If you have Trouble with too much Sleep, you might have MS

A multiple sclerosis nightmare on my streetID-100436842

This blog post is dedicated to my chronic illness friends who have trouble sleeping. I feel ya.  I have trouble with sleep too but my trouble is a little different….

I love sleep.

I love my bed as it is super comfy for sleep.

And after I pee 10-12 times I sleep pretty well.  It’s quite coincidental actually, as I usually get about 10-12 hours of sleep.  One hour for each time I was forced out of bed and into the bathroom “one last time…”

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This isn’t a new thing as sleep and I have always gotten along- too much really.  I’ve never been known to sleep walk. And the jury is out on if I snore, depending on whom you ask.

But I have a pretty active sleep life.  Despite the lack of sleep walking one time several years ago I woke up, brushed my teeth, and took a shower.  When I went into my bedroom to get dressed I realized it was only 3AM.

Another time, a fingernail on my left hand scratched the letter Y onto my right hand.  I noticed when I woke up.  I kid you not, the letter Y, first letter of my first name.  It was as if part of my sleeping body wanted to remind the other part of my identity.

And then there are the dreams.

They are super intense, almost like a movie.  In fact, one night I dreamed I was watching a movie and in the dream about watching a movie was an actual movie!  If I wasn’t so tired when I woke up I should have written out the movie’s screenplay. Maybe if I had, I would be too busy hanging with Bradley Cooper and Matthew McConaughey to have time to write this blog.

BUT, I digress.  (I have MS-it’s what I do.  My whole life has become a digession.)

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Anyway, enter multiple sclerosis into my active dream life.  I once asked my first neurologist if very intense dreams could be part of the reason for my very intense fatigue.  She said no, because if I’m dreaming, I’m in very restful REM sleep.

Really?  It doesn’t feel so restful when I’m scarring identity marks onto my body.

(Note- This was the same neurologist who told me if I was having trouble describing my cognitive issues I must not have any.)

After a pretty crazy and sometimes overwhelming month I recently gave myself several days of rest.  I took it easy and tried to catch my brain and body up on life.  I did use the time to restart an exercise routine I hope to (FINALLY) keep up with.ID-100361589

Four nights after this self-imposed relaxation exile, I woke up feeling pretty good.  Except for my upper left arm which felt like it had been punched, hard.

I was alone and there was no obvious evidence that someone had broken in and beaten me up.  Did my right arm do that?

There wasn’t any bruising but it hurt.  It would make total MS sense if I had done a shot in that area in the last couple of days.  I hadn’t. I had done butt shots but my butt felt fine.

I chalked this up to more MS weirdness and mostly just found it fascinating.

Until the next night when my dreams were out of control.

There was the first dream which is a regular one.  I’m at my old job and working part-time to help them get organized and before I know it I’m running the whole show, months have gone by and my old boss refuses to pay me.

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Typical dream stuff.

But the second dream involved my needing to go to my hometown 30 miles away and choosing to bike there as a means of transportation.  I make it about 20 miles and then start to cry.  Someone in my dream gives me a ride and then when I have to come back I decide to bike again.  But after ten miles I’m crying and luckily find a bus to give me a ride.

The reason why this was so weird is anyone who knows me knows that I’ve never been much of a bike rider.  If I had to get somewhere 30 miles away I would do better walking there than biking.

Not hiding tooth

Not hiding tooth

I think it comes from the trauma of a bike accident when I was ten that caused me to chip my newly developed bucked tooth, creating a super goofy smile that lasted well past my braces.  Any type of fix dentists did wouldn’t last and the image did nothing to help my general preteen nerdiness.

Hiding tooth

Hiding tooth

Or perhaps, my lack of bike skills come from my lack of balance issues which might be early traces of MS?  Except neuro #1 also said my clumsiness had nothing to do with MS even as I was accidentally walking into a wall during my balance test.

Anyway, the morning after my bike dream I woke up hurting all over as if I really had tried to bike 60 miles in one day!

How does THAT happen?

My thighs hurt.

My butt hurt.

My feet hurt.

My arms hurt.

Even my hands hurt.

Everything hurt as if I had gone on an extensive bike trip.

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I have memory issues too and couldn’t remember everything I had done the day before but I’m pretty sure pedaling away wasn’t part of it.

I don’t even have a bike.  There is a cute girl’s bike with a kid’s helmet in the community storage area of my building. Did I take that out for a spin and forget?  But I checked.  The flowery pink bike still had the same dust on it it’s had since I moved in.

So what’s going on?  Has my brain and my sleeping brain decided to conspire to make me crazy?

Has my imagination gone off the walls to make my body crazy?

Am I actually crazy?

Oh wait, I have multiple sclerosis.

Of course I’m crazy!!!

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No Summer Lovin

An MS dirge

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                                                  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 Grease.)

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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.

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If you don’t believe me, ask the cute UPS driver who remarked what a nice afternoon 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.

