Friday, July 22, 2011

I'm Sorry I'm Not Paralyzed. Wait, what?!

That title was kind of heavy, so let's take a moment to appreciate the puppy image to the left.

It took me some time to reach out to the community at Transversemyelitis.org.  Though I'd come across their forums early into my diagnosis, one quick scan of the boards sent me scuttling away with my tail between my legs.  Wheelchairs, -ostomy bags, loss of income.  I.. I mean, these people had life-altering lesions.  I am numb and tingly.  Numb and tingly, people.  It seemed unfair to enter their midst.  They'd hate me.

Yes, I do have a bad habit of underestimating people, why do you ask?  Honestly, what is even wrong with me that I thought of it as some sort of competition?  Though I don't doubt some might be wondering exactly what I have to complain about, I know in my heart that we can all - each of us - relate to the fear that comes with a TM diagnosis.  It's just plain scary, and sometimes the only way to conquer a fear is to sit around the campfire telling ghost stories, I guess.  It might not make sense, but I suppose it's human nature.

Another facet of human nature I am not proud of is using my fellow sufferers. Well, that's kind of heavy too.  Need a puppy moment?  OK, now that you're back, let me explain.  I cannot help but think "That could've been me," followed quickly by "count your blessings, girl. They're rich and deep."  I can only hope that someday I find a way to repay the generosity the members of the forum have shown, simply by being there.

I've long since moved past the days of expecting the world to be fair, for wishes to be horses, or for prayers to be answered.  But for whatever it's worth, since finding that forum, I've added quite a few new names to those I keep in my thoughts and yes, prayers.

Pseudo Relapse or Gnashing Teeth & Claws?

One of my worst pseudo-relapses occurred in mid-April.  We'd traveled down to College Station, Texas, home of Texas A&M University - and our son's new home away from home - for Parent's Weekend.  Though I'm sure their dorms are filled with ghosts, I wasn't expecting to encounter any.

What we didn't know was that part of the festivities would include sitting outside for roughly five hours during a Corps of Cadets awards presentation.  (Think military academy located inside of a college - so they don't mess around when it comes to awards and ceremonies!) And it was hot.  Well, the first three hours weren't so bad, really, but after a while, I think we were all hot, grumpy, and dehydrated.  I went to smoke a cigarette during a break (I'd been scared off of my e-cigarette by then) and my heart raced as I realized my legs didn't feel.. right.  In fact, they felt definitely, frighteningly wrong.

When you receive a TM diagnosis, you learn very quickly that about 1/3rd recover fully, 1/3rd show some recovery, and 1/3rd never show any recovery.  You also learn that while rare, relapses happen.  And not just the pseudo-relapse I've referenced, but true "new lesion" relapses.  I am in the "some recovery" category, so any re-occurrence of symptoms is startling, to say the least.  Especially since I wasn't warned that they might occur.

If true relapse is the dangerous boogeyman in the closet, pseudo relapses are a particularly irritating poltergeist looking for an opportunity to mess with us, to tap us on the shoulder in a dark hallway. Too hot? Too cold? Too stressed, dehydrated, that time of the month if you're a woman?  Anything, it seems, can set off a startling reminder of the symptoms from which you thought you'd "recovered."

The funny thing is that every time it happens, it really is like the poltergeist tapping your shoulder - you can't help but jump.  And all of the fear comes flooding back.  What if it's a new lesion?  What if my current lesion is getting bigger or re-inflamed for some reason?  What if I didn't close the closet door and the boogeyman can get to me?

As with so many things TM-related, there's no answer.  All you can do is squeeze your eyes tight while you wait for gnashing teeth and claws... or just a nudge to keep on moving.

Wednesday, July 20, 2011

So, this e-cigarette thing & vaping nicotine liquid. Contributor?

I know you must be wondering a few things.  What is an e-cigarette?  What is vaping? Nicotine liquid?  And why in the world did she choose a pina colada as the image for this post?

In order:  An alternative to smoking traditional cigarettes (or "analogs" as they're commonly referred to within the "vaping" community), an electronic cigarette, or e-cig, is actually a bit like a small fog machine.  It heats liquid - either with or without nicotine - to a vapor, which can be inhaled and exhaled like cigarette smoke.  We "vapers" refer to that act as "vaping."

Why the pina colada? Because unlike traditional cigarettes, liquid nicotine comes in many tasty flavors - as many as you could possibly imagine.  If you can think it, someone has probably added FlavourArt liquid flavoring - such as would be used in the commercial beverage industry - to a nicotine and vegetable glycerine base.  My favorite for several months was, you guessed it, pina colada.

The trouble is, I've learned two things since I first picked up an e-cig (and put down the cigarettes the same day), one is that while the flavorings are on the generally recognized as safe (GRAS) list for ingestion, several are definitely not safe for warming to a vapor and inhaling.  In particular, one compound called diacetyl, a diketone, which produces a buttery or creamy flavor and was very popular in several "nicotine juice" flavoring concoctions is also known to cause a disease called Bronchiolitis Obliterans, aka "popcorn lung."  Essentially, the warmed vapor is known to cause irreversible lung damage.  But vendors still used it, and buyers still bought it.  There is/was quite a bit of debate over whether the compound was safe in the minuscule amounts that e-cig users were probably receiving.  

