Yvonne deSousa's Blog, page 8
March 30, 2020
MS Training
To my awesome readers-
If you follow my blog you know it’s rare for me to post twice in one month, never mind 2 original blogs within 2 weeks of each other. But these are not normal times. And while I hoped to be productive by using this time doing work I need to do-ie, editing a manuscript that may never see the light of day, I’m procrastinating being productive by being creative and capturing the random scribblings that have occurred to me throughout this crisis.
You, my friends, are in the unfortunate position of having me treat this creativity as productivity and dumping it into your laps!!!!
In my blog I try to be positive and truly believe that making fun of a medical situation helps ease the medical pain. As a society battling Covid 19, we are frightened. And we should be. This thing is serious!
But a random thought came to me recently and I wondered if it has come to any of you who live with chronic illness.
I can’t always say much that’s positive about MS and life with MS; don’t even get me started on the recent hell that was my insurance getting rid of a helpful, fairly inexpensive (for them) RX only to replace it with a terribly ineffective yet very expensive (again, for them) RX. I could write a whole blog about that!
In fact, I did. You might see it someday when I’m super grumpy and want to share some major negativity.
But as those around me deal with the Corona virus, I’ve discovered I’m already prepared. Multiple Sclerosis has trained me well for this pandemic.
Social Distancing? In my world that’s called life. Not because I’m afraid of the germs, though I do tend towards germophobic tendencies, but because I’m so freaking tired ALL THE FREAKING TIME!
And now I don’t have to make excuses for it.
Someone- “Yvonne, do you want to go to a party?”
Me- “Sorry no, there’s that social distancing thing.”
Someone- “I’m so bored because I can’t go anywhere.”
Me- “I hear you. Now pardon me but it’s my rest time!”
Being inundated with Covid 19 information?
We MS’ers have got this!!!
How much info are we exposed to night and day?
I/We know how to filter through it and get what we need, what we should be hopeful for and what’s just blathering crap from folks who have no freaking clue.
Here’s a Covid 19 example-
What we need- Social distancing is CRUCIAL to help flatten the curve.
What we should be hopeful for- If we continue to practice good hygiene and STAY HOME, we should be able to flatten the curve though it may take some time
Blathering Crap- I hope to see the country up and running by Easter.
Since Covid 19 hit, are you, non-chronic illness readers, suddenly concerned that every little tick and twitch and bit of a tiny medical symptom might be something incredibly dangerous?
We MS’ers understand!
Daily we wonder if this new ache, new body weirdness, new temperature, new cough, new sniffle, new shortness of breath is one of our MS symptoms ramping up and progressing, or just general body weirdness designed to question our sanity.
I feel like my new role as a professional patient should have me teaching others some important skills to deal during this pandemic.
And I would, I really would.
But again, it’s rest time.
And then there’s that whole social distancing thing.
If you don’t mind, it’s time for me to tune out to yet another breaking news report.
Lack of ability to concentrate- that’s called MS brain fog. Feel free to call it Covid 19 fog if it will make you feel better.
I’ve heard so many people say, “I want to use this time to be productive, but I’ve done nothing.”
I say this all the time.
Hell, I’m still saying it.
I said it 3 times yesterday.
No comprehension of time? We’ve been in this social distancing period for just over 2 weeks, yet I hear people saying it feels like it’s been months. Well, in my mind, it’s January 18th and we still don’t have any snow!
People confused by still being in their pajamas at 2 PM? Hello? That’s my natural state of being. Pajamas rock!
Just the other day I saw a meme that read something like, “It’s 9 PM. Time to switch from your day pajamas to your night pajamas.”
Please.
Amateurs.
I have day pajamas, night pajamas, and various sorts of pajamas that can double as both.
I have pajamas that are in between pajamas specifically designed to wear in those in between fractions of time when you don’t know if it’s night or day or it’s nighttime that feels like daytime or daytime that should definitely still be considered nighttime.
I have pajamas that are decent enough for company and pajamas that are decent enough on the top for Zoom meetings. (I only just signed up for Zoom– it’s pretty cool.)
I heard a woman on TV talk about her battle with Covid 19 and she described having the worse fatigue she ever thought was possible.
Fatigue.
Fatigue I’ve learned to handle.
I’ve been wrestling with fatigue and training how to live with fatigue for the last fifeteen years.
If we want to count the 90’s, when I partied way too much, I can double that number, though I don’t think that’s the kind of fatigue she meant.
About the only time I can’t say I was prepared for fatigue was in the 80’s when, on weekends, my mom would blast her awful music first thing in the morning and start cleaning. It was either get up and help or get out.
Nothing wakes a tween up faster than Mario Lanza on full volume at 6 AM on Saturday when you have stayed up until 2 AM the night before watching Friday Night Videos.
You may be so overwhelmed with medical concerns right now you want to crawl into your bed and pull the covers up over your head.
And here’s my best advice for you if you feel that way- blackout curtains do wonders.
As we struggle with the severity of the Corona Virus the very least we MS’ers and other chronic illness folks can say is that we’re well prepared for this ‘self-isolating, quarantine, shelter in place, stay at home order’ time.
And that reminds me of another similarity between life with a chronic illness and the effects of the Covid 19 pandemic- the experts sure don’t make it easy by confusing normally easy terms.
What can we do but try to remain calm, use our common sense and do everything we can to keep ourselves and our loved ones healthy.
Virtual hugs to all of you…
March 16, 2020
If You…
Happy Month of Green and Orange!
Green for St. Patrick’s Day and orange for MS Awareness Month. For whichever you may be participating in, I tip my orange shamrock hat to you. If you participate in both, then double orange lucky leprechauns are being sent your way.
But as they say, beware of the the Ides of March and the Ides this month brought Corona virus into our world.
And it’s frightening all of us.
