Yvonne deSousa's Blog, page 2

Turkey Mania and Other MS Ravings

Musings for Thanksgiving and a blog update

As turkey day nears, my thoughts are as rambling as the flock of wild turkeys in my backyard. One afternoon I counted 18!  I thought, “isn’t that the way? The more turkeys you have the more useless they will be, just when you need turkeys!”

Rumor has it that wild turkey isn’t as good as farm turkey for turkey day and let’s face it, I’m not about to turn my small apartment into a seasonal slaughterhouse for the holidays.

Can you imagine the mess?

But I’ve enjoyed following them from my window and I’ve noticed some comparisons between them and people.

For example, they pretty much want nothing to do with you unless you get too close and then they stand up straight and puff up their feathers to appear much larger, stronger and cooler than they really are.

It reminds me of some human turkeys I know. 

One developed a leg injury and was shunned by the others. It was heartbreaking to see him limping along by himself. But then, two others decided to keep him company and like the good turkey friends they are, have stayed by his side as they wander together.

Thank goodness the disabled turkey has some dear reliable turkey friends, just like I do!  

Dear reliable people friends I mean.

Considering so many turkeys just as t-day nears leads my mind to other ironies, especially those of the medical kind.

I’ve lived with multiple sclerosis for ten years now and here are some of the most perplexing paradoxes.

If you forget to bring decent reading material with you to a doctor’s appt, the longer you will have to wait. Probably alongside a table with dusty editions of Scientific American from the 1990’s. BUT, if you remember to bring a good book, or even a magazine article you are looking to finish, the medical assistant will call you in as soon as you take off your jacket.

Similarly, if you bring good reading material to your infusion, that will be the day it is very loud in there and impossible to concentrate. If you don’t bring anything good to occupy your mind, it will be the day it is super boring in the infusion center, and yet, you will be too restless to nap. 

Not to be outdone during intravenous therapy, if you bring your own snacks, that will be the day they have lots of delicious treats to nibble on. If you don’t bring your own snacks, you will be lucky if water and stale pretzels are available.

The more you need insurance, the less coverage you have. If you are lucky enough to have a great policy, you probably won’t even suffer a runny nose. Like, ever…

Or at least until you lose your insurance.

If a new ailment or symptom of a pre-existing ailment does arise, it will probably disappear by the time you get to your doctor. If you choose not to make an appointment, you will be stuck with whatever that thing is forever.

Case in point, being an MS’er and/or just generally clumsy, I recently tripped over nothing and fell flat on my butt and stomach. I stood up and experienced a little soreness and a lot of embarrassment.

The soreness was on my right side and persisted, but not horribly. I thought maybe I broke a rib which would be interesting since with all my medical issues, I have yet to break anything. I had a previously scheduled appointment with my primary physician’s assistant and told her about it. 

She agreed that I may have a broken rib and there really isn’t much to do but take OTC pain meds and wait it out, unless I was having trouble breathing. She said she could order an x-ray if I wanted, but it wasn’t necessary. I told her it was ok. The last thing I needed was yet another appointment. (I’d barely gotten in two pages of the Lisa Marie memoir while I was in her waiting room.)

The next day I went on a healthy walk and my breathing was a little strained. Concerned, I called the referral line and left a message. 24 hours later a girl who sounded like a high school intern called and said the referral was made but she didn’t know where or when and maybe the x-ray place would call me to schedule, but she wasn’t sure. 

No disrespect to high school interns but shouldn’t a referral person have actual information about a referral? 

Now that the soreness is subsiding, I will probably get a call from the x-ray people. I know for a fact that if the soreness WAS getting worse, I would never hear from them again. As I type this blog, I seem to be breathing so I guess all is well.

Here’s another irony-the more medications you take, the less symptoms you will have of the condition you are taking the medications for….

Oh wait, maybe there’s a reason behind this one.

MS bloggers are not exempt from these paradoxes. The more ideas for a blog you come up with, the less time you have to write a blog.

And MS possibly aside, I have also discovered that the more I want to procrastinate, the less I will find with which to procrastinate.

I love a big cup of tea in the morning and when I have time to linger over it, there is nothing interesting in my emails or on Facebook to check out while I am drinking it. But the mornings when I have to rush to one of the aforementioned appointments, forget about it- everything on the internet will need my attention and be something worth responding to.

And one dilemma of ironies is also present for every woman I know. The more bad hair days you have, your hair will turn into beautiful, golden locks the day of your haircut appointment.

Even if you’re a brunette. It never fails.

What’s a woman with MS who blogs to do? 

As I get ready for Thanksgiving, I guess I will blast Alanis Morrisette’s ‘Isn’t it Ironic,’ which actually isn’t very ironic, and take a lesson straight from my own backyard.

Like the limping turkey, I am most grateful for the friends that stay by me during ironic times, MS or not!

Happy Thanksgiving to all of you, and your families and friends.

Maybe not so much happiness for your turkeys though…..

FYI

Dear readers. I am also very grateful for all of you!

But in these lean times I’m discovering that my website subscriber service is not really paying off. Because of this, I have decided to suspend the service on 1/15/25. This means that starting in January, subscribers will no longer get my blog automatically sent to their email inbox. However, I will still post the blog on my website Facebook page and will have my own email contact list. If you would like to be automatically contacted when a blog is posted, please like the       facebook.com/YvonnedeSousa/website          or send me a private message with your email through the contact tab above. My deepest apologies to newer subscribers.

You have probably noticed repetition in my blog postings. Sometimes my brain is too tired, life is too overwhelming in ways both happy and sad and multiple sclerosis is too quiet to come up with new material. MS being too quiet is one of those good problems to have, but it makes for boring or nonexistent blogs. So future postings may continue to include repeats, but rest assured, my mind will continue to conjure new content whenever possible!

Do you have any readers in your life?

If so, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis and Shelter of the Monument: A Provincetown Love Story both make great holiday gifts!

Brains Still Scary, Emotions are too

An October tradition and a tribute

In last month’s blog post I started by saying that September was kicking my butt. What I wasn’t ready to share, I will share now.

The biggest reason September was tough was because my family lost my oldest sister. Laurie J. deSousa passed away at the age of 63 after struggling with multiple sclerosis and a rare skin disorder called Darier’s disease.

