Yvonne deSousa's Blog

I’m Still Standing, but Barely

By multipe sclerosis and DWTS

This is how my confused, layered, weird, MS brain works.

“I wonder what I’ll do tonight. Is there a good true crime documentary to watch? Oh wait, Dancing with the Stars new season starts at 8PM- yay! I miss head judge Len Goodman but glad the other judges are still there. Remember when Bruno Tonioli was in that video for Elton’s John’s ‘I’m Still Standing’ in the 80’s? He was funny. Too bad I can’t relate to the song. I may still be standing, but barely. Speaking of songs, what about Nancy Sinatra’s ‘These Boots are Made for Walking?’ That’s a fun song to dance to. But for me, the title should be ‘These Boots Might be Made for Walking but Standing Not So Much.”

For context, Dancing with the Stars is the only reality show I watch. I used to like Deadliest Catch, but it started to get repetitive- look for crab, no crab, lots of crab, grouchy captains, inept greenhorns, maybe a storm, Mike Rowe’s cool voice, etc.

I also watched Sister Wives for a while because, like, wow, really?

Anyway, for ACTUAL context away from my brain ramblings, here’s another frustration about MS and invisible symptoms- I can walk much, much better than I stand, especially if I have something fun or delicious to walk to.

(Overindulgence on sweets guilt is greatly minimized if I must walk far to get them.)

Walking somewhere fun? No problem.

Feel like trekking downtown for a mocha latte? I’m in!

But wait in a long line to see a cool sight? I’ll skip.

I don’t know what it is but standing for over ten minutes hurts. And it wipes me out faster than a one-mile jaunt. My legs begin to burn and start to feel like they are on fire.

(Not that they have ever been on fire thankfully, but that’s what I imagine legs on fire may feel like. A throbbing intensity that makes me want to cry on the spot.)

Is this MS normal?

Is there such a thing as MS normal?

Yesterday I took my mom to a local shoe store because she wanted to look for, well, shoes. I got confused by what type she needed. Fall shoes? Sandals? Slippers? Something like that.

My mom uses a walker and moves a bit slower than she used to. The store is big with long aisles, and my mom had to peruse.

I found a seat customers use to sit when they try on shoes and just sat. For a while. It was just too much to stand while Mom shopped.

Eventually one of the salespeople came over to help her and I let them, feeling judged because I look normal but lazy.

“Look at that daughter not helping her mom shop? What’s wrong with her? Guess I’ll have to stand here while the mom looks around.”

She wasn’t busy and it is an expensive store, so I didn’t feel too bad, but still. If the salesperson said something to me, I could explain why I wasn’t helping but she wouldn’t because that would be rude. Sometimes I want rudeness just so I can defend myself.

I did offer to help by holding the box of shoes my mom was thinking about, giving the clerk a free hand to suggest others. I walked to her, took the box and then sat my aching legs back down.

My mom bought a pair, so who cares what the clerk thinks. This would not be an issue if it only pertained to people I don’t know but that is not always the case.

Later, my mom needed things at the grocery store, and I was only too happy to go in for her. Quick steps, small line self-check-out and I’m all good.

Then I bumped into a friend I hadn’t seen in years. I wanted to catch up and I think she wanted to catch up as well. But I just couldn’t. How could I?

“It’s great to see you- how have you been? I would love to know but can only spare three minutes after my long day or I might collapse.”

That would be my being rude. Especially since she was on crutches!

(Don’t ask me why- I was afraid to ask in the event it was a long story. Just like I was afraid to ask after her kids, her job, and her in general.)

I gave her a quick hug and mentioned looking her up on Facebook and then rushed off. And I will look her up on FB. I would really love to catch up. Just somewhere I can sit down while we are doing it.

I think I handled that situation well as I have had some practice negotiating circumstances like that before, but it is still another MS juggling act.

The day before I joined some friends at a church I used to be a regular member of. I saw people I really wanted to catch up with but knew it would take a while. Plus, I had been standing during Mass.

(That’ s ok because those are usually quick stands, except for Palm Sunday Mass. That one has me praying for a donkey I can respectfully sit on while we remember Jesus’ riding on a donkey.)

And I had to pee.

When the last hymn started and my friends had to sneak out for work, I followed them. I took my time using the bathroom while the more respectful parishioners waited for the cantor to finish. This allowed me to do my business, rest a bit since I’m not a guy (get it) and then walk out and visit with the two people who were still around. Sure, I missed visiting with some others but my weary, achy, legs of fire thanked me.

I am blessed with wonderful neighbors, and I love to catch up with them. I also know walking is good for me and I enjoy it. So what’s an MS’er to do when I bump into neighbors who want to stop and chat? There’s that rudeness thing again.

I have explained my predicament to some, but I can’t expect them to remember, especially if we are starting a good conversation.

I know there are rollators you can rest on, but I don’t need a rollator in general. And since walking is good for me, I don’t want to be encumbered with having to push something I don’t need unless I don’t want to appear standoffish.

It’s true, this is a small problem in life when compared to other problems. Even compared to the problem that is MS itself or how people with MS are perceived by judgmental others when they look fine.

But it is a weird one that comes up often in my life so I thought I would share to see if you could relate.

And maybe get a song or two stuck in your head in the process.

These boots are made for walking indeed…

Dollar Signs, Languages and Chatbots

What’s an MS’er to do?

One cool thing about August is that it is when I get the tiny bit of royalties from one of my two books.

(If you happen to be thinking “books? What books?” then please see the sidebar on this screen and click on the Books tab above. If you even minimally like what you see, please consider a purchase so that when I say, “the tiny bit of royalties” I will be able to drop the word ‘tiny’ from that line.)

This year my publisher switched from good old American checks (cheques?) to an international money exchange website. That is how I got my royalty payment in February.

But this month, when I pulled the company up and tried to log in, everything, and I do mean EVERYTHING was written in a language so foreign to me I couldn’t even attempt to figure out what it was or what I needed to do.

I’m not an American snob; I appreciate that there are other languages in the world besides English and Spanish, as there should be. But what to do when I couldn’t even access the basics of a website I had used before.

I found a place where it looked like my email should go and I typed it in, assuming the next box would ask for a password, which I did have. But no, up came instructions which were completely gibberish to me.

If the language was Portuguese, I probably could have figured it out. If not, I had lots of people I could turn to too. But it definitely wasn’t Portuguese.

My favorite sister-in-law, (ok, my only sister-in-law but who cares, she rocks,) is from Thailand and would be happy to help but I was pretty sure it wasn’t Thai.

I have friends from Colombia- notice the fourth letter is an o not a u- very important, and a friend from Laos, but I was pretty sure it wasn’t either of those languages.

I have a nephew who spends a lot of time in Australia, but I didn’t think this website was in Australian.

Is there an official language of Australia? If there is, this wasn’t it. My nephew has a cool accent, but this website wasn’t in an accent.

It was in an entirely different word language.

