it is- living with a chronic illness is EXHAUSTING!!
I know, you’re shocked. Believe me, I was shocked too. But it’s the truth.
Living with chronic illness is so exhausting that sometimes it’s hard to do even the simplest of things. Even fun things. Even things you usually enjoy. Like, say, keeping up with a chronic illness humor blog.
Even when MS gives you great material like putting your toothpaste on the wrong end of your toothbrush and then wondering why brushing your teeth feels different.
Or, trying to fight your exhaustion by playing twenty rounds of solitaire, losing each game and only THEN, discovering you aren’t playing with a full deck.
In the blogging world you might get offers for a fellow writer to guest blog. And since my exhaustion has made my blog awfully quiet these days I was thrilled when a guest blogger wrote to me. I was even more thrilled when she said she wanted to write about HUMOR- one of my favorite topics!
So this week, please enjoy a guest blog from across the globe by Rebecca Moore, founder of the website Able Rise.
Living With A Disability: How To Face Life With Humor
Living with a disability can sometimes make a person feel as though they cannot separate themselves–their attitude, personality, and love of life–from their physical or mental condition. This is due, in part, to the fact that so many people cannot see around the disability to the person who lives with it. This can be frustrating and can lead to a darkened view of the world, a cynicism that makes some want to never leave the comfort of their own home. “Netflix doesn’t judge me!” you might say to yourself. “I’m just going to stay here and binge-watch Breaking Bad.”
For others, the frustration comes in after an acquired disability, when they must learn to adjust to daily life with a wheelchair or crutches. The stares and curious questions pale in comparison to learning how to live with unwieldy equipment and home modifications, how to maneuver in public spaces, and how to carry a purse and a cup of coffee at the same time.
The first thing to do is throw off all the expectations that others have for you. Next, throw out all those expectations you put on yourself. Pretend you’re cleaning out the fridge. Those ideas about not being able to cook, clean, go to school, and work are like old milk: outdated and kind of stinky. The fears about living a full life are exactly like that well-intentioned bunch of kale in the vegetable crisper; you bought it a week ago because everyone keeps going on about how healthy it is, but now it’s brown around the edges because no one really likes eating kale. No one. Get it out of here! And while you’re at it, lose those fears, because there’s no reason you can’t live whatever life you envision for yourself. It’s just going to take some practice and a little humor.
Open yourself up to new relationships
It’s scary to open up to new people, especially when you already feel marginalized. Making friends as an adult isn’t as easy as it was when you were five and your best friend was the boy in the He-Man t-shirt at the playground. Did you get his name? It doesn’t matter. He loved He-Man and that was enough. Now you have to involve feelings and talking about yourself and getting past the hump of polite but awkward conversation about your disability, and you know what? It’s totally worth it. Some people won’t be as invested as you are, and not every new person you meet will become a close friend. Some of them may even say ugly things or unintentionally bring you down; unfortunately, those people are everywhere. Don’t let them ruin your day. Just know that there are some pretty amazing people out there, and making connections with them can help you feel less alone, afraid, and frustrated.
Learn the difference between honesty and flattery
For those without a disability, it can be hard to find a point of common ground with a person who is living with one. They may not know that they can just speak to you like a normal person because they might be afraid of hurting your feelings or saying the wrong thing. Try to be patient and remember what it was like to train your dog not to jump on people: stay calm, be firm, and keep repeating to yourself that they just don’t know any better until you teach them. When you meet someone who feels they can just be themselves around you–and give you their honest opinion about anything rather than praising you every chance they get for being so brave–hold onto them. These people are the ones who will help you get through this crazy life.
Celebrate small victories
Remember that life is what you make it. Facing it with a little humor and patience can go a long way toward keeping you happy and healthy, and so can allowing yourself to celebrate the little things. Were you able to walk around the mall for an hour with your shopaholic sister without feeling tired? Awesome! Reward yourself with a treat and keep up the good work.
Note 1- I agree with everything Rebecca has shared in this guest blog except for one small, minor comment. If you have kale lying around make Portuguese Kale Soup! It is the comfort food of my childhood and trust me, it’s so good that it took me over thirty years to realize that kale was actually a vegetable! Pair it with some good bread and wine (also from my childhood) and you’ll feel much better and much gigglier than you did before!
