Category Archives: MS and Medical Tests

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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Lab Rat

Of rodents and multiple sclerosisID-100155157

A super crazy week in August equals a repeat of an old blog.  This happens to be one of my favorites!

“Despite all my rage I am still just a rat in a cage..”

Bullet with Butterfly Wings, Smashing Pumpkins

According to the Chinese zodiac (and no, I didn’t just have Chinese food, that is one take out I can avoid as not being worth the calories, probably because of all the vegetables and bean sprouts,) I am a rooster.

This was surprising to me as I don’t feel like a rooster.  Unless I happen to be one of the colorful Portuguese roosters that are symbolic of justice and of, well, Portugal. ID-100278801

No, lately I have been feeling like a rat.  This rat like feeling started at the end of 2013 when I agreed to participate in an MS clinical research trial.

The company that called me said that all I would have to do was go to their office for a brief, non-invasive exam, answer a few online questions and then participate in a follow up survey.  I wouldn’t have to take any drugs or be stabbed or anything crazy.  And to thank me for my participation, I would receive a check for $115.

Of course, I signed up.  I needed to help drug companies discover ways to either cure MS or find ways to make living with multiple sclerosis easier.

I needed to help others.

I needed $115 dollars.

ID-100138845But as the day drew closer, and I was driving to the office, I started to worry.  What could they possibly want to study about me?

It had to be a scam or, at least more involved than they said.

Would they put me in a cage like a lab rat and watch me try to get out?

Would I have to run on one of those hamster wheels while they took notes?

Would they put me in a maze and offer me pellets to see if I could find my way out?

If the pellets were chocolate, I bet I could do it.  If they were broccoli pellets, forget it!

These worries lead to thoughts about how important rodents actually are in my life.

Growing up, I had a pet guinea pig that I loved.  Sometimes.  Until I got bored with him.scan0001

My parents wouldn’t go for a dog and we weren’t a cat family, so desktop pets were the only option; goldfish, a hamster my sister named Tickles, and the guinea pig.  I got to name him.

Being an imaginative and original child, I named him Guinea.

Ahh, poor Guinea.  He led a short, boring life in my basement-my mom being terrified he would get loose in the house if he lived in my room. And Tickles, little did I know how huge Tickles’ kind would be later in my life.

My current multiple sclerosis medication is made with Tickles’ Chinese friends ovary cells.  Except, I think Tickles was a boy.  Do boy hamsters have ovary cells?

It didn’t matter I realized, as this medication is a shot and I am done was done with shots!  At my next neurologist appointment, my doc and I would pick a new, non shot drug to help me fight my MS.

Until then, off to be a lab experiment I went.  And they weren’t kidding, this was easy money. I mean, an easy way to give back to other MS’ers like myself!

I didn’t have to take anything off for the exam or even get my arm squeezed to a pulp by the blood pressure cuff. And the survey was easy.  The only stressful part was all the paperwork I had to do.

They left me in an office alone while I filled it out.  And they gave me chocolates from the big candy bowl they had at the reception desk. ID-100197288

Hmmm, were they watching me while I filled out the paperwork and munched?  Was that the experiment?

The next week I completed the follow up survey, (which was about walking issues by the way,) and stopped feeling like a lab rat.

Until I got to my neuro appointment later that day.

“We could try oral med #1.  The main side effects reported with that are extreme GI discomfort (ie, diarrhea) and flushing (ie, hot flashes.)  Not everyone gets them though so we could try it and see how you do.”

“We could try oral med #2.  The main side effect reported with this one is alopecia, (ie, thinning hair.)  Not everyone gets that though so we could try it and see how you do.”ID-100128778

“We could try oral med #3.    Oh no, wait, you tried that with your last doctor and it turned out they discovered a weird untreatable heart condition that is not dangerous unless you take oral med #3.  Previous trials and data show that your heart could stop.  We definitely don’t want you to try that.”

Suddenly I felt like a lab rat again.  Trial after trial seems to be the way of multiple sclerosis.

It was at that moment that loving memories of Guinea and Tickles came back to me.

My current medication works, has side effects that I am used to and is helping me to be strong in the throes of multiple sclerosis.

Yes, I STILL hate shots.  But maybe a drug that is made from rodent cells is better than being tested like a rodent.

