Yvonne deSousa's Blog, page 12

Major Radioactive Insanity Times 3

An MSer is sent down the tube, again and again and again…

This is probably my most repeated blog post but the lessons remain.  And at my most recent MRI I learned yet another lesson- if you need to have a whole MS MRI series done (head, neck and spine, with and without contrast,) don’t do it all in the same day. That, my friends, is insanity.  I’ve never been claustrophobic.  Funny how after 2+ hours in the tube, suddenly I am…..

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.

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 serio

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.

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 is 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.

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 their 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 the key.  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.

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. Damn, you just 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, they kind the put on little kids feet pajamas.  If you don’t, when you are finally free to go you may likely 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 go 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.

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.

Happy insanity, ooops, I mean imaging, everyone.

Giggles are good for you my friends! And I can prove it!

Join me for a free webinar on September 13th at 1 PM EST where we will discuss the science and means of using laughter to fight your chronic illness, hosted by yours truly, sponsored by Genefo.com  Log in or sign up (free) at Genefo.com website to register!

 

Here Comes Gina Romani!

An MS positive, possibly

This blog is being re-posted in memory of Paula J. Perry, a lovely lady who definitely appreciated a funny story

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???!!!

Sigh………

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….

Wish you were still hanging around too Paula.  We’ll miss you…

 

 

 

 

 

Forgetting and Striding Away

Another MS attempt at getting healthy

I know that memory loss is a part of MS cognitive difficulties; I just sometimes forget.

Often I rely on those closest to me to help me remember important stuff.  That’s why you, my loyal and beloved readers, have let me down.  I forgot that back when I started this blog I had a ‘get fit’ plan and you didn’t remind me!

It’s not that I forgot I was supposed to be doing healthy things.  I just forgot I had a plan to do them.

A plan that included sharing with all of you my miraculous transformation from an award winning couch potato complete with a steady diet of Lucky Charms, Cheetos, chocolate and ice cream, to a decathlon ready super human who exists only on super foods that come from natural things you find in the woods or the jungle.

It’s ok- I forgive you.  Just don’t mind me when I blame you that my target weight is still a target I can’t even find with my industrial strength cheaters.

I have taken some healthy steps in my life.  I’ve finally accepted the importance of drinking water.  I even got an app on my cell phone that tells me how much water I need to drink and then sends me an alert when I’m falling behind.

It’s my coolest app so far.

Did you know that the recommendation of 64 ounces of water a day is wrong?  You’re actually supposed to drink half of your weight in ounces every day.  That means if you weigh 600 lbs you need to drink a swimming pool.

Daily. 

I don’t meet my goal every day (unless I add in wine which I think is ok-Jesus turned water into wine so it’s got to be the same right?)  But I am drinking way, way more water than I used to and I think it helps.

Get this bizarre only in an MS world fact- since I’ve been drinking a ton of water, my bladder issues have almost disappeared.  How’s that even possible?

Basic common sense- water makes you pee so how can drinking more water make you pee less???

The greatest thing about the app is that the alert is supposed to sound like water being poured into a glass of ice but most people think it sounds like a toilet flushing.  It’s really funny to see the look on people’s faces when they hear a toilet flushing in my purse.

Another important part of the health journey is the bane of my wellness existence-exercise.

I like walking and walking is good exercise.  The problem is that it’s cold and icy in the winter, rainy and full of pollen in the spring and hot and humid in the summer.  Autumn, however, is beautiful.

So beautiful that I just have to sit with a cup of tea and watch its beauty unfold.  How can I honestly expect to get much walking done when there is so much to admire right in my own backyard??

I’ve been goofing around on my WiiFit a bit more than usual. It helped that my summer company humbled the machine a bit.

The WiiFit thinks it’s all that and one can never measure up.

But it’s no match for two kids on a penny candy sugar rush combined with beach and drive in movie anticipation.  Let’s just say that the WiiFit was worn out and has been super nice to me ever since.

