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A Little MS TMI

An embarrassing multiple sclerosis symptom


There are not enough words in the English language to describe something that is weird; I know, I’ve checked.

Recently I was told about this neat trick in my Microsoft program where I can type in a word and then right click on it for a list of synonyms.   So, of course I typed “weird” and all that came up was: strange, odd, bizarre, peculiar, uncanny, eerie and creepy.   These adjectives are no match for multiple sclerosis.

Since MS is a worldwide disease, maybe other countries have better words.   But since English is the only language I know, I’m not sure what those words are.


I used to know some Portuguese but all my MS brain can remember is some swear words that may work but not exactly….

So how then do I explain to you a recent and very personal but weird, (odd, uncanny, peculiar, etc.) symptom?

Since I have started writing about my MS, I have given up on being easily embarrassed.  This symptom however, may fall under the realm of TMI (too much information.)  But it is so, well weird, I have to share it with you.  Forgive me for the graphic nature of this description.

Lately, whenever I have to use the bathroom (which is ALWAYS since one of my most minor but annoying symptoms is increased frequency and urgency of urination-yuck) when I sit on the toilet seat, my right butt cheek feels as though I have sat on something wet.


There, I have said it.  Gross huh?

And yes, I am sure that is not the actual case. When this happens, I am not sitting in something wet.  Trust me, I have checked that too.

As I am a slight germaphobe (not quite at the Howie Mandel or Monk stage but I can see it fast approaching), I am always pretty careful about what’s going on where I am sitting.

In the cases where I have to use a public restroom (which is becoming harder and harder to avoid,) I am pretty anal (forgive the bad pun) about what I will be sitting on.  Plus, this unique situation (hey I just came up with an adjective that Microsoft didn’t include and yet I still did lousy on all those cognitive tests!), happens everywhere- at home, at my mom’s, at friend’s houses, etc.

What is this and why did it just start and why does it only occur on one side of my butt?

How can this latest symptom (indication, sign, warning sign, indicator,) make sense?

Oh right, it’s MS.


About the only thing about multiple sclerosis that makes sense is that it doesn’t make any sense at all!


If this seems familiar to you it may be because I have posted this one before.  And if you’re wondering, this particular symptom isn’t as prevalent as it used to be which is also weird.

And while we’re repeating things, in honor of National MS Awareness Month, I am again giving away three free copies of MS Madness!  A”Giggle More, Cry Less” Story of Multiple Sclerosis.

Sign up through Goodreads for your chance to win!  This giveaway is open to readers in the US, UK and Canada

MS Madness! Goodreads Giveaway



Emoticon images courtesy of farconville at FreeDigitalPhotos.net

Sign image courtesy of Stuart Miles at FreeDigitalPhotos.net

Toilet image courtesy of Mister GC at FreeDigitalPhotos.net


The Curious Case of Multiple Sclerosis Part 4

What’s good for you is impossible to get to


I first noticed this particular multiple sclerosis peculiarity about two months after my diagnosis.   I was at an MS support group meeting in a hospital.  This support group was sponsored by a local drug company and since drug companies have tons of money, they fed us well at group.

There was a huge array of edibles to choose from- well worth the two hour drive to get there.  I did try to combine the drive to group with visits to my neurologist to make the gas money worth more than just free food.

As group started and we all munched, all of us were actually focusing on the cookie tower.  The hell with the fruits, cheeses, and fancy salads, we wanted the cookies dammit!


Eventually, a brave MS’er couldn’t wait any longer and decided to go for the cookie tower.  She discovered that it was enclosed in this obnoxiously strong cellophane that noisily crackled as she tried to open it.  She tugged and tried to rip and puncture the packaging but couldn’t do it.  The cellophane was held together with a ribbon but the knot was way too tight to untie.

We MS’ers are a loyal and dedicated group and since we couldn’t hear each other over her packaging battle, we all went to help.  We played tug of war with the cookie tower and all took turns at destroying the obstacle before us.  Eventually, working together, we finally got to the cookies.   No one can say us MS’ers are feeble, that’s for sure.

As we all munched away I wondered if the cookie tower was some sort of cruel drug company test; if you can actually GET to the treats maybe you don’t have MS after all?