My family and I were/are a bit overwhelmed and so autumn this year has not been very kind. But Laurie was born in October, near Halloween, and loved the holiday. She had some amazing costumes.

Thus, she was particularly fond of this, the second blog I ever wrote, Scary Brain, Scary Movie (2012). It has become a tradition to repost this blog every October because it was not only Laurie’s favorite, but the favorite of many of you too. But I post it this year specifically in Laurie’s honor.

Of course, I have great pictures of Laurie dressed as a green M&M one Halloween and as a genie another. Can I find them? Of course not. So we will have to get by with pictures of other images for this year’s Halloween blog.

My best to you my readers.

And mostly, rest in peace my dear sister- the pain and struggle are now gone for you and we who love you take great comfort in that.

Scary Brain, Scary Movie

It is the afternoon and I am shuffling around my house, trying to focus. I have my lists; all the MS helpful tip books suggest lists.

There is the to-do-this-week list.

There is the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.

There is, of course, the things-I-should-try-not-to-forget list.

But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.

So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo.

But then I see my computer and try to remember if I responded to that important email I received this morning. Yes, I see now that I did but there are some more emails to read. I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead.

What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.     

My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water. I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again.

And three plates, two glasses and three minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom. How on earth am I supposed to drink eight more glasses today? I might as well move into my bathroom.

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.  

Figures.

Leave it to me to equate my multiple sclerosis to a horror movie.

But is The Fog the right horror movie?

I am wandering around lost in my own little world and not feeling quite right- almost zombie like.

Yes, zombies, zombies are a good description. I am an MS zombie for sure.

I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours.

Then it hits- it is not The Fog but Night of the Living Dead.

Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.

Or is it?

Sometimes I just want to scream.

Actually, I just want to scream a lot.

Maybe my MS really is Scream?

I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?

It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”

I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the illness.

I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.

I remember the all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”

My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants.

Yes, Psycho is the movie. That is the one that most describes my MS.

And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging.

Yes, Psycho feels right.

Bathroom again, but I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling?

And that one, the sudden sharp, jab in my left arm?

And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise?

And here are those weird ear noises again- has my body been taken over by aliens?

That’s it, Invasion of the Body Snatchers. That is definitely the horror movie that best describes my MS.

It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun.

Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your MS was a horror movie which horror movie would it be???????

Feeling Icky All Over Again

A multiple sclerosis ditty for the icky days

Not going to lie, September has been kicking my butt this year. Which is upsetting in many ways but one of those ways is the added bummer that I usually love September. Me and September used to be best buds! Not the September of 2024 though. Just as the dreaded humidity of the summer started to abate, life chaos ramped up.

Still, I insist on maintaining my humor and it is STILL very helpful in dealing with bad times. So while I may not be up for writing a new blog, I am taking comfort in an old one. A blog about feeling icky for when I, and you, feel kind of down and just, plain old icky…

I wrote this many years ago and the toddlers mentioned here are now happy, healthy preteens. But the ickiness is the same.

Happy autumn my friends.

I hope you don’t feel so icky. But if you do, I’ve got a song for you!

What is with me and show tunes lately? I don’t even really like show tunes yet I can’t seem to get them out of my head.

Just a few weeks ago I posted a blog based on the song A Few of My Favorite Things and now the song I Feel Pretty from West Side Story is lingering around. This is especially weird as  

1. I don’t even like that song and

 2. I really, really don’t feel pretty at all. 

On this family trip my get fit plan has gone right out the window. And, as during the packing for this journey my suitcase was too filled with toys for the little ones to add any of my nicer clothes, I am schlepping around in my least pretty wardrobe possible.

Luckily, kids don’t really notice what you are wearing. And while family may notice what you wear, they aren’t really supposed to care. 

So it doesn’t matter that I don’t feel so pretty.

So why is that stupidly annoying song hanging around my musical brain? You would think the songs that would be lingering might be Rockin Robin or Riding on a Train, both songs that blast frequently from two of the kid’s toys. But no, I Feel Pretty it is, over and over again…..

To help combat this frustrating ordeal, I thought if I actually sang the song, maybe it would go away. But since I don’t feel so pretty, I may have to change the words to be in keeping with how I really feel. So, on a day after one of my blasted shots, where the kids have a prior engagement and I am in a rented home with my mom who isn’t feeling well and my sister who insists on watching bad TV, here is my MS/vacation version of I Feel Pretty.

I feel achy, oh so achy

I feel achy and shaky and uptight

And I pity the person who bugs me tonight

I feel icky, oh so icky

It is sickly how icky I feel

And so icky that I can hardly believe it’s real

(Since the state we are visiting is on the west coast and it is hotter than it should be in December)

I feel sticky, oh so sticky

I feel sticky and sickly and tickly

It is a wonder if I will sleep tonight

(And since the state we are visiting is covered with cottons fields that we all seem to be allergic to)

I feel itchy, oh so itchy

It is witchy how itchy I am

A very itchy and bitchy ma’am

See the grouchy girl in that mirror there,

Who can that crab apple be?

Such an achy body,

Such tired eyes,

Such a lazy gait

In another state I must be.

I feel sleepy, oh so sleepy

So sleepy and weepy, it’s not right

And it isn’t even close to night!

(I actually did some research for my little song parody and it turns out, I don’t even have to change any words of Part 3 of the chorus for it to fit into my own little MS away from home song.)

It must be the heat,

Or some rare disease,

Or too much too eat,

Or maybe its fleas!

I feel icky, oh so icky

It is sickly how icky I feel

And so icky I can hardly believe it’s real!

Don’t worry friends, I just wrote this little ditty to do anything to get rid of this song. If my version didn’t work, the effects of the shot are starting to let up, the MS MonSter is starting to head back into its cave, and the children have time on their dance card to hang tomorrow which will be a straight shot of adrenaline and joy.

I don’t know that after chasing and playing and hanging with them that I will be feeling pretty tomorrow either. 

But I will definitely feel less icky.

Maybe Some Summer Lovin After All?

An MS look at bad summers past

If you happened to catch my July blog, All in with Bears, you know that this summer has been a little overwhelming. Despite that fact, I HAVE had some fun, exciting adventures.