Note 2- Rebecca Moore runs Able Rise, which is dedicated to accessibility education. Rebecca’s mission is to provide support to people with disabilities and to help educate their loved ones on accessibility.
Note 3- The toothpaste thing and the Solitaire thing I mentioned at the beginning of this blog actually happened to other people I know but they were just too good and too MS like not to share!
Note 4- Photo Credits
Sleepy Emoticon courtesy of farconville at FreeDigitalPhotos.net
Swimmer Photo via Pixabay by Skeeze
Peace Out Emoticon courtesy of farconville at FreeDigitalPhotos.net
Smiley Photo via Pixabay by Alexas_Fotos
Sun courtesy of digitalart at FreeDigitalPhotos.net
October 25, 2016
Bigly Annoyed
Dear Mr. Trump,
I would like my word back please. You know the word. The one people are teasing you about and saying you made up. I know that you say that the news media is against you but I actual saw several trying to help. They slowed down your words because they thought you might be saying “big league” and if you were saying “big league” they wouldn’t need to mock you for saying “bigly.” I’m not mocking you however because “bigly” is a perfectly acceptable word. I know, because my MS brain created it.
Sometimes our thoughts come so fast, we don’t know if the thing that we are describing is a noun, deserving an adjective, or a verb requiring an adverb. So “bigly” combines “big” for nouns and “greatly” for verbs making it the perfect word for all occasions. It’s sort of like the other word I created “partalee,” a word my brain came up with when I couldn’t decide if I wanted to say “partly” or “partially.” Now I don’t have to choose; perfect MS reasoning.
My only question is when did you hear me say “bigly?” Were you behind me in Walmart when I told the nice cashier how I bigly appreciated their low prices? Were you on the other side of the divider at H&R Block when I said I was bigly pleased that I didn’t make enough money to need to pay any taxes?
Well, wherever you heard me use “bigly” I guess I can let it go. BUT, if Merriam-Webster decides to add “bigly” to their next dictionary I WILL sue. Perhaps you can help me with that?
Sincerely,
Yvonne deSousa
The thing is, after I finished my letter I grew concerned. What if Donald Trump didn’t overhear me say bigly? What if he came up with it on his own? What does that mean about his brain? Could he have cognitive deficiencies from multiple sclerosis too?
I decided to investigate and the results are not encouraging. Like me, he forgets things.
He forgets meeting people he has met.
He forgets things he says he has said.
He forgets his opinions on things.
He even forgets important dates! I’ll see you at the polls on November 28th my scary haired friend.
But so what; lots of people forget things. But he also repeats himself just like I do!!! I’m constantly saying “MS sucks” or “I’m so sick and tired of being sick and tired” or “Keith Richards is the man!” Donald constantly says “believe me” or “disaster” or “great again.”
Perhaps those words are important and so not surprising that he repeats them. It’s important that I share Keith’s greatness with the world and so repeating things isn’t in itself a concern.
But what about the lack of focus and the lack of “umph” (not a word my MS brain created) to get things done? Whenever he’s asked a question his brain takes over and he’ll be talking about healthcare and the next thing you know he’s talking about emails.
I do this kind of thing ALL THE TIME!
And he keeps meaning to release his tax returns and he’s promised people he’ll release his tax returns but he just can’t seem to get it done.
I can so relate…
Still, I wasn’t completely convinced until I saw that he also has trouble explaining what he means. He knows what he’s thinking and knows the wonderful plans he has but when he wants to share them with other people he just can’t get the words out. That is such a classic example of MS that I’m now very worried.
Can a person with multiple sclerosis handle having control of the country?
Perhaps.
I couldn’t do it. I can’t even handle having control of my TV remote control.
But they do say that MS affects people differently so maybe if he is elected he’ll do alright.
But still, I’d feel better if we knew for sure. So Mr. Trump, for your health and for the health of our nation, I think I few MRI’s are in order. Perhaps a spinal tap as well. And while you’re at it, maybe throw in some neuro-psych testing too, just to be safe….