This is not the Corona ideal for relaxing beach vacations splashed with a hint of lime. (How in the world did they come up with this name? Poor beer drinkers.)
Do you know what happens when you mix the colors of green and orange? You get the color brown, which is not really fun, not really worth celebrating and not completely the reason for the toilet paper shortage.
Speaking of shortages, one of the main problems with this virus is that there aren’t enough test kits available for all who need them, which seems totally inane. The only way to really check your self is by taking your temperature. But a high temperature can be present for several reasons so that is not much of a test at all.
If only there was a test you could take at home to help you figure out if you have the virus but, alas, I do not know of any.
After living with multiple sclerosis for over ten years and being qualified as a professional patient (if you disagree I offer this, one of my prior posts as proof,) I would like to help. But the only home testing I can offer at this point is one for chronic illness.
While my self-designed test has yet to be approved by the CDC– they said they may look at it after they get this horrific virus under control, in honor of MS Awareness Month I would like to offer it to you now.
If you say yes to any of these questions, you MAY have a chronic illness.
Then again, you MAY NOT.
But having a guide from a professional patient such as myself may help you sort out a base line.
If you are ever too tired to go to bed, you may have a chronic illness
If you know the most direct route to every generally clean bathroom on your most used road trips, you might have a chronic illness
If your mom calls and asks you to look up her medications for her, and you can already tell her what each is for as soon as she rattles them off, you might have a chronic illness.
If you can’t walk an invisible line you’ve imagined in your living room to check your balance, you may have a chronic illness. Or you may have just had too much of the good Corona.
If your own medication list needs to be updated EVERY time you go to your doctor’s office, you might have a chronic illness
If you have more than one doctor with a ‘gist’ in their title, you might have a chronic illness
If you can’t remember what you came to an appointment for, but can remember the name of every medical assistant, nurse and office assistant in the practice, you might have a chronic illness
If you have one or more specific medical needs that are noted on your chart but hard for your doctor to remember, (mine is ‘please use a manual cuff when taking my blood pressure’ as I’m terrified of the automatic one,) you might have a chronic illness
If you have little trouble with needles but are terrified of the automatic blood pressure cuff, you might have a chronic illness
If you have more medications than can fit into a weekly pill dispenser, you might have a chronic illness
If all you can think about is the fact that you can’t think, you may have a chronic illness
If you have to schedule rest time into your day, you may have a chronic illness
If you have to schedule bathroom breaks into your day, you may have a chronic illness
If you feel horrible but look great, you may have a chronic illness. But I think we all know this one.
There you go. Hopefully, my home test will help you, but you may want to check with your doctor as well.
In the meantime, sending virtual high fives to all of you and hoping you are doing what’s needed to keep your self and your neighbors safe. If you’re going to get Corona, make sure it’s a tasty kind.
And please never forget, pandemic or not, giggles are still good for you!!!!
BTW- thank you to Jeff Foxworthy for my baseline testing format.
Do you need an RX for some giggles? Want to spend some of your isolation reading? Haven’t had a chance to check out MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis? Now might be a perfect time!
February 24, 2020
Easy is as Easy Doesn’t Do
Hello my friends!!
I hope you all enjoyed that extra special, extra blessed holiday that happens in the middle of February. I’m talking about the one devoted just to you. The one with the pink and red hearts and all the sweetness and the love. You know the holiday I mean of course. It’s a biggie.
I hope you all enjoyed February 15th, the 50% off Valentines Day candy Day!!!
And now, for this month’s blog-
Speaking of a big box of chocolates, I was recently reminded of a quote from Forrest Gump, “stupid is as stupid does.” With all due respect to Forrest, I find the quote well, stupid.
I’m not sure I understand it at all. But since Forrest was supposed to be a man with a low IQ but a very kind heart and a lot of common sense, the quote should be easy, which is a big part of the problem. I think a quote I can better relate to is “Easy is as easy doesn’t do.”
It seems like whenever I hear someone tell me something is easy or super easy or, if they are in Massachusetts, wicked easy, I fall apart. Because it never is!! It’s always just the opposite.
I officially began to conceptualize this back when I was trying to earn extra cash providing child care- it’s not called babysitting when you are in your 40’s. I would arrive at a home and the parents would tell me their children were great, they fall asleep right at 8:30, and “we really just need an adult here for emergencies- you won’t have any trouble with these 2 or 3 or 12.”
I would prepare my snacks and my reading materials and settle in for a night of getting paid generously just to be at this person’s house “for emergencies.” And the emergencies would almost always come from the badly behaved children who would make me actually work. It would be me who would need to pass out at 8:30, but I couldn’t as that was when these adorable little tots would just be getting their 2nd or 3rd or 12th wind.
One woman wanted to surprise her sister with a night out as the sister was a single mom and had been pretty tired lately. She told me that her little niece was a total sweetie and I was going to love her. And I would have loved her perhaps, if I was a glutton for babysitting, oops I mean childcaring, punishment. The child was a direct descendant of some sort of villaniess beast, I swear she was. Once her mom and aunt left, she even started to speak in this monstrous voice. In short, the kid freaked me out.
No, I would only relax when the parents would be super concerned about their kids behavior, worried they might act up, and eager to know how it went when they came home. I quickly learned that those kids were the ones that made my childcaring well, easy.
But it’s not just parents and kids. Have you ever noticed this phenomenon?
Classic example- my friend had some back trouble and asked me to help her with a new brace.
“The nurse said it was easy,” she told me. “I could probably put it on myself but until I’m used to it I’m having trouble as the velcro is in the back.”
Even her instructions said the brace was very simple to use. Three very complicated pages later, she was crying tears of pain and I was crying tears of frustration. Her home care nurse didn’t cry but couldn’t figure out how to use the brace either. It took her specialized physical therapy home care nurse 30 mins before he figured it out.