I saw the Rolling Stones for what could be The Last Time.

…this could be the last time, this could be the last time, maybe the last time I don’t know…oh no..

I visited Block Island and sailed from there to CT during a tiny storm.

I went dancing on a busy, fishing pier.

I went boating with special people and met some special whales- some a little closer than I would have liked.

And, I got to visit with dear friends and relatives.

This summer was BUSY but not in a completely bad way and I am super grateful for that.

Still. as the busyness continues, I need to repeat an old blog for August. And even though this one was written at the start of a summer long, long ago, some of it’s stressors remained this year and so I thought I would share it with you.

As we head into autumn, let’s try to find the fun of summers past and hope for good summers to come…

No Summer Loving

An MS summer dirge

Summer lovin, had me a blast

(NOT!  Unless it was a nice big blast of cool air from my A/C)

Summer lovin, happened so fast

(Don’t I wish! These days are dragging already and July’s not even here yet)

….Tell me more, tell me more

Well, since you asked….

(Italicized words are lyrics from “Summer Nights” from the musical/movie Grease.)

Vitamin D sparkling directly from the sun is supposed to do wonders for people living with MS. 

(There’s a reason orange is the official MS color.  Well, that reason and the fact that all the other cool colors were taken by other important causes.)

Despite this, summer and I are not friends.

The fact that I don’t like summer (and really, really don’t like spring because it’s a long drawn out time where the rest of the world is getting ready for summer,) is unpopular.  For most people, July and August are their favorite months of the year. 

Please allow me to state my case on why I disagree.

First of all, summer is hot. Only in the insanity that is life with a chronic illness would something that is ultimately good for you, (ie natural vitamin D,) also make you feel miserable.  And heat does make me miserable my friends, trust me.

If you don’t believe me, ask the cute UPS driver who remarked what a nice day it was when he dropped off my monthly meds.  My vicious reply so frightened him he hasn’t been back in days! 

Of course, he’s not due back until next week but still, I was pretty scary that 78 degree day when he stopped by.

Then there are the bugs.  I try to stay out of their way, “you stay out of my house and I’ll stay inside and let you wreak havoc on my yard.”

But they refuse to cooperate and it’s hideous. 

Earlier this month I went to a graduation party where everything was covered by these furry, disgusting caterpillars. I guess this is a prevalent year for them and we only have to wait for a bit and then these horrifically gross creatures will turn into gypsy moths- oh the joy.

Not long after that I went to remove the change in my pocket and I felt something squishy.  I pulled my hand out and saw that the fingernail of my middle finger had impaled a small green bug that had managed to squeeze his way into my pocket.  The head part of it’s body was on one side of my fingernail and the rest of him on the other.  I’m still cringing about that little foray into the blissful days of summer.

And then there are the mornings where we should delight in waking up to cool breezes from windows left open all night.  That MIGHT be lovely except that this is also the time of year that people get yard work done. But, they also want to enjoy the beach and so the yard work must be done super early.

Hence it was that the lovely sunny morning turned into a headache and then a body ache of ultimate proportions.  It was 6:45AM when my neighbors landscaping crew arrived.  Right outside my window one guy started the mower and the other guy started the weed wacker.

 (Weed wacker would be a funny name if it’s screeching noise wasn’t so dreadfully painful to my super sensitive ears.) 

Both guys had headphones.  I did not and the motor sounds pierced directly to my brain.

When the landscapers woke me up it was the middle of the night still. Due to my bladder issues I had only gotten five of my needed 10-12 hours of sleep and the day was expected to be a busy one.  I closed the window and covered my head with a pillow.  Right away it got hot and added additional misery. 

I thought of calling the police as there must be an ordinance against this type of work this early but I worried about being THAT neighbor.  You know the one-Mrs. Kravitz from Bewitched or Mr. Roper from Three’s Company.  Or even Mille from my own childhood neighborhood; the cranky lady who kept all of our balls and Frisbees if they landed in her yard.

Of course I keep ear plugs for times of travel as airplane noise is also painful.  And of course I was out of them. I tried cotton balls but they didn’t work. 

The best solution was a brilliant one.  Turn on my A/C and that steady sound will help drown out the horrific racket outside as well as cool me off.  But since my head had already been affected so badly, I didn’t think up that idea until twenty minutes after the landscapers had finally stopped, over an hour later.  

And just like that, my summer day sucked and was complete with pain in the brain, no thinking skills to speak of and just over all extreme fatigue-riddled, summer induced grouchiness.

All of the above just reinforces my dislike of the season. And it bothers me as I remember how much I enjoyed summers past.  It used to be that I could function on only a few hours of sleep, hit the beach, work at night, go out drinking with my friends and repeat it all the next day. 

I miss that. 

I miss the days when I wouldn’t dream of missing fireworks- bright colors in the sky with explosive sounds, cool!  Now I could care less.   And that just doesn’t feel so good.

Yes my friends, only a condition like multiple sclerosis can turn a fun song from a popular, campy musical into a ditty of misery.

Sure I could lament how the bad things of summer have started to beat me up in recent years and that is true.  But what I’m really struggling with is the mourning of fabulous summers past.  

Even while I want to skip the fun invites I don’t want to skip them.  I feel guilty for skipping them, and get mad at myself over and over again. 

It’s a vicious cycle. 

And so, with all things MS, I try to balance. 

Maybe I’ll skip some invites but take part in others. 

Maybe I’ll get extra strength bug spray and venture out once in a while. 

I do live near lots of beaches- maybe I’ll go to one and cool off by jumping into the ocean, even if it means that is all I do that day. 

I’ll weather (get it, weather,) these months as best as I can even if I do enjoy changing the lyrics to songs about summer and get irritable every once in a while.

Seems like that’s what MS is for….

But I’m definitely getting noise reduction ear muffs!

Thank you for reading my friends! I hope you have had a good summer and wishing you the best start of autumn possible!

All in with Bears

An MS whine without wine

I’ve been thinking about bears a lot lately. And it is not because it was just bear week in my hometown- a lovely week catering to Provincetown fun in the sun with the loveliest of bear visitors.

Nor is it because I miss the cool temperatures of the fall when my favorite bears, the Boston Bruins, take the ice once again.