That was the first sign of trouble when MS hands try to get to healthy MS things.  So perhaps cookies are not necessarily healthy but we sure were happy eating them.  And being happy has got to be healthy right?

Next up was wine bottles, good wine bottles, the kind with the cork in them.


Growing up Portuguese, wine was part of my diet.  I remember being 12 and alone in Portugal with my dad, thinking I was all that.  He wasn’t as strict as my mom and so I was sure he would let me have soda with dinner.  Imagine my surprise when I asked and his actual answer was, “soda?  You’re in Portugal. You’ll drink what the Portuguese kids drink- you’re having wine!”

I think I liked it but for some strange reason the memory of that vacation is hazy.  The point is, I drank wine like water and I didn’t even need Jesus’ help.  I could open a bottle just fine.  And red wine is supposedly very good for you.


But after my diagnosis it started getting harder and harder to open a bottle, to the point where I was resigned to the mini bottles with screw tops on them.  And sometimes even those were troublesome.   This was a great concern to a friend of mine who promptly bought me an electric wine bottle opener, (thank you Shan,) which works great as long as my MS brain remembers to plug it in.

Then there’s the whole healthy eating thing.  Beans are considered excellent for MS’ers and beans are something I can actually tolerate.  I was opening a can of kidney beans to add to a nice healthy salad.

(Dear reader, don’t you dare bring up the soaking for several days thing- I can’t handle even thinking about all of that prep!)


I was happy that this particular can had the easy opening top with the pull tab thingy on it.   I pulled and promptly pulled the pull tab thingy off, leaving the top of the can totally intact.  I had to try three different can openers and fight with the stupid can for over ten minutes before I finally got to the beans.  At that point I was so frustrated and exhausted it was all I could do to continue with the salad and not order a pizza, especially since I reasoned that pizza has tomatoes and they are very good for you.

Why does MS insist on making things more difficult, even when you are trying to take steps to better your health?   And why, oh why, don’t companies who should know better, not know better?

MS causes me to have weak fingers and super clumsy hands.   I have heard many people with MS have the same issue.  I am on an interferon to treat my MS.   So one would think that the box the interferon comes in wouldn’t be a vault more secure than a Brinks truck.

Picture 46

Yet to get to the medication you first have to cut open the Styrofoam box with the clear, double duty tape triple wrapped around it.   There’s no way one will get through this tape without a super sharp weapon.   So now my clumsy hand is armed.

Picture 47

If you manage to cut through the tape you aren’t doing so without leaving tiny pieces of Styrofoam around your carpet.  If you can ignore that, good for you- you are strong indeed.

Picture 48

Mostly likely, you can’t and your choice is to attempt to pick them up by getting down on the floor and trying to figure out how you’ll get back up again, or pull out the vacuum.

Picture 49

Next out from the box comes the bubble wrapped and again, triple taped actual package.   And again you arm yourself.  You desperately try not to lose focus as you are tempted to stop looking for your medication and just aimlessly pop bubble wrap.   Once you cut through the bubble wrap then you must try to unwrap it’s ten layers to find the box of medication.

Picture 50

This is akin to a twisted MS version of Where’s Waldo?

Eventually you will find a bag and in the bag, which is soaked by the way from the ice packs you hopefully have not dropped on your foot, you may find your injections under thousands of mini band aids and just two alcohol swabs.  I have more mini band aids than there are paper cuts in the world and will never, ever run out.   Yet, like the Publisher’s Clearing House non-notices, the drug company keeps sending me more.

Picture 51

At the bottom of the bag is finally, the medication which must be immediately put into the fridge as it is supposed to stay completely cool even through the three hours it took you to find it.  Before the package ordeal is over you have to soak up the wet and throw away the non recyclable box.

Picture 53


Picture 52

The whole process usually wipes me out until the next delivery.

Why do I put myself through this ordeal each month?

Because this medication is good for me.

Why does it have to be so difficult?

Because it’s just one of the many curious cases of multiple sclerosis…..


FYI Friends!  This weekend is the final chance to enter the Goodreads Giveaway to win a free copy of MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.   The Giveaway will end sometime Sunday the 22nd and since I’m not sure what time that will be, consider entering today!