My boyfriend has ancestors from Holland, but I think the only thing he knows about the Netherlands language is the Hollandian way to pronounce his last name, which no one in his family EVER does unless they are asked about it. 

So, no such luck with people I could turn to for some insight into how to access my reader’s money.

There seemed to be a box for a chat with a chatbot and so I clicked it, wrote my problem out in English and lo and behold, the bot answered me in English. However, it was not speaking my language. 

It started to get all techy with me and suggested I download a translator program for my laptop.

I am loathe to download anything new to my laptop as it always ends up in complications Peter must walk me through fixing and then we both get stressed with my tech phobia problems.

(I swear, any issues we have come from the Tech/Common Sense Things to Do List I am known to throw at him. Luckily, he is very patient..)

This stress was for money and so I asked the nice bot how to do the download. It walked me through, and I did it, all by myself and my payment program bot.

Now what?

I asked the bot what to do next and he said to copy and paste the text I was trying to read into the translator.

Which text?

I didn’t even know what part I should try to translate. Can you translate an entire website? 

The Chatbot was no longer interested and left me on my own.

Artificial intelligence indeed.

I turned to my publisher for help. He is also a foreigner. He is from Texas. But he had no clue either- when he sent me my royalties the website was in English.

I checked with fellow authors from my publisher and though they were having their own problems with this website, their problems were problems enough but problems in English.

Now my MS stress levels, and frustration were ramping up.

And I felt stupid.

Seems like the more the world claims to make things better and easier to use, I feel more clueless and dumber.

Is this a multiple sclerosis thing?

Who knows?

But the thinking got fuzzy, the head got achy, and my grouchy vibes got much, much grouchier. And it seemed like a lot of work for 5 bucks.

Ok- it was a little more than $5, but not much.

I took to Google again and was able to find an English way to contact the company directly. An hour later a company human emailed me back and I prayed he could help.

And he did help, six back and forth emails later. And the answer was so simple!! 

On the home page of the website there was a word highlighted in gray. ‘Deutsch’ which actually means Dutch in Dutch which turns out is what people in the Netherlands speak. When you hit the gray tab, you get a whole host of languages to pick from. Literally any language you want, including Australian.

I scrolled down, found English and voila, I could read the website.

(For the record, I could not tell you what language ‘voila’ comes from, but I know what it means, the answer to my enraging, vexing issue.)

I was finally able to access my royalty payment, and it WAS $5. $5 for each overwhelming hour, allowing for the crying and cursing of course, it took me and my laptop to figure out how to resolve this language dilemma.

I guess for some reason, when I logged on, my laptop decided to change the website to Deutsch, just for me. If it had said Dutch, I might have thought to click on that and got my royalties in a much easier process. But I didn’t know Deutsch was how Dutch people spelled Dutch.

But, really, did it have to be so hard? Did the chatbot who is supposed to be so super smart really not know that hitting the gray tab that said Deutsch was all I had to do?

Aren’t chatbots made from artificial intelligence and thus supposed to be, well, intelligent?

Was my frustration born of my own lacking intellect, or the result of my MS cognitively challenged brain, or completely normal?

What’s normal for the average brain in this artificially intelligent universe we find ourselves in and how is one supposed to figure it all out?

I may never know and thus, this is where my tech depression likes to hang out. Throw multiple sclerosis into the mix and what should be a simple task can become a tear-filled all-day, rage inducing nightmare.

Was it worth it?

It doesn’t really matter.

Like living in this AI, techy world, I had no choice.

$5 is still $5.

FYI For the record, I do know that people in Australia speak English, just with an Australian accent.

It was just more fun for me to write the blog this way. 

And how do I know this despite my nephew telling me so?

I know this the same way all of you do.

I watched Crocodile Dundee when I was a kid.

Swimming in the Jaws Pool

Plovers again, but for sharks

In case you have been under a rock the last two months, you likely know that the movie classic Jaws is 50 years old this summer!

I celebrated with a shark party at my apartment complex where I won a cool prize in the fishing contest- this Jaws mug!!

I love big mugs so now this, and the one I got as a present at the begininng of the year, are the only two I use, despite my extensive mug collection. The fishing contest came down to the wire between me and one of my neighbors, but I called on my fishermen ancestors and won.

So what if we were fishing in a kiddie pool for plastic fish, I stll caught the most!

To further honor the anniversary of the Steven Spielberg’s first great movie, I present an old blog that is actually one of my all time favorites. Why? Because even though the title is about plovers, it actually deals with the phenomena that is Jaws!

Plovers Rollover

MS hits the beach and crashes

Just months after my MS diagnosis I went swimming in the Atlantic Ocean. 

That’s not as big a deal as it sounds.  

This beach was a beach of my childhood. At least it was when the piping plovers weren’t hatching. When they were, the beach was closed which drew the ire of the locals and brought out our local attitude. 

Trust me, piping plovers DO taste like chicken. I know because about 100,000 vehicle bumper stickers have told me so.

Back then, it was common to swim in the Atlantic. Now the Atlantic Ocean at this beach is filled with seals which means it is also filled with seal poop and Jaws.

I’m not sure which is worse. 

For the record, I’m the only one who is concerned with seal poop. That’s either because I’m a germ-a-phobe who is particularly concerned with waste products, or because the rest of the world can’t do basic math- seal=seal poop, multiply by hundreds gives you 100’s of seals= lots of seal poop.

As for worrying about Jaws when swimming, we locals were tough. And by tough, I mean we were more afraid of our parents than we were sharks. As soon as one of our obnoxious older siblings started humming the Jaws theme music (you’re humming in now, aren’t you?) we would run to our parents only to be severely scolded.

“Shark. What shark?  Movie? Don’t talk to me about any movie, that fish wasn’t even real! I didn’t put some soda and sandwiches in a cooler and drive five minutes out here so you can sit on a towel- go swim!”

It’s no wonder they never let us watch the Exorcist. 

Swimming wasn’t their only beach rule- they also made us ride in the bed of pick up trucks and never heard of bug spray. How did we manage to avoid being eaten by vicious sea creatures, cracking our heads open after falling out of a truck AND West Nile Virus?

I think we did have sunscreen; all the adults thought the Coppertone ad was cute.

Anyway, before the seals took over the ocean beaches, just after my diagnosis I went swimming in the ocean and had a blast. But that night my arms roared with incredible pain. Now I say incredible pain knowing full well that pain is relative. I have no idea if I have a high tolerance or low tolerance for pain.

How do you judge? 

I guess you can’t. I just knew my arms hurt like hell and as I laid there the only reason I could come up with was that whilst in the Atlantic- though lovely- the currents were harsh.

I spent a lot of time flopping around like a seal and battling to keep from being pulled out to sea. It was less frolicking and more “hey, start swimming seriously or you’ll drift to Portugal before you know it.” 

The other weird (bizarre, strange, crazy) thing about that pain was that it went away during the day but came back again the next night and the next after that. 

It diminished slightly with each evening but still. Why did it only come at night?  It’s like that age-old question our parents ignored when we asked, “when the tide goes out, where does the tide go?”