Yes, it was that easy.
Even songs that talk about things that are easy are almost always wrong. Linda Rondstadt had a hit in the 70’s called It’s So Easy. Do you remember it? Well then I ask you, if it’s so easy why is it so hard to figure out the rest of the lyrics?
The Commodores released a song called Easy. The chorus includes this line, “That’s why I’m easy, easy like Sunday morning.”
I don’t find Sunday morning easy at all!
Do I sleep in and rest or do I get up, make myself presentable and go to church?
Do I plan on getting things accomplished later or do I just rest?
Back when I had a Saturday night night life the Sunday morning question was, do I get up and try to cure my wicked (yes, I’m from Massachusetts) hangover or do I sleep in and wait until it goes away on it’s own?
With so many questions overwhelming my Sunday mornings I do not find them easy. And I’m betting that The Commodores really didn’t either. Hey Lionel Ritchie, I might better like your song if the chorus was more like, “That’s why I’m tired, tired like Sunday morning.”
This came up recently as I have joined my local YMCA.
No, seriously, I really have. And to further stump all of you, my awesome readers, I’ve actually even gone to some classes.
The ‘easy not being easy’ thing came up while deciding which classes to go to. Of course I haven’t worked out in a little bit (just a measly 10-15 years or thereabouts) and knew things might be tough at first. I observed several and decided I wanted to try a Nia Sculpt class because it was dance like and included some great music. But the YMCA description didn’t include the DRC note which stands for low impact.
Still, it looked fun and so I tried it. And I did it! It wasn’t pretty. And I was always behind and had to skip some of the specific moves but the point was, I was moving. Two days later I tried the class I was really looking forward to. It was called Funky Fitness and was definitely listed as a DRC class- low impact, perfect for beginners.
When I arrived I realized I was the youngest member by at least 20 years. And it was hard!!! I couldn’t even keep up with the funky warm up movements. Or the funky ways you could walk during the cardio portion- like a chicken, like Groucho Marx, like a toddler, slowly, more slowly, fast, faster, it went on and on…
It seemed the only funky thing I could do was walk into the other funky participants.
When they stopped the movement and showed us how to check our heart rate I calculated my own as 30 beats per minute, which it turns out, is not moving at all and was a fourth of what some of the others were. Not only was I lousy at the class but I had to do math and health too!
The hour ended with juggling. I’m not kidding, juggling. The class may have been low impact but it wasn’t at all for me, a beginner.
It may have been funky but it definitely wasn’t easy.
So I’ve decided that from now on, if something claims to be easy, I’m moving in the other direction, perhaps using a Groucho Marx walk.
And if you think I may be exaggerating my claim that easy is as easy doesn’t do, just check out these lyrics from Gun’s and Roses It’s So Easy song.
“I make the fire
But I miss the fire fight
I hit the bull’s eye every night
It’s so easy, easy
When everybody’s trying to please me”
Guns and Roses
(See- that’s not so easy at all!)
January 28, 2020
A Review of Bigly Annoyed
Happy 2020 my friends!!!!!
My plan for the New Year was to kick it off with a brand new blog. But then life got in the way with good things (fun stuff,) healthy things (I’ve joined a gym and have actually gone once or twice,) bad things (tech issues-don’t even get me started,) deadlines (library books- no 5-cents-a-day fines for me,) and confusing things (impeachment hearings anyone?)
With all of the politics going on I remembered a favorite blog of mine from the autumn of 2016. Do you remember what was going on in 2016? If not, I hate to tell you but you may have MS. (Important note- a doctor’s opinion is almost always better than mine.)
Please enjoy this old post and I’m going to try really hard to get a new blog out in February. My best to all of you!
Bigly Annoyed
An MS nonpolitical political post
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….
December 21, 2019
5 Days of Christmas Left, But Still
I think I understand what Charles Dickens meant when he said, “It was the best of times, it was the worst of times…”
He wrote these as the opening words of his historical novel, A Tale of Two Cities, a fabulous book by the way, even if it is a little stuffy and was written a billion years ago.
For me, 2019 was the best of years and the worst of years.
I had to have a painful surgery as a result of cancer. But then I was successfully healed of cancer.
The cancer surgery lead to the worst MS flare I’ve ever had, but that has led to the best MS treatment I’ve ever had.
No more injections- freaking yay!!!
I had to work extremely hard on a project only to have it released and be paid a generous amount that has helped with Christmas expenses.
The fatigue ramped up considerably this year, which led to a better appreciation of my waking hours.
My health was the worst it’s ever been, which helped me to realize the importance of stepping up and making good changes which are actually working.!
(Side note, did you know that it’s true that when you exercise you actually feel better? Who knew???)
I’ve had quite a bit of stress in 2019 which has helped me appreciate the great fun I’ve also had.
So I guess it is all in perspective. And my perspective is that whenever possible, we must try to appreciate the good and learn from the bad. 
To this end, I’m appreciating the fact that I absolutely love Christmas and need to enjoy the Christmas preparations as I usually do. Wrapping and baking with my favorite Christmas songs in the background.
Based on the knowledge that 2019 has brought me, this means I can be lazy and turn out an old blog for December.
Don’t worry, it’s actually a fairly popular one.
And though I’ve seen other people write something similar, I swear I didn’t consciously know that when I created it back in 2013. On this theme, my take on The Twelve Days of Christmas is a funny (good) look at what is often considered an annoying (bad) Christmas carol.
On the first day of Christmas MS brought to me: one ach-y bod-y
On the second day of Christmas MS brought to me: fingers all tingly
On the third day of Christmas MS brought to me: three MS hugs
On the fourth day of Christmas MS brought to me: lots of blurry vision
On the fifth day of Christmas MS brought to me: brain completely spacey…..