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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.

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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 neighbor’s 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. ID-100224548

I thought of calling the police as there must be an ordinance against that type of work so 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 Millie 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.ID-100174457

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.

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It’s a vicious cycle.

And so, with all things multiple sclerosis, 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!

Happy Independence Day my friends! 

May you have a bug free, fun filled holiday!

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H2O a Go Go

Multiple Sclerosis advice

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Yes friends, this is a repeat. But my brain has been a little slow lately.  And since this is one of my personal favorites, here you go….

You may think today’s blog is another one that has me whining about my obnoxious bladder.

Well, it’s not.

Although, to paraphrase my sister Laurie, “my bladder issues do still piss me off!”

When you tell people you have a chronic illness you find yourself on the receiving end of a ton of unsolicited advice. Most of that advice comes from well meaning people.  Because they are well meaning, the polite you grins and bears it even when it’s useless, clueless and ridiculous.

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“Just tell yourself, ‘I won’t get stressed, I won’t get stressed…’”

“Breathe…”

“You need to get more sleep.  Oh, you got nine and a half hours?  You must be sleeping too much…”

“You may not have MS, it could just be an allergy…”

The thing is, sometimes you may actually get something helpful out of the advice so it’s worth listening too.  (Yes, that advice could be construed as unsolicited advice directly from me.)

Imagine my shock when years after someone told me I should eat bee pollen, I discovered that bees are actually helpful and if we don’t take better care of them, they are going to go away and then the world could end.

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As someone who has written a book about multiple sclerosis that I am desperately trying to sell to the masses, (MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis in case you’ve missed it the 10, 000 times I have mentioned it before-more unsolicted advice-buy, buy, buy…) I am even more open to advice.  I travel my area talking about my book and people want to tell me things that they have heard might possibly be helpful.  And again, that is a great thing.  I appreciate it, I really do.

But every once in a while, not so much.

Please allow me to briefly digress. I swear there will be a point to this digression; I think.

I am very proud that after many people suggested that maybe I didn’t have MS but actually had aspartame poisoning, I looked into it and discovered that they were right.  Well, not really.

My excellent neurologist says I still have MS and I believe him.  But I looked up aspartame and discovered it really is bad for you and sure wasn’t helping things.  I switched from artificial sweetener to Truvia, an expensive alternate, and completely gave up my beloved fountain diet cokes in favor of water.

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I drink water all the time now.  Plain water; no enhanced sugary flavors.  I tried diet coke again once and didn’t even like it anymore.  I thought I was doing great.

At one speaking event I foolishly forgot to pick up some bottled water. A friend offered to get me some and came back with SmartWater which I hadn’t seen before but thought would be great as maybe it would help me be smart.

After the presentations by many authors, a woman to approached me.  She asked if she could tell me something and of course, I agreed, hoping she was going to tell me that my book looked amazing and she couldn’t wait to buy it.  Instead she informed me that the SmartWater I was drinking really wasn’t smart at all.  I was quick to appease.

“Oh really, I’ve never drunk it before.  My friend got it.  Is it filled with sugary additives or something?”

“Oh, I don’t know,” she said.

Hmmmm……

It was a chilly day in May and she was wearing socks with sandals.  I know it’s not right to stereotype but my first thought was the bottle; she must be Earthy Crunchy green and worried about the planet.

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“Oh, don’t worry, I recycle- I won’t throw away the bottle.”

That wasn’t a lie.  I really do recycle but turns out that isn’t enough anymore.  Don’t even get me started about the dangers of water bottles, that’s a whole other blog post.

“That’s not it either,” she replied.

Turns out, what she was referring too was the alkaline content in bottled water and how it does something really bad that could be making my MS worse or does something really good that could make my MS go away.  I couldn’t figure out which.  The only thing I know about alkaline has to do with batteries.

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Maybe I should ask the Energizer bunny what this woman was talking about.

Then she mentioned something about acid levels, which was really upsetting as I’ve never done acid in my life-not even in college.

Here I thought I was being so healthy!!!!   No diet coke for me!  No juice at this event-too much sugar.  No milk- now some say milk is bad.  No lemonade or even iced tea.  No beer or margaritas either.    No chemicals, poisons, GMO’s, alcohol or aspartame.  I was drinking what I thought I was supposed to be drinking, what everyone told me I was supposed to be drinking.ID-100207125

This woman then went on a 20 minute scientific diatribe while I stood there dumbly watching the custodian fold the chairs and empty the sods cups.    I couldn’t figure out science even before MS attacked my brain. I heard the word alkaline a lot and acidic.  And inflammation, that one was kind of familiar.  But I had absolutely no clue what she was talking about.

I’m all about good advice and being polite though so I stopped trying to figure her theory out and just figured when she was done, she would tell me what I should do stop the water epidemic.  She finally stopped talking and so I asked her what I should do? How do I solve this problem of bottled water that I didn’t know I had?