When the pain goes away during the day, where does the pain go?

Fast forward to this summer where I swore I would make the best of the heat/humidity nightmare that is July and August. 

And I really have been. 

I’ve read 2 good books so far. 

But that wasn’t enough. 

With my pale skin still causing great embarrassment to my Portuguese ancestors and a need to get as much Vitamin D as possible, I wanted to get to the beach. 

(Just so you’re not concerned my MS friends, I do take a high, RX Vitamin D supplement and take great caution to eat Vitamin D rich foods. There is a ton of ice cream in my freezer and a Dairy Queen frequent eater pass to prove it.) 

First, I had to figure out the best beach to go to. The ocean beaches are a no as already discussed with the seal/shark situation.

Luckily, we have bay beaches. Yes, I know. Sharks and seals can swim but for some obscure scientific reason they can’t swim from the ocean to the bay.

The closest bay beach to me has real restrooms but tons of sand bars making high tide not really high at all. 

The next bay beach has more depth but only porta-potties. 

The beaches along Nantucket sound cost too much since I’m not a resident of that neighborhood. 

I know, I know.

Cape Cod girl problems that are making my mid-western friends want to beat me up.

Eventually I picked a beach and have gotten some sun and some swimming in. Or, what kind of looks like swimming. You might call it splashing around. 

Turns out the swimming skills I mastered as a kid have not held up well. 

Where’s the Jaws theme when you need it?  Nothing improves your breast stroke quite like that.

Anyway, after a couple of forays to the beach one night my left arm suddenly hurt- a lot. It started from my elbow down my arm to my hand and fingers. What is that?? 

Because it felt worse in my hand and fingers I wasn’t too concerned that it was a warning sign for cardiovascular trouble. 

Plus, it was worse when I moved a certain way. 

I know you wise guys are thinking “WELL DON’T MOVE THAT WAY!” 

But where the pain is keeps changing.

Is this the beach again? 

This beach had no current or rip tides. The most I moved in the water was really just propelling my body to the surface to float around. 

(Floating, I still remember. Leave it to a lazy girl with MS fatigue to manage to lay down in the water.)

Another way this pain is different from the ocean swim pain is, while decreasing, it does stick around during the day. Does that have something to do with the tides? 

One might suggest that I should see my doctor. But with MS all kinds of obscure sensations develop, wane, come back, explode, fizzle and generally make the MS’er question what to do when. Going to the doctor with a new something I can barely describe is starting to get old. 

How do you decide what is doctor worthy when MS has turned you into a medical mystery?

I decided to handle this the Cape Cod way. If it gets worse then I’ll make an appointment. Until then, locals believe salt water is the cure for everything. The best thing to do is get back to the beach, stick my whole body in the bay and see what happens.  

At least I’ll be getting some Vitamin D. 

Disclaimer

It’s important to keep your doctor posted on everything and the salt water cure may just be an old wives tale. If you have a concern it’s best to call your doctor’s office, even if I don’t.

Also, the Vitamin D from the sun can penetrate through sunscreen. What has a harder time are the UV rays. If you are beaching it, please wear sun protection. 

Finally, this is a total tongue in cheek post. There MAY actually be sharks in the bay. But there’s no seal poop there. 

Trust me, I’ve checked.

FYI

In need of a beach reads?

Don’t forget Shelter of the Monument, written by yours truly which is available in paperback and on your kindle!

And new this summer, also available in Audible narrated by the lovely Colleen Chipman!!!

Check it out here!!! Shelter of the Monument

The Decimated Bush with Portuguese Roots

When MS combines with visiting your heritage

It is Portuguese Heritage Month!!

To celebrate, Annmarie came up with a last-minute idea to visit Fall River, MA and get our Portuguese on.

I did have plans to go dancing the night before with another friend, but I figured I could handle both. Back in my younger days my friends and I would leave at 10 to go dancing and dance till 1 AM. Nowadays we leave at 7 and dance to 9:30. And with my recently reconstructed toe surgery I was less dancing than standing in place and swaying my torso.

It must have looked sad- so sad the lead singer of the cover band felt bad and came over to dance with me for 20 whole seconds. I only got in 5 dance songs, but still, the healing must start someplace, and I was out dancing!

In bed by 10, I was ready for Annmarie and our Portugal adventure to begin at 9 the next morning. We have done these types of shopping trips before, and it is always unusual fun.

(See No Curtains for You.)

About 45 mins into our drive, she stopped at Dunkins Donuts

Me- “Why are we here?”

Annmarie- “I’m going to use the bathroom.”

Me- “Huh..”

Annmarie- “Is there a problem?”

Me- “No. I’m just trying to figure out if I need to go too.”

Annmarie- “Try.”

Back on the road, our first stop was a tiny bakery that just sold Sweet Bread. Imagine a place that only made and sold a specific kind of bread and delicious bread at that.

Our next stop was a Portuguese grocery store after I googled myself crazy looking for a real Portuguese bakery/café I had been to before but couldn’t remember. Turns out, it was right next to the grocery store. So, after buying Portuguese groceries I did not need but hey, its Portuguese heritage month, we went to the bakery for some fancy coffee and a treat. 

Then we headed to a Portuguese marketplace where I chatted with an author signing his book written in Portuguese, but I did not buy it. 

One- I am ashamed to admit I don’t speak the language of my ancestors let alone read it, and two- after buying those groceries I did not need, my funds were limited.

I did get to partake of the wine samplings, five high quality wines made from grapes from all different regions of the country and where I learned two things.

One- when the wine sampler guy talks about skin contact, he may not be coming on to you but instead talking about how the grapes in the wine are processed and two, despite my quick tiny buzz, I don’t like expensive wine. A $9 bottle of Vinho Verde works nicely for me, thank you very much. 

At Annmarie’s urging I also went to the sardine sampling table. Not that I like sardinhas. But they were also sampling various tunas. I took a sample and promptly dropped it on the sardines which caused Annmarie to shake her head and hurry off to be a personal shopper for a lost American wandering the market. No disrespect, we were Americans too. I just feel superior by virtue of my last name, though I embarrass my ancestors by not speaking or writing Portuguese or appreciating sardinhas.

Good thing I like cheap wine.

We finished our heritage celebration day with lunch at a Portuguese restaurant and then a quick trip to an American grocery store just so the country of our birth wouldn’t feel left out, and then we were home. Since Annmarie drove, I was able to rest my surgery foot, my MS legs and my multiple sclerosis brain. It had been a long but fun 24 hours, and I was ready for some good rest.

And that should have been the end of the story. But when I got out of Annmarie’s car, I unlocked the trunk of my car to load my bags and then unlocked my front door and started bringing my bags into my house. And then I lost my keys. 

I knew they had to be with me because I unlocked my trunk and my house, but I couldn’t find them. Still, I decided to blame Annmarie and called her to see if she drove off with them. She hadn’t and reminded me they had to be there- I unlocked my trunk and my front door. From the driver’s seat of her vehicle, she saw me do it.

