Friday, August 23, 2013

Scripting a New Rosetta Stone

I know I’m a little behind in the news, but what??  The Common Core State Standards for English no longer requires schools to teach cursive...and at least 41 states are going along with this.  This isn’t where I read about it, but here’s a link to the release at abc News.

Are we witnessing the extinction of a written language before our very eyes?  How many grand-kids will need their parents to read them handwritten letters from their grandparents because they’ve never seen cursive?  Okay, I see the flaw in my logic there already.  Who the hell writes letters anymore?  And yeah...even though I know cursive, I couldn’t read my grandmother’s handwriting half the time anyway... 

Still, it’s a valid point.

Core standards exist for a reason and yet they don’t mean diddly-squat.  Roughly three years separate each of my siblings and me, but we were all taught different English standards.  Is there one period after a sentence or two?  (Two.)  Do you include that last comma before the ‘and’ in a list?  (YES - I hate, hate, hate when that comma is exluded!  It doesn't make any sense.  None at all.)  And there are generations before me who were taught to put commas EVERYWHERE (please don't - much like when drinking, use commas with discretion).  Writing and grammar are so confusing now because changes to the core standards created an inconsistent environment where some people use one set of rules, others use a different set, and others suit the set to their own standard.

I get that things change.  Our world is evolving.  History and science are constantly in flux as we learn new things, and the definition of planets change so those of us who grew up in adoration of Pluto are left feeling deflated now...but this is English.  It is our language.  It is how we communicate.  How can the rules differ so vastly so quickly?

Personally, I think cursive should be taught.  We will have a split society in which some people have this secret, almost clandestine style of writing, while the rest can type a million mph with their thumbs.  Oh, and those of us who can script...we can also type  a million mph with our thumbs made its huge roaring entrance in the 90s.  Ug.  I swear, it makes me want to snag a quill and an ink well, and throw my pc and stupid smart phone out the window.

Tuesday, August 20, 2013

MRI Update

A lot has happened, so this is a quick (yeah right) follow up.  The MRI scan showed no change in the brain lesions from the last MRI (that's good) and the brain lesions don't highlight with contrast (also good).  Cervical spine was clear - I have a slightly bulging disc, but it's not causing any trouble.  My doctor did find a lesion on my thoracic spine that stretches over several vertebrae.  She believes this is causing the issues I'm having with my bowel/bladder function, back and leg pain, and leg weakness.  We did a lab to test for NMO (Neuromyelitis Optica) due to the lesion's location and size.  I received the results of that today - it was not conclusively negative, but they did not find the antibodies they would expect to find (that's good - and my doctor expected it to come back negative).  In addition to the lab, she ran an aggressive 5-day course of IV steroids to calm things down.  My last day was Sunday. 

The steroids were tough.  My BP was down all five days, so it was hard for the nurses to stick me.  But I got through it.  I've gone through this before and usually I'm a ball of non-sleeping hyperactivity.  This time, I couldn't sleep, despite taking heavy sedatives, and I was exhausted the entire time.

Meanwhile, Barnes called on Friday and got me in yesterday.  At this point, with the new scan and the "new" lesion, my home doctors are on the same page, so this was just a consult and reiterated what I already know.  The doctor I saw there agrees with my home doctor's diagnosis and offered some strength and balance training tips.  Barnes was an interesting place, but going there it wasn't as necessary as it once was.  I have MS.  She did say that it's possible the autonomic dysfunction with my heart is related to my MS, but it is not being caused by the thoracic lesion.  She recommended that I stay on my current treatment course (fludro-cortisone and compression stockings).

Last night, I slept 12 hours (yay!) and, even though I woke up sore from the car ride, my back and legs do feel a little better.  I haven't noticed a changed in the bowel/bladder yet.  The nurses said that since the symptoms had been coming on over the last 6 months to a year it could take a few weeks for the steroids to start working.  My BP is still down and I'm dizzy, but I'm feeling more optimistic than I was.