My Mii on the Wii

Recently I was reading a blog post by fellow MS blogger Kim Dolce (The Difficulty of Balancing Activity and Rest on multiplesclerosis.net) where she discussed her “strider” and how it not only helps her exercise but it’s good for posture too.

People have told me that I need to maintain my “core.”  I thought they meant that I wasn’t disposing of rotten apples properly.  Turns out that my “core” involves upper body strength and posture is a part of that.

Kim also said that all she has to do on her strider is swing away.

I can swing!

I decided to buy one despite friends and family warning me that I wouldn’t use it; it would just become a towel rack.  I took up the challenge and ordered the Sunny Air Walk Trainer.

Not so mechanically inclined, I made a list of people who could help me put it together when I got it.  If it actually got put together, maybe I would actually use it?

It arrived and I thought I would just open the box and take a peek inside.  I did.

Then I thought I might just take one of the pieces out.  I did.

And before I knew it, I was putting the damn thing together all by myself!  I don’t know what that did for my core but it sure made my brain feel pretty smart. 

Just having that accomplishment done was worth the price I paid for the thing.  I was so proud of myself that I didn’t feel the need to use it for like 6 months.

Ok, kidding. I actually started using it right away and I do like it.  It’s a little more than just swinging away but I do think it’s helping. 

And I vow to never allow it to become a towel rack, ever.  Except for when I had that young company that took on the WiiFit– it did become a towel rack then but only because we ran out of space for our wet towels.

I vow it will never AGAIN become a towel rack.

I’ve used it 20 times in the last two years, oops. I mean two months, and while that’s not great, it’s something.  And something’s better than nothing right?

So that is an update on my ‘get fit’ plan.  Here’s hoping I don’t forget about it again.

But if my memory loss does come back, can someone please remind me what I’m supposed to be doing with that big towel rack???

Friends, I know it’s pretty rude of me to express disappointment with you in this latest blog, especially since I’m about to ask you for a favor!  But who ever said that multiple sclerosis makes me smart???

I’ve been nominated for a WEGO Health Hilarious Patient Leader Award! 

I’m so excited! 

 

If you think that I may be worthy of such accolades, how about endorsing me?  I’ve attached the link just in case and endorsements are open through the month of August.  WEGO Health Endorsements

Thank you for reading!  I truly love and appreciate all of you!

 

 

The MS Art of Vindication

When science helps you kick butt

I know that it’s really, really obnoxious to say “I told you so,” but man, sometimes it just feels so good.

Does that make me obnoxious?

What if you say “I told you so,” with a smile?  Is that better?

What if you are clueless and inept when it comes to science and then science backs you up?  Can you say “I told you so then?”

I recently came across an article in the online version of Forbes Magazine called “Six Science Based Reasons why Laughter is the Best Medicine” written by David DiSalvo

See- I TOLD YOU SO!!!! 

Vindication is such a sweet sounding word…..

I’ve been saying that laughter is an excellent medicine since my MS diagnosis and I’m not even a scientist!

I’m far from it actually.  I have no brain for science anything.  I tried to read one of the Science for Dummies book once but found it too intellectual.

I’m so clueless I can’t even remember the name of the PhD degree my super sciencey cousin has.  It’s something to do with bio and medical and maybe engineering or something.  I don’t get it but I know that laboratories and tests and all kinds of other confusing things are involved.

When I was in my high school chemistry class I was doing a lesson and filled a glass test tube with water, put a one holed rubber stopper in the test tube, put a thermometer in the hole and then put the test tube over a Bunsen burner. 

I’m not sure what I was trying to figure out but if it was how to impale a thermometer into the classroom ceiling then I should have gotten an A.  I didn’t.  Still, I considered the experiment a success!

So I’m pleased to report that when I’ve exclaimed “how you deal affects how you heal,” over and over I was way ahead of the scientific curve!  Take that super brilliant cousin!

In fact, I’ve built my whole new writing profession, (can you call a blog and a book a profession-even if you don’t get paid,) on this premise.