Happy Halloween my friends! I was going to re-post a Halloween blog but I thought the 2016 Presidential election was scary enough! Can we dare hope that this whole thing is just a Halloween trick and we’ll wake up on November 1st to discover that our treat is other candidates? Well, one can dream.
Or, one can have some really, bigly nightmares!
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October 13, 2016
The Curious Case of Multiple Sclerosis Part 3
Last night happened to be one of the worst MS bad bladder nights I’ve had in a long time. As such, I feel wicked crappy today. Or, I guess I should say, wicked pissy.
This is getting old, very old. I’m so frustrated that I thought I should write a blog about it. Then I remembered I already did.
So for those of you who can relate to MS really pissing you off, this old post is for you.
One would think that a subtitle called “can’t stop going,” would refer to a good thing, something you would find on an inspirational poster, or in a pop song geared towards the tween set; an affirmation if you will. But when it comes to this week’s blog, you would be wrong.
Very wrong. So wrong that I may just want to get violent and punch something wrong. When something makes me want to become violent, what can I do but write about it? At least writing keeps me out of jail and protects my already tingly fingers from more aches.
When I say “can’t stop going,” I am actually referring to one of my insidious MS symptoms, bladder issues. In my case, I have to use the bathroom constantly and for normal people, that is the end of the story. You go, you’re done; at least for a few hours.
Not for me. No, my bathroom going trips have become so constant they are hard to believe. Which is why they are part of my series on The Curious Case of Multiple Sclerosis, blog posts that explore the particularly cruel irony of some aspect of living with MS.
(If you are bored, see prior posts Part 1 that discusses aging and Part 2 that discusses the difficulty of maintaining a healthy diet.)
But back to my current problem. If this rant sounds familiar it is likely because I have ranted about it before, a lot. I have even used the line, “these bladder issues are really starting to piss me off.” (Pun totally intended.)
The line is not mine but my sister Laurie’s and before I used it as I thought while accurate, it was also funny. That was when my bladder issues happened at night and while it made trying to sleep frustrating and difficult, it was manageable; as long as there was something good on TV at 3 AM.
But lately, the frequency of having to go relentlessly and of then not going completely when I do go, is happening throughout the day as well. My bathroom trips are turning into revolving doors. In the time it takes me to wash my hands and leave the bathroom I have to go again and repeat the process.
Really, what is the point of going at all?
The irony of this is water. Lately, in fact just as this issue started acting up, all I hear is how good water is for you.
I know this. I have given up diet coke and am drinking a lot more water. I have also learned to drink it earlier in the day to avoid the night problem so I can sleep. Now I just need to spend the day in the bathroom.
The medication I take for this problem does help but only a little bit. And it causes wicked dry mouth which means more water. Seems everywhere I look I am reading articles on how dehydrated people are and how crucial water is to your diet. Most people can handle this added H2O intake.
Me, I can handle it great. As long as I don’t need a life outside of the bathroom.
I should discuss this with my neurologist but as I have mentioned before, he is kind of cute. How can I possibly talk to him about this? And even if I did, I am afraid the next step in treating this issue will involve tools that I don’t even want to think about. (Private message me if you have questions about this.)
But I know that I should bring it up and I probably will at my next appointment. (Maybe by then it will have gone away?) Until then, how do I deal?
One MS professional told me to do Kegel exercises. In case you aren’t aware, Kegel’s are pelvic muscle exercises Cosmopolitan recommended in the 80’s for a more exciting benefit. In a Kegel irony of their own, they were developed by a scientist, which likely makes you unlikely to be interested in the exciting benefits.
(Again, private message me- I am trying to keep this blog at a PG rating.)
The thing about Kegel’s is that they are super easy to do and can be done anywhere. Even in the bathroom.
The MS irony here? I forget to do them! Even when I write myself a note, I forget to read the note! Easy exercise- rare and good. Forgetting the exercises-very, very bad.
I heard that this particular bladder problem can lead to UTI’s which are also very, very bad. One way to prevent that is by drinking more water. (No, I am not kidding. According to the internet, that is a legitimate way to deal with this problem.)