On the sixth day of Christmas MS brought to me: every day so sleepy
On the seventh day of Christmas MS brought to me: feeling kind of dizzy
On the eight day of Christmas MS brought to me: bladder very leaky
On the ninth day of Christmas MS brought to me: four shots so nasty
On the tenth day of Christmas MS brought to me: head feeling crappy
On the eleventh day of Christmas MS brought to me: legs acting lazy
On the twelfth day of Christmas MS brought to me: balance not so steady-
legs acting lazy, head feeling crappy, four shots so nasty, bladder very leaky, feeling kind of dizzy, every day so sleepy, brain completely spacey, lots of blurry vision, three MS hugs, fingers all tingly, and one, ach-y bod-y…..
Let’s sing it together, shall we? 
A special burst of Christmas gratitude to EverydayHealth which has included yvonnedesousa.com as one of the 10 Best MS Blogs to follow in 2020! I’m honored to be included among the list of such great bloggers!!!
Happy Holidays my friends! Whatever you are celebrating right now, celebrate the good and have fun!!
November 26, 2019
Only in the Middle of the Night
Have you ever wondered how you would handle an emergency?
I have.
Fortunately, I haven’t had too many experiences to know for sure. One time, I thought I’d lost my 4 year old nephew in my own yard and I screamed his name over and over for 3 seconds until he appeared before me.
See? Perfectly calm.
Multiple Sclerosis changes things and I wondered too if it has affected my emergency response abilities.
One time, I looked out my window and saw my apartment building’s caretaker lying face down on the ground on a brisk November day. Odd. So I continued to watch and he continued to not move. It was much more than a few seconds when I thought I should go check on him. I put on shoes and a coat and a hat in case it was cold and headed out the door. 
Then I thought I should have my phone with me in case I needed to call 9-1-1. I went back inside, grabbed my phone, noticed a missed call I hadn’t seen before, checked who the call was from, remembered the care taker and looked out only to see him getting up on his own. He didn’t seem shaky and so I returned the call and watched him.
He was fine.
I was curious as hell as to why he was lying face down on the ground but didn’t want him to think I was nosy.
I want to be prepared in an emergency. I’ve taken several CPR classes and have passed each one, miraculously.
In one class post MS I unfortunately killed the male dummy.
I did the compressions fine but when it was time to do the rescue breaths I needed to balance myself. I rested my right arm on his neck and balanced my weight while trying to save him. Turns out that is not the right thing to do.
Who knew?
For the record, I was doing a lot of childcare at the time and I completely aced the infant and children portion of the class. So if I was babysitting your kids please know they would be safe.
You, not so much.
Anyway, emergency preparedness came up again recently. Around 1 AM one night, as I was just shutting off my light to go to sleep, my fire alarm went off. (Please don’t ask why I stay up so late as I haven’t been able to figure it out. Just like I’m still trying to figure out why sometimes I don’t roll out of bed until almost 11 in the morning. It’s quite the mystery but a mystery for another time.)
I did what I was supposed to-I got out of bed.
I looked for fire- nothing.
I sniffed around for smoke- also nothing.
The alarm stopped. I was really tired and so, I went back to bed.
A couple of weeks later, I decided to go to bed early, midnight or there abouts. I was asleep at approximately one when the alarm went off again. Same time, same place.
I searched.
I sniffed.
No fire or smoke, But the damn thing kept sounding so how was I supposed to sleep with that?
I called the fire department and as I was speaking to the dispatcher, the alarm stopped. I said, “Ok thanks, I’m good. Good Night.”
The dispatcher wouldn’t let me hang up. He asked if the alarm monitors carbon monoxide. How was I supposed to know? Damn, I’d almost been able to go back to bed.
He insisted on sending somebody to check it out and, just to be safe, I should wait for them outside.
Really?
It was 1 AM. Sigh….
I did what he told me though I stayed close to my front door so I could have the outside light for protection.
Of course, while I waited I heard rustling in the bushes to my left. Halloween was soon so spooky thoughts invaded my brain. I told myself I was being ridiculous. What were the chances that a serial killer happened to be outside my apartment the night my fire alarm went off?
The rustling showed itself and came over to check me out. And it was a skunk. I wanted to run back inside but I thought of my friend AnnMarie and her husband Marcus, who is a firefighter/EMT. I knew he would want me to follow the dispatchers directions. 
(Not like AnnMarie always did. One time we were at a Portuguese restaurant when the smoke alarm went off and we kept eating our dinners as did the other patrons. She remarked how horrified Marcus would be. But seriously, who can abandon Portuguese food? We kept nibbling linguica as a waitress waved a dish towel at the alarm to shut it off.)
So there we were- me completely still in my PJ’s in the middle of the night, hanging outside with Mr. Skunk, terrified that when the fire truck got there the siren would scare him into spraying me. How would I ever get back to sleep then?
But, he quickly grew bored and scampered off.
Just like many of my dates.
The truck arrived with no sirens. As the two firefighters came into my apartment, complete with two carbon monoxide detectors, they said this could happen sometimes as dust can get into the alarm.
Dust.
What dust?
I’m a germaphobe who takes pride in a clean home. There was no dust.
Then he asked if I had been cooking anything. Please. I barely cook during the day, I was certainly not going to start cooking in the middle of the night.
Next, how about cleaning? They thought they smelled disinfectant.
Now that was more likely. I could definitely see myself cleaning at 1 AM. I hadn’t been though but was pleased they thought my house smelled nice.
Then they told me sometimes spiders can get into the alarm.
What?
I do not like bugs in my house. If bugs want to hang out in my house they should help with the rent.
Luckily, the portable detectors didn’t show any danger in the air. One fireman asked for a step stool to reach the actual unit. And then he found the culprit. Apparently, up on the ceiling and close to the alarm, was a mix of spider webs and dust- horrors!!
To me, that was the actual emergency.