It is because I am a bit overwhelmed and all I can think about is the children’s book- The Berenstain Bears Too Much Stuff.

There is too much stuff in my world this summer and it is starting to do me in a bit.

First- bugs. I have had an infestation of earwigs. Actually, it’s more like I have earwigs coming out of my ears.

Ok, now that I have totally skeeved you out I can’t be the only one who has ever said that. They are redoing the landscaping around my complex and the earwigs have been rudely displaced. Plus, it seems they hate the humidity too, so are seeking their own comfort by my AC, without even helping with the electric bill!

It is not just me who is grossed out about this. A friendly neighbor who is dealing with the same thing kindly brought me a gift- Soy Sauce.

Reduced sodium soy sauce to be exact.

He admitted that he knew this was a weird gift but explained that his research showed that earwigs love the smell and mixing soy sauce with a little olive oil in a small bowl will attract them and then they will get stuck in the mixture, drown in it leading to a pleasant death for them and then I can just rinse them down the sink.

Eeeeeww.

No.

I appreciated the thought but I’m not about to become a serial earwig murderer. What will they call me- the great Soy Sauce killer? Yikes!!

Just as the new landscape project settled down and the earwigs found new dirt to cool off in, tiny spiders started hanging out around my computer, dropping down to Google whatever spiders are curious enough to Google about. And they are so tiny they must be baby spiders and so I know they are definitely NOT helping with the rent.

They would be too small to worry about, but they add to the floater problem and every little spot out of the corner of my eye is now just to be as likely to be an invader rather than an old age trick of the eyes.

There is too much weather- and gross sticky not fun weather. Bring on Bruin Bears! I know they only play on nice, cold, frozen ice.

There is also too much scary politics. I want to avoid it, but it is everywhere!!!

But mostly, there is too much medical.

First my mom fell and broke her right ankle; not enough to need surgery but enough to need a boot, rehab and more medical appointments. Not to be outdone, and in the world of Ripley’s Believe It or Not or in you just can’t make this up, two weeks later my sister also fell and broke her right ankle; not enough to need surgery but enough to need a boot, rehab and more medical appointments.

No, I did not just make an MS brain fog mistake and type the same sentence twice.

Then, a recent MRI showed some progression which has led to my beloved neurologist recommending switching from my DMD in pill form to monthly infusions of Tysabri.  He made it sound easy and I trust him completely. Then he sent in the infusion coordinator who talked about testing, side effects, appointments and the need to cancel appointments with any, even the most minor of infections. 

Covid? Need to reschedule the Tysabri infusion.

 UTI? Need to reschedule the Tysabri infusion.

Sniffles?

Well, you get the idea…

Since my neurologist told me this I have been contacted and told to set up portals with the new drug company, and the new patient support company.  Too many portals…

And like the Grinch, another famous children’s story book character, “Oh the noise, noise noise….”

Text messages, phone calls, new passwords, emails- all for medical appointments.

My neurologist’s office did all three to confirm my appointment, sometimes multiple times. 3 text messages, 2 emails and one phone call. Is it because they know multiple sclerosis causes brain fog which means I can easily forget my appointment? Don’t they also know that people with MS get easily overwhelmed?

Just in the time it has taken me to write a rough draft of this blog I have received 3 phone calls, 2 emails and 6 texts, all for medical stuff for me or my mom. It feels like it will take days to catch up.

I have another doctor’s visit scheduled in 3 weeks and they have already started the confirmation calls. My eye doctor’s appointment next week has already sent two emails explaining their Covid protocols.

It is just too much!

I turned to the comfort of the Berenstain Bears and their Too Much Stuff book. And, as it turns out when I was doing my blog research, there was NO SUCH THING! The Berenstain Bears have a book called Think of Those in Need which has a heading of “Too Much Stuff” but they are talking about property that can be reused, repurposed (are they the same thing?) and thus given away. The book has nothing to do with “Too Much Stuff” as in being inundated with being overwhelmed.

(There is a kid’s book called Too Much Stuff by Emily Gravitt which does have a teddy bear in it so I’m going with it.)

The Berenstain Bears do have books called Too Much TV and Too Much Junk Food. Which is completely ironic as what is the best release from too much stuff and too much stress?

TV and junk food are my go tos!

When I want to shut down- junk TV works for me.

(Except for those Lume commercials. Really? What a way to make women feel inferior- they must have every part of their body smell like a bed of roses or they are gross and stink. And the ads for Lume are constant and everywhere!!)

And say what you want about eating healthy and being healthy, but when you’re rushed and overwhelmed my local convenience store has the cheapest snacks that can easily substitute for lunch, or breakfast, or hell, even dinner if necessary. 

It is enough to make an MS’er resort to giving in and drowning her sorrows with a nice glass of wine. But even that doesn’t work so much anymore. My taste buds are changing, and it is also too much. I have lost my taste for wine while my taste to whine increases!!

What can I do? 

Maybe I will research the internet to see if the Bears have a book titled Too Much Whine?  If not, maybe I will write it.

In the Fall, when the bugs and the humidity go away, hopefully the politics have calmed down and all my appointment reminders have finally shut up and my favorite bears will play once again.

Dog days of summer indeed! 

This July, I am relying on the support and promise of bears…

PS For more Bear/ MS analogs check out my prior blog post, Bipolar Bear.

Another MS Doodle Dandy

A second glance at some multiple sclerosis patriotism

I confess, I have no new blog to present to you this month. So I went looking for an older post and found this one, which I don’t think I have ever repeated. And, with the 4th of July holiday in just two weeks, and the public service announcement I am proud to share at the end of this blog, I found this old post quite fitting! I hope you enjoy it and stay tuned to the end.

With the exception of my late teen/early 20’s years, I have never been much of a rebel. I grew up with this intense need to please and so when someone tells me to do something, I do it. 

I floss daily. 

I get my car’s oil changed every 3500 miles.

I pay my taxes BEFORE April 15th. 

I wait ten hours after eating before swimming.  

About the only rebellious thing I do these days is consume raw cookie dough against the advice of both the raw dough packages and that of my older sister. But I try to do that in the privacy of my own home so as not to offend anyone and I do feel bad about it, kind of.  