Also, since having the hysterectomy, I've been more prone to heat intolerance and have had some trouble with temperature.  Until now, I've always been cold and heat has only aggravated my MS a handful of times.  Now I'm either hot or cold, and swing from extreme to the other without much of a comfort zone.  So, we did an estrogen test to rule out any side effects on the surgery (I still have my ovaries).  My estrogen levels are fine (that's good).

So I guess overall, after a long period of uncertainty, things are coming together, and I finally have answers.

Saturday, August 10, 2013

Claustrophobic Escapade in an MRI!! Action! Thrills! Chills! Okay, not really...but I did freak out...

It is uncommon for me to post health or revealing updates on Facebook.  If I'm having a rough day or feeling down and really need a friend on Facebook to cheer me up, I may post something like, "Someone sing Soft Kitty to me."  Most people who are close to me know what's going on so I don't need to throw it out there constantly for public display or pity.  There is nothing wrong with giving people updates on Facebook, but I have seen it taken to the extreme in a narcissistic way, so I choose to post "real stuff" selectively.

I speak more freely here, however, not only because I started this blog after my Multiple Sclerosis diagnosis as a central location for friends and family to get updates, but also because the traffic flow seems to center on health-related posts.'s an update...and it's going to sound like a story, because I'm in a writing mood...but it's all true...^_^

First - I am claustrophobic.  It started after I visited San Antonio, Texas, when the daily "actual" temperature was over 105 degrees.  After parking in a River Walk garage, my friends and I hopped into the elevator and headed down, picking up some...interesting...folks along the way.  Among them - a man and his elderly mother, a biker couple who smelled like they hadn't bathed in weeks, and a group of Asian men who claimed, "We can fit; we are skinny!"  (Yes, that is a direct quote.)  That makes eleven-twelve people in a tiny metal box with no air conditioning on a hot, hot day.  And in that tiny metal box with no air conditioning on that hot, hot day, after the Asian men boarded, the doors closed, they hit the ground floor button, and then...nothing.  NOTHING.

"Try the emergency phone!"

The wires were there, but the phone was gone.

"Try the emergency button!"

Pressed.  Many times.  No reply.

It.  Got.  Hot.  And it.  Got.  Hotter.

And I was pressed against the wall behind the rank couple, while the rest of my group were on the opposite wall behind the man and his mother - who was freaking out because we were all going to die (or something).  I, too, was freaking out internally because I didn't want to cook in a tiny metal box trapped in the corner behind the stink of bad B.O., but I was scanning the ceiling for a non-existent access panel while the Asian men tried to pry the door open (it didn't budge).  I did call out to try something and was startled by the fright in my voice.  I was on the edge of a full grown freak out...I couldn't see my husband and I was about to lose it...

Suddenly a female voice snapped at us.  I don't remember what she said, but it lent the image of a surly, gum-snapping, chain-smoking desk clerk who simply couldn't be bothered with the likes of us - perhaps it was Judge Judy or Jerry Springer time...I don't know.  We were an inconvenience.

"We're trapped!"
"The door's won't open!"
"The elevator isn't moving!"
"Let us out!"

We all talked at once, our panic coalescing with relief to form a weird hybrid tone that echoed off the hot tin box's walls.  The woman sarcastically snapped something we were the idiots because her elevator didn't work...and then...the doors opened.  Everyone except the biker couple got off in favor of the stairs.

In truth, I was probably only stuck for 5 minutes, but in that stinky, hot, sweaty box, those 5 minutes could have been an hour or more.  I took the stairs for years and only starting using elevators again when my MS made that too difficult.

Ok, this is turning into one of my usual, long posts, but that was kind of funny in hind sight.  A quick aside - during that same trip to San Antonio, upon arriving in our hotel room and plopping down in a chair opposite the bed, I saw something sticking out above the box springs.  We lifted the mattress and discovered a big, bright, adult pleasure aide...stuffed under there, which would have been IMPOSSIBLE to miss when (read:  IF) the bed had been made with clean sheets.  Eww!