Did I check my bags? Yes.

Did I check my pockets? Yes.

Did I check my rain jacket, my purse, and the little table I use to throw everything on when I get home after a long, fun day? Yes, yes and yes….

I checked everything and everywhere as they had to be here. I checked my fridge in case I had thrown them in there when I unpacked my bags. I checked my trash in case I accidentally threw them in there for some unusual MS reason. I pulled my sofa apart as that was where I tossed my jacket and maybe they fell out and landed between cushions.  I checked my bathroom since once I got inside my apartment that was one of the first places I went.

I ventured outside where I had left my trunk open after bringing in bags. I searched my trunk and since that wasn’t good enough, I pulled everything out of my trunk and searched more. Nothing.

Despite the light drizzle I was afraid to close my trunk until I found my keys. I searched under my car and under my neighbor’s cars. 

I searched the path from my car to the door, the ground alongside the path and even my backyard a bit in case a bunny had hopped off with them, little, fluffy key thieves 

Along the path was a fully developed bush. Maybe they fell in there? I looked, pulling the branches and leaves apart. Even though it was still daylight I thought a flashlight would help. I went inside to grab one, which, luckily, was where it was supposed to be, and took it out to the bush where I searched more.

In desperation because, say it with me now, my keys HAD to be there, I was less than gentle as I pulled the bush apart trying to find my missing keys. Suddenly the bush didn’t look as developed as it did before and I STILL didn’t have my keys.

I repeated my searching inside my apartment and out and then, literally 1 hour and 50 minutes later, I checked the time, I called Annmarie again to admit defeat. Her husband answered and before I closed my trunk, I asked him if there was a secret mechanism inside the trunk that would at least unlock my car until I found my back up car key.

I was pretty much in tears now, exhausted and planning in my head the cluster it would take to start replacing keys. He sympathetically said there wasn’t anything like that in my trunk, but it was starting to rain for real now and I should just close my trunk, go inside and forget about them for the night.

I closed my trunk.

And there, in the trunk lock, was my key ring….  “F@$k!!!”

This is where I should have used one of the few Portuguese curse words I know.

Annmarie said one day I would laugh at this and probably so, which is why I have written a blog about it. But I’m not totally there yet.

While it’s true, anyone could make the same mistake, MS makes me make them when I’m most exhausted and then doesn’t let me find an answer without wiping me out first. I wonder if it wasn’t for my fatigue and my MS brain if I would have found the keys before I tore apart both my apartment and the innocent little bush in my yard. 

As frustrated, angry (at myself) and overwhelmed as I was, would I have traded that for the fun day I had?

No, probably not. And fun and celebrating is important to us all. We MS’ers can try to plan better and sometimes it will work and other times, not. The short story is, I lost my keys.  We can all relate.

The longer version is losing my keys did me in on what was an otherwise lovely day.  It’s simple and it’s not always so simple. 

But as my Portuguese Aunt Lucia liked to say, “Aye Yvonne, is de life.”

Maybe to prevent this frustration in the future I will get one of those key thingy’s that you can activate to play an alarm if you lose them.

They make those, right?

Does anyone know if they make ones that play Portuguese music??

To finish up Portuguese Heritage Month come hang out in Provincetown, MA June 27th to June 29th where we celebrate the annual Portuguese Festival culminating in the Blessing of the Fishing Fleet on Sunday. On June 27 specifically, myself and several other local writers will be reading from our work.

Check out the festival website for all the details!

Provincetown Portuguese Festival

New Way to Shower, Another Look at Shower Time

Post foot surgery and non-weight bearing status in April, I had to get a tub bench. At first it was kind of cool. Being generally lazy, the idea of sitting down to take a shower seemed pretty lovely.

But eventually it got old and now I’m eager to take my showers like a normal person.

Or at least, a normal person with MS fatigue. Which in my MS world, isn’t really normal at all. To show you what I mean, I felt a new look at an old blog might take you into the shower with me- so to speak.

Thankfully, the plan is that the tub bench will come out of the shower this weekend and I will be taking my regular, old, hours long shower processes!

Shower TimeA new multiple sclerosis skill

People not living with multiple sclerosis or another chronic illness can’t possibly understand the fatigue we talk about, unless they have actually spent hours trying to find the energy to take a shower.

It doesn’t matter if my achy body slept in til 11 or I had to get up at 7 for Mass. 

(What is up with 8:30 Mass? My Christian friends might disagree with me but my reading of scriptures says that worship is not appropriate until the worshiper is wide awake, usually after 10:30.)

The plan for this particular day included finishing (and actually starting too) a writing project I had known about and been thinking about for months. It was due at midnight. Showering helps me think through ideas but getting into the shower has become a lot of work lately.

It shouldn’t be. Especially on this day. This was to be a quick shower. I wasn’t going anywhere besides my desk. I didn’t need to wash, condition or style my hair. I didn’t need makeup. All I needed today was a quick rinse, soap, rinse again, and dry.  Easy.

I probably didn’t even need a shower except that for me, my secondary illness is germaphobia so going without is out of the question.

I drank my tea. 

I ate my breakfast.

I answered my emails.

I sorted through my daily meds. 

I made my bed.

I posted a funny baby video to Facebook.

I watched a DIY video on how to make a cheap bed for my dog which was pretty silly since I don’t have a dog.

I thought about my writing project.

I thought about why taking a shower is so exhausting.

I started this blog.

What makes a shower so exhausting? Is it the standing? The water temperature? The slip and fall concern? 

Is it the multiple steps even if the multiple steps are so simple we should be able to do them without even thinking about them?

I really didn’t know but I had to figure it out. I had things to do and they started after I finished my shower.

I thought music might help through the getting clean process and so I turned on the Music Choice channel. I normally go for classic rock but today the 80’s felt like better shower music. 

The channel was playing Too Shy by Kajagoogoo. The music notes said that the lead singer left the band to pursue a solo career in the 80’s. 

“Well how did that work out for you Limahl?” I snickered. 

Before I knew it, I was googling Limahl. 

Turns out his solo career went fine. But he was definitely cuter in the 80’s. 

Then again, weren’t we all?

I  v— e—r— y  s—l—o—w—l—y headed to my bathroom. It was shower time. Since I had 80’s music on, shower time turned into Hammer time which made me think of MC Hammer. Thus, that was the song in my head when I finally got into the shower, over three hours after waking up initially. 

Taking a shower should be automatic and NOT a big deal. It is such a minor part of my day that I don’t even write it down on my “to do” list; and I write EVERYTHING down on my “to do” list. 

Start writing project.

Finish writing project.

Post a funny baby pic to Facebook– scratch that right off. Done and done!

In the years before MS symptoms started rearing their ugly and obnoxious heads, taking a shower was how I kick started my day, not something I had to work up too. But multiple sclerosis can change many things both huge and insignificant. 

Still, I refuse to let MS completely beat me up. Whenever possible, I go for the positive. 