Apparently Chinese hamsters are made of good stuff that can help us humans fight disease.  I made the decision to stay with my current drug.  I felt confident that it was the right decision and would continue to save the day when it came to my MS progression. ID-10048159

That thought reminded me of another rodent.  One who was super strong and super brave and ready to fight the bad guy, even if the bad guy was a disease.

“Here I come to save the day! That means that Mighty Mouse is on the way!”  Philip Scheib/Marshall Barer

Does anyone happen to know if Mighty Mouse was Chinese?

Note- No rodents of any kind were harmed in the writing of this blog post.ID-10064796

 

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A Zombie Goes Down the MRI Tube

Are you an MS zombie too?

Earlier this week, someone posted the above picture in one of my Facebook MS groups.

(Sorry, fellow MS’er and poster.  I didn’t want to steal your pic but I really liked it and was desperate for a blog post idea.)

I laughed out loud at the picture and immediately commented that I loved it.  Some of my fellow MS friends agreed.

Some did not.

They respectfully brought up the fact that images like this one can diminish MS, appear to make fun of MS or give people a false sense of what we go through.

I had never thought of it this way and since I respect all opinions, and have a tendency to ponder, I sat with the opposing opinions for a while.  I sat with them right into the next afternoon as I was about to get my 25th MRI.

 

(Kidding- I haven’t had that many MRIs although it often feels like it.  If it really was my 25th I would be expecting a big present from the technologists.  I think the 25th anniversary is silver which the technologists could NOT give me as no metal is allowed in the MRI room.  Damn, MS got me again!)

Anyway, I did get a little surprise at my MRI place-I have no idea what the official name is- as they have added music to the MRI experience.

People had told me over and over that they have been able to listen to music during their MRIs but I didn’t believe them.  I figured they were just trying to make me jealous.

 

But apparently it’s true as I was able to listen to music during both days this past week when I was stuck in the tube.

In the room where they have you change into scrubs- mine were a pretty blue, I would have taken them for a present but they wouldn’t let me-there’s a list of the artists you can listen to amid the knocking and whirring of the machine.  They had about 30 artists to choose from including Johnny Cash, Andrea Bocelli, Abba, Beyonce and John Cougar Mellancamp.

I do have one complaint amid the musical praise- there was no Rolling Stones!  How could that be? A selection of music not including the Stones is like leaving a huge gaping hole in the list, like a missing puzzle piece.  Like a puzzle of the United States with the Texas piece lost. It just isn’t complete!

 

Anyway, I chose Tom Petty.  The technologists got me all settled and scrunched into the machine and then started the music.  The first song was one I had completely forgotten about, Zombie Zoo.

How perfect since zombies were on my mind.

You can make a big impression or

Go through life unseen

You might wind up restricted and over seventeen

It’s so hard to be careful, so easy to be led

Somewhere beyond the pavement

You’ll find the living dead

Dancing at the zombie zoo

Painted in a corner and all you wanna do is dance down at the zombie zoo

Tom Petty

Perhaps you’re thinking that the above song has absolutely NOTHING to do with multiple sclerosis.  You would be right.  Unless you happen to be in an MRI tube already thinking about zombies.   Then it all makes perfect sense.

Maybe the zombie zoo is an MS mixer or fundraiser.

 

And we MS’ers really can make a big impression.

And it is so hard to be careful when you have MS.  Between fatigue, brain fog, diminished vision, and balance trouble it is very, very hard to be careful.   Sometimes you do want to be led.  Just sometimes.  Other times being led can annoy the crap out of you.

Zombie Zoo stayed in my head while other Tom Petty songs played.  Don’t even mention Free Fallin- that’s an MS song for sure.

Right about the time they rolled me out of the tube to add dye to my veins that would light up the MS activity in my body sharper than the Vegas strip- instead of flashing Penn and Teller, $9.99 buffet, Texas Hold’Em, these lights in your body scream- multiple sclerosis, t1 lesion, t2 lesion, and my favorite- MS was here….

 

To get my mind off zombies I asked them to change the music to Pink.  I forgot why I love Pink.  I love her because her music gives me energy and makes me want to dance like a crazy person- not a good idea when you are stuck in a tube and the technologists are yelling at you to stay still.

So what could I do? I went back to thinking about zombies and the Facebook zombie picture.