Back on track - I'm claustrophobic.  Any time I get an MRI, I am sedated.  Last fall, I had two scans in a row - one of the brain and one of the cervical spine (I think).  I woke up half way through the second scan and had an internal freak out.  Not only am I shoved into a tiny tube, but my head is fastened to the table in a basket.  Tiny tube...I can manage...I can see the exit.  Being strapped to a table?  NO!!  I freaked out during the tilt-table exam when they were testing to see why my blood pressure drops so suddenly and I wasn't even enclosed in anything!  Simply being strapped to the table did it.  (In my case, that test was a worthless waste of money.  I have Autonomic Dysfunction of the Central Nervous System, which is another wiring issue, but a different wiring issue than MS.  My brain isn't communicating properly with my heart and other body parts that should function on their own.  The other heart tests did show that my heart pumps at a low-normal rate, but is otherwise healthy.)

The MRI nurses were supposed to give me the max dose of sedation possible so I would go all three scans (brain and full spine), but it wasn't enough.  One of my MS symptoms is the inability to stand for more than a few minutes at time, or sit or lay in the same positions for long periods of time.  I get very sore and very stiff, and my limbs fall asleep very easily.  During Thursday's scan, I woke up with 45 minutes to go.  I'd been on the table for over an hour and fifteen minutes.  The basket on my head was tighter than it's ever been and I was in pain - a lot of it.  It felt like a sideways nail was digging into my head and jagged rocks were smashing into my lower back.  My left arm was half-numb - I couldn't feel or move two fingers, and my legs both hurt (an achy, coursing pain) and were going numb.

I alerted the radiologist and the tech of my situation.  They were very kind and said they could pull me out and send what they had, but if I could hang on a little while longer, they could get it all done.  They hadn't even gotten to the contrast yet, so I pulled back mentally and tried to focus.  Even with all the cognitive issues I have, I am good at compartmentalizing and going to what people refer to as their "happy place" when I need to.  In a normal, claustrophobic-type situation, I visualize an expansive field of bright green and soft lavender swaying in a light breeze.  The sun is shining so brightly it fills a cloudless sky and shoves the bright blue color into the peripheral.  The light is warm on my skin and makes the flowers' clean, spicy scent explode around me as the breeze caresses my face.  I can stay there as long as I like, brushing the flowers with my fingers and bathing in the sun.

But excruciating pain made going there impossible.  My purple field turned into a dingy gray, windowless dungeon with rusty chains and cuffs hanging from the walls.  There wasn't even an iron was just a stone box...and the words "torture" and "trapped" kept popping into my head.  I was stuck.  I couldn't move or I'd mess up the scans and the pain would be for nothing.  I shoved the dungeon away with numbers.  I counted.  For a solid fifteen minutes, I focused only on counting and slowly moving my left arm to wake it up.

The radiologist announced that I had twenty minutes left and asked if I was okay.  I whispered, "yes," and started to cry.  I almost lost it.  I began to hyperventilate and my body started heaving, but I again thought that if I moved, I'd screw up the scans.  I sucked in a deep breath and tried counting again.  It worked for five minutes, but then I noticed the magnet heating up my body, which drew my attention back to the pain, which was worse than it had been upon first waking.  The rocks digging into my back were sharper and the nail was trying to carve a path into my skull.  As tears streamed from the corners of my eyes, I gritted my teeth and started singing "Soft Kitty" to myself in my head.  BUT I FORGOT ONE OF THE VERSES!!

How does that happen?  "Soft Kitty" is such a simple song.  I watch The Big Bang Theory all the time.  I have it on a t-shirt.  I even have a cat that sings it for crying out loud! 

I had to make a verse up, but that in and of its self was an excellent distraction, for a short while.  The pain got worse and my body was threatening to quake into a meltdown.  Finally, I prayed.  I started to panic during my prayer, but - compartmentalizing the freak out part - I reminded myself to get the prayer out there and then freak out.  So I prayed.  And then I focused on God.   I kept thinking, "Help me through this, help me through this, help me through this...make it worth it, please make it worth it..."