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I was eager for an answer and good advice that would circumvent me going back to school to take a science class.  I didn’t even know what kind of science this was.   Biology?  Chemistry?  Earth Science?  Yes, water lives on the earth so it must be an Earth Sciences class I should take to sort this out.

Her response to my question of what should I do now that I know bottled water can be bad, was straightforward.

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“Oh, I don’t know.”

What??  See friends, I swear this is all true; you can’t make this stuff up with or without an MS brain.

I pressed her a little and she told me that she had just moved to the area from California which had the best water in the world and where she knew which bottled water was safe to drink.  Now that she was in MA, she had no idea.

I pressed her more and she then told me her best advice was to buy litmus strips (what?) and then take them to all of the Whole Foods, Trader Joe’s and health food stores in my area where I should buy up all the bottled water they had and then bring it home to test each of them with the Litmus strips and then only drink the bottled water that tested well.

For one month.

Then, as companies can change their manufacturing processes and their water sources, I should repeat this test every month for infinity to make sure I was constantly getting the best water.ID-100307529

It was at this point that I began to peek around the corner of the empty room looking for the Candid Camera dude.  He never showed up.

I was more confused than ever.

About the only thing that seemed clear after the woman and I finally said goodbye was that there must have been something in her water.

There just had to be…ID-10036921

What is the craziest advice you have ever gotten?

 

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Shower Time

A new multiple sclerosis skill

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

It doesn’t matter if my achy body slept in til 11 or I had to get up at 7 for Mass.  (What is up with 8:30 Mass?  My Christian friends might disagree with me but my reading of scriptures says that worship is not appropriate until the worshiper is wide awake, usually after 10:30.)

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

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

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

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I drank my tea.

I ate my breakfast.

I answered my emails.

I sorted through my daily meds.

I made my bed.

I posted a funny baby video to Facebook.

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

I thought about my writing project.

I thought about why taking a shower is so exhausting.

I started this blog.ID-100165569

What makes a shower so exhausting?  Is it the standing? The water temperature? The slip and fall concern?  Is it the multiple steps even if the multiple steps are so simple we should be able to do them without even thinking about them?

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

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

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

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

Before I knew it, I was Googling Limahl.  Turns out his solo career went fine.  But he was definitely cuter in the 80’s.

me capturing the 80s

me capturing the 80’s

Then again, weren’t we all?

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

Taking a shower should be automatic and NOT a big deal.  It is such a minor part of my day that I don’t even write it down on my “to do” list; and I write EVERYTHING down on my “to do” list.ID-10094176

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

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

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

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

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

Come to think of it, I was pretty impressed at the things I had done while I procrastinated the soap and water part of my day.ID-100127363Back in the old days I didn’t have such procrastination skills. Procrastinating meant zoning out in front of the tv while some sitcom I had seen hundreds of times broadcast canned laughter.  I would literally be a useless clump of procrastination nothingness.

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

Neither is MS.

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

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

Hey you regular, amateur procrastinators- “You Can’t Touch This!”ID-10056127

March is MS Awareness Month and we only have a couple of weeks left!  If you like your awareness brought to you with a giggle then please check out my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.  You will definitely giggle.  It says you in the title!

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Not Called Bari-yum

A new multiple sclerosis test

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I don’t mean to brag but I think I opened MS Awareness month in a truly MS aware way.  Late in the morning of March 1st I found myself at a local hospital undergoing a new, previously scheduled MS test.  This test was called a Modified Barium Swallow.

I was directed to take this test due to troubles I have swallowing.  Specifically, sometimes I forget how to swallow (old issue I have pretty much ignored,) and when swallowing I don’t always swallow completely (fairly new issue of concern.)

The latter swallow problem is quite frustrating. I hate doing things halfway. If I swallow I want to swallow everything!  It’s sort of like my bladder problems.  When I go, I don’t go completely and have to go again.  Now when I swallow, I don’t swallow completely and I have to swallow again.

The even weirder thing is that this doesn’t happen with food and drinks.  No, those I manage just fine.  The problem just involves swallowing saliva whose whole purpose is to be swallowed!ID-100147070The test is exactly how it sounds.  You go to the radiology department and they alter (modify) your normal swallowing (swallow) by getting you to swallow barium sulfate (barium) to watch your swallowing procedure light up in pretty colors on an x-ray machine so they can see what you’re doing wrong.

In the x-ray room a nice woman who said she was a speech pathologist explained the test to me. She said she would give me various consistencies of foods to eat to watch how my innards responded.  My thought was, “great, free lunch.”

Then she put on a whole set of lead aprons- did you know they make a lead apron skirt- it looked pretty cool- and then told me to stand in front of the x-ray machine.ID-10057006

Hey, where was my lead skirt?  I know I’m pretty much pass my child bearing years but still, I’ve got stuff I’d like to keep intact.