How did I handle it? I handed a feather duster to the fireman and asked him to fix the problem.
(Turns out I do clean in the middle of the night. Or, should I say, I direct firemen to clean in the middle of the night. “Kind sir, please don’t forget the corners.”
When he was done they pronounced my apartment safe but said I should call maintenance in the morning to check the detector again.
“You mean, for more cleaning?” I asked. “Do they do that?”
The moral of the story is, Marcus, the local fire department and you, my readers and friends, can rest assured. I CAN handle emergencies.
As long as I have a feather duster.
(FYI While this is a 99.9% true story, please remember that it is also tongue and cheek, meaning that I do take emergencies seriously and I don’t want to ever minimize the hard work of emergency personnel.
Thank you to all of them- you folks completely rock!
And as Thanksgiving approaches, thank you to all of you as well.)
October 30, 2019
MS Horror Theory for 2019
Hello friends!!!
Hope you’re all having an excellent autumn!! I’ve been busy with adventures and misadventures alike. Many have given me lots of blog ideas. Alas, they have also given me little time to write. Therefore, this month’s blog is a about Halloween and is a rewrite. But, is a different repeat than my more popular Halloween blog that I usually reprint every October. That on is available within today’s post however. So please enjoy this oldie for this month and I hope to get back to you next month with some original humor.
Halloween is fast approaching and that fact, along with MS and a visit from an old friend, have gotten me thinking about ghoulish things. And by ghoulish I don’t mean the age of me and my friend, although that is frightening in and of itself.
My friend is one of those that has been a friend forever, although we aren’t able to get together regularly. But when we do, we can chat away a whole afternoon without realizing how much time has passed. If you have one friend like that, you are lucky. I’m fortunate to have a few and am very grateful.
We were visiting when she suddenly said, “wow, how can you take that? Doesn’t that drive you crazy?”
I had no idea what she was talking about and said so. What she was referring to were the flashes of light that pass by the window in my new apartment.
The rental happens to be on a busy street and I have blinds on the windows which I often leave open for light, but not all the way up as the glare is too much. When a car passes, it gives off a spark of light.
I was relieved she saw this and mentioned it to me. I’d been living with these sparks since moving in but blamed them on another symptom of MS, (what I always blame things I don’t have an explanation for on,) or, ghosts. Ghosts didn’t make much sense as this building is fairly new but my MS brain didn’t put together the car/window connection.
Speaking of ghosts, she then brought up a theory about my All Aboard post, the post where I describe regularly hearing a train that doesn’t exist. After asking several questions, she determined I really was hearing a train.
“But didn’t you read my blog? There hasn’t actually been a train in these parts since 1938.”
“The bike path went right through the backyard of your old rental and isn’t too far away from here. You know, the bike path known as the Cape Cod Rail Trail? What you are hearing could be a ghost train,” she said sensibly.
It occurred to me that my friend was right AND she had solved the mystery! The famous local bike path was built over the old train tracks. What a relief. I wasn’t crazy and the train sound wasn’t yet another MS medical mystery. It was just a ghost!
This shouldn’t have surprised me. For a while now, I have compared my MS fog state to that of being a zombie. (See a former Halloween blog titled Scary Brain, Scary Movie.) Aren’t ghosts and zombies closely related?
The more I pondered the ghost explanation the more it made sense. Especially since, I realized, ghosts have a lot in common with multiple sclerosis.
Ghosts are very popular during Halloween, which is represented by the color orange. Orange is the color that represents multiple sclerosis.
Ghosts are very scary at best, absolutely terrifying at worst. Just like an MS diagnosis.
Ghosts can hang around you for a very long time before they bother you enough for you to pay attention to them. Just like MS symptoms before an MS diagnosis.
Ghosts can take various forms and can affect people differently. Sound familiar?
Ghosts can be invisible and so people often don’t believe you when you tell them you saw a ghost. MS symptoms can often be invisible and so people often don’t believe you when you tell them you have MS. “But you look so good,” they say.
Ghosts hang around some people but not others and no one knows why. MS attacks some people but not others and no one knows why.
In spite of multiple studies and expense, there is no scientific solution that will get rid of ghosts.
In spite of multiple studies and expense, there is no scientific solution that will get rid of multiple sclerosis.
As Halloween approaches, how is any of this helpful to me and my other MS friends?
What you can’t blame on multiple sclerosis, blame on the supernatural! You are then covered; people are horrified by both.
Whether you are a ghost or a zombie this year, Happy Halloween from me and my buddy Freddy!
September 27, 2019
Some SHINE and a Little Gratitude Too
SunshineAs you, my dear readers and friends know, I have faced some medical trials of late. On top of the whole MS nightmare I’ve dealt with breast cancer and, perhaps most bizarre of all, hives! I’m frustratingly itchy (again,) and directly in between the whole MRI workup for an MS follow up.
But I’m also cancer free!
And more than anything, I’m grateful.
Grateful that the cancer is gone.
Grateful that God helps me through.
Grateful that I have my sense of humor and my classic rock CD collection to also help in the bad times.
Here are some other specific things for which I’m also grateful-
My plastic surgeon who is so proud of his work he practically dances when I show him my chest. (I’ve said it before and I’ll say it again; I really, really think he’s a boob man.)
Not my real docThe MRI technologist who actually gave me a leg massage while her colleague shot me up with dye after I said my leg was spasming.
My friends and family who were there for all kinds of support, visits, keeping me fed after my surgery and not bringing anything made with broccoli, mushrooms or hard boiled eggs. Double shout out to the ones who really cared and brought chocolate!
The home health aid who took out my trash, did my dishes and compassionately helped me with a sponge bath, in the reverse order, thankfully.
Not my friend or her carMy friend/cousin/sister who became my personal chauffeur, medical adviser and top pillow provider. Actually, she was my only pillow provider. How many pillow providers does one really need?