Then they pulled me out to inject the contrast.  A whoosh of cold air ran over me, which I inhaled deeply.  The contrast was cold as it ran through my veins and the cold air going up my nose was comforting, even as I went back into the tube.  I don't remember what I focused on next, because before I knew it, the radiologist announced that I had 9 minutes left, and then 3 minutes left, and then they were pulling me out, releasing the basket from my head and moving the pillows from beneath my legs.  My tears gushed forth and I wiped my eyes with the back of my hand.  They stood on either side of me, concerned and asking if I was ok.  I croaked over the lump in my throat and nodded.  With their help, I sat up, I rubbed the back of my head, and stretched my back and legs.  My right leg was half gone, so they both had to walk me to the chair.  I held it mostly together until I got into the car with my husband, which is when all the energy I had contained in the tube rushed out and I bawled and bawled.  I cried out about the pain and freaking out and that I'd forgotten the words to Soft Kitty.  My husband held my hand and I heard him say, "Soft Kitty..."

I looked over at him.  He hadn't sung it - my husband doesn't sing - but the look on his face reminded me of how Sheldon's eyebrows dart up and he gets that almost stern, prompting stare in his eye.  So I whispered, "Warm Kitty..."  And we said the rest together until we reached the verse I'd forgotten..."Happy Kitty..."  (I had inserted "Precious Kitty") and the we finished it.  My crying reduced to the sniffles and I held onto his arm the entire way home.

Thanks to the nurse who was caring for me, I now know that IV sedation with pain medication is an option for people like me.  I wish I had known of it prior to this, but I never could have imagined how bad this was going to be.  I've been taking pain meds and muscle relaxers since I got home.  I woke up yesterday so stiff that I stood up to stretch and fell back on top of the bed like a board.  I slowly and painfully curled into the fetal position and tried to figure out what to do about work.  Then I got another charlie horse in my calf (I've had three in the same spot all together, so each one hurts much worse than the last), so I took more pills, and obtained permission to work from home.  I woke up at 4:45am this morning  in pain and took another pain pill.  My left wrist, back, neck, legs, and even the back of my head still hurt, and the stiffness is getting worse.  I will stay on the pain meds only for as long as I need them, and will try to stretch and move around a bit today to alleviate the stiffness.

I don't know what or why, but the radiologist "scanned an extra body part."  I see my doctor on Tuesday to get the results.  We are looking for changes in lesions or lesions along my spine.  I don't know about the extra body part, but it happened "because of something."

I've thought about trying the open MRI, but the basket on my head is what really gets me, and I'd still have to lay still for the same length of time.  The next time I need multiple scans, I will either break them up or request the IV sedation.  I know this pain is going to last me into next week.  And that really sucks, because I was starting to feel better.  It's always shocking to me at how quickly I can go from feeling "ok" to chronic/constant pain.  I was referred to Barnes Jewish Hospital back in June, but have had a hard time reaching any body there.  I've finally found someone in the Administrative Department who is trying to help me.  If not for the fact that I know people who have been helped by Barnes, I would say this whole referral debacle has been a horrible joke.  Unfortunately, Mayo is not an option with my health insurance, but I plan to see if any place else is covered.

So that's been my last few days.  I was diagnosed with MS at age 31.  I went into the ER on a summer night - Friday the 13th - with stroke-like symptoms and a mass was found on a CT scan.  An MRI and spinal tap, along with symptom progression confirmed it.  My official diagnosis took less than three months and I started treatment.  I was lucky.  Most people suffer with MS for years or decades before getting diagnosed or treated.  Many people with MS have worse symptoms than I do.  The average life expectancy is age 65, but most forms of MS are not fatal.  Much like with other immune-related diseases, MS doesn't kill, but it weakens the body or immune system so that something like the common cold becomes a killer.  We need better treatments.  We need a cure.

As always, please forgive any typos.  I am tired now and am going to take a nap. Thanks for reading.