Another way is to eat cranberries. I am a New England girl and so cranberries are my world. I can even tell you how they are harvested. Oatmeal raisin cookies? No way. Oatmeal cranberry cookies- awesome.
But I am on a health kick so I decided I would get my cranberries in an organic, non processed, no sugar way. Raw cranberries are a little bitter and so I poured a glass of super healthy juice. And then I immediately spit it out as it was disgusting.
Apparently, even for people born and bred in cran country, you still need a little sugar to appreciate them.
So what’s a girl to do? I added cranberry tablets to my daily meds list which meant more water to get them down and then headed to the busiest room in my house. If you are looking for me or my TV, we have permanently moved into the porcelain and tile room.
And if that pisses you off, well, you likely have a bathroom of your own…
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September 20, 2016
One Pill or Another; Not Gonna Getcha, Getcha, Getcha
I dropped a pill while I was driving.
My fault for multi-tasking.
So what if I was driving, texting, eating pizza, grabbing the pill AND trying to open my water bottle? My neuro-psychological testing did show that my multi-tasking skills were pretty much shot.
Before you panic, I’m exaggerating. I wasn’t really texting and was only thinking about eating pizza- perhaps for lunch. And I was stopped at a red light. But there were people behind me when the light turned green and so I couldn’t locate and pick up the little pill within the 5 second rule that claims that no matter how disgusting my car mat was, I could still swallow the damn thing.
5 seconds was not enough time to even pull over, park and find the pill and so I decided to leave it be. The problem was, that was the only pill of that prescription that I had with me.
I had put it in a little plastic case and now it was under my brakes, hanging out with old M&M’s and stale cracker crumbs. (You know those commercials that say M&M’s don’t melt in your hand? Well, let me tell you, they do melt on your car mats if the temperature hovers over 90 degrees and you’ve stepped on them a time or two.)
If I had brought the pill bottle I could just grab another one but I hadn’t brought all of my prescriptions with me. I couldn’t. Where would I put them? I drive a Camry, not a mini-van.
This little bit of clumsy means I would go without that pill for one day-no biggie.
But it was.
See, this particular pill is one I take because my MS disease modifying drugs give me wicked aches, which means I need to take Aleve to help combat them. Aleve gives me wicked bad heartburn which, it turns out, is not only terribly uncomfortable but dangerous in constant measure. The pill I dropped was a prescription super duper antacid because Larry the Cable Guy has no idea how difficult MS heartburn is compared to his regular old tailgating heartburn.
Who knew the guy was such a wimp?
I spent the day with the horrible heartburn which meant no pizza for lunch which meant nothing really for lunch as I couldn’t remember foods mild enough to eat that my stomach would tolerate. I did try. That chocolate shake seemed mild enough but no….
It seemed silly to stop somewhere and buy over the counter antacids because for one, they are lame and for another, I’ve got about four open bottles at home and what a waste to buy another. In fact, the bottles I have I probably did buy on the road one day after messing up the prescription one.
By the time I got home I didn’t know if I should take the pill so late in the day. I mean a fresh one, not the one combined with beach sand and gravel. It was supposed to be a shot night which meant no Aleve which meant screw doing my shot which meant there went my Mon/Wed/Friday schedule I tell my MS nurse I stick to.
I had plans the next night where I wouldn’t get home until late which meant if I did the shot then, Aleve or no Aleve, my next day would be ruined by post shot aches-the later I do my shot the worse the aches are. And so it goes. If I missed that then I would be really off schedule on the important drugs all because I dropped a slightly less important one.
This is one of the ways MS likes to mess with me. Dropping a pill shouldn’t be a big deal in the grand scheme of things. But it does cause some altering and resetting and re-balancing and re-figuring for the next 48 hours or so.
It reminds me of the time I borrowed my friend’s GPS and accidentally took a wrong turn. The device freaked out and started stating RECALCULATING in seriously important letters and tone. It was kind of funny how upset it got; I started purposely taking wrong turns just to shake it up a bit.
This is what I needed to do with my drug taking schedule- RECALCULATING! RECALCULATING!