One friend in particular who made me a boob cake and another who wrote me a boob poem. I have very weird friends for which I am also super grateful.
All the cool people who gave me other super fun gifts over the last few months- fruit, cough drops, puzzle books, reading materials, medical supplies, cash and all kinds of other fun things.
The sweet canine who gifted me a DVD of a rare movie that I was eager to see. I already knew dogs were kind and smart but who knew they could also use Google and credit cards!
Tired from online shoppingMy mom who hung out at my apartment just to flirt with the rental chair guy and the alarm guys who happened to be hanging around.
The CNA at the hospital who took time out of her busy morning to make me a real cup of tea! It was like heaven!
The handsome night nurse who sang me love songs at 3 AM. Unfortunately, I was too out of it to find out if he was single.
Not the actual nurseMy local hospital that just built a wing that offers a view of the harbor and the patient before me who luckily healed just in time for me to be the bearer of their cool room. Nothing says pain relief like the watching of fishing boats at sunrise heading out to make a living in the chilly March waters.
You, my awesome readers who have kept me company these months even if you were laughing at my experiences- rude!
And through all this, I’m grateful to the taxpayers of the USA who helped me considerably by keeping my out of pocket costs down.
If you have to ask, it’s too muchSeveral years ago, when I became eligible for Medicare, I was grateful then too, but it was all so overwhelming.
What did I know about deductibles, tiers, enrollment periods and formularies? Somehow, I discovered a SHINE person. SHINE stands for (Serving Health Insurance Needs of Elderly) and they hang out at the local senior center. And while I wasn’t quite elderly, not yet anyway, seems like they help the disabled too.
The amazing lady I worked with took all my RXS, diagnosis, doctors, specialists and questions and rolled them into a specific Medicare and secondary insurance plan.
I don’t often work with guest bloggers on my website unless they are very funny or want to give me a lot of money. But I’m so grateful to all of you and think this is relevant information, that when I was contacted by Danielle K. Roberts, I wanted to share her very helpful post.
Read on to learn some things you might not have known about Medicare.
And, if I haven’t said it already, thank you!
Multiple Sclerosis and Medicare – How are Your Covered?
People who have been diagnosed with Multiple Sclerosis (MS) may feel nervous about leaving employer group coverage and enrolling in Medicare. MS is a chronic and progressive condition for which there is no cure. However, Medicare does provide coverage for the treatment of MS and there are no pre-existing condition exclusions when you first enroll in Medicare either.
Understanding what Medicare costs and how Medicare works to cover treatment of MS will help you to feel reassured about the level of coverage you can achieve with Medicare.
Original Medicare Benefits
When Medicare was first created back in the 1960s, they modelled its coverage after the traditional Blue Cross and Blue Shield where there was two distinct parts that cover hospital and medical care.
Part A pays for your inpatient hospitals stays, some home health care services provided in the hospital and any skilled nursing that you may need after a hospital stay.
All other non-hospital related healthcare services will be covered by Part B. This includes preventive care, doctor appointments. It also covers pretty much everything else that isn’t performed as part of an inpatient stay. Medicare Part B will cover your lab testing, diagnostic scans, physical therapy, speech and occupational therapy, medical equipment and supplies and urgent and emergency care too.
There are several injectable medications that are used in the treatment of MS. Part B covers these too if they are administered by your physician in a doctor office setting.
Outpatient Medicare Benefits
Medicare Part B is the part that most of your treatments for MS will fall under. For example, if your physician orders blood tests to rule out other medical conditions or a spinal tap to verify a potential diagnosis of MS, Part B pays for this.
He may also order physical therapy to help you maintain your mobility and Part B covers this as well.
There are several prescription drugs that are commonly prescribed to treat MS. If your physician administers these himself, then Part B pays for these as well.
Your Medicare Part B Costs
Most people enrolled in Medicare Part B pay a monthly premium for this coverage. In 2019, that standard base premium is $135.50/month, but some people with higher incomes will pay more.
Social Security will deduct this Part B premium directly from your income benefits monthly, or if you are not yet taking SS income benefits, then they will bill you quarterly.
You will also have some cost-sharing as you use your benefits. There is an annual deductible ($185 in 2019) that you must satisfy up front each calendar year, and then Part B will pay for 80% of covered services.
After the deductible is satisfied, Medicare Part B will pay for 80% of the cost of your medically necessary covered services. You will pay the other 20% of Medicare’s allowed amount.
Fortunately, Medicare negotiates competitive rates to keep costs down. You can also enroll in supplemental coverage to help you pay for these deductibles and coinsurance.
Covering the Gaps in Medicare
Many Medicare beneficiaries enroll in supplemental coverage to fill in the gaps. Medicare supplements, also called Medigap plans, allow you to see any physician nationwide. There are no networks or referrals needed and most physicians do accept Medicare.
Back in 1990, Medicare standardized supplement plans to make your supplement comparison easier. You can enroll in a plan that meets your needs and budget. Since Original Medicare doesn’t cover outpatient medications, you would add on a voluntary Part D drug plan to help you reduce the costs of your prescriptions.
Another option is to enroll in a Medicare Advantage plan. These plans often have lower premiums than Medigap plans but you will have to use a smaller local network of providers and pay for your share of services as you go along.
Speak with a Medicare insurance broker to help you compare plan options and decide on the coverage that is right for you.
Do you have questions about Medicare coverage with MS? Boomer Benefits is a Medicare brokerage licensed in 48 states, representing over 30 insurance companies. You can reach out to our team at 855-732-9055 or through our website at https://boomerbenefits.com.
Danielle K Roberts is the co-founder of Boomer Benefits where she and her team help baby boomers navigate Medicare. She is a member of the Forbes Finance Council and writes frequently about Medicare, retirement and personal finance.