This sense of doing the right thing carries over into being a good citizen, even when MS makes me feel wiped out and yucky. 

I suppose if I was really a great citizen I would have skipped my brief rebel years and joined the military. The only problem with that was the fact that I am total wimp and wouldn’t have lasted one day in boot camp. So hats off and deep, deep gratitude to those brave folks who defend our country! 

The least I can do to be a good citizen is to vote. I understand how government works; I watched Schoolhouse Rock when I was kid. 

(I’m still totally furious that Conjunction Junction beat out I’m Just a Bill for the number 1 spot in a special featuring all the episodes. I demand to know who voted for that!)

So on primary day I put on my goody two shoes and headed off to the polls. It didn’t matter that not many people bother to vote in the primaries. I was going to because it’s a privilege and it’s my patriotic responsibility to honor that privilege. 

I even did research on who to vote for. And by research I mean I asked my very smart friends who have ideals similar to mine who they were voting for and then I voted for that person.   

(And I did watch a commercial or two- I try to take this voting thing seriously.)  

Luckily, my town is small and since it was only a primary the polls weren’t too packed and I didn’t have to stand too long to cast my ballot. But my civic duty was not done for the week. The next day I had jury duty.

Honestly, I wouldn’t mind serving on a jury. I actually think it would be interesting.  I just can’t imagine any lawyer would trust me on a jury with all of my cognitive issues and my extreme fatigue. But being the good citizen that I am, I would let the court make that decision. I was happy and honored to do what my government asked of me. 

The problem was, this was a lousy week to have to jury duty. I had a lot going on and precious few non exhausted hours to do them in. Of course, I didn’t know this would be the case when I got my notice, the notice that gives you the option of postponing jury duty. Being on the road by 7:15 the morning of, standing in long lines to be processed, and waiting hours in a hot stuffy courthouse was just not conducive to my life and my MS that week. 

But it was what it was and I would just have to do my best. I took comfort in the fact that I had one of those ‘call the day before’ notices. Every time in the past when I received one of those, I never had to actually go in. I would call the automated line the day before and an automated voice would tell me I was excused. That’s what would happen with this jury service, it just had to. 

When people who don’t have MS say they don’t understand ‘brain fog’ or ‘cognitive difficulties’ you are usually too fogged to explain it to them. So allow me to do it for you. The following is what brain fog looks like:

At 4PM on the day before my service I called the courthouse. The instructions were clear- do not call even one minute before 4. To be on the safe side, I waited until 4:02. 

The automated voice thanked me for being a good citizen and calling. Then it informed me that all jurors with groups numbered 0000-0058 had to report. I had been assigned group number 0060.  I had to go.

I was distressed. I absolutely could not believe it. How on Earth would I get through this crazy week with jury duty smack dab in the middle of it?  

I thought perhaps I made a mistake. I called again. And again, was thanked for my service and told that all jurors in group numbers 0000-0058 had to report. I was resigned to my patriotic fate. I would just have to suck it up. 

I postponed that evening’s shot so I wouldn’t face the horribly achy side effects during jury duty. 

I went to bed super early. 

I set two alarms to get up on time. 

I stopped on the way to the courthouse to get some much needed caffeine.

And I stood with my burning legs in the slow check-in line, chatting with other potential jurors. 

When it was my turn to hand in my summons, the court officer pointed out that I hadn’t needed to report at all. WHAT?? 

Didn’t I call the automated number, he asked? 

“I did. It said all jurors with group numbers 0000-0058 had to report. So at number 0060 that means me, right?”

 The frustrating thing about ‘cog fog’ is that once your brain makes a mistake, even a simple counting mistake, your brain then accepts that mistake as correct. So even though I have known how to count since first grade and I called TWICE, I still screwed up. 

I’m such a dedicated citizen that I showed up for jury duty when I didn’t even need to. 

The court officer told me that my service was complete and kindly sent me on my way, probably noting my name and number for next time to tell the judge “this chick is way too dumb to serve, she can’t even count to 60.” 

The good news was that I got back the badly needed day in the middle of the week.

The bad news was that I was so frustrated by my mistake that I wasted a lot of that day stressing over it. 

Before I knew it the night passed, and when I turned on Facebook the next morning I was reminded of the date.

It was 9/11, a date no American will ever forget. 

The date got me emotional. 

 It got me sad. 

And then, it got me proud. I started thinking about the amazing country I am lucky to live in. 

I started humming Yankee Doodle Dandy. 

Here’s another way brain fog works, your mind starts wandering down seemingly insignificant paths for seemingly no apparent reason.

I looked up Yankee Doodle Dandy. 

Did you know that doodle was actually an insult? The phrase Doodle Dandy was meant to insult the earliest American patriots, doodle meaning dumb. But they chose to adopt the phrase instead of being insulted. 

And so it was with me-MS dumb or not, I’m happy to be an MS Doodle Dandy; an MS Doodle Dandy who’s ready for jury duty whether she’s wanted or not.

PS If you are humming Yankee Doodle right now then you are a true patriot for sure!

FYI/PSA I get contacted regularly about putting information on my blog and usually I don’t comply. Mostly these requests come from private companies that claim they can save us from the multiple sclerosis life we lead. But this request was different. I was contacted by someone representing the Paralyzed Veterans of America Multiple Sclerosis Committee asking me to help get the word out to veteran’s with MS that there is help available. It turns out there is an extremely high rate of MS among veterans. I had no idea.

If you are a veteran living with MS, first, thank you for your service! I am so grateful to you. Second, please know that there is a resource that understands the particulars of what you live with day to day and they can offer support. You can learn more through this PVA website

To the rest of my amazing readers, I am not asking you to donate as I know times are hard for all of us. BUT, should you have something you can offer to this great cause, you can also access the above website for information. More importantly, if, as we move in our various MS circles, you encounter a veteran with MS not familiar with this resource, please provide them this link as well.

pva.org/research-resources/multiple-s...

Again, thank you to all who have served and to all of you who read my blog!

Knot All Tied Up

MS and the art of the bowline

Why was the rope so popular at the party?

Because it knew how to hang

Why did everyone think the knot was inappropriate?

Because it was too twisted

Why do ropes make good detectives?