I decided that to each his own.  If some of my fellow MS’ers don’t like the picture, that’s ok.  But I do.  Here’s why.

Zombies are frightening but not real.  MS is frightening and it’s very real, frighteningly real.

If I want to compare the two by my shuffling gait, my extreme brain fog, or my incredible exhaustion, and if by comparing the two it makes me laugh, then so be it.  Life is too short and when we can grab a laugh, awesome.

 

I guess it’s like when I hear a joke about my Portuguese ancestry.   I will likely laugh out loud. Unless someone who’s not Portuguese is telling it.  Then I’ll probably get mad and pour a pot of Portuguese soup over their head.

(I would never actually do that.  It would be a waste of some good stuff.)

Back in my 20’s I went to a Halloween party dressed as a black magic woman.  The party was scary.  The house where it was thrown was scary.   This very scary guy came up to me and said “you really shouldn’t mess with things you don’t understand.”  Since he said it in a super creepy way, I grabbed my friends and we bolted to the nearest dive bar for safety.

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So I don’t mean to tempt fate by talking about zombies.  If the zombie apocalypse ever does happen I will be the first one hiding and screaming.

But sometimes, just sometimes, comparing my frightening illness to a make believe zombie is funny.

And it makes me feel better too.

I hope it’s the same for you.

And if so, perhaps I’ll see you- dancing at the zombie zoo….

 

Brain Cog Fog Gets an Evaluation

A little peek at a little MS Madness!

As the writer I claim to be, I could lie and make up some brilliant excuse as to why today’s blog is not as creative as I usually try to make it.

 I could write that I am in Paris being wined and dined by a handsome stranger.

Or I could write that I am at Keith Richards’ Jamaican villa, lying in a hammock and looking at the crystal blue water while he writes new music nearby.

Maybe, I might scribe, I was abducted by aliens, for real this time, and they haven’t brought me back to Earth yet.

But the truth of the matter is that I am just tired; really tired. I am so tired, that miraculously, MS hasn’t given me anything new to write about this week.

And, if truth be told, I am still trying to sell a book or two and thought maybe today, I might just entice you with a look at an excerpt from MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.

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Since my brain is so tired, I thought the excerpt I would share should appropriately be from a chapter called Cognitive/Schmognitive which details brain cog fog and specifically, my first neuropsychological evaluation.

(Try saying that five times fast.  If you can, you don’t need a neuropsychological evaluation.)

If you like this excerpt and would like to get your own copy, you can buy one where all other amazing literary tomes are sold; except maybe mega brick and mortar stores as they don’t quite love MS Madness yet.  But maybe if you request it……

 

Thank you friends!   And remember, a portion of the proceeds from each sale of MS Madness goes to non-profit agencies searching for a cure for multiple sclerosis or non-profit agencies that help those living with chronic illness.

Have a restful weekend.

 

“…….The doctor introduced me to her assistant and we started the process. After some brief questions she showed me a drawing and asked me to write in paragraph form what I saw. I thought this was likely a simple exercise to show off my most basic grammar and spelling skills. I had just told her the only career path I could conceive of was becoming a writer. I had to prove that it was at least a possibility. I asked how much time I had. She told me to take all the time I wanted. Did that mean the entire four hours? I think she was expecting a basic description of woman doing this, child doing that, etc. But I saw a whole story in the drawing and wrote it, complete with a dramatic subplot and a commentary on the decline of a simple moral compass in current technology dependent middle class America. Eventually the doctor asked me to stop. Her report on the testing noted: “narrative handwriting sample was creative in content.” Perhaps I should have asked for it back to see if I could publish it. I needed the money, after all.

 

From there, things went downhill. Her assistant took me into this tiny room where she proceeded to have me memorize, spell, associate words, disassociate words, dissect words, add, subtract, remember, repeat and any other thing you can possibly do to someone’s brain. Slowly my head began to expand. Just remembering the test is bringing the awful headache back. The final report shows I tested pretty well but it didn’t seem so at the time. At one point, I could not tell the assistant the name of our president. Instead, I said, ‘I can’t believe this, I love him. I voted for him. I can see him in front of me and can see his family. He has a weird name but is a good guy.’ My Republican friends said that this memory loss was because my brain was blocking out disturbing thoughts.