Next she asked me to take a sip of barium that was the consistency of water.  Then I was to take a sip of barium in the consistency of milk.  Next it was a nectar consistency which I thought was pretty impressive because I didn’t know that nectar even existed.  I just thought it was in religious circles as in “the nectar of the Gods..”

I’m sure this wasn’t the same thing. If this nectar was supposed to be God like I’m sure God would make it taste better.ID-100265528

Then it was a honey consistency.  Did you know they made so many variants of barium?  I’ll have to pay closer attention in the barium aisle at Wal-Mart.

I got excited for the next part of the test-pudding! Yea for pudding.  My sweet tooth and I were ready.  But barium sulfate pudding does not taste anywhere near as good as it sounds.  You’d think they could add a little bit of chocolate to spice it up.

The final part of the test was that I got a cookie.  Yea again!  I figured the cookie was the reward for having to eat all of this barium stuff.  Kind of like when you give the Red Cross your blood and they give you Oreos after to make you feel better.ID-100285311

I wondered what kind of cookie it would be?  The girl scouts had been out selling recently- maybe it would be Thin mints or Tagalongs?  That only seemed fair.

But no, the excitement faded when I was handed a plain boring cookie dipped in barium!  Seriously?

But with my consumption of the disappointing cookie the test was over and we sat down to discuss the results.  The findings?

Nothing.

This nice pathologist kindly explained that she didn’t see any issues.  She told me that “we often see patients who have saliva pool in the back of their throats.”

“Yes, I responded, that’s exactly it!  That’s what happens.  I swallow and some of my saliva just pools in the back of my throat.”

“But the test doesn’t show that,” she responded.

How can the test not show that?  I could feel the saliva hanging out in the back of my mouth even as we were discussing it.  Why didn’t the machine show it?  I not only had a pool, I likely had a whole tikki bar hanging out back there. Maybe even a water slide or two.ID-10074314

But alas, the test failed to show this.  The pathologist said that the swallowing issues could be MS related but usually nerve dysfunction in this part of the body would show other things; like diminished taste for example. Did I have diminished taste?

I didn’t think so.  The barium stuff had a taste. A disgusting taste but a taste none the less.  I had been at a friend’s house the other day and she made chocolate chip cookies that tasted pretty good.  I had about four of them just to be sure.

After more discussion we did come to a conclusion.  The pathologist told me I had a new medical condition.  Brace yourselves my friends- this is pretty upsetting.

After testing and talking it was determined that I now had xerostomia.

What is xerostomia you ask?  How serious is it?  What can be done about it?

Let me spare you from heading to WebMD out of concern for my health.  Xerostomia goes by another more common name that you might be familiar with.

Dry mouth.ID-10038435

The testing showed that the only thing the x-rays could really confirm was that I had dry mouth.  Since that is likely the fault of my “don’t pee all night” meds that only SOMETIMES work, my xerostomia is a direct result of multiple sclerosis.

Still, the new diagnosis didn’t completely explain the saliva swimming pool that was always in my mouth.  But then again, all this took place on day 1 of MS Awareness Month, which means no explanation was necessary.

The main thing that people need to be aware of when it comes to MS is that there really is no explanation at all….

Also in keeping with MS Awareness month I want to thank Modern Day MS for the great interview!  Check out this fabulous website for lots of great stories including how I try to use humor to cope with the MS crazy in my life!

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Another MRI? More Major Radioactive Insanity

Lessons from the tubeID-10015904

It’s time for another MRI later this week.  This will be my 7th. Or 8th.  Or maybe this is the 9th.  Who can tell anymore?  Despite all the time I have spent in the tube, I thought I should review this old post to remember some of the lessons I previously drafted.

2013 started in my world with two afternoons of MRI’s, my fifth set since my body started tingling all over, and not in a good way.   You would think that having previously undergone four MRI’s in a three year period, I would know what to expect.  And since I am generally not claustrophobic, the process wouldn’t be that horrible.   But each time I walk in, I have completely forgotten lessons learned in the past and it is like I am having this test for the first time.

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This year, however, I got smart and thought to write down the things I learned so that I will be better prepared for the sixth MRI series.  And since I will forget where I put this list, I am publishing it here so that maybe some of you can remind me of these lessons when I need them.  Feel free to adopt any of these yourself if you are about to be shot down the tube.

The technologists will tell you that MRI is an abbreviation for Magnetic Resonance Imaging.  They are lying.  MRI is actually short for “Major Radioactive Insanity.”  Major, because while there really isn’t any pain involved, while you are stuck in the tube it feels like a really big deal.

And do not let the technologists tell you any different, there is some sort of radioactivity involved.  If there wasn’t, why would you have to wait for the green sign to light up before you enter the room?  The way the technologists freak out if you step just a little too closely to the door while the light is red, there has got to be some type of radio something or other going on.  Radioactivity, radio frequency, Sirrus satellite radio, whatever.  It is radio something and it is serious.