Because they unravel mysteries

A rope walks into a bar and orders a drink. The bartender kicks him out as the bar doesn’t serve ropes. The rope goes outside, ties itself up and walks back in. The bartender asks, “aren’t you the rope I just kicked out?” The rope replies, “Nope, I’m a frayed knot.”

I am a frayed knot for sure. Totally twisted but not in the way I am supposed to be, and it is freaking me out!

See, my special guy Peter bought a sailboat. He has spent much of his life sailing and decided to bite the nautical bullet and get himself his own boat.

As the granddaughter of commercial fishermen who loves heritage and a great seafaring story, I was on board. I have a thing for sailors or, at least, fishermen. (He fishes too-lucky me!)

But my experience at sea mostly involves annual parties on rusty, creaky fishing draggers or fun excursions on little speed boats. I have never really worked on the water, but I do enjoy it and have never gotten seasick. 

I have learned a thing or two from other captains in my life. It was my dad who taught me that the only way to get a speedboat started was by cursing at it in Portuguese. If you didn’t know that, then consider this my gift to you.

Filho do puta is especially good to get your outboard engine to tun over.

I also learned from another captain how to spot whales in the ocean.

“If a huge mass three times the size of the boat suddenly leaps out of the water, it may be a whale.”

The problem is that I have no sailing experience. There was a kid’s sailing program in my little town, but I was always too busy working to go to it. And by working, I mean selling shells to finance my penny candy habit. Those jawbreakers and smarties don’t come cheap.

Penny candy indeed.

Still, I wanted to learn and last summer I was able to experience some sailing. Peter’s boat is named A Good Hair Day, and it is a J24. I learned that it is 24 feet in length which is a wicked coincidence since it is called a J24.

Funny how that works out.

I went to the club where it lives and personally put it in the water, using a crane no less, all by myself!

I did this by pushing the little button on the crane when the guy at the club told me too. AND, I stopped pushing the button when he told me to stop.

I even steered for a bit when we took the boat on the bay. A Good Hair Day has a flaw that instead of a ship’s wheel like other boats it has this long stick instead. Weird. And Peter calls himself a sailor… 

I guess it works though because we didn’t hit anything despite the fact that Peter kept telling me to move the stick in the opposite direction or where we were trying to go. He definitely needs a ships wheel, maybe for his birthday.

The problem came when I was at the dock, holding the line which I already knew was to keep the boat from drifting away. Peter’s brother, also an experienced sailor, tied the bow line and I told him that he needed to tie the stern as “Peter hasn’t taught me knots yet.”

“Taught you knots,” was his brother’s reply, “didn’t you grow up on the Cape? You don’t know how to tie up a boat?”

Ahhhh….. he had me.

In my defense, I have a much younger brother who is a natural mariner, very smart and was put in charge of all important boating responsibilities.

He was nine.

So perhaps I needed to learn more about sailing than just pushing a button or pulling on a stick.

This spring I want to learn how to tie knots so I too, can tie A Good Hair Day’s stern line and maybe, if I get really good at it, learn to tie her bow line too!!!

But knots are freaking hard!!

Peter showed me a basic bowline knot and gave me a rope to practice with. And I couldn’t do it!

But damn, I was determined so I checked out YouTube for all the best knot tying learning skills and watched short tutorials, long tutorials, tutorials with sailors and tutorials with kids. I watched tutorials with pictures and tutorials with step-by-step hand motions. I spent hours studying how to tie a simple bowline knot.

Eventually I figured it out and practiced. I was so happy!

During a Facebook video chat, I made a big, proud presentation of it and practiced that too. I showed Peter the rope without the knot and made it like a magic act. Abracadabra and ta da- my bowline knot!

And Peter said it was wrong.

He gently informed me that, “you know, there are YouTube videos that will show you how to tie one.”

Like an unproperly knotted knot I snapped, “I watched them!”

“Sometimes pictures are more helpful,” he said.

“I know, I looked at them too!” I cried, totally lashing out.

When we were next together Peter calmly walked me through the bowline knot again. But how was I to learn when, as I was trying to pay attention to how he was moving his hands, he started some stupid story about a rabbit.

“The rabbit comes out of the hole and goes around the tree.”

What tree? I had a rope, where the hell was the tree?

At one point, I made a loop too big, and Peter said, “not so far, the rabbit is a timid little bugger.”

Now we are talking about bugs???

Does this story ever end and what about this bowline knot????

My grandfather came to America as an expert net-maker so why **@&((% can’t I learn to tie this ridiculous, basic knot?

Eventually, we figured out that there might be three problems.

1. Peter is left-handed so everything he was trying to show me I was seeing backwards. This might explain my trouble with the YouTube videos as well. 

2. Multiple sclerosis often makes things hard to learn, especially when you are looking at those things backwards. 

And 3. Rabbits and trees don’t belong on the water.  No wonder I was confused.

Once we figured out these things, I did actually tie the knot, several times as a matter of fact. Then we moved on to a figure eight knot which wasn’t too hard.

Then Peter went home, and I just as quickly forgot how to tie both knots. It’s a miracle I can remember how to tie my own shoes. 

But I keep trying with the knots.

What else can we do when we face knots, or MS or life or life with knots and MS?

We try and hope the trying will be worth it in the end, with perhaps maybe a good sail day on A Good Hair Day.

I insist on being at least a decent sailor. And if it turns out I’m knot (see what I did there,) I’ve got a few good curse words to get the boat under way…

What did one misbehaved rope say to the other?

Don’t be so knotty

How come one rope didn’t beat the other rope in the race?

Because they tied

I would love to tell you some more rope jokes, but I want to leave you hanging…

Thank you to the world wide web for some knot joke inspiration. Those I learned just fine…

A New Place to Go

A second look at my MS/Covid blog, Where Do You Go?

I don’t stay up late enough to watch late night TV.

Actually, that is a bit of a fib. I DO watch Dateline reruns as I try to fall asleep. And it works! Something about Keith Morrison’s voice as he discusses horror and homicide is very comforting to me as I drift off to dreamland.

But that is all I watch late at night. So I misssed this important information live but did catch it in YahooNews recently. It seems that Jimmy Kimmel traveled to Japan and was very impressed with their bathrooms!

I’m sure he liked other things about Japan too, but he really appreciated how clean and luxorious Japanese officials kept the public restrooms.