I didn’t do that lightly my friends.  I did my homework.  Far be it from me to share such important knowledge without backing it up.

Here’s my proof-

Hypothesis- Laughter is good for you

Research-  Right after my MS diagnosis my little brother said something funny.  I laughed.  I felt a little better.  I told my friends what my brother said.  They laughed.  They felt a little better.

Experiment-  I started saying funny things.  I felt better.  I started writing funny things.  People read them and told me they felt better.  I started giving talks about the funny things I had written.  People laughed.  I felt good when they laughed.  The more they laughed, the funnier I became and the better I felt.

Proof-  Feeling good is good for you.  So if laughing makes you feel good then it stands to reason that laughter is good for you.

Conclusion- You guessed it- Laughter is good for you.  I told you so!  And I didn’t even need a lab coat or a Bunsen burner or anything!

Mr. DiSalvo is a little bit smarter than me and so he backs his research up more technically than I do.  He says things like “laughing activates the release of neurotransmitter serotonin” and “laughter has an anti-inflammatory effect that protects blood vessels…”

Basically saying what I said.  (See the research part of my experiment described right before this paragraph.  He also states that “when someone starts laughing, others will laugh..”   Hello- did he copy my experiment?)

I’m sure Mr. DiSalvo did his own research and since we both agree on the conclusion I want to give him credit where his credit is due. I would just like it noted however, that if he wins the Nobel Prize I want a cut.

The bottom line my friends is Laughter is Good for You!   It’s good medicine, (Mr. DiSalvo goes so far to state that it’s the BEST medicine) and it’s a super, excellent coping medicine!   Science says so!!

And if that’s not enough for you, I say so too!

PS- Kidding aside- this is a great, well researched article-check it out here, Six Science-Based Reasons Why Laughter Is The Best Medicine

Also, If you need help finding a laugh my memoir, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis is still available on Amazon and the reviews are phenomenal!

Almost finally, I don’t usually promote anything on my blog besides my own writing and my very humorous book, (like I said, that’s what the reviews say.)  But I thought this article was well worth promoting.  I also decided to promote something else- the art work of a talented friend also living with multiple sclerosis.  Her work makes me smile which is a precursor to laughing which involves a whole other scientific experiment.   But it’s great stuff!! The above pet rock designs make me smile and hopefully they made you smile too.  They are done by Cre8ive spirit.

Finally,  Happy Birthday America!!

 

Fourth of July image courtesy of nuttakit at FreeDigitalPhotos.net

When MS Gives You a Finger

A multiple sclerosis dummy

I know some of you may have read that title and thought I made a grammar mistake.  I’m certainly likely to make a mistake like that as this post will elaborate.

But no, in this case, I did mean “A” finger as opposed to “THE” finger.

But the two may be just a little bit related…

Despite the fact that I find the whole For Dummies series (you know, auto repair for dummies, internet for dummies,) too complicated, I don’t think of myself as a dumb person.  I was Valectdictorian of my high school graduating class.

(Did I spell that right? I bet you checked and I bet I didn’t.)

I even graduated from college.   So how can I possibly be dumb?  Receiving a diploma takes years of intense study and concentration, hard work and sleepless nights.  It takes major commitment and dedication. They don’t just give that cap and gown to anyone!

So it’s got to be this stupid illness called multiple sclerosis that makes me do stupid things sometimes.  It has to be. I refuse to accept anything else.

I wrote about this before in one of my first blog posts (Stupid MS,) but the MS stupidity just keeps on a comin and thus, I thought I would share some of it with you.

(Why do this?  It seems like the smart thing to do would be too hide the dumb things that MS makes me do but of course, sometimes MS makes me not so smart.)

For example, one cold winter afternoon I tried to warm up my tea but the cup wouldn’t fit in the microwave oven.  I kept shoving and pushing but the tea just wouldn’t fit.   It took my normally intelligent but MS dumb brain 10 minutes to realize that the problem was that I was trying to shove my tea into the toaster oven as opposed to the microwave.