Now dressed and back at my computer and finally starting my writing project, a thought occurred to me. Yes, it was ridiculous how long it took me to do such a routine task. But look at all the things I accomplished in the meantime. 

Those cute baby videos don’t post themselves you know! 

Come to think of it, I was pretty impressed at the things I had done while I procrastinated the soap and water part of my day. 

Back in the old days I didn’t have such procrastination skills. Procrastinating meant zoning out in front of the tv while some sitcom I had seen hundreds of times broadcast canned laughter. I would literally be a useless clump of procrastination nothingness. 

Now look at me! 

It takes quite the skill to be able to procrastinate at this level. It is not for the weak or faint of heart. 

Neither is MS. 

I decided that this skill I’ve developed since my diagnosis is nothing to disregard. I’ve entered into an elite society of professional procrastinators and I couldn’t be prouder. 

I don’t want to pat myself on the back too much, but more MC Hammer lyrics lingered in my brain. 

Hey you regular, amateur procrastinators- “U Can’t Touch This!”

FYI- Shelter of the Monument turned 18 months old this month-so exciting!!

To celebrate, I got it a little gift, it’s own book video!

For fun, check it out here-Shelter Book Video. And if you like it, please share!

No Bunny Hop

The one where the rabbit doesn’t die; he just hops out of the lab altogether

(Note- words in parentheses are things I thought and may or may not have said.

Also, my apologies for this blog being released later than usual. The plan was to release it in time for Easter but as you will see, hopping and healing are exhausting!)

I couldn’t help but notice the boy of around seven or eight, clutching what was likely his favorite stuffed friend.

Was he here for surgery too?

Was his friend helping him?

Did we have time to go home and get Bergie?

Even though I’d called ahead and asked, they wouldn’t let Peter go back with me. It wasn’t so much that I was nervous, as much as I thought I owed him for taking that silly picture of him wearing the scrub cap before his last surgery.

The male nurse led me back into the pre op area, stopping in front of the bathroom and suggesting I use it before we get started. I wasn’t there 20 seconds when he banged on the door.

“Yvonne? Is there any possibility you could be pregnant?”

(Well of course it was possible. Anything was possible. Hadn’t he ever heard of the Immaculate Conception? But if we are strictly biologically speaking then no, that bunny rabbit left the lab quite a bit ago.)

He then took me to a bed, pointed out what I needed to change into and the fancy plastic handled bags I could put the clothes I was wearing in, and closed the curtain. Shortly after I was in a johnny my surgeon came by. He said hello and then asked what we were doing today.

(Shouldn’t he know? Should I be concerned if he didn’t? I was already concerned that when he used the plastic foot puzzle in his office to describe the surgery to me, he dropped it on the counter where it promptly fell apart. Was this another sign I should leave, half- undressed and all? Or did it mean I could have any surgery I wanted- nose job, face lift, tummy tuck?)

“I forgot the long-involved name but basically, I have an obnoxious bunion on my left foot, and you are supposed to fix it. Wait, are you just testing me?”

He smiled then and, to prove he had some knowledge of the subject, reminded me that I was about to undergo a surgery called a First MTP Joint Fusion or, in more difficult medical terminology, an Arthrodesis of the Metatarsophalangeal Joint.

(Yes, exactly like I said- obnoxious.)

I was then taken for a ride through the magical halls of the hospital into another room. Which was weird because the next thing I remember was being in a totally different room and a very friendly nurse was placing cranberry juice on my tray and asking how I was feeling. I was feeling ok but had no interest in the boring graham crackers and saltines she was trying to get me to eat. She left and returned with a package of Lorna Doone cookies.

Now she was talking my post op snacking language.

(Great- just what I need, to be reacquainted with a delicious cookie I had forgotten existed.)

As I munched, she went over the instructions which seemed a little complex for my anesthesia riddled brain. She said I didn’t need to worry as they were all written down. What I should remember was that I might not remember much of anything as my brain was still foggy, even more than MS usual, and so the next 24 hours was not a good time to make any major decisions.

(Hey Peter, let’s plan a weeklong sailing trip to the Bermuda Triangle in the middle of hurricane season. No, wait, I probably shouldn’t voice that one. He loves sailing so much he just might be on board, literally.)

It was my lucky day in post op. Not only did I get cookies but then the nurse gifted me a walker and a huge, yellow, slanted foam pillow to rest my leg on. She put my bags of clothes on my lap which now included my left sneaker and sock as my left foot was in an orthopedic shoe, handed me the pillow, placed the new walker on the arms of the wheelchair I was sitting in and rolled me out to Peter waiting by the curb.

With that we were on our way. Or at least Peter was. Me, not so much.

I had been told I would be non-weight bearing for at least two weeks and I had tried to prepare. I borrowed medical aides from local agencies that I thought I would need for being non-weight bearing, including a cool knee scooter.

I had called ahead to see if they had one and they said they did, but only one. They couldn’t hold it, and they were only open on Saturdays from 10 -noon. I got there wicked early and managed to snag it. I was psyched that it was pink and thus matched a pair of my sneakers!

I joked that I had to knock over two old ladies to get it but that wasn’t true. Luckily, the few people who got there before me wanted commodes and I didn’t need a commode, just the scooter. Or so I thought. I also got crutches.

Turns out non-weight bearing is hard. Maybe I had a harder time than most due to my multiple sclerosis balance issues, or being out of shape, or being just overall clumsy or a combination of all three. The crutches were useless as I wasn’t stable on them. I did feel balanced on the walker, but it turns out to move it you carry it and hop!  I haven’t hopped since those raucous hopscotch games during fourth grade recess! 

Peter tried to help and showed me what he called a swing I could do with the walker. I tried it and I didn’t swing. I hopped. We tried again but Peter’s swing was my hop, and I knew of which I spoke. I’ve read Hop on Pop by Dr. Seuss and thus have medical research behind me.

The pink scooter became my bestest friend. It was kind of cool. So cool that Peter named it Pinky after Pinky Tuscadero in Happy Days.

What didn’t feel so cool was discovering that I did need a commode after all, or at least something with handles that raised the toilet seat.

Did I already say that non-weight bearing is hard?

It was just too tricky trying to balance what needed to be balanced to use the bathroom. We took to Amazon and wound up ordering something called a “toilet seat riser for seniors.” 

I am not a senior. I’d like to think of myself as a freshman with a cool sports injury like from gymnastics or cheerleading but I’m probably more like a geeky sophomore at the end of the year who’s tripped on freshly mowed damp grass or something.

Nothing says romance like having your boyfriend put together an Amazon toilet seat delivery for you. Still, it did help. You do what you’ve got to do, I guess.

I also had to get something called a tub bench for the shower.  What a way to give a lazy girl an excuse to lounge while taking a shower!

No matter what I used to get around, I needed both hands to manage basic moving. I took to wearing a sports bra all the time- not for support necessarily, but to help carry stuff, a handy trick, no pun intended, I learned from a dear friend. (See The Motley Two Go to Motley Crue.)