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And insanity?  Yes, what goes through your mind while you are in there is nothing if not insane.

Ladies, you cannot wear a bra.  Even if you know for sure that there is no metal anywhere in or on your bra, there is, somewhere.  The little hooks or the synthetic material of a sports bra have microscopic bits of metal in them.   Even if you happen to be a 34A and wearing a light cotton/lace thingy with mesh hooks, you need to take it off; if only out of respect for those of us who must wear underwire over the shoulder boulder holders.

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Go to the bathroom before starting the test.  Once beginning the test, keep reminding yourself you do not need to pee again.  You really don’t.  It’s just part of the insanity, this bladder mirage.

If you panic that maybe the technologists have forgotten you in the machine and left for the day, don’t push the panic button to check.   It will only delay the time you are stuck there and really, really annoy them.  And trust me; you don’t want the technologists annoyed with you until after the MRI is over.

If you get super bored, don’t push the panic button just for something to do.  They don’t like that either.

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If you think you might seriously panic about being stranded (this particular panic occurs to me during the brain MRI when they actually have to lock my head into the MRI vise), then take the technologist’s car keys and lock them in your assigned locker.   You won’t be able to take the locker key into the tube with you (its metal), but you can hide it somewhere in the outer room and then kill the time in the tube trying to remember where you hid it.

At least it will be hidden from the techs so that they can’t leave until they bring you out and you have all searched for the locker key you so carefully hid.

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If, while your brain rambles during the test, you get a sudden desire to reach out to an ex-boyfriend, ex- boss, ex- party buddy, ex- friend, or ex- roommate, don’t do it as soon as you get your phone back.  This is another MRI mirage.  If contacting your ex anything wasn’t a good idea before you went into the tube, it is DEFINITELY not a good idea once you get out.

If your doctor orders something called “contrast,” at some point the technologist will slide you out of the machine and inject ink into your body. This does not mean that later in the day you will spit, sweat, pee or cry pretty colors, which is a total bummer.  I hoped to create my own MRI/MS Rorschach print.

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Damn, you can’t have any fun with MS.

Speaking of bodily fluids, you still don’t have to pee.  Well, ok, by now you probably do.   Try to ignore this fact.  You won’t be able to ignore it but trying to will at least give you something else to do until the test is over.

The MRI takes five hours.  It doesn’t really, but if you think that it does before you go in, the actual time it takes will be a little more bearable.

You will be able to keep your socks on.  If you choose to do this, make sure your socks have non skid, gripper soles, the kind the put on little kids feet pajamas.  If you don’t, when you are finally free to go you may be so excited to get out of there that your socks slip, causing you to slide across the floor, bang your head on the table you just got off of, and have to repeat the whole process all over again to see what damage you have just caused your brain in your excitement to get off the table.ID-100121631

At least the base line tests will already be done.

(So, no, I didn’t actually hit my head on the table when I slid across the floor.  But I came close and MUST remember feetie socks next time.)

Finally, the biggest MRI lesson is that if the technologist gives you a disc to take to your doctor, never, ever look at it without your doctor present.  If you do, you will be convinced that you have the spine of a frog, and the brain of Frankenstein which will cause you to enter into a state of depression the whole week until your appt where your doctor will tell you that what you were actually looking at was an old Rorschach test you happened to have hanging around your disc drive.

ID-100290700Happy insanity, ooops, I mean imaging, everyone.

 

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MS Travels to Nevada

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Doing something a little different my friends. This blog today is a guest blog by a colleague who wanted to share what the state of Nevada has going on in the way of fighting the MS beast. To be honest, I’d never thought of Nevada as a game player in this particular battle. When I think of Nevada I think of wedding chapels, Elvis impersonators, slot machines and, well, games. Poker to be precise. Turns out, this gaming state has a lot more to offer!

Read further to learn more….

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Las Vegas Events for people with MS

The root cause of Multiple Sclerosis may not be known yet, but know that you’re not alone. As stated on the website’s bio page, over 400,000 people are living with this illness and 200 people are diagnosed every week.

If you or your loved ones are diagnosed with MS, there’s no need to hide from the rest of the world. People suffering from MS need to make the most of their situation and try to live life to the fullest, and most importantly with a smile. Engaging in enjoyable activities is just one of the ways thousands of MS suffers counter the rigors of the illness.

First, there’s the Nevada MS Walk event that encourages people with the disease, as well as their loved ones, to bond on a walk for a worthy cause. This walk changes the world one step at a time by unify everyone in mission to helping find a cure to MS. With every walk, with every dollar raised, we get closer to finding the root and cures for MS.