There was the time I invited people over for dinner and then forgot to make dinner.  I had bought all the ingredients.  And had even pulled them out of the pantry.  But there was no dinner.

(In truth, it was less that I forgot to make dinner than that I forgot how long it would take. My company showed up on time and hungry but I hadn’t even started cooking.  Luckily the company was only my mom and my sister.  My mom took us out instead.)

It wasn’t that long ago that after showering, makeup applying, and blow drying that I then sprayed my hair with Lysol disinfectant instead of hairspray.  Not only are those two cans not even next to each other, they’re not even in the same cabinet!

My hairstyle might not have held but at least it was germ free.

Recently I was waiting for an important conference call and was agitated when it didn’t come in.

I huffed.

I puffed.

I sent an email demanding to know where my call was.  It was as I hit send that I saw that my caller indicated she would call me at 3, California time.

I contemplated that bit.  I wasn’t in California. I was in Massachusetts.  Perhaps that was the problem?

The return email explained that it was.  Almost three hours had passed while I was trying to figure what time I would actually receive the call when the call came in.

Then there was this little bit of devout, eager beaver, multiple sclerosis brilliance.  Despite my general clumsiness, my MS super clumsiness, my fatigue, and an MS lack of dexterity in my hands, I volunteered to be a Eucharistic minister in my church.  For my nonbelieving friends this involves holding, carrying and distributing the most holy consecrated bread and wine.

I volunteered because that sounds like a GREAT job for me.

How’s that going to turn out?  Only God knows.

And I mean that literally.

But the latest dumb thing I did may not seem so dumb.   I was in the middle of major spring cleaning that always wipes me out (for more on that particular MS hell check out my prior blog post, Mr. Clean is the Man  for Me,) when I noticed that my kitchen sink was leaking.  I put a call into my landlord who said he would be right by.

When cleaning, I need hardcore music to get me through.  So I was listening to Guns ‘n Roses Use Your Illusion II as I dusted every speck of dust I could possibly find.

Do you know that album?

Do you know the part of the song “My World,” where Axel Rose is trying to talk a girl into sleeping with him?  He says “Let’s Do It,” three times and then the girl starts making intense sex sounds?

Ya, that’s the part of the CD that was playing when my landlord walked into my apartment.

Thank you MS for that humiliating music choice at a time when I was expecting company.

I would like to say that MS left me some brain cells that directed me to turn the music off but that’s not the case.  The music ended by itself.  “My World” is the last song on the CD.

My landlord and I then spent an awkward afternoon while he fixed the sink and I tried to keep cleaning.

Two hours later he declared the sink fixed and left.

I went to get a glass of water and jumped in horror.

In my dishpan, mixed in with some dirty forks and spoons, was a finger!

It creeped me out!

It had to come from my landlord as he was working in the area. But wouldn’t I have heard it if he had cut off his finger?

There wasn’t any blood.  Did my landlord have a fake finger, a dummy finger so to speak?  Was the finger a cosmic payback for the dumb music choice?

I did gather my wits enough to grab a paper towel and throw the thing away.  And when I felt it I realized perhaps it only looked like a finger.  Maybe it was something else.  Maybe it was plumber’s putty shaped in a way that made it look like a finger?

I’m still not sure.  Normally, my rational brain would say yes, that must be what this weird thing is.   But my idiotic MS brain still insists that MS just gave me a finger.

“A” finger, not the, you know, “THE” finger.

 

What’s your hilarious chronic illness story?  Share it with us on the Giggles tab of this very website!

 

Gas Station Potty Adventures

Believe me…it definitely took years for me to get over the shock & pure embarrassment whenever bladder & bowel oopsies would happen without warning – especially whenever I was in the car or away from home. It took even longer before I could openly share my experiences & allowed the giggles to replace feelings of shame.