 

The part of the test I did the worst on was identifying something missing from a picture. Maybe it was the artist in me altering common perceptions, but they would show me a picture and ask me what was left out. I couldn’t tell them and would say, ‘nothing, everything is there.’ The assistant would insist something was definitely missing. Then, to make her happy, I would make something up. If it was a picture of a puppy, I would say a little boy. Every puppy needs a little boy to hang out with. And the assistant would begin writing in her notepad. One picture was of a leaf, what could possibly be missing from a picture of a leaf? A leaf was a leaf. But the assistant would state ‘No, something was definitely missing,’ and we would start all over again.

 

One picture was of a mother and son walking on the beach. I grew up on Cape Cod. If something was missing from a beach picture I should have known what it was. I kept guessing—a fishing boat, tourists, whales, a keg of beer, sandcastles, nude sunbathers, seaweed, litter, suntan lotion, a cooler, shells, keep off the dunes signs, Jaws, park rangers. The assistant scribbled away………………….

 

Three weeks later the doctor called and said she had the test results. She told me the MS had caused my brain to slow down a bit. She compared it to her elderly father who didn’t have dementia, but whom she had to speak to slowly so that he would better understand her when she was telling him something. She said my brain was like that, an old man’s. She also told me that I should accept that my multi-tasking skills, skills I once prided myself on, were pretty much shot. I would now have to realize it might take me longer to process things, especially since the test was done in a controlled environment. Exhaustion, stress, and noise would likely increase my symptoms. She recommended that I visit a vocational specialist, whatever that was, and that I only work part time. She wouldn’t tell me what was missing from the beach picture as she said someday I may need to do the test again.

 

The breakdown of the test results seemed to be that cognitively, I wasn’t a total mess—I was just an old man. Good to know.”

*********Super top secret information just for you- more excerpts from MS Madness! are included in the BOOK tab of this website*******************

 

Unbalanced Cycle

More multiple sclerosis NO balance issues and a contest winner

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My last blog discussed how I had failed the heel to toe test at my neurologist’s office and how that caused drunken memories and great concern. It concerned many of my readers too, which made me analyze this over and over. Then I decided to take some action!

Naturally klutzy my whole life, until the heel to toe test incident, I hadn’t given my balance much thought. I did fall this past summer but that was only because Fido, my pet portable ac unit, tripped me. I fell again a couple of months later but that was only because I was packing up my home after needing to move and I was incredibly grouchy about it-the move and the packing.

But on a visit with family recently, I fell again. Not wanting to admit MS was the problem, I decided to make it a crime of assault instead. The sidewalk attacked me.

There is even a crime scene photo-

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These goldfish didn’t survive the crime. They landed on the ground when my two year nephew dropped them to quickly reach for the doorbell.

No, he wasn’t reaching for the doorbell to get me needed help. He just loves pushing the doorbell. And with me on the ground, there was no adult to stop him.

I did get my first black eye from the incident which I tried to take a picture of, my first selfie. But it didn’t come out; proving that I should not take selfies, ever. But you totally should have seen what the sidewalk looked like when I was done defending myself. The crack I gave it looked something like this-

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But what if these falls have more to do with balance than assault charges or klutziness? Maybe, they are a combination of both.

Suddenly I realized I can do something about this! I don’t have to be content with being a Fido/sidewalk victim, at their mercy whenever they decide to be obnoxious. My Wii Fit has balance exercises I can do.

I went looking for the Wii Fit. It’s not that I have been neglecting it exactly. It’s just that I only moved a few days ago and the Wii Fit board got pushed aside during the move. I hadn’t unpacked it yet.

Ok, ok, the move was actually five months ago, but that is a few days in MS terms.

I pulled it out, took the batteries from the TV remotes and put them in the Wii Fit board, after removing the old ones and cleaning up battery acid in the compartment-guess it had been a long time since I used my Wii Fit, and then checked out the exercises.

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I discovered a new balance exercise I hadn’t tried before- ski jumping! Aren’t female ski jumpers entering the Olympics for the first time this winter? I need a goal. I will practice and practice and then enter the Olympics!!!

No, I’m not crazy. I know I would never get good enough in time for this year’s team. But the next Winter Olympics, I’m in!