Additionally, there’s the “Lights, Camera, Take Action on MS” where Southern Nevada service providers attend the event in order to answer the questions of people and at the same time offer help. Last year, actress Madeleine Stowe attended the event, which was graced by over 12,000 Southern Nevadans who were diagnosed with MS, where she told her story about how she took care of her father during the latter stages of his illness. Often she spoke about the funny side of her father and how he made light, and the best of his situation, encouraging others to do the same.

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About 23 years ago, there was no medicine approved for MS suffers. However, now they are about 13 different types of medicine are already available to help patients treat this disorder that makes the immune system eat away the protective covering of the nerves. And it is at events like these where people can find the latest developments regarding medicine and converse with other people who have been affected by MS freely, while finding solace in the fact everyone is steadfast in finding an end to the disease.

While Nevada used to be best known for its noisy and flashy casinos in Las Vegas but thankfully, it is starting to become a place which hosts a more varied entertainment portfolio, including MS-related fundraisers and awareness initiatives. Perhaps it is Nevada’s way of driving more traffic into the city, since its revenues have been largely effected by online gaming providers that not only offer convenient gameplay to their players but also a variety of games that get updated regularly as well as bonus perks for people who buy their credits online. Whatever the reason is for Nevada hosting events that have the potential to change the world, the truth of the matter is that it is doing great work and having a greater benefit than just increasing revenues.

Thank you Nevada!

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Lazy Bones

An MS think tank

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My new favorite song is a perfect song by my favorite band recorded back in 1973.  Yet, I’d never paid much attention to it before.  How can that be?

The song is 100 Years Ago by, of course, the Rolling Stones.  It is basically a look at aging which is ironic because Mick and Keith were just babies when they wrote it.  But I can’t imagine it would be any better if they wrote it now.

It’s filled with perfect lyrics like “Don’t you think it’s wise sometimes not to grow up?”(Yes Mick, I do,) “Now if you see me drinking bad red wine,” (is that even possible?) and my favorite, “Call me lazy bones..”

It’s a fun song and even if you’re not a Stones fan, (is that also possible?) it’s worth a listen.  And since we all have to age, MS or no MS, it doesn’t have much to do with multiple sclerosis.

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But the lazy bones line has got me thinking.

For a long time I’ve pondered the difference between fatigue, (incredibly terribly miserable fatigue,) and laziness.

Now my MS friends are starting to freak out at the word laziness, and rightfully so.  When you live with an invisible illness you live with judgment.  People, and by people I mean colleagues, neighbors, acquaintances, family, friends, doctors, and strangers, tend to prefer to not believe what you say is going on with you.  It’s easier for them to dismiss your diagnosis and/or assume you’re just lazy.  And it sucks.

And have you ever noticed that even if you don’t talk about your symptoms, suddenly people like to tell you what’s going on with them health wise?  When did an MS diagnosis make me a toll free medical health line? These same people don’t want any input and certainly don’t want to hear what’s going on with me medically.  They just want to vent and write me and MS off even though I’m not the one venting!!!ID-100296977

So I’m not talking about those “people” who make the lazy assumption.  I’m talking about when I try to decide if I’m lazy.

This bothers me so much that I’ve started thinking about it.

Truly, I can spend hours lying on my sofa thinking about the difference between laziness and fatigue.  (Is that lazy?)

I used to be independent. I used to be able to go to my job, work ten plus hours, do errands afterwards, come home and eat a quick dinner and THEN maybe even do laundry or go to a meeting for a committee I was volunteering on.

I can’t even imagine that now.  Slowly all that energy disappeared and before I knew it some doctor I didn’t even know was telling me I had multiple sclerosis and I started injecting myself with crazy expensive drugs.

Who’d thunk it?

So those days of being active for over 16 hours a day are long gone. According to Mick and Keith, about 100 years ago gone.

But I don’t like being inactive and so I don’t like thinking I may be lazy.  But I often feel lazy and so I start thinking and then I get more confused and start thinking some more.

Here are some of my thoughts-

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If, when I wake in the morning my whole body aches and is screaming for rest and I don’t get up right away, or get up, pee and go right back to bed to rest a bit longer, is that lazy or is that MS fatigue?

If I’m moving so slowly that it takes me an hour to shower and get dressed when I used to HAVE to be able to do that in 20 minutes in the past, is that lazy or is that MS fatigue?

If even doing the simplest errand such as going to the pharmacy and picking up a prescription is so exhausting that it’s the biggest accomplishment of my day, is that lazy or is that MS fatigue?

If it’s easier for me to just grab a bowl of cereal for breakfast rather than taking the time to put together a healthy smoothie, is that lazy or is that MS fatigue?  (For the record, I have started drinking healthy smoothies and while I know they are good for me, they haven’t helped with energy.  Perhaps I need to drink more than just three in a month?)ID-100348548

If it’s a cold, rainy Sunday and all I want to do is curl up under a super soft blankie with a good movie, is that lazy or is that MS fatigue?