MS Madness Goodreads Giveaway


Image courtesy of Apolonia/FreeDigitalPhotos.net

Image courtesy of Stuart Miles/FreeDigitalPhotos.net

Image courtesy of digitalart/FreeDigitalPhotos.net

Image courtesy of mapichai/FreeDigitalPhotos.net

Image courtesy of keerati/FreeDigitalPhotos.net

Zen and the Art of Resting

Multiple sclerosis procrastinating, I mean, meditating

When I was in college, some three trillion, billion years ago, most of my dorm mates had to read a book called Zen and the Art of Motorcycle Maintenance.   I wasn’t in the class that assigned the book and so I didn’t have to.  Back then I cared very little about Zen which seemed to me to be sort of a hippy/dippy concept.  I cared even less about motorcycle maintenance.

But the title struck me and I have always thought that I should read it myself one day.  It is on my list of things to do; along with clean my house, order a new auto injector for my MS shots, meet Keith Richards and win the lottery.

I bring this up because I have been thinking about Zen a lot lately.

In my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis, I make the comment that “despite what every two-year- old on the planet will tell you, naps rock.”

But here is a secret just for you, my lovely blog readers, I actually don’t like naps.  I know many, many people with MS and without who think naps rock.  And I know several two-year-olds who greatly protest naps but will snooze away a whole afternoon if you let them.

For me, I find naps uncomfortably disorientating.  I always wake up not knowing where I am, what day it is, what time it is, freezing in the winter, hot and sweaty in the summer and in every case, desperately needing to pee.  While I try to readjust my brain and get to the bathroom quickly, I feel out of sorts.

Thus I have learned that even with the extreme fatigue MS delivers on a constant, daily, hourly, minute by minute basis, naps are not for me.  I’m still tired though and what I have discovered is that I will often fall into a state of consciousness for which there is no name.

Here’s how it used to happen-  I would start to read say, and before I knew it, my eyelids would get droopy. I would move, shift my position in some way so that I would not fall asleep.  And I wouldn’t sleep.  I would be aware of my surroundings and the state I was in, completely content but without thought or focus on anything except that I was resting.

It’s a beautiful thing.  It seems to be a state of peace and rest that must be sort of zen-like.   And so I looked up Zen to see if that was what the word meant, being in a rest so complete that it is actually more restful than sleeping.  I can make this ‘more restful than sleeping’ claim because I have a pretty active dream life.  In my dreams I’m always fighting a dragon, watching a movie or running from police.  What I am doing while I am sleeping does not seem to be resting at all.

Wikipedia describes zen as “the attainment of enlightenment” and says that the word Zen itself translates to “absorption or meditative state.”  (For the record, Wikipedia was not clear on where and when you capitalize the word zen-not to me anyway- and so I keep alternating it here in this blog post figuring at one point I will get it right.)

An “absorption or meditative state”- yes, that perfectly describes the zoning out I do while I am attempting to rest away some MS fatigue.

All of this would be well and good except that it is multiple sclerosis we are talking about and thus, there’s a problem.   Lately I’m noticing that I am falling into my own personal Zen when I wake up in the morning.  This is tricky as my morning is already pretty busy.

Usually I wake up and head directly to the bathroom.  Then I take my thyroid pill with a glass of water and have to wait 30 minutes to eat or drink anything else.  I try to use that 30 minutes as prayer time.

Then I get up and have a cup of tea while I check all of my emails and social media sites.   Then I have breakfast.  By this time it is often late in the morning, way too late to try to squeeze exercise into my routine.

Last week I woke up and somewhere between my prayer time and my cup of tea, I went to my zen place.  For over an hour I laid in bed not praying, not reading, not watching tv, not thinking, not sleeping.

It happened again twice this week.  What this means is that if I wake up around 9, by the time I do the above AND include fitting in my needed Zen, I am just having breakfast while the rest of the world is clearing their lunch dishes.

MS already robs me of much needed hours in the day by making it take longer for me to do EVERYTHING and needing more hours of sleep than most people.

And yes, I have tried to go to bed earlier but that just makes me sleep even more.  I’ve tried to set my alarm for a regular wake up time but in my dream/sleep state or even in my meditative state, my semi conscious self just shuts the alarm off, unconsciously.