While my friend used her bra to carry smokes, nips and a camera, I used mine to carry Tylenol, cheaters, protein bars and my cell phone. The scooter has a basket but that’s for big stuff like Yeti’s and my laptop.

The plan this Easter was for me to be hopping around like a bunny with my mobility aides in check. It didn’t work out that way. 

I was scooting though. I was scooting all over the place.

And with help from Peter, friends and neighbors, I was getting around and healing. Before real bunnies start hopping all over my yard I hopefully will no longer have to hop or scoot. I should be walking soon. Maybe limping for a bit, but getting there…

I will not miss the bathroom riser. 

I may miss Pinky though…..

FYI FeedSpot as named YvonnedeSousa.com as one of the Top 45 MS Blogs! Check out the great list here.

Angry

Yvonne and the miserable, horrible, yucky, little good, very bad attitude

Ah, it’s Lent again. A time of repentance, reconciliation, reflection and renewal.

It is the saddest time and the happiest time.

It is a time of despair and a time of hope.

Yet what I have been reflecting on this March is the Rolling Stones song, Angry. Particularly the line Mick crones that goes “I’m not angry with you,” which is weird because yes Mick, I am angry. 

Seems like there’s a lot to be angry about lately. But that just doesn’t coincide with this time or faith.

What’s a girl to do?

I’ve been thinking that since we are at the halfway point of Lent and I am human after all, it’s ok to be a little angry at times.

(Even Jesus himself had a hissy fit in the temple.)

I just have to change my attitude and maybe that will work out better if I vent to you about the things that have got me furious lately. And yes, as multiple sclerosis lives with me on a daily basis, and this is an MS blog, some things are MS related.

Holes in my clothes

I’m on a tight MS budget and take care of my things. So why do I keep getting tiny little holes in my clothes? I guess they are from moths and other fabric eating creatures, but I don’t see any. And trust me, I’ve checked. 

Research tells me that they don’t like lavender and moth balls are always good and so I bought lavender moth balls, and I still wind up with holey clothes. Some of my favorite shirts are starting to look like Swiss cheese.

I wore one turtleneck anyway as it was so soft, and I loved the color. I wore it until looking at me you saw more of my pale, flabby belly than mulberry cotton and I was forced to chuck it. It makes me concerned about buying anything new and my house smells like flowers and bug resistant chemicals, just like my elderly Aunt Rosella’s did in the 70’s. That’s just great.

Lume Commercials

Speaking of smells, those commercials for all over body deodorant for women really tick me off. Used to be that all we needed was one deodorant swipe under each arm and maybe a tiny bit of cologne and we were good to go. Now the media is telling women that we stink. What a way to empty our wallets and prey on our deepest insecurities.

Notice they don’t show commercials for all over body deodorant for men. You know why? Men don’t care! I know, I have smelled some of them.

Interesting shows on cable channels I don’t have

I have Netflix and Prime, the latter mostly to get free shipping. 

(Rant within a vent- why does Prime charge for movies so old that if you wait a month or two, you’ll probably get free on regular television anyway? Really makes no sense. But then again, there’s the free shipping thing..) 

But all the good shows I want to watch appear on something else. Well, you may say, just get the channels you are most excited about. But then the shows change their channel! I have done several 1-month free trials to binge a show I’m curious about only to get stuck in password overload, confusing cancelation dates and additional seasons when promised there would only be one season.

Thank goodness I enjoy reading!

Exceptions to the rules

I try hard to follow the rules. Sometimes I bend over backwards (well, since I have MS it’s more likely I’m bending over sideways if I’m bending at all,) to be a diligent rule follower. I have been known to stand in line again for even a basic follow up question or put extra postage on a mailing that MIGHT be less than half an ounce overweight. I take my medications EXACTLY as my doctor tells me too, I don’t drive with my handicapped placard still hanging from the rearview mirror, and damn, I don’t even use my placard unless it is an emergency or horrible weather or paid parking which happens to be free with a placard.

So when someone skates by carelessly disregarding rules right in front of me, I tend to get annoyed. Case in point- I had to take my mom in for an MRI and they didn’t make her change into a johnny! And why not? They didn’t want to stress her out too much.

I always have to strip and tie and hold onto scrubs that are always too big or too unflattering or too scratchy. Not my mom!!

They did make her remove her bra. At least that’s something.

Patient Portals

These are the worst. And often they don’t even work. Every time I have to log in for a new appointment, I have to update my meds and they still remain wrong. The portal will find a new old RX I haven’t used in ten years and decide to throw it in there or randomly take out something crucial, like an anti-anxiety RX which just causes me more anxiety.

Plus, and I have complained about this before, they are too involved. (See the All in with Bears blog.)

Suffice to say that when you make one appt you will then have at least seven notifications following it, most before you even get to said appointment. There are text, email and phone call reminders, the log in online reminder in text and email, the ‘are you here yet’ text and the notification to check your portal to receive the visit completed notation. Woe to you if you have any testing done. AND, as if I wasn’t mad enough, my neurologist is on a whole different portal!

Infuriating!

AI

No, it is not better or easier. Now when I want to do something it takes forever to either get through the artificial intelligence system only to have it tell you you need to talk to a real person but not give you any idea how to do that or waste your time trying to navigate around it. And usually, AI knows nothing.

It’s insulting too. I have a friend who is super talented in everything and is so sweet she is always willing and able to help me with anything. She needed to write a bio for a newsletter and looked to me. Finally, I was able to do something for her and completed what to her was a horribly unwanted chore. Several months later she was having a problem and needed a complaint letter. She was angry herself and just started typing. The next thing she knew, AI took over and wrote a whole complete, perfectly effective letter for her, before I even knew the problem existed!  If AI starts writing for her, especially angry stuff, how will I ever be able to help her with anything??

Slimy carrots

As I have previously described here, vegetables and I just don’t like each other. Some are slightly less obnoxious than others and I know they are important. I try to sneak them into my diet when it’s not too awful. I have been eating more salads and when I make them at home, I like to add pre-cut, pre-washed matchstick carrots to them as matchsticks don’t really taste like carrots and they can be covered in salad dressing. I just bought a bag, opened them, ate a few and they were wicked slimy!! The ‘use by’ date was good, and they looked fine but open the bag and they were even more disgusting than regular carrots.

Other types of produce can turn slimy too. For the record, cookies properly purchased by the expiration date and stored as directed never get slimy.

Division

I think the thing that has upset me most is the state of division in our country right now. It seems like the US is in a worse position than it was when the North and South were divided in 1860. We are disagreeing like the Hatfields versus the McCoys, the Montagues versus the Capulets, the Republicans versus the Democrats….oh, wait.

It is more frustrating than ever. How can one side see so clearly, and the other side be so blind? Of course, the blind side could make the same argument, not seeing that they are blind and that the other side are the ones who need the glasses. And then back again.

It is terrifying and makes me ANGRY!

Ah, phew…. Having all my rantings and ravings out on paper and giving them to you has made me feel so much better! Thank you. 

I hope I have not made you angry too. If I have, sorry about that.