If I happen to go say a few days or a few weeks or a few months without exercising even though everyone says that exercise is good for me, is that lazy or is that MS fatigue?

If someone asks me what I want to do or what my preference is on something and my brain is just too tired to decide and so I leave it up to the other person to decide despite their frustration, is that lazy or is that MS fatigue?

If I suddenly have this intense desire to bebop around my apartment while listening to say, for example, a Rolling Stones song but have to sit before the first chorus, is that lazy or is that MS fatigue?  (Who am I kidding?  The Stones give me enough energy for a whole song.  How can it not when one thinks about the time Keith Richards passed out on stage but still finished his entire set from the floor?)

If I spend some quality time responding to important emails and then reward myself with 20 minutes of dog and baby videos on YouTube, is that lazy or is that MS fatigue?ID-100128348

Does any of this even matter?  It seems to me that is does.

Which is why I spend hours resting and employing my personal think tank on the matter.  Yet, I haven’t come up with an answer.

Shouldn’t the MS scientists and peeps be working on this?  Oh right, they’re actually busy trying to cure this beast.

And so it is up to us, the individual MS’er to try to figure it out for ourselves.  And to decide what we can live with and what we can’t in the realm between MS fatigue and being active.

It’s not that my MS fatigue or laziness hasn’t accomplished anything.  In the five plus years since my diagnosis I’ve moved, started this blog and published a book.  (Well, actually, my publisher published the book.  I just wrote the darn thing.)

I’ve probably done other things too; I’m just too tired to remember what they are.

I insist on not giving up and do my best to accomplish what I can, when I can. And I probably worry about this issue more than I should.

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But the fear of being lazy continues to haunt me as I struggle to figure all this out.

Thankfully, Mick and Keith say it’s ok for me to call myself lazy bones every now and then.

I like my lazy bones; my fatigued, doing the best they can, good old lazy bones…

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Just another Weird, Weird Day

“My MS is not your MS and your MS is weird.”

Brilliant, semi-famous quote written by me

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Your MS is weird.  And sometimes, I suppose, mine is too.  Life with MS is certainly weird.  And then there are weird people and weird circumstances.  Recently, all this weirdness converged on what should have been a relatively normal, unweird day.

I dropped my mom off for a doctor’s appointment and then left to run an errand.  When I returned to the office and she wasn’t ready I made myself comfortable with an engrossing book. As I sat my throat grew dry and I noticed a water cooler in the corner of the waiting room. I kept meaning to drink some but just couldn’t leave my compelling read.  After this sentence, no, after this paragraph, definitely after this chapter, I will get up and get some water.ID-10056064

But my mom poked her head into the room and nodded at me, which caused the nurse behind her to motion me to follow them.

This was concerning. My mom is very private and hates medical stuff.  If I was needed in her appointment it could be a bad sign.  Turns out, it was simple miscommunication.  Her wave was meant to tell me that she wasn’t quite done but the nurse took it as an invite and insisted I join them.

“Well, you’re here now so you might as well stay,” my mom said.

I sat in a chair opposite the doctor’s desk and my mom sat on the table.  The doctor entered and my mom introduced us. I was surprised by his strong Greek accent as my mother had never mentioned it before.  I could barely understand him but it didn’t matter- it wasn’t my appointment.

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Since I was stuck there I thought I would listen even if I only understood one out of twenty words he said.  I managed to grasp that he was talking about sodium; ie salt, ie the stuff that makes fast food taste good.  He wanted my mom to cut down on sodium.  He wanted this so much that he kept talking about it, a lot.

At least I think that’s what he was talking about.

But he seemed to address most of his talking to me.  So what if I happened to be munching on potato chips- again, it wasn’t my appointment.

(Kidding.  I wasn’t munching on anything but was completely regretting not grabbing that water when I had the chance.)

He told my mom he had something for us.  He left and came back holding a loaf of bread.  He manipulated the plastic bag the bread came in so that a slice was near the opening and he insisted I take it and split it with my mom.  It was an order and I guess the reasoning was to suggest we now eat this particular brand of low sodium bread.ID-100151613

I gave my mom half the slice but didn’t know what to do with my half.  I nibbled on it because that’s what the doctor seemed to want but it was like sawdust in my mouth.  I was trying not to choke.

There was a trash bin in his office but throwing my half away seemed rude.  Without salt it didn’t seem very crumbly. Should I scrunch it up and shove it into my pocketbook?

The whole thing seemed odd.  I’d never had a doctor, even one of my own, offer me a snack before.   I thought of how when I go to church and my priest offers me bread he’s polite enough to also offer some wine to accompany it.  Could I ask this doctor for wine?  What’s the sodium level in wine?

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He then said that we should only get 150 mg of sodium a day.  While he was stating this he was also pointing to a chart that recommended 1500 mg a day.  I was more confused than ever and was now super afraid of salt and hoped he knew the Heimlich as I tried desperately to finish my half slice of bread.   This seemed like major medical weirdness to me.