Of course I worried about the severity of this particular problem.   Then I found a quote from Zen and the Art of Motorcycle Maintenance.

No I still have not read the book.  I found this quote on Goodreads thank you very much.

“The place to improve the world is first in one’s own heart and head and hands, and then work outward from there.”

Robert M. Pirsig

That made me feel better.  I am not being lazy when I am in my zen and even if I don’t have the time for Zen, it’s crucial as I am improving the world by improving my heart and my head and my hands.

Yes, there was a time when I would get a lot more done in my mornings and be productive but that was zen, this is now.  Now, I must spend at least part of my day on improving the world.

Phew-what a relief.

If you are looking for me you can likely find me in my meditative state, perhaps under my little brother’s motorcycle….

Happy Father’s Day friends!  The picture below shows my oldest nephew in his Zen place with his two sons.   I have included it as a nod to zen and fathers and because I think it’s a freaking riot!


Finally, speaking of Goodreads– ok, it was me who mentioned Goodreads a couple of paragraphs back to usher in this handy tie in- don’t forget the Goodreads giveaway for MS Madness!   A “Giggle More, Cry Less” Story of Multiple Sclerosis is only open until June 22!

The link is below if you know anyone who would like to try to win a free copy….

MS Madness Goodreads Giveaway



Plumber Crack

From young to old, courtesy of multiple sclerosis

Last week I minimally and tentatively gave multiple sclerosis credit for something good-my being mistaken for someone not old enough to legally purchase alcohol.

Well I was wrong!   MS reared its ugly, aging head once more just so I didn’t go too crazy with sentimental gratitude.  For the record, I may never buy alcohol again for fear of breaking the being carded spell.

Allow me to set this latest scene for you.  This time last year I lived in a little house on the edge of the woods.  My then landlord lived in another town and if there was a problem, he would come fix it.  Simple as that.

Otherwise I never saw him.   Since he didn’t live near me, he didn’t care what the yard looked like and left the simple maintenance up to me.  Suffice to say after several years I was actually living in a jungle. Since I can barely keep up with basic maintenance on myself, let alone the inside of my living quarters, the outside was left to its own devices.

Now I live in a bigger, shared building with very kind, very dedicated landlords who also live on the property.  They are so dedicated that they are on top of everything!


Driving by my rental you will likely notice how pristine everything is and should you choose to walk across the lawn, you might actually emerge from your walk not covered in blood sucking ticks hiding in the overgrown foliage.

One would think this set up would be a good thing, that having landlords who address issues before they arise and take care of their property at no extra expense to the tenants would make said tenants happy.  One would be wrong, at least if one of those tenants happens to have multiple sclerosis.

To quote my friend the Grinch, “oh the noise, the noise noise noise! The one thing I HATE, all the noise, noise, noise, noise!”


Strange how I did great at the Rolling Stones concert but show me a hammer or a skill saw and I panic.  It must be something to do with classic, beautiful, somewhat organized sounds verses crap.

First, the carpet upstairs needed to be replaced.

Then the roof needed to be re-shingled.

I left my house during the first re-shingling day but even that was tricky due to MS.  The contractors had placed a huge blue tarp over the front door and I could see ladders on the other side of the tarp but no opening.  What if in searching for an opening I knocked one of the cute contractors off his ladder?

I had a back entrance but was afraid to use it as since I never did, I could not remember which key I needed to lock and unlock that door.   I was stuck for a bit until I saw the very edge of the tarp to my far right.

This is how I handled my dilemma.  I leapt off the front steps towards the direction of the tarp opening and into the bushes.   Then I got up, dusted myself off and ran away.

After the roof was fixed, several windows needed to be replaced.  Then said windows needed to be painted.  Nobody told me about the painting and so it was that I woke up one morning with the sound of someone singing while they tried to come through my bedroom window.  And that was just the painting on the outside.


The worst of the property upkeep is that of the landscapers.   My landlords are so nice that they tell the landscapers they can come whenever they want.   Which is why it is not unheard of for the landscapers to show up after midnight with their weed wackers, lawn mowers and leaf blowers.

Ok, my particular version of midnight due to my MS sleep issues, which probably translates to 10AM for the rest of the world.