As March winds down and the second half of Lent begins, I feel like there is hope on the horizon, hopefully. I plan on now turning to the reconciliation and renewal part of the Lenten season and focusing on the good news of Easter and Spring and bunnies and sunny days.

If all those don’t work, there’s always happy dog and baby videos- those don’t make me angry.

Unless they are on a cable channel I don’t already have a subscription for!!

Thank you to Feedspot for naming yvonnedesousa.com as one of the top 45 MS blogs!!!

Check out the full list and some of my fellow bloggers here!

Of Clocks, Kids and Travel

Less MS, more old

I am old enough to be this little guy’s grandmother. It might be a leap, but in actuality, I am old enough to be his great grandmother too.

When the hell did that happen????

It just doesn’t seem real but there it is, the cold, hard truth.

This baby is my most recent nephew and he is awesome. So smiley and adorable.. 

I am an aunt to five and a great aunt to two and somewhere along the line the plans to be a mother disappeared from my womb, uh, I mean, world.

When I was a kid, a mom was all I wanted to be.

Well, not all…. I also wanted to be a veterinarian, a waitress, an author, a rock star and a babysitter.  Through many various career changes, I’ve managed to be three of the six.

I’ll let you guess which three.

But mom was the one I thought would be a given. Then the hands of my biological clock spun way too fast and eventually fell off the face of the timekeeper. I tried though, even as a kid myself. 

Always eager to put a full effort into my goals, once when I was eight, I attempted to kidnap a baby to bring home and raise as my own, with my mom’s help of course. I was in my safe little town, hanging out by myself at the bottom of my tiny, safe street where there were several shops to accommodate the tourists who pilgrimaged to our town in the warmer months; much like the original pilgrims who had the misfortune of showing up in the off season.

There was a baby napping in her carriage outside one store and no adults to be had. I watched as the baby woke up and checked out her surroundings. I went over and made baby talk and she gave me a gummy smile.

Still no parents.

I played peek-a-boo and the baby giggled. 

Still no parents.

I decided the best thing to do was wheel the carriage, baby and all, up the street to my house when a mom like person came out to the store and thanked me for keeping her baby company.

Damn! 

So close! 

Apparently, she had the mom skill of shopping for nautical tourist junk while also keeping an eye on her child. It was the 70’s but it still seemed irresponsible to my young brain. 

I wasn’t stupid. I knew the chance of being able to keep the baby wasn’t likely as I had yet to be able to keep any of the many dogs I also dragged home. But I just knew that one day, the authorities wouldn’t be able to find the owners and I would get to keep one. If it was possible with dogs, might it also be possible with babies?  

Alas, no.

I grew up and the opportunities to be a mom just didn’t present themselves. I am a great aunt though. Biologically, I am even a GREAT great aunt to two, so I think double greats are just, well, great! 

Back to this adorable little guy. Peter and I took a road trip vacation with the plan to meet him and spend time with his also adorable big sister.

We had other plans too, like relaxing and visiting other family members but seeing the kids was the most exciting part for me. Though not a mom, as an aunt I try to enjoy every second.

I had long accepted that there was no more biological clock for me. 

That is, until the evening before we set off where Peter hoped to be on the road by 5 AM and I asked him if he was setting an alarm.

“No,” he said, “my biological bladder will wake me up in plenty of time.”

And he was right. At 4 AM he was awake and then I was too. It seems my biological clock has been replaced by my biological bladder which is way less fun and fulfilling but in reality, now in my 50’s, is wicked important! 

Peter is also in his 50’s and it seems our biological bladders rule the world. I guess this is dating for Gen X’ers. We often meet in the middle of the night just outside my side of the bed for a quick hug before we blindly stumble to the bathroom, often several times in one sleep cycle. 

And you know how folks say that women who spend a ton of time together will notice their biological clocks tuning into the same frequency, causing their menstrual cycles to occur at the same time? So too with our biological bladders!

It is not just the middle of the night where our bladders sound the silent wake up alarm, and where one might argue that we just woke each other up crawling out of bed, but on the road trip too. We would drive for a bit, maybe cross a state line or two, when I would just be thinking it was about time to stop, when Peter would mention that we should look for a rest area soon.

Gone are the days when I didn’t have to worry about my bladder so much. Those days left at about the same time I stopped worrying about my biological clock.

Funny how that happens. 

At first, I thought my bladder clock was multiple sclerosis related.

When I was first diagnosed, I didn’t have a biological bladder clock so much as I had a biological bladder alarm that I couldn’t shut off. It would just ring, buzz or beep all day long, most loudly and obnoxiously at night.

Then my neurologist gave me some meds that have greatly quieted that annoyance. 

Now it seems I have a regular, old, aging biological bladder that has at least synched nicely with my sweetheart’s.

Thankfully, MS let me have a wonderful trip. 

The weather wasn’t too hot or too cold and being with family very young to mostly our age, the events and partying were kept a reasonable time structure MS and aging could handle. 

We rested. We relaxed. We visited.

And we had a great time.

The aging issue was the more prevalent of biological difficulties but with our biological bladders working together, we managed. 

Though there was the time when my brother, Peter and I took my niece to the park. With Peter appreciating my need to bond with my niece and my brother being quite the talker, he is my brother after all, they stood to the side chatting away while I did my best to keep up with the dear three year old while she ran from one play structure to another, bonding when I would finally catch up to her by insisting I push her on something, be it a swing or a seesaw.  At one point she turned to me and said, “let’s go exercise.”

What the hell had we BEEN doing??

Turns out there was a separate section of the park with outdoor exercise equipment for adults that she wanted to climb on. It’s probably not appreciated by the park users for kids to be in this section, but I figured screw it- I only see her twice a year and so I am allowed to let her do what she wants those times.

Plus, that section was a lot smaller, way less exhausting running around.

(How on Earth does her fabulous mother keep up? Oh right, she is about twenty years younger than me!)

Maybe there’s a reason why your biological clock starts to fail after a certain number of years.

But with age, comes wisdom.

“I think Daddy and Peter are lost. Let’s go find them. We better walk slowly so we don’t miss them.”

Maybe sometimes, clocks, whether biological or bladder, work just the way you need them too, whether you like it or not.

Falling Only Slightly Apart

Multiple Sclerosis hits the ground

Humpty Dumpty sat on a wall

Humpty Dumpty had a big fall

All the King’s horses and all the King’s men

Couldn’t put Humpty Dumpty together again.

(or something like this- nursery rhyme from my childhood)

Well, that’s just great for him…

What the hell was he doing sitting on a wall anyway? 

At least that’s what I thought when I was kid- probably less the “hell” part depending on my age at the time.

Now I don’t really care, especially since Humpty Dumpty is essentially an egg.

See, I have an egg aversion. 

Unless eggs are scrambled and covered with so much cheese, you don’t know they are eggs or put in a quiche and smothered with so much cheese they are totally unrecognizable or cracked and mixed into the batter of something delicious when baked, I don’t like them. 