It happens, ya know? I’ve had to say “bye bye” to favorite undies tossed in restroom trash bins of various gas stations & other “odiferous” establishments. Nowadays, I try to be prepared (try to keep wet wipes & spare garments in the car), yet if I’m a passenger in someone else’s car, er…um… who knows – it’s often a luck of the draw. In the meantime, I’ve become quite savvy about public restrooms! I know which ones are easily accessible, usually unoccupied, don’t require hazmat suits, nose plugs, etc.

I should probably write some Yelp reviews regarding best public restrooms for MSers & our oopsies!

Giggles shared AND censored a bit to avoid being too graphic here for you readers!

Shock & Awe

Due to MS, Fibromyalgia & who knows what else, I suffer from major chronic insomnia. Of course with MS, I also have an overactive bladder. My bedtime routine consists of going to the bathroom first. Then I sit on the side of the bed, take my bedtime medication, which does contain a sleep aid, don my CPAP apparatus, and finally use a pain rub that is menthol, wintergreen, camphor, peppermint, and eucalyptus, etc…also I use Vick’s vapor rub.

It’s obvious to see why I use the bathroom first…before I get all the “invigorating” natural substances on my hand(s).

Fast forward 2 hours to a semi-conscious state & the strong urge to go tee-tee, AGAIN…forgetting that I have all that “stuff” on my hands. Half asleep I pull the toilet paper from the roll. When I’m alert I do take the time to fold the TP to make sure it covers the entire surface of my hand…while sedated, not so much. Suddenly, I feel burn, hot & cold simultaneously, and other sensations in the girlie parts & I become fully awake in 0.2 seconds!!! Talk about invigorating!!

But not in a good way! I spend the next few minutes trying to de-mint my nether regions!! I finally got back in bed & now I keep a package of personal cleaning wipes beside my pain rub to wipe my hands after use.

I hope this gave you a giggle or two!

Falling Down

Having MS for over 20 years, I’ve taken my share of falls.

Multiple Sclerosis will do that to you. MS throws your balance out of whack & binds your feet like your shoes are tied together.

My doctor will ask “Have you fallen recently?” To which I reply “Which day?”

I fall so often people think my aftershave is “Spic-N-Span.”

I fall so often when I floss I find carpet nap.

I’ve taken more tumbles than Simone Biles.

I’m the only guy I know who gets grass stains—on his shoulders.

My rear end has kissed the floor so many times I have rug burn on my butt.

Have I been injured? Oh of course. It’s all part of having MS.

I just gotta be more careful.

Keep moving my friends!

Healthy Voices Abound

Multiple Sclerosis goes back to Chicago!
Room with a view

Janssen covered my travel expenses to attend HealtheVoices17.  All thoughts and opinions expressed here are my own. 

(Thank goodness! 

It would be scary if a successful company like Janssen thought the crazy way I do!)

Crazy me

It was the first morning.  Despite the super comfy beds in the wicked nice rooms, everyone was dying for caffeine.  Newbies like me didn’t know what to expect but we definitely knew that some form of caffeine (tea for me-thank you) would help prepare us.

I was on one side of the steaming pots when I started talking to the friendly girl across from me.

Her- what’s your health condition?

Me- multiple sclerosis

Her- wonderful!!

I laughed and she got that uncomfortable look people get when they say something they think they shouldn’t have.  I have yet to hear someone say “wonderful” when told of my MS diagnosis.  But it was all good, because we were here.  We were two of the invited attendees for the HealtheVoices 2017 conference and despite my cognitive issues, I knew exactly what she meant.

Her name was Julie Cerrone (@justagoodlife) and she advocates for Psoriatic Arthritis and Avascular Necrosis.  Before that day I didn’t even know what Avascular Necrosis was, some type of a Greek god maybe?

But I was to learn as Julie wound up being seated at our table for our meet and greet exercise.  It was here that she introduced herself, told us she was a second timer and thus, was also an advisor, and explained her illness and her advocacy work.

She wrapped up by saying “Let’s advocate the shit out of each other!”

Laura, Dave, Me, and Lisa

And with that, the awesome conference began with over 105 advocates representing 35 different chronic health conditions.  And we weren’t just local, coming from all over the US and as far away as Thailand, Brazil, United Arab Emirates, that outback country to the southwest, Australia, and that rival hockey country to the North, Canada.