I swear I am grateful for the care my landlords show the rental, I really am.

But I would be even more grateful if MS didn’t make enduring all that care so downright painful.  Once a hideous obnoxious noise (hammering, motoring, bad singing) gets into my MS head, I am down for days with the most killer headache one can imagine.

So the above was what was going on in my apartment for the last several weeks.  But that was not all.  I was also having plumbing issues. On any random, given day it was 50/50 whether my toilet would flush properly or not.

Plunging would not fix the problem.  I went online to research how to be my own plumber.  All the tricks I read about did not work.

On three different occasions I had to knock on my landlord’s door to report the plumbing issue. And on three different occasions he couldn’t fix it either.  And so, on three different occasions a plumber was called.   The plumber reported he had no idea why I was having such trouble.


I broke down.  I told my landlord that I couldn’t take it anymore and was leaving for the day to escape all this property trouble. I thanked him and his wife for their offer to use their bathroom whenever I needed it but said all I really wanted was my own toilet that worked.  I could take everything else, just please, please resolve this one issue before I went crazy.

A new plumber was called.  And it turned out, that I did, indeed, have a faulty toilet.  There had been lots of reports with the particular model as pipes in them crack easily and cause all kinds of problems.   I needed a new one.

My landlord called to tell me the problem and told me that he felt bad about all that had been going on and that he wanted to make it up to me.  Thus, he had ordered me a special ADA compliant toilet.


I told him I didn’t need an ADA compliant toilet.  I just needed a toilet that worked and he shouldn’t spend the extra money on something I didn’t need.  He said not to worry about the money.  He wanted to do this for me and “who knows what the future might bring with that disease of yours.”

My new toilet doesn’t have support bars around it but will easily accommodate them should I need to add them.  Just like my grandmother did with her ADA compliant toilet that she bought in her eighties.

Thus it was that exactly one week after I was mistaken for being 20 years younger than I am, I was using my new toilet for the first time, a toilet specifically designed for the disabled and the elderly.   And exactly one week after that, I had an actual birthday.  I swear you can’t make this stuff up!


Things have quieted down at my rental now.  And I am used to my new bathroom fixture and so far, it seems to work.  I’m only used to it at home however.  Since it is higher than others, I have to try to remember this when using a public facility.

Twice I have almost fallen on a filthy floor because I wasn’t expecting the seat to be where it was.  So I guess the new toilet is also helping me practice my balance issues?

It is certainly not helping with my exercise routine.  With my horrible bladder most of the exercise I got was from continually lowering myself onto my old normal potty.   Ah well, like we all need to do when we have MS, I will re-calculate and re-balance and be grateful to have a landlord worried enough about my future to make sure the most basic of human functions will be manageable no matter what MS decides to bring next.

In the meantime, I will just try to celebrate another birthday by not thinking about old age, young age, or MS.

But you can make sure that I am getting one of my older looking friends to buy the wine!


Even though it is my birthday, I want to give you a gift!   Five of you anyway.   Five readers who have signed up on Goodreads will receive a free autographed copy of MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.   Check out the link below to sign up before it’s too late!

Goodreads MS Madness Giveaway


Here Comes Gina Romani!

An MS Positive?   Possibly.

Myself, and fellow MS’ers like me, have a tendency to blame multiple sclerosis for everything bad.  Not just everything medically bad in our bodies, but everything bad.  War, death, violence, hatred, Justin Bieber,….…you name it.  If it’s bad, it is MS’s fault.

And why shouldn’t it be?  MS is a super sucky, very serious, no cause, no cure, scary, debilitating disease.  And yes, I said the dreaded “D” word-disease: a super sucky, very serious, ugly word.  Sometimes MS deserves to be referred to as a disease and not the less ugly version of the word disease-illness. So whether it’s right to do so or not, I choose to blame everything negative on MS and you can’t stop me!

But what about something positive?

No way!  There could be absolutely nothing positive about MS, ever!   It’s impossible.

I started thinking about this recently after an “incident.”  A kind of cool incident, actually.   I was on my way to visit a friend and before I got to her house, I stopped at a liquor store to get us some wine.   And then, miracle of all miracles, I got carded!!!!

Really carded!

I had to actually pull out my license and the sales clerk working the cash register stared at it for several seconds before handing it back!