I have had to learn to live with them a bit as Bella, Peter’s dog, gets a hard-boiled egg for breakfast each morning. I squirm and whine every time I see her eat it.

But Humpty Dumpty has gotten me thinking lately. Was he just clumsy? Perhaps he had multiple sclerosis? That would explain both his lack of judgement AND his illness induced lack of balance.

Like Humpty Dumpty I have had a few falls in the last few years for which I try to give excuses.

There was the “not paying attention, walking through a corn maze with Peter” fall. Damn corn stalk.

There was the “not paying attention walking on the beach with Peter when I tripped on a huge boulder partially covered by sand” fall.

There was the “so happy I actually climbed a mountain with Peter that I stopped paying attention walking down the mountain and slipped on a leaf covered trail” fall.

{That one was with Bella too. And Peter blamed my worn sneakers as not really being great climbing down a mountain gear.)

There was the “so excited to introduce Peter to old friends I slipped on the sidewalk” fall.

Now that I think about it, Peter has been with me during many of my falls- should I be concerned he’s adding a little nudge here and there?

No, that’s not very likely. What IS likely is that the universe likes to embarrass me and make me look as unalluring as possible.

There was the “enjoying the scenery so much while walking in the woods with Bella that I tripped” fall.

And there was the “being angry at something while walking Bella that I tried to make an angry cell phone call” fall.

Bella is great when she’s with me during these incidents. She strays only as far away as necessary to find a stick and gift it to me. Her remedy for getting back up is to play fetch. She swears it cures all.

(Interestingly, I have never had “a getting tripped over her leash when she crosses and uncrosses my path” fall but I’m sure it’s a fall just waiting to happen.)

There was the “opening concerning looking mail while walking back from the mailroom” fall.

There was the “so happy to be done with laundry that I was skipping while carrying a heavy laundry basket” fall.

There was the “embarrassed to be late to another author’s book talk so I wasn’t paying attention” fall but that one I blame on the library hosting the talk. There was a bit of raised cement that was not flush with the parking lot.

For like two seconds I considered legal action, but

I wasn’t hurtI’m not “sue happy” andIt seemed like a lot of work

Plus, I LOVE libraries.

Finally, there was the “totally overwhelmed and sad about to scatter my sister’s ashes in a park” fall where I fell off a slightly raised boardwalk. 

Peter was there for that one too and for context, it was only a small amount of my sister’s ashes in a tiny urn that we thought should be scattered in her happy place. I can’t tell you where that happy place was because I’m not sure it was totally legal to scatter anything there.

Since I am not an egg, by some miracle I haven’t cracked anything during these vertically challenged incidents. I’ve gotten bruised though. I have bruised my body and bruised my ego, but haven’t suffered an actual break, yet.

All these incidents were in the last five to six years, and it seems like a lot.

Is it?

When do you know you are falling too much? 

Should I just chalk them up to clumsiness?

I once worked with a lovely woman who liked to call me “Grace.”

Or is it MS and if so, what should I do about it?

My first neurologist told me MS wasn’t the reason why I was so clumsy. Though she also told me that not qualifying for secondary health insurance with the part-time work she was recommending was NOT a reason to file for disability, so what did she know? 

I guess I will know for sure when I fall during the observational walk down my second neurologist’s long hallway, hopefully not for a while.

I do have balance exercises a trainer taught me. They are easy enough to do every time I do my weak knee physical therapy exercises, which is almost never.

I have wondered if it is just a matter of not paying enough attention. My multi-tasking skills were the first thing to go when I was working full time while living both unknowingly and knowingly with MS. I have always been a good walker and never had to think about it too much. Is that what this is about?

Maybe I should watch where I am going more and not open the mail or skip carrying laundry while rushing to get somewhere?

Maybe I should stand still while making proper introductions or keep an eye on my path when coming down a mountain?

I guess it is worth a try, with the goal of stalling the need for walking aids as much as possible.

Alas, it is a New Year, and a lot of the stress of 2024 will hopefully stay in 2024. I can work on paying more attention when I walk and keeping up with my balance exercises AND my knee exercises.

And like somebody should have told Humpty Dumpty, stay away from sitting on high walls.

And, more importantly, stay away from eggs…

12 Days of Christmas, MS Style

A Multiple Sclersosis Christmas carol

Happy Holidays my Friends!

Here is a gift for all of you that is not quite coal, but not a new luxury car either.

I misspoke in my November blog when I said I was taking down my Feedblitz subscriber list that automatically sends my latest blogs to a subscriber’s email inbox. After some consultation with my fabulous web guy, I will continue to have a subscriber automatic email list. But in January it will be provided by MailChimp.

That’s right, if you get an email from a cute monkey it may actually be from me. Which is ironic as when I was a kid, my sister’s told me I was adopted from a chimp family.

So in a way, it’s very possible my new blogs will be sent to you from my primate ancestors!

Monkey in the middle anyone?

Now for a holiday blog from days gone by…….

I love Christmas. 

I love Christmas songs.  

But personally, I don’t love the 12 Days of Christmas carol.  I find it obnoxious.  Recently however, I learned that it was actually an important and secret song. 

Folklore has it, that this carol was written in the late 1700’s in England as a code to help children study their catechism as Christianity was forbidden at the time.  A partridge in a pear tree represents Jesus Christ, two calling birds represent the apostles Peter and Paul, three French hens represent the Holy Trinity, etc. 

Weird, as my grandmothers always taught me that the Holy Trinity was Portuguese not French, but what can you do?

As a devout Catholic who totally gets the reason for the season, I feel bad calling the song obnoxious when is seems like it should be something to be appreciated, even just slightly. 

Kind of like how there was a brief time when I actually appreciated multiple sclerosis.  And by brief I mean minutes, no, actually seconds. 

This was when I received my diagnosis after I had diagnosed myself via the internet as having either early onset Alzheimer’s disease or acute and untreatable insanity.  MS was actually a relief at that moment. 

Now it is just absolutely obnoxious and that is on one of its very rare good days.

Since I am in the Christmas spirit all year long (but now that it IS Christmas, it is ok to be in the Christmas spirit) I thought I would combine the two. 

So here friends, is a multiple sclerosis Christmas carol, obnoxiousness and all.

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? 

NOT!

Ahhh friends, a very healthy and Merry Christmas to you all. 

And for my non- Christian friends, may you have a healthy and happy season of all things good and not MS related!

                                                                           *******Note*******

I wrote this particular blog over the weekend of 12/13/13-12/15/13- I swear I did.  On 12/18/13 a friend and fellow MS’er posted on Facebook something similar that was attributed to the Must Stop MS Support Group. 

I am very, very sure I didn’t copy them but it is possible that in years past I got this idea (the 12 Days of Christmas MS version) from somewhere else and just don’t remember it.  

I would like to think instead, however, that great minds think alike! 

If that doesn’t work, I will blame using an idea used before on MS. 

Yea, that’s it. 

If I subconsciously stole this idea it is all MS’s fault!

Finally- look for future emails from this guy or some relative like him in January!!!