The theme for this year was Together We Thrive and thrive we did!

At the opening exercises I sat back and stopped worrying about if I should be worried that my emergency contact information was on the back of my conference badge.  (Did the sponsors know something I didn’t know?)

HealtheVoices is put on by Janssen and is designed to help online health advocates better advocate and feel supported.  With the inspirational speeches, the informative workshops, the friendships new and old, (I had met the four other MS advocates during my last trip to Chicago and we’re in touch often,) and the super positive energy, I definitely felt supported.

I hadn’t felt this supported since two friends picked me up out of some bushes after a night of heavy drinking over 25 years ago.  But that’s a story for a different blog.

T-rex and me

I met such interesting advocates such as an adorable T-Rex, who knew that extinction is a chronic illness-not me, and the Australian Mick Jagger of Inflammatory Bowel Disease Luke Escombe, (@MrEscombe.)   No, he didn’t make that title up- he had some cool Rolling Stones stories to offer as proof.  And he IS famous. In addition to being a singer, a comedian, and an amazing advocate, he is also Sydney’s sexiest voice contest winner.

I also fell a little bit in love with one of the speakers who gave a humbling but amusing speech that reminded me of a former US President whom I also love.

Janssen wined and dined us and I mean truly with the wine.

How can you make a fantastic conference even better?  Add wine with the nice dinners.

Speaking of dinner, they fed us well and even included healthy fare.  I actually tried quinoa and it wasn’t horrible!  I drew the line at crispy oyster mushrooms though. I mean really, sometimes the health kick can get a little crazy.

Me, Nicole and Laura

In addition to empowering each other we learned many things from the many workshops, things designed to help us better help our readers and followers.  I wish I had the room to share all of these things with you or to talk about the many amazing people I met or about particulars of all the illnesses I learned about but there’s just not that much room here.

I hope to use the lessons I learned to make my website a better resource for you.  And I’m keeping my new friendships close to my heart so that we can continue to share, grow and empower each other always

The bottom line is that I was blessed to be included in this fabulous event and I can’t thank Janssen and the many other sponsors enough for hosting it.  Also many thanks to my friend and fellow MS blogger Dave Bexfield, (ActiveMSers) who told me about the conference in the first place.  If you would like to learn more, check out HealtheVoices.com

PS  At the conference I was also able to take a turn during the open mic night.  If you would like to see my embarrassing five minute bit you can check it out on my YouTube channel here.  There are other videos up as well and if you watch I promise you will giggle, at least at how bad my video skills are!

And, speaking of giggles, don’t forget to go to the new Giggle tab of my website to add a funny chronic illness story of your own!

 

 

Produce and Junk

Multiple Sclerosis and veggies continue to battle

 

If you were an earlier follower of my blog you may be familiar with my complete dislike, distrust and disuse of vegetables.  Technically, I know they’re important.  And so, little by little, baby step by baby step, I’ve been working on developing a better relationship with them.  It’s taking years but I’m getting there. I’ve even developed a list of veggies that don’t totally suck-

Potatoes

Yucca (See how hard I’m trying-I bet you didn’t even know there was such a thing as yucca!)

Peas

Asparagus

Lettuce

Kale (Especially in a nice hearty Portuguese soup- see my prior posts- Kale, the New Frontier and Portuguese Soup with an MS Twist)

Spinach (when used as lettuce or mixed with pasta only- the whole gobbling up a full can was only something Popeye could appreciate.)

Tomatoes

Onions

Garlic

Leeks

Olives  (I’m not sure that olives are a vegetable but since I don’t know what the heck they are I’m putting them here.  I’ll take all the veggie credit I can get.)

Squash (Butternut AND Summer)

Sweet Potatoes

Zucchini

Then there’s the completely inedible vegetable list which includes broccoli and mushrooms.

I’m not sure that mushrooms are vegetables either.  What they are is fungus.  Seriously?  That’s disgusting.