I was beyond thrilled.  I’m way, way past my under 21 years.  I don’t want to tell you by how much but let’s just say I was diagnosed when I was 40 and that was a few years ago.  You do the math.

(If it’s a brain fog day then you may want to ask a grade schooler to help you.)

True, the lady who carded me was wearing super thick glasses.

And true, I had a ton of makeup on as I had just come from a local cable TV station where I was interviewed and I needed lots of makeup to look decent.  (And that was just a local cable show- how much makeup will I need if I ever get on my mom’s personal favorite- the Steve Harvey show?  Is there enough makeup in the universe?)

Still, I was ecstatic!  If anyone wants a natural high, get carded.  It will give you more energy and pep than all your meds combined.

As I was carrying the wine and skipping to my friend’s house, a worry did enter my happy thoughts.  What if I didn’t have my id?  Then what would I have done?

If I ever lost my license I would be so stressed that I would definitely need wine and wouldn’t be able to buy it!!

Then what would I do?  Resort to being the lame teenager hanging outside of the liquor store and sucking up to old people to get them to buy for me?  No, I couldn’t have that.  That is beyond humiliating now.  It wasn’t that humiliating when I WAS a lame teenager, but now? No, I just can’t do it.

I made a mental note to dig out my fake id from college.  The id featured a horrible picture of me with the name and stats of some girl from New Jersey named Gina Romani.

Dear Gina, wherever you are, you got me through a lot of parties- thank you!

As fake ids go, mine was pretty bad.  But it worked in about 30% of the liquor stores I tried so it was a crucial part of my life.

And it was somewhat famous, too.  My friend’s mom thought it was so pathetic that she took to calling me Gina Romani all the time.   To this day, we will be some place in our small town, church or a restaurant say, filled with people who know us, and she’ll yell- “Hey Gina, how ya doing?”

And people will look at her like she’s crazy.

“Has she lost it?” they will ask.  “That’s her daughter’s friend Yvonne.  Why does she think her name is Gina?”

And so, to spare any trouble in the future should I lose my real id, I vowed to find my fake one as soon as I got home.

My joy turned to grief when I pulled my house apart and could not find it anywhere!  How could I have lost my fake id?  I may need it now that I’ve been carded and yet my MS brain has misplaced it- never to be found again!

And there’s the problem.  It’s MS’s fault that my fantastic mood turned sour and uplifting feelings turned to worry.  If I lose my license what will I do all the times I may get carded in the future???!!!


I decided to focus on the good, the fact that I got carded in the first place.   This was a good thing and it had absolutely nothing, and I mean nothing, to do with MS at all.

Except that I was all doled up and wearing makeup to talk about my MS book.

Still, no.  I won’t give MS any credit for the good thing that happened, my being mistaken for a teenager.

But with the fatigue that comes from MS I do need a lot more sleep; usually somewhere between 10-12 hours a night depending on how effective my bladder meds decide they want to be.

And some people call that much shut eye beauty sleep.  I tend to doubt my sleep has anything to do with beauty but maybe that much sleep from MS fatigue is actually resting and smoothing some of my wrinkles?

I was still reluctant to give MS any positive credit for the “incident.”   But then I remembered that since my diagnosis I have been eating better and drinking more water (when I’m not drinking wine of course,) and supposedly, those two things are good for you and can perhaps make you look younger?

And stress about MS helped me to mostly kick the smoking habit and smoking supposedly ages you.

And, I have made many new friends since my diagnosis and good friends cheer you up which makes you less stressed which may make you seem younger?

Leave it to multiple sclerosis.

As my body feels like it’s aging at the rapid rate of two years every day, MS could quite possibly be helping me to look younger.  Maybe I have to give MS some, teeny tiny bit of credit for something good?

Or maybe the liquor store clerk just needs thicker glasses.

Either way, I’d sure feel better if Gina Romani was still hanging around….


I would like to remind all of my awesome blog readers who may be on Goodreads that you can still enter my MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis giveaway!  You have until June 22 to possibly win one of five autographed copies.  And if you’re not already on Goodreads, it is easy to sign up and become a part of this awesome social network for book lovers!