Ahhh, but the Wii Fit is a cruel and bitter trainer. It refused to cooperate. When I would do the ski jump game, it would tell me I failed. Over and over I would try, eager to improve and become Olympic ready. And over and over my TV would flash the word unbalanced at me.

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Unbalanced, like a washing machine stuck in a wet useless cycle, unbalanced. This was almost more upsetting than the heel to toe test.

Luckily, I found other balance exercises that I did pretty well at.

Ski slalom for one. I aced the ski slalom game.

And tightrope walking. I was actually pretty good at that. And, the tightrope on the game is between two tall skyscrapers. Yet, I didn’t fall once!

Ok, new goal- Nik Wallenda watch out!

I’m training to be famous tightrope walker!

 

Contest Winner!

Only a few more weeks until the release of MS Madness! A “Giggle More, Cry Less Story” of Multiple Sclerosis!

My publisher won’t give me an actual release date for fear that I will stalk them if it is late, which of course, I would. But they have said that mid- February is likely!

Please keep an eye on this site and my FB page for updates.

One person who doesn’t need to watch for updates as she will be getting an autographed free copy along with a $10 gift card is reader Kym B from NJ! Her name for the MS monster on my cover won my most recent contest.

The name she entered is Myron. Myron just seemed to fit. I think I will refer to him as Myron, the myelin munching monster.

Congratulations Kym!

And thank you to all for entering and for supporting my writing!

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Image courtesy of Ambro/FreeDigitalPhotos.net

Image courtesy of Stuart Miles/FreeDigitalPhotos.net

Image courtesy of winnond/FreeDigitalPhotos.net

Image courtesy of David Castillo Dominici/FreeDigitalPhotos.net

I USED to Walk the Line

Multiple Sclerosis NO balance issues

Because you’re mine, I walk the line     Johnny Cash

Don’t worry friends, this blog isn’t another lame MS parody of a common song. This blog IS about sorrow. And heartbreak. And the realization that sometimes the life skills you learned before MS are just shot with the onset of MS.

And by shot I don’t mean injections. I mean shot as in the slang use of the word. As in destroyed, demolished, gone away…

I mean shot as in alcohol. And not alcohol swabs. Alcohol like Jagermeister or Goldslager (“do I have any gold specs in my teeth?”) or Jack Daniel’s or some other type of alcohol.

 

Yikes, I am feeling nauseous and hung over just remembering those days.

What I am talking about is the fact that I totally failed when my neurologist had me walk a straight heel to toe line in his office. How could that possibly happen? I have been practicing that test as a precautionary matter since I was 16. I was the master of the heel to toe test!

My friends and I thought it was a crucial skill to acquire before we turned 21, lest we get stopped for drunk driving. We practiced sober. We practiced buzzed. We practiced drunk. We were heel to toe ninjas!

 

That was not necessarily a good skill to have or a skill to be proud of. I know that now. And I’m not advocating practicing to pass field sobriety tests. It is more important to do everything in your power NOT to drink and drive. That is the real skill to master.

Luckily, while my friends and I were practicing, we were too stupid to appreciate that we didn’t need that skill. Where we lived, you could walk everywhere. And if you were too drunk to walk, everybody knew everybody else and someone would pick you up off the sidewalk and bring you home.

One time I was definitely too drunk to walk home by myself. A more sober guy walked me home and was a perfect gentleman about it. Yet, for fear of my mom who had a reputation of being tough, he stopped at the bottom of my quiet street.

“Ok Yvonne, I can see your front door from here and there is no traffic. I’ll watch you walk into your house. You’ll be fine right?”

And he did watch. He watched me walk into our patio furniture and tumble right over it. The effects of a few Kamikaze shots, maybe?

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But never once did I find myself in a situation where I actually had to perform the test I was sure to ace; until this month at my neuro’s office. And the failure was a shock.

I didn’t take more than one step before I fell off the line. I tried again. Hands up in the air to steady myself and one and half steps later, off the line I went.

This, more than the constant bladder, the constantly being spacey, the constantly being cold, the constantly being hot, the constantly being too tired to even put on makeup, let alone go out with it on, reminded me that those foolishly fun days were over.

I did my best to adjust to this latest MS distress. So much for the years and years of practicing the heel to toe test. All those hours are just, well, shot.

 

Then I got very scared. What happens if I am innocently driving to my neurologist or church with no alcohol in me, aside from the alcohol ON me after doing my latest shot (shot as in injection here,) and I get stopped by the police? I now know I will fail the heel to toe test!