Outside his office, it was past lunchtime and despite the snack my mom and I were both hungry.  But I couldn’t think of a single place to go for lunch that wasn’t a salt trap designed to suck us in.  My mom suggested a place and I agreed to go there but was firm.

“Mom, we can go there but I’m going to tell the waitress that we don’t need menus as we will have water and plain lettuce for lunch, no dressing.”ID-100182547

“Good for you,” she said.  “I’m getting a menu.”

I stopped in front of the placard that said “Please wait to be seated” and read the specials board looking for anything that wasn’t filled with evil sodium.

My mom made her way into the restaurant and chose a table.  What was she doing?  We were supposed to wait to be seated as the sign clearly stated when I read it again.  I scolded her and she came back.  She also read the sign which in her reading said, “Please seat yourself.”

How did the sign change its wording in the seconds between my reading it twice and my mom reading it?    Since I’ve been able to read since 1st grade, I decided that the sign changing itself was a clear case of multiple sclerosis weirdness.

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After errands I dropped my mom off and headed home.  Thinking about health issues and my MS lack of reading skill issues had me wiped.  But I just had to go to the post office before I rested.  Who knows what was waiting for me in my mailbox- the Publisher’s Clearing House notice of my one million dollar winnings?

An invitation from Bradley Cooper to be his date at the premiere of his new movie?

Free tickets to the dream vacation of my choice?

Fatigue was not going to keep me from missing such important mail!

I collected my exciting mail- the water bill- and then got back into my car which refused to start.  Try as I might, I absolutely could not turn the key in the ignition.

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I struggled.

I forced.

I whined.

I took deep breaths and tried again.

And again.

There were many strong looking males in the parking lot, the type that looked like they might know a lot about cars, but I was too tired, too shy, too independent, too WIMPY to ask for help.  I preferred to sulk instead.

After about 20 minutes of this I called AAA.  I answered all the nice agent’s questions.

“Did you make sure the car is in park?”

Of course I did.

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“Did you jiggle the steering wheel?”

Of course I didn’t.

I jiggled and turned the key and the car started.  It was then that I remembered this same thing had happened to me twice before and jiggling the steering wheel was the mysterious answer.  But I had forgotten this trick.  Automotive weirdness.

Back at home I figured I had earned myself a snack, something crunchy.  I was proud that I had recently purchased something from Trader Joes that was sure to satisfy AND be healthy.  It was a bag called Crunchy Curls– a potato and lentil snack.ID-100132490

I checked the sodium, just to be sure.  And the nutrition label said that while this snack had no sugar, it had 380 mgs of sodium!  That’s more than regular potato chips.

But it’s made from potatoes and lentils?  How can this be?ID-100180475

And that, my friends, is unfortunately called life weirdness.

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What was the book that had me so involved I couldn’t even break to get some water?  It was the newly released Something on Our Minds, Volume 3– an anthology of writings by people living with multiple sclerosis.   The works are as varied as the writers and MS itself. Best of all, all proceeds from the sale of this edition will be given to the Accelerated Cure Project, an excellent non-profit determined to cure the MS beast.

Something on Our Minds, Volume 3 is available on Amazon and is totally worth checking out!

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Another Christmas? Another 12 Days of Christmas, MS Style

 A multiple sclerosis Christmas carolID-100108779

I love Christmas.

I love Christmas songs.

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

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

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Weird, as my grandmothers always taught me that the Holy Trinity was Portuguese, but what can you do?

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

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

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

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

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

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

On the first day of Christmas MS brought to me: one ach-y bod-y

On the second day of Christmas MS brought to me: fingers all tingly

On the third day of Christmas MS brought to me:  three MS hugs

On the fourth day of Christmas MS brought to me: lots of blurry vision

On the fifth day of Christmas MS brought to me: brain completely spacey…..

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On the sixth day of Christmas MS brought to me: every day so sleepy

On the seventh day of Christmas MS brought to me: feeling kind of dizzy

On the eight day of Christmas MS brought to me: bladder very leaky

On the ninth day of Christmas MS brought to me: four shots so nasty

On the tenth day of Christmas MS brought to me: head feeling crappy

On the eleventh day of Christmas MS brought to me: legs acting lazy

On the twelfth day of Christmas MS brought to me: balance not so steady-

legs acting lazy, head feeling crappy, four shots so nasty, bladder very leaky, feeling kind of dizzy, every day so sleepy, brain completely spacey, lots of blurry vision, three MS hugs, fingers all tingly, and one, ach-y bod-y…..

Let’s sing it together, shall we?ID-10028320

NOT!

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

And for my non- Christian friends, may you have a healthy and happy season of all things good and not MS related!ID-100277785

PS- the girls in the Christmas hats aren’t me although I do own one and it does look pretty cute on me if I do say so myself.

The singing sisters aren’t me either….

 

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