Goodreads Giveaway

Toe Story

Some MS science fiction

Just this morning someone in one of my online MS Facebook groups asked how do you know when something new in your body is MS or some other medical issue?

This is an excellent question without a definitive answer.

I have struggled with this many, many times as each new weird symptom-like thing comes up in my body.  But this question is especially relevant right now as my week as been filled with even weirder medical weirdness.  Just when I think my MS/my health/my life can’t get any weirder, it does.

Several mornings ago I woke up with major pain in my toes.  The pain seemed to be concentrated on the second and third toes of my right foot, almost as though I had stubbed them badly.


Now, I do get up in the middle of the night to use the bathroom, 2, 3, 10, or maybe 15 times a night, depending on how effective my bladder control medication decides it wants to be.   I’m usually awake enough to do my business and get myself safely back to bed. So if I had stubbed my toe in the night, wouldn’t I be aware of it?  Especially if it was so painful that it caused me to limp around in the morning?

Multiple sclerosis has certainly wreaked havoc on my short term memory but painful memories seem to hang around. While I’m pretty klutzy, I have no recollection of hurting my toe to this extent.  And I do mean extent, the toes hurt like a motha……, well, let’s just say they hurt a lot.


This was beyond frightening and perplexing.  What is going on in the middle of the night that caused me to wake up hurting so badly?   And how can just two of my toes be such a problem?

I researched this and discovered that your toes have a lot to do with your balance and thus, are very important.  Especially to someone who already has balance problems related to having MS.

As I was l limping around thinking about this I received a call from a friend who happened to have a podiatrist appointment later that day and she was dreading it.  A podiatrist is a foot doctor.  Don’t they cover toes as well?

I thought of high jacking my friend’s appointment-she certainly didn’t want it.  But I didn’t out of fear of extreme frustration.  The podiatrist would likely examine and x-ray my toes only to tell me nothing was wrong and then on top of hurting I would be irritated and worried I was going crazy, yet again.


So I stayed home and lamented what a beautiful day it was and how before I woke up with toe issues I was definitely, finally  going to go out for a long walk that day of all days and geez, now with the toe issue I can’t. See what I mean about how fitting in exercise is tough?

By the end of the day my toes felt much better so I chalked the whole toe thing up to a fluke and went to bed.  And in the morning, my toes hurt all over again.

This seemed like MS– a rise in severity of symptoms only to have the severity wind down and then rise up again.  It had to be- what else is going on with my feet while I sleep?

I thought I should consult a consultant.   I called another friend who had actually broken her toe during a family vacation last summer.  She claims she broke it climbing down and falling off the ladder of the bunk beds in the house her family was staying in.  I think she actually broke it tripping over a sidewalk after too much wine.  I suppose, however, if she was going to make up a broken toe story she would come up with a better one then falling out of bed- bungee jumping or paragliding maybe.


Anyway, with all of her broken toe experience she didn’t believe I had broken toes.  She felt I might be dealing with arthritis!   Arthritis?  In two of my toes???

Day three I woke up with renewed but slightly diminished pain only to be back to normal by the time I went to bed.   It is now day 5 and the pain upon waking is only mildly uncomfortable while my confusion increases.

These days my MS friends and I are all about asking is this latest problem MS?

Or is it another sign of aging, like arthritis?

Or is it yet another medical condition?


I would like to propose another possibility.

Perhaps it is neither of those things but something that can be best explained by the narration of the Twilight Zone

“There is a fifth dimension beyond that which is known to man.  It is a dimension as vast as space and as timeless as infinity.  It is the middle ground between light and shadow, between science and superstition and it lies between the pit of man’s fears and the summit of his knowledge.  This is the dimension of the imagination.  It is an area which we call the Twilight Zone.”


So there you have it friends.  If the mysteries of your MS symptoms are too mysterious even for MS, then perhaps you and your painful toes have entered the Twilight Zone.

Good achy toe night to all of you…..


And if you have yet to pick up your copy of my latest book, then please check out Goodreads where in celebration of World MS Day, you can possibly win a copy!

Goodreads Book Giveaway

MS Madness by Yvonne deSousa

MS Madness

by Yvonne deSousa

Giveaway ends June 22, 2014.

See the giveaway details
at Goodreads.

Enter to win