Being a germaphobe, I could totally relate. I too seek clean facilities whever possible. So much so, that I wrote a blog about it and thought I would share.

Please note that I wrote this in November of 2020 so it may be a little dated Covid wise. But it does get the point across.

Is it weird that suddenly I want to travel to Japan?

Where Do You Go?

I bet my multiple sclerosis readers know exactly what the title of this blog refers to. 

Do I mean where do you go to get a nose swab? 

No. 

Where do you go if you are of school age and not sure if your classroom is in your school? Or in another school? Or outside? Or in your bedroom? 

No.

Where do you go for toilet paper when a pandemic empties the shelves?

No.

But you’re getting closer.

If you read the title of this post and immediately wondered where the closest bathroom was, you might have MS.

Before the pandemic I knew all the best public restrooms in a 100 miles radius in all 5 directions- east, west, north, south, and whatever is over there.

It was something I prided myself on.  When MS took so many other things from me, including marketable attributes- multi-tasking, quick thinking, concise decision making and many others, developing a new skill meant the world. 

And damn, I’m good at it. 

Not only can I tell you where the best bathrooms are, I can map out a route of them for your various travels.

I can tell you which are always clean, which never are and thus need to be avoided, and which will be 50/50 depending on who worked the morning shift. 

(This skill has been fine-tuned by my other diagnosis- germ-a-phobia.)  

I can tell you which places have easy access so you don’t have to encounter someone working at the establishment who might give you the stink eye for not buying anything, and which ones you may want to take in a dollar so you can buy one of the mini packs of Junior Mints, just so you are considered a customer and don’t have to worry about getting kicked out. 

Like with any craft, I developed this skill by needing it; constantly needing to go and needing to go right now.

(Ridiculous MS bladder issues really piss me off!)

I’m so brilliant at this, I thought of turning it into a side business.  You know, a “text me your destination and for $2.99 I will text back your best bathroom bets” type of service.  I was just looking into how to file taxes on my future riches from my new company when everything closed. 

Stupid Covid! 

The last thing I need is another useless skill but, here we are.

At first, personally, it didn’t matter too much as nobody was going anywhere and nobody was going to pay me to map a bathroom route from their kitchen to their living room.  But now that things are starting to slowly open, this mastery could be handy. 

The problem? 

I don’t know how to do it anymore!!!!!!!

Covid 19 has made my knowledge obsolete.

And it’s not even due to the fact that wearing a mask makes your glasses fog up so much you can’t find the bathroom or discern if it’s vacant when you do. 

No, it’s because so many places have restricted use and will no longer let you in for something as mundane as using their public restroom.

I still have to do my errands, one of which is the library, which is now closed.  They offer curbside assistance but the lower-level bathroom adjacent to large print books is no longer a rest room option.  And that was one of my standbys-always clean, fully stocked, kind of hidden, no line.

The problem with that is you would have to walk in, walk across the restaurant, and pass the blocked tables to get to the ladies room.  Nothing says bathroom slacker like climbing over taped furniture. 

The Dunkin Donuts near me is still a needed rest room opportunity except the tables are now taped.  The problem with that is you would have to walk in, walk across the restaurant, and pass the blocked tables to get to the ladies room.  Nothing says bathroom slacker like climbing over taped furniture. 

And the $1 in your pocket is not going to make you a customer.  Nothing in Dunkin Donuts is under a buck.  You used to be able to buy one munchkin for under a dollar but now they are making you buy 5 at a time which will set you back $1.27.  

And don’t fall for the corporate lie- that 99-cent donut special actually costs over a buck when you give Uncle Sam his cut.

I still have doctor’s appointments and their restrooms are available.  But woe to the person who drove me or me, myself if I happen to drive someone else.  You’re not even getting your temperature taken if you are not the patient.  You are welcome to sit quietly in your car while the actual patient is inside the building, peeing away without a care in the world. 

Recently, a dear friend was in the hospital and as her health care proxy, and the person closest to her who could bring her some essentials from home, I went to visit.  Yes, of course, I was very worried about her, and you’ll be happy to know she is much better now.  But the most immediate concern when I got to the hospital was that with the Covid restrictions, I couldn’t get in until 2 PM!!!  It was 12:45 and I was completely stuck.  The hospital was on my list of approved pee zones. 

They were firm, I absolutely could not go in until the approved time.  The only exception was if the head nurse of the floor my friend was on called down and authorized an early visit.  I checked and she was in a meeting- until 2 PM. 

What to do?

I was humiliated as this was supposed to be my area of expertise.

I could see the acceptable bathroom from the front door and thought of making a run for it. But that would mean I would have to get by the front door people, the thermometer people, the greeter people and actually RUN.  It didn’t seem like a potential success.  

I left and thought of my list.  Most of the approved places were restaurants near the hospital.  But I hadn’t yet felt comfortable eating inside a restaurant, never mind using their bathroom.  What a hypocrite that would make me.  Fly in, do my thing, fly out all without breathing through my mask, less any droplets from the unmasked people chowing down reached me. 

Back to my list. 

McDonalds was up.

McDonalds is one of those “depending on the employee shift schedule” zones but as I pondered this, I was getting desperate. I drove to McDonalds and took a look around. I could get to the bathroom easily enough as they offered inside ordering and just one or 2 socially distanced tables in case the weather was bad, you had walked to them, and needed that Big Mac like right now.  I had no choice and used their facilities. And it was one of their good days, thankfully. 

Afterwards, it occurred to me that I still had an hour to kill. And I was hungry.  Where could I kill that hour and deal with the hunger?

I tried to be strong. 

“I’ll take a walk,” I thought.  “Maybe get a banana at a 7-11.”  (Not on the approved list by the way.)

But I was tired of Covid, tired of stress, tired of thinking about bathrooms, tired of worrying about droplets in the air landing on me and making me even sicker than I already am. 

I did walk. 

I walked to my car, started it up and drove through the parking lot all the way to the drive through.  I got fries and a small frappe, a nice rounded out lunch of potatoes and caffeine to help me through the wait to get into the hospital. 

While I munched, I thought about the future.  What could I do now that the knowledge I spent years acquiring was useless? I no longer knew where to go. 