I tell you the above to prove that I’m trying.   A friend recently told me that some grocery stores will actually take veggies and turn them into healthy spaghetti.  I LOVE spaghetti and actually tried the squash version- not too horrific.  I’m trying the zucchini version next.  And I might even try cauliflower rice.

Why should you care about any of this?   Why should I expect you to keep reading my boring produce list?

Because MS keeps messing me up when it comes to produce!

An unfortunate multiple sclerosis reality-if you have MS, you should eat a lot of vegetables.  But if you live alone, and have lost some dexterity in your hands, vegetables are freaking dangerous!  I just can’t cut the little suckers.

So I was thrilled when I saw a commercial for a product called a salad bowl cutter.  It’s this simple thing that allows you to cut, wash and eat vegetables safely and easily.  I figured this was the answer. Oh the fancy and healthy meals I would make once this was in my possession.

 

I added the $10.45 to my credit card and waited three weeks for this miracle worker to arrive in the mail.

And it did.

And it’s a total, ridiculous piece of junk.

First, it arrived with lousy packing that left the box demolished and totally unusuable to return without spending more money on a decent box.

The big problem?  Oh, it might do what it’s supposed to.  You probably can safely cut, wash and eat the vegetables in this device.

The problem is in order to use it safely you need to lock the top and the bottom pieces with a simple turn and lock motion.  Similar to how you open pill bottles which I have completely mastered.

This, however was impossible.

I’ve yet to be able to use the salad bowl cutter because I as checking it out, I locked the thing and it’s still freaking locked!

If my hands are too feeble to slice and dice veggies they are certainly to weak to unlock the plastic vault that is this useless piece of plastic.

I live in a small apartment building so I could probably knock on a neighbor’s door and ask them to try to unlock the salad bowl cutter.  But what about when I want to use the thing?  Should I knock on doors after I’ve cut and washed my salad and other produce and then hope people are home and ask them to help?

Do I want to be THAT neighbor?

I already have to bug them to put my ac in the window each spring.

You might think that this blog post really belongs on a product review website and you may be right.

But, I put it here to show one of the aspects of MS that people don’t think about and that causes incredible frustration.  Using a product like this should be simple.  Who would think it required any skill, especially if you are buying it to avoid another skill you may not have- professional knife juggler.

This little item should have been a problem solver.  Instead, for me and my MS it is a problem maker.  I now have this locked piece of junk sitting in my kitchen and no easy means to return it making me out a whole precious $10.45.

That may not sound like a lot but with MS budget issues that’s almost three whole RX copays.

I could call the company and yell at them but that sounds useless and exhausting. Plus, I can’t find a phone number anywhere!!

And so it comes around to the original veggie issue.  Just like it’s difficult for me to chop veggies it’s also difficult to open cans, even with the fanciest of can openers, manual and electric.  So I’m back to using frozen which means limiting options.

Thankfully french fries come frozen.

Are the problems that come from preparing vegetables and purchasing supposedly helpful pieces of plastic that are pure junk a huge problem when it comes to living with MS?

No.

Are they another unusual and frustratingly ridiculous part of living with MS that no one can really predict and can make someone like me outright crazy?

I’ll let you decide…..

PS   There is a slight possibility that I accidentally bought the generic version of this item which brings up another MS frustration- making cognitive mistakes that you are not able to easily correct.  But that’s a whole other blog.  Specifically- MS Moments Not So Magical

Note #1

Friends, I know you have your own chronic illness humor stories. And always in need of a giggle, I and my readers would love to hear them!!   Please share on the new Giggles page of my website.  Then please visit to read giggles from others as well.  Any chronic illness humor story will do as long as it is at least a tiny bit funny and PG.  

Note #2

Off to the 2017 HealtheVoices Conference in Chicago soon! Cannot wait to share my windy city adventures and really looking forward to making my website a better experience for all of you!  Stay tuned!!

Thank you Janssen for covering my travel expenses to attend!   #HealtheVoices2017

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