And in this case it was just a pill due to a pill due to my MS shot! I can’t even think about what would happen if I dropped one of my actual shots.
(Well, probably nothing- they have a little cap on them that keeps them sanitized until you plunge them into your butt or arm or tummy or wherever…. You could drop one into a well, rappel down the side of the well, fish the shot out -all of which you would do because those things are ridiculously expensive- and still stab yourself with the injection.)
So what does this little tale have to do with MS? I offer it to explain the unusual way MS insists on taxing our minds, keeping our brain cells working so to speak. That constant RECALCULATING is exhausting!
And people wonder why my MS friends and I are so freaking tired all the freaking time!!!
PS Does anyone want to help me clean my car? There’s some free M&Ms in it for you…
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August 23, 2016
Lessons from a Junkaholic
This early blog post of mine was recently featured on the website humorwriters.org, a website out of the University of Dayton inspired by one of their most famous students, Erma Bombeck. To have my picture on the same web page as Ms. Bombeck was a huge honor and I can’t thank them enough!!!
First came the diagnosis; which was terrifying enough. I had multiple sclerosis. That information was overwhelming.
Then I was told something that was meant to be encouraging but instead, added more horror to my world. I could help control the severity of my fatigue and other MS symptoms, as well as my overall health, by committing to a healthy diet. I am shaking right now just thinking about it.
You see, my name is Yvonne and I am a Junk-a-holic. Sweets, meats, salty things, starchy things, and all things processed were my main food groups.
Monday’s meal plan, drive-through.
Tuesday’s meal plan, dinner with my best buds, Ben and Jerry.
Wednesday, a healthy night- frozen dinner.
Thursday, processed pasta, the cheesier the better.
Friday, a social outing, dinner out with friends.
Saturday, takeout pizza of course.
Sunday, combo night, leftover takeout pizza and leftover takeout from Friday.
I was not completely hopeless. I knew that my five foods groups were not the food pyramid the experts recommended, but it worked for me. But the people in the know, (everyone), insisted that I get serious about my diet.
I am, but it has been a long and bumpy road, fraught with many nutritional errors and setbacks. I thought maybe I should share some of the shocking things I learned along the way to help all of you on your path to a healthier diet. If you are struggling with the same issue of incorporating a healthy diet into your world, please learn from the following mistakes I made.
Reading Shape magazine is not enough. You actually have to do what the articles tell you to do.
Reeses Chocolate Peanut Butter Pumpkins are not actually made from pumpkins and thus, are not good for you.
Similarly, a Mounds candy bar does not count as two servings of fruit. If you get the king size bar however, and eat the whole thing, it does count as half of one fruit serving.
This one is really confusing. Just because you buy something at Trader Joe’s or Whole Foods Market, it does not mean it is 100% healthy. Some of their items may actually be only 60% healthy. I know right, what’s the point?
Also frustrating, not everything in the yogurt section of the grocery store is good for you. For some reason, adding flavors, candy and cookies to various yogurts greatly diminishes their nutritional value. Doesn’t seem fair but there it is.
Some spices can add health benefits to your diet. Cinnamon is a classic example. Cinnamon is good for you. Yet, the experts don’t suggest sprinkling cinnamon on ice cream and puddings as the best way to reap the cinnamon benefits.
You need protein in your diet and hamburger has protein. But big, fat juicy hamburgers are not that good for you.
You need dairy in your diet and ice cream is full of dairy. Yet a big, fat ice cream sundae is not good for you.
You need grains in your diet and bread is made from grains. But for some insane reason, fried bread dough is not good for you.
Finally, it turns out, and this one broke my heart, raw cookie dough is bad for you and the calories do count. I thought the calories didn’t register until you actually baked the cookies. It is a cruel, cruel world we live in friends.
Try not to be too overwhelmed with these lessons. Basically, what I have had to train my Junkaholic brain to do is accept that if doesn’t look super delicious, it is likely good for you.
To offer some encouragement to my MS friends, allow me to end on a positive note. Once you start eating the not so good looking things, you do start to feel a little better.
And before you know it, they aren’t that bad…
1st awesome image courtesy of humorwriters.org
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