August 26, 2019
Dark, Itchy Shadows
In the beginning, yvonnedesousa.com was designed to be a showcase for my multiple sclerosis humor blog; a means (if you will,) to help me through the obnoxious emotions that came from living with MS.
Then, it turned into a multiple sclerosis/ breast cancer humor blog to help me through the terrifying emotions that came from living through a breast cancer diagnosis.
Of late, it has turned into a multiple sclerosis/breast cancer/hives humor blog to help me through the frustrating emotions three month of hives have brought into my life.
But now I think yvonnedesousa.com has just become a medical mixture of all the things wrong with my particularly, medically bizarre self.
Today’s post starts with a shadow. Or, of course in my case and just too make things interesting, many, many shadows.
Dark, itchy shadows.
You see, I was back at the dermatologist’s office for a follow up appointment regarding the hives. This appt was just after I saw my neurologist for my MS follow up but before I saw the surgeon for my pre-op breast reconstruction surgery part 2.
This, the hives appt, was to confirm what I officially diagnosed myself with as hives, and to see why the allergy regimen wasn’t working. Turns out when I told all of you in the last blog that I’d been diagnosed with hives, I was actually jumping the gun.
The dermatologist never confirmed hives- he just said it was a possibility. He couldn’t tell because he didn’t see any!!!!
How could that be? I was scratching like crazy and my skin had now turned into all different shades of darkened purple, but he didn’t see anything?
What is this patch of itch right here?
Or, how about this patch?
Or this one?
Or this one?
And so on….
“Those spots are not an actual condition,” he told me. “They are just shadows.”
Excuse me?
“You definitely have something going on. Or you did. But what’s left is just the shadow of something, not the actual thing. I can’t diagnose the thing if it’s gone and only the shadows remain.”
“But the shadows still itch like crazy!!!!” I told him.
“Yes, but they are just that- shadows.”
Do you remember in life when you first discovered your shadow and it was cool?
Well, not so much anymore.
My mind turned to songs about shadows.
Me and my shadows, strolling down the avenue
Me and my shadows, not a soul to tell our troubles too
Well certainly, not the dermatologist anyway.
Just a shadow of a doubt
She says it’s keeps me running
I’m trying to figure out
If this really is something
And if it’s not something then why the hell am I still scratching?
We’re running with the shadows of the night.
Baby take my hand, you’ll be alright
Surrender all your dreams to me tonight
They’ll come true in the end.
Wouldn’t that be nice.
My dream is to get rid of the dark, itchy shadows of something, whatever that something may be. Especially in time for my second surgery.
The dermatologist upped the allergy medications and wished me well. He didn’t know if the shadows would complicate the surgery, but he did schedule another post op, post-surgery but before my surgery post op.
Are you still with me?
Are you keeping track of all of this?
Good.
Can you please explain it to me?
But miracle of all miracles, I did get my wish. The hives or whatever have faded to a vague itch here and there. Was it the stronger allergy medications the dermatologist recommended? Was it the very unusual recommendations you, my precious readers, sent me? I don’t know but they have calmed down and I’m super grateful.
And to make things even better, I was able to proceed with the surgery which was way easier than the first one.
I did wake up in the recovery room sneezing like crazy and with a runny nose. Sort of like the sudden cold I get whenever I fly somewhere. For more of the medically bizarre please see this prior post Sniffles Not as Cute as a Hamster
But a cold, though annoying, especially when it comes on so suddenly and lasts for a couple of days, I could deal with. With the itching gone, I was now somewhat at peace.
The surgery was still painful, although not horribly so. I took the prescribed pain medications for 2 days to help the healing process along. On the third day, stricken with intense boredom and tired of reading the Kleenex box, I decided to read the informational newsletter that actually came with the prescription.
Under the section that says ‘Side Effects for Which You Should Call Your Doctor Right Away’ the first listing was-hives.
Yes, that’s right.
I finally know what caused my hives. It was the prescription pain medication.
So what if I didn’t start taking that medication until about 2 weeks after my hives cleared up?
In my bizarre medical world, it makes perfect sense to me.
And, of course, to my shadows.
First song lyric adapted from “Me and Shadow” by Al Jolson, Billy Rose and Dave Dreyer
Second song lyric adapted from “Shadow of a Doubt (Complex Kid)” by Tom Petty and the Heartbreakers
Third song lyric adapted from “Shadows of the Night” by D. L. Byron
July 30, 2019
Itchy, Icky and Sticky
It was the best of July’s, it was the worst of July’s.
That’s what Dickens meant, right?
I find myself relating somewhat though I would like to add an amendment- it was the weirdest of July’s too. At least in my world.
There was the good- 2 awesome rock concerts, a fun water park adventure, a new drink discovery that is a watermelon mojito, and lots of social time with friends.
There was the bad- way too many doctor appts, way too many over the counter medications, a heat wave, a new diagnosis, a tornado.
Through all of that was the weird appearing in both good and bad ways- how can the Rolling Stones still be amazing when they are all in their 70’s??!! This was no “tribute to a by gone era” performance. This was a full on, can you believe it, rock and roll, powerhouse show.
The tornado-though scary- actually caused no injuries and lead to a 2nd night at the aforementioned water park.
I live on Cape Cod and we’re familiar with hurricanes and blizzards, and I appreciate a good Nor’easter as much as the next guy. But a tornado? What’s a girl to do when a rare tornado rips through her town taking with it all of the electricity for over 36 hours? 
I mean, how can you not extend your water park visit? There just didn’t seem to be any other options.
But through all of this was the scratching that lead to a new medical diagnosis- I have chronic hives. A condition of which there is no known cause and no known cure.
Sound familiar?
All one can really do is try to treat the symptoms and try not to scratch, which turns out is important as scratching makes the condition worse.