There was one positive.

I didn’t have “to go” anymore. 

At least, not until I got to the hospital.

The first floor down by imaging offers a nice private restroom that is partially hidden by the x ray sign and so is almost always available….

Easy is as Easy Still Doesn’t Do

A new look at an old unhealthy observation

Hello my friends!!

If the following blog seems familiar, it is because it is one I posted a couple of years ago. I forgot about it and, since this was a lean month for my brain and new ideas, I decided to share it with you again.

I hope you enjoy it anew-

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 descendent 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 the written 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 some more? 

Back when I had a Saturday night nightlife 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, “Oooh 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 classes and decided I wanted to try the 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 exagerating 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!)

Happy National MS Awareness Month!Happy Spring!And Happy Easter!

Hardly a Princess, Barely a Pea

A weirdly dark night of one MS soul

Happy President’s Day my friends!

Have you taken a moment to picture your favorite commander in chief and then silently thank him for giving you a long weekend?

I hope it was a great long weekend!

And I hope that you also enjoyed that earlier February holiday.

No, no, no- not Valentine’s Day.

The OTHER February Holiday-1/2 off chocolate hearts day on 2/15!

Now, for my latest blog-

Technically, I know that the phrase “dark night of the soul” refers to a question of faith, when one is at a low point, filled with confusion, dread, weakness, and sorrow. It is bigger than multiple sclerosis.

Maybe. 

It doesn’t really feel bigger than MS on a bad MS night filled with, well, confusion, dread, weakness, and sorrow.

On a recent night when it’s possible I may have forgotten to take my “so I don’t have to pee all night” medication, I couldn’t sleep. And, you guessed it, I had to pee all night. 

I was ridiculously tired but every time I even started to drift off, there it was, the need to pee again. This was made worse by the fact that though it was nearly midnight, there was a bit of activity outside my front door. Since I couldn’t sleep anyway, I had to go out and investigate. 

There I found a truck idling near a fire hydrant that was spewing a ton of water into the parking lot. So, likely a water main break. Which could explain the other thing keeping me awake, the fact that the water faucet in my sink was flowing this hideous brown water when I turned it on. The toilet was filled with brown water too. 

Being a germaphobe, this grossed me out. Also being a germaphobe, I insist on washing my hands every time I use the bathroom, so things were definitely not going well when it came to the cycle of sleep I craved. I didn’t really know much about plumbing- my own or my water supply’s- but these two issues, the constant need to pee and disgusting brown water visible when I did, were enough to do me in a bit.

(Since, as most germaphobe’s do, I have a ton of hand sanitizer around, I could have just used that to wash my hands and called it a night. Or, at least tried to. But the thing about midnight when you can’t sleep is that you are not usually thinking your best thinks, and it took me 90 minutes to come up with that solution.)

But it wasn’t just these two minor issues- constant need to pee, broken water pipe- that were getting to me. Somehow, when I tossed and turned, I found a grain of sand between my mattress cover and my bottom fitted sheet. 

So what?

Why is that a big deal?

It isn’t.

Or it shouldn’t be.

But because I couldn’t sleep, I now became focused on it.

It was right in the middle of my bed and my hands refused to ignore it. Whatever side of the bed I slept on, however I turned, whatever sleeping position I sought to bring on some slumber, there it was. I had changed the bed sheets that day and that is likely when the grain of sand showed up.

How?

Why?

Where did it come from?

Who knows?

One grain of sand should not keep me from sleeping. I grew up on Cape Cod where there are millions, maybe billions or trillion grains of sand.

(How come I don’t know a better estimation of that and why isn’t that question a Cape Cod math problem? If Bobby spends the day at the beach, and he brings one pail and two shovels, how many grains of sand does he find?)

The point is, I have slept on the beach and thus slept on many, many sands. From the time I was a two-year-old having a meltdown after spending the day with my family on an outing, to the exhaustion that comes from barreling out of the water quickly when you are nine and your older sisters start humming the Jaws theme, to the hundreds of times I went gossiping and tanning with my friends, to the far too many beach parties where perhaps I had one too many wine coolers and just needed a little rest to keep the partying up, I do not have a problem sleeping on sand. 

And one grain of sand is not uncomfortable or even obnoxious. Unless you can’t sleep, it happens to be in the middle of your bed, and you can’t stop obsessing about it.

This was my pattern that night- get up to pee, get skeeved out about the brown water, crawl back into bed and tell myself to stop obsessing about something so silly as a little grain of sand, obsess about it anyway, and then obsess about obsessing about it.

At 2 AM I couldn’t take it anymore and got out of bed, knelt on the floor, lifted the fitted sheet, stuck my arm under it, leaned in as far as I could and tried to reach the offending sand. I couldn’t. I got back into bed and thought about the old fairytale, The Princess and the Pea. What I thought was, that it was stupid.

Your body, no matter how big or how small, would just crush a pea. Even if it wasn’t cooked. If Hans Christian Anderson really wanted to make a point, instead of a pea he should have used sand. That is really what makes it hard to sleep, even for someone like me who has slept on billions of grains of sand. Or more- that old math problem again.

Not feeling like a Princess at all, I added to my stress by trying to talk myself out of unmaking and then remaking my bed. Doing that would just be going way too far, even for me. Instead, I grabbed the remote and gave in to another obsession. 

I turned on Dateline.

I know it is weird to fall asleep watching a true crime show and Dateline should give me nightmares rather than blissful sleep. I don’t know why but sometimes it helps. I’m going to say it is the voices of the narrators.

Don’t believe me? I dare you to turn on a Keith Morrison report late at night and stay awake. There’s a reason why new episodes air on Friday nights.

In the morning, likely the most bleary-eyed princess ever, I was still obsessed with the sand. I got up and before I did anything else, I unmade my bed, found the intrusive sand, tossed it, remade my bed, and finally began to recover.

I have no idea what this particularly bad MS night says about me.

I am weird?

MS sucks?

If I am so sensitive that even a grain of sand can irritate me, maybe I am a princess after all?

If that is true, I am the worst princess ever!

What I ultimately decided was that I am not a princess, but I am weird, multiple sclerosis does suck and maybe, just maybe, the princess in the Princess and the Pea story actually had MS, just like me.