This concerned me so much that I looked up how the actual field sobriety test works.

Seems when they make you walk the line, the police are looking to see if you can do eight things: keep your balance at the start, follow directions, keep your balance during the test, actual touch heel to toe, keep from stepping off the line, keep from using your arms to balance yourself, turn correctly at the end of the test, and take the number of steps they tell you to.

If you fail more than two of the above, you are probably legally drunk. I would miss all of them! That would make me super, duper drunk in their eyes!

And when I would try to explain that I am not drunk, I have MS and cognitive issues, I would likely not be able to explain to it to them!

And I would be so nervous I would start slurring my words!

By that time, the bladder would be screaming and I would start dancing around!

If I get stopped for any reason, I am headed to jail for sure! And there is no way they will let me have shots of any kind in there…

As if multiple sclerosis wasn’t scary on its own, we now need to factor in the police. What’s an MS’er who has practiced and practiced and practiced the heel to toe test to do?

I’ve pondered this and pondered this, rested and pondered this some more. The only thing I came up with- get lots and lots of “I love the police” bumper stickers.

 

And right next to your driver’s license, carry your National MS Society membership card and your neurologist’s phone number just in case.

And most important, MS or no MS, don’t drink and drive!

Even if you can pass the heel to toe test.

 

 

Lab Rat

Of rodents and multiple sclerosis

 

“Despite all my rage I am still just a rat in a cage..”

Bullet with Butterfly Wings, Smashing Pumpkins

According to the Chinese zodiac (and no, I didn’t just have Chinese food, that is one take out I can avoid as not being worth the calories, probably because of all the vegetables and bean sprouts,) I am a rooster.

This was surprising to me as I don’t feel like a rooster. Unless I happen to be one of the colorful Portuguese roosters that are symbolic of justice and of, well, Portugal.

 

No, lately I have been feeling like a rat. This rat like feeling started at the end of 2013 when I agreed to participate in an MS clinical research trial.

The company that called me said that all I would have to do was go to their office for a brief, non-invasive exam, answer a few online questions and then participate in a follow up survey. I wouldn’t have to take any drugs or be stabbed or anything crazy. And to thank me for my participation, I would receive a check for $115.

 

Of course, I signed up. I needed to help drug companies discover ways to either cure MS or find ways to make living with multiple sclerosis easier.

I needed to help others.

I needed $115 dollars.

But as the day drew closer, and I was driving to the office, I started to worry. What could they possibly want to study about me?

It had to be a scam or, at least more involved than they said.

Would they put me in a cage like a lab rat and watch me try to get out?

 

Would I have to run on one of those hamster wheels while they took notes?

Would they put me in a maze and offer me pellets to see if I could find my way out?

If the pellets were chocolate, I bet I could do it. If they were broccoli pellets, forget it!

These worries lead to thoughts about how important rodents actually are in my life.

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Growing up, I had a pet guinea pig that I loved. Sometimes. Until I got bored with him.

My parents wouldn’t go for a dog and we weren’t a cat family, so desktop pets were the only option; goldfish, a hamster my sister named Tickles, and the guinea pig. I got to name him.

Being an imaginative and original child, I named him Guinea.

Ahh, poor Guinea. He led a short, boring life in my basement-my mom being terrified he would get loose in the house if he lived in my room.

And Tickles, little did I know how huge Tickles’ kind would be later in my life.

My current multiple sclerosis medication is made with Tickles’ Chinese friends ovary cells. Except, I think Tickles was a boy. Do boy hamsters have ovary cells?

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It didn’t matter I realized, as this medication is a shot and I was done with shots! At my next neurologist appointment, my doc and I would pick a new, non shot drug to help me fight my MS.

Until then, off to be a lab experiment I went. And they weren’t kidding, this was easy money. I mean, an easy way to give back to other MS’ers like myself!

I didn’t have to take anything off for the exam or even get my arm squeezed to a pulp by the blood pressure cuff. And the survey was easy. The only stressful part was all the paperwork I had to do.

They left me in an office alone while I filled it out. And they gave me chocolates from the big candy bowl they had at the reception desk.

Hmmm, were they watching me while I filled out the paperwork and munched on Hershey’s kisses? Was that the experiment?