Remember in my last post when I said that it’s my body and I’ll scratch if I want to? Well, it turns out that when our parents warned us against scratching when we had poison ivy, poison oak, or chicken pox they knew what they were talking about.
(Unlike when they told us we couldn’t go swimming for 20 hours after we ate lest we get a tummy ache and drown.)
So, if you’re keeping track, I have now been diagnosed with breast cancer- a very scary and serious illness that turns out, fortunately, to be only somewhat scary when you catch it early. (Reminder- please, please, please get your cancer screenings done my friends.)
Multiple Sclerosis, a very serious illness with no known cause and no known cure that can be completely invisible and thus doesn’t look too serious.
And chronic hives, a not so serious illness with no known cause and no known cure that is terribly visible and looks very serious. Especially in the summer when short sleeves are a necessity.
Nothing topical is helping the itchiness and because of the scratchiness that comes with the itchiness my limbs are a frightening mess.
I’ve checked and I’m not contagious but tell that to the multitude of families who were freaked out by my entering the wave pool with skin covered in scratches, redness, puffiness, and general ickiness, combined with general itchiness.
My water park companions told me not to be so self-conscious; I was fine, and nobody was looking at me. But they were 7 and 8 and their opinion was likely altered by the fact that they were desperate to get into the park and they weren’t doing that without me, their only chaperone.
This situation reminded me of the time years ago when I had gum surgery right after Christmas as that was the best time to take off work. The stitches were done with black threads and I was very aware of how awful they looked. Still, my friend really wanted me to go to a New Year’s Eve party with her and tried to convince me, “it really doesn’t look that bad Yvonne, it just looks like you have food stuck between your teeth.”
Who wants to go to a New Year’s Eve party looking like they have food stuck in their teeth?
Anyone?
Anyone?
I didn’t go to that party but at the water park I did what I had to do. I jumped in the lazy river and prayed that I had a huge “not contagious/clear to swim” sign over my forehead. How ironic that in the medical world I live in something horrible like MS looks fine and something innocuous like hives looks horrible?
My doctor referred me to a dermatologist who has informed me that there really isn’t anything that can control the itchiness.
(I already knew this- I had tried everything in the pharmacy as well as almost everything on the internet. I even bathed in oatmeal. Yes, oatmeal. Sticky, icky and still itchy.)
But he said we can try to treat the hives themselves with an intense allergy regime. I don’t think it’s working but I can say this, I haven’t sneezed in months so that’s something.
Next up is a shot which I’m actually looking forward to? How did I get here- a point where a shot is something exciting in which I’m eager to participate??!!!
And through it all, it’s July and it’s hot. Here’s an MS statement for you- if you can’t tell if your AC is working or not, you might have multiple sclerosis. Mine probably is working. The bugs seem to like it as they use its filter as an invite to come hang out with me.
But still, I feel icky.
And sticky.
And itchy.
And that’s just for July.
Who knows what August will bring?
I’ll be ready. But if it’s going to be itchy and sticky here’s hoping there will be more good weirdness lumped in!
Note– I had a bit more trouble with this month’s blog and perhaps that’s because lately, my mind has been as scattered as the whole month has been. One of the things I’m hoping to focus on in August is the edits on my latest manuscript. This story has nothing to do with multiple sclerosis but is a coming of age tale set in my quirky hometown and featuring an appropriate, incredibly inappropriate relationship. There’s a section about bees and since lately I’m all about hives which reminds me of beehives which reminds me of bees, I thought I might include it at the end of this blog. I’m sort of using you guys as test readers for this small portion. I don’t have a publisher and I’m not sure this will ever see the light of day. But, if you like it and happen to know some publishers I would love to chat!!!
Here it goes-
………….While technically a private club for veterans, the VFW in our town featured a bar open to the public as long as you signed a guest book. Since everyone knew everyone, everyone was considered a guest of one veteran or another. Dark and smoky, the bar was in the basement below the regular VFW Hall. The steps were in the back of the building and once you entered it was like entering an American cave filled with medals, flags, memorabilia and memories of our town’s heroes. The guest book was right at the entrance and after your eyes adjusted to the haze, it was hard not to find a familiar face sitting at the bar. Especially since you had most likely surveyed the parking lot before heading down the steps. It was a great place to play pool and get strong, cheap drinks.
Apparently Jason had also been banned and was pretty furious about it. According to Wayne, Jason showed up one night years before drunk and belligerent and was ordered to leave. He not only refused but supposedly opened a box full of bees he had with him, letting them fly into the club. The mostly drunk townies freaked out as the bees, trained by Jason, zeroed in on people to sting. The police were called, and my dad showed up alone and he too, freaked out at all the bees and didn’t know what to do. To save everyone from the swarm, my dad and the bartender, Old Manny, had to beg Jason to magically gather the bees by apologizing and promising him they would lift the ban.
While listening to the story I indulged Wayne but didn’t believe it for a second. My dad was known as a fair, cool cop who would give people a break if he thought they were being honest with him, mostly because he hated writing tickets and arrest reports. But if you wouldn’t pay attention to reason, then he would take you in and wasn’t afraid to do so. I couldn’t imagine my dad losing it over some obnoxious insects and the whole incident was too crazy to be believed, even for my quirky town. On the way home that night I asked Richard the real story.
“Well, I wasn’t there,” he said. “But the way I heard it was more like Jason showed up drunk, Old Manny kicked him out and he stood in the doorway yelling and swearing. There must have been a nest over the door because while he stood there a couple of bees came in. The police were called and when your dad showed up, he told Jason to calm the hell down. When he wouldn’t, your dad took him into protective custody, less paperwork than an arrest, I guess. I think I heard that Manny started complaining about the bees Jason had let in and your father said something like, ‘well, get a fly swatter or something. I have handcuffs for people for Christ’s sake, not bees.’”