The next week I completed the follow up survey, (which was about walking issues by the way,) and stopped feeling like a lab rat.

Until I got to my neuro appointment later that day.

“We could try oral med #1. The main side effects reported with that are extreme GI discomfort (ie, diarrhea) and flushing (ie, hot flashes.) Not everyone gets them though so we could try it and see how you do.”

“We could try oral med #2. The main side effect reported with this one is alopecia, (ie, thinning hair.) Not everyone gets that though so we could try it and see how you do.”

“We could try oral med #3. Oh no, wait, you tried that with your last doctor and it turned out they discovered a weird untreatable heart condition that is not dangerous unless you take oral med #3. Previous trials and data show that your heart could stop. We definitely don’t want you to try that.”

Suddenly I felt like a lab rat again. Trial after trial seems to be the way of multiple sclerosis.

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It was at that moment that loving memories of Guinea and Tickles came back to me.

My current medication works, has side effects that I am used to and is helping me to be strong in the throes of multiple sclerosis.

Yes, I STILL hate shots. But maybe a drug that is made from rodent cells is better than being tested like a rodent.

Apparently, Chinese hamsters are made of good stuff that can help us humans fight disease.

I made the decision to stay with my current drug. I felt confident that it was the right decision and would continue to save the day when it came to my MS progression.

 

That thought reminded me of another rodent. One who was super strong and super brave and ready to fight the bad guy, even if the bad guy was a disease.

“Here I come to save the day! That means that Mighty Mouse is on the way!” Philip Scheib/Marshall Barer

Does anyone happen to know if Mighty Mouse was Chinese?

Note- no rodents of any kind were harmed in the writing of this blog post.

 

Fun Book News

Check in next week friends for the last contest before the release of MS Madness! A “Giggle More, Cry Less” Story of Multiple Scler

 

 

 

MS Insanity Galore

A multiple sclerosis contest and some multiple sclerosis advice

*******Contest*******

I’m starting this holiday month and this week’s blog off with my latest contest friends!!! I promise as long as there are entries, there will be at least one winner!

The idea behind this contest is to get everyone excited for the February release of my book MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis.

The first place winner of this month’s contest will receive a $25 Amazon gift card as well as an autographed copy of MS Madness. The next five people who answer somewhat correctly will each receive a free ebook of MS Madness.

Please enter by sending me a private message either through the contact section of my website, or by liking my yvonnedesousa.com Facebook page and then sending me a private message there. The first accurate answers will win.

Please send in your answer no later than midnight on 12/26/13. The winner will be announced in my 12/27/13 blog.

******Question******

So here is the question for the December contest-

I open MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis with two different quotes about the importance of smiling and good humor from two very different sources. What are those sources?

******Hint******

One source is the Bible and the other is a song from my favorite band. The most accurate answer will include a book of the bible and a song title. If no one gets both, the first person to guess one or the other will win.

Good luck everyone! And now for today’s blog-

It is a repeat but as I hang out on MS social media sites, it seems like this issue is relevant for many and may be worth a second read.

******Blog******

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 serious.

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.

 

 

 

This MS Moment is Brought to You by the Letters ‘F’ and ‘U’ and the Number ‘2’

Multiple sclerosis meets therapy meets Sesame Street

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Dear Friends,

This week’s blog is an oldie but goodie and one of my favorites.  I chose to re-post this one as I am feeling a little overwhelmed this week.  However, it is important to note, I have not yet returned to therapy.

It was Elmo that finally did me in. Yes, Elmo, as in Tickle Me. But maybe that is not fair. While he was the catalyst, it was really his helpful, female puppet friend Betty Lou that was the root of my actual demise.

It didn’t help that I came late to the magic and wonders of Sesame Street. Growing up in the early seventies, public television was a somewhat radical concept and the new children’s programming seemed to threaten subversive and counter-culture undertones in my mom’s mind. The Brady Bunch and The Flintstones were much healthier- nice, safe family values.

 

As I grew out of my toddler years her television concerns continued. The Partridge Family was NOT ok. The fact that Mrs. Partridge was traveling around the country in a bus and allowing her children to perform rock concerts in front of out of control teens was EXACTLY what was wrong with the country. At least that’s what my mom always said.

By the time she became a grandmother she relented somewhat and relaxed her television rules. I would watch Sesame Street with my four year old nephew and we enjoyed it immensely. I remember rolling around on the floor laughing and crying after a recent breakup with some guy or another while Patti Labelle sang How I Miss my X to a very sad looking X. I thought the scene was adorable and was speaking directly to my heartbreaking soul.

“Drew-don’t you get it? Her ex is the letter X! Isn’t that a riot? And look, X misses her too. They’ll get back together- I just know they will.”

My nephew looked at me as though I was nuts and ran off to play with his toy fire engine.

Anyway, back to modern day. I was in the midst of a horrible month filled with paperwork, appointments, highs, lows, good news, bad news, good advice, bad advice and whatever else one can throw into a month. After a frustrating breakdown during appointment number six, it was recommended that I see a therapist.

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Thus it was that I was at appointment number seven in the lobby of the one therapist that took my insurance and answered the phone when I called. Much to her dismay as it was her lunch hour, I was an hour and ten minutes early. No, I hadn’t bothered to check what time I was due there. My MS brain knew the time.

While she handed me more paperwork to fill out I asked about her practice.

“No,” she told me, “I don’t exclusively treat children.” It was hard to believe based on the emotion charts, animal posters, blocks, and teddy bears that sat in her waiting room.

I started the paperwork while I listened to her pack up the hundreds of Legos I noticed on the floor of her office when she opened the door to greet me. My mind continued to swirl with all that had piled up that month and of all the things I had to do. But it was my fault I was early (apparently my MS brain knew something that her planner and my calendar did not). And so, with this round of paperwork done, I grabbed the thing closest to me to read.

 

It was a book from a Sesame Street series called Sesame Street Library. In it, loveable Elmo ventures into the library looking for a Little Black Puppy. As he searches he gets distracted from his important task by story hour. I do that all the time. Could Elmo have MS too?

He meets his buddy Betty Lou and, when asked, remembers his mission. Betty Lou offers to help. She gives him all library info he could possibly need and then produces a book called, you guessed it, Little Black Puppy.

Poor Elmo has been misunderstood. I can relate to that too. More evidence our furry red friend might be afflicted with a myelin damaging illness. He explains his plight again. He is looking for an actual puppy that is missing and happens to be black and little.

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Again, the kind Betty Lou wants to help. Back to the card catalog they go and then to the stacks where she produces a book called How to be a Detective.

“There Elmo, you can read this book and then you will know how to find your puppy.”

It doesn’t end there. Betty Lou is a dear friend after all and really, really wants to help so she proceeds to find several other detective books to help Elmo in his search. Elmo excitedly thanks her.

That’s when I lost it. In the lobby of the therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceeded to yell at Betty Lou.

 

Betty Lou that is NOT helpful!!!!! What kind of friend are you? I know you mean well but if you really want to help, start looking for the damn dog! How long do you think it will take Elmo to read all those books before the search begins?

After reading the books he will have get the detective kit and then start questioning people and calling insurance companies and hitting search engines and all kinds of crap that take time he doesn’t have. Can’t you just help look in corners and yell ‘here Fido’ or something? How bout you read the damn books and then get back to him?”

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Poor Betty Lou. Perhaps she didn’t deserve my wrath but she was not alone. Elmo was next on my “need a good talking too” list.

Elmo, don’t be a putz! Tell Betty Lou what she can do with her freaking books and where to go. Don’t stand there with that stupid smile expressing all kinds of false gratitude. Throw the books at her and start looking for the dog.”

I suppose the moral of the story was that you can find anything in a library. But I have yet to find a dog there and in my current state, and not being a kid, the message was lost on me.

Perhaps my outburst caused the therapist concern. She called me in and handed me ten more pages of paperwork to take home and fill out at my leisure. She asked me what I was looking for, therapeutically speaking. Then she told me where I could research the answers to what I was looking for. She recommended some books. I smiled and expressed all kinds of false gratitude, just like Elmo.

I am even more convinced than ever that MS has got him too.

 

Image courtesy of [David Castillo Dominici] / FreeDigitalPhotos.net

Image courtesy of [Ambro] / FreeDigitalPhotos.net

Image courtesy of [posterize] / FreeDigitalPhotos.net

Image courtesy of [Phaitoon] / FreeDigitalPhotos.net