Which would seem to have nothing to do with anything.  Except, after six months of vaping, I came down with my transverse myelitis lesion.  And in my research came across this article on b12 deficiency-related paresthesia and myelopathy (which may mimic or lead to TM-like lesions and was curable with b12 injections):  http://www.mayoclinicproceedings.com/content/77/3/291.full.pdf 

In short, what caught my eye was that hexanedione is listed as a known neurological toxin.  Hexanedione is in the same compound description as diacetyl, they are both diketones - it is also used as a flavoring which can produce a buttery or creamy taste.

So it begged the question - was there a chance that my TM was not actually idiopathic, but had a definable cause, right in my hand?  No flavoring vendor that I am aware of used hexanedione specifically.  But 2,3 pentanedione was used, and as you may have guessed by that "dione" suffix, is another diketone.  It would seem that direct inhalation of diketones wouldn't be the best idea under any circumstances.

Additionally, I came across information that nicotine inhibits b12 absorption, and wondered if in fact there is something about the way that e-cig users absorb nicotine that further interferes with b12 absorption.

And as if this isn't long and "what if?" enough... The e-cig itself uses what is referred to as an atomizer (or alternately, cartomizer) to actually heat the liquid.  And how are the atomizer parts constructed?  With solder, of course.  Everyone recognizes that using lead solder would be a very bad idea, indeed, and instead a common replacement is silver/tin based solder.  And you know what is also a neurotoxin?  Heavy metal poisoning, such as by silver.

Thankfully some "cartomizers" are coming out now that are solder-free, so perhaps that is at least one less thing to worry about.  But that's the problem with an idiopathic diagnosis - we just don't know what caused it, and all I can do is continue to guess.

In short, I feel as if I might be something of the canary in a coal mine, and am simply the first of others who might encounter neurological damage due to their desire to reduce the harm caused by cigarette smoking.

In with the good air...

Frequently, during the "whirlwind times" the only way that I am able to relax enough at night (when my brain always decides to go into overdrive) to sleep is to focus on this simple meditation.

Imagine that it is a comfortably warm day and you are in a meadow or on the bank of a river, wherever it is that you feel most comfortable, most "you." There is a tree there, with a smooth, comfortable place to sit and lean against the bark of the tree.

As you picture the tree, now imagine the trunk at your back - it is solid and its roots go deep into the cool earth, bringing a slight coolness up through the trunk itself.  You can almost feel the strong positive energy flowing into the trunk.

As you relax and feel your breathing settle into a steady rhythm, imagine hearing the leaves gently flutter in the warm breeze. Just as they absorb sunlight to create nutrients for the tree, they are now catching the warmth of the sun and the prayers and good thoughts of those who care for you. Those prayers flow through the leaves and into the tree as a sun-warmed sap.

As the sap reaches the cooler part of the tree, it is as if the sap cools and thickens to the texture of honey, and is now flowing directly through you as well, coating the section of your spinal cord that has been damaged, offering a soothing balm to help you heal.

Pins & Needles, pt. 5

The head of a pin could be all the difference between the life I lead now and a life forever altered.

I am so, so lucky.  My lesion is at the C1 vertebra - technically the C1 has no 'body' but forms the joint between spine and skull.  One half a millimeter difference in the shape of my lesion and instead of dealing with varying levels of numbness/tingling in my arms and occasionally feet and legs, I could be wheelchair-bound, breathing only with the assistance of a ventilator.

Not to say my life hasn't altered, it has.  For one, I worry now about my health.  Suddenly 41 doesn't seem so young.  But temper that with the fact that TM can strike anyone, at any age from infancy on, and it's a small price to pay for what I've learned.

I've learned to cry when I need to, and on any available shoulder.  Just not too often.  The price you pay for being the center of attention during the diagnostic phase is suddenly not being the center of attention once you have your diagnosis.  It's tempting at times to wrest the spotlight back but I've found it's best to let it be.  Your loved ones do not love you any less now that they're reasonably comfortable that you're "ok" (whatever that may be!), they are simply less afraid for you.  Dragging the focus back only serves to scare them again.  I don't hesitate to voice when I am frustrated/angry/scared - but I've learned to try (try again) to keep the drama at a minimum.  As much as my general nature will let me.

My TM is a very quiet little disease/disorder.  If you are as lucky as I have been... nothing looks all that different.  So I try to keep that in mind when I'm having a "bad TM day" - my family or friends can't read my mind (thank goodness!) and sometimes a gentle reminder that something's amiss is enough to convince someone else to grab a knife and chop those potatoes for dinner.

I don't have a magic wand and can't change the past or predict the future, but I can say that I'm learning more about this disease every day, and about myself.

I guess that's about as many angels as you can count dancing on the head of a pin: there's no answer, only questions.

Pins & Needles, pt. 4

Dear Diary,
2011 is for learning!  Today was fascinating.  I laid down, the MRI techs put sponges next to my ears to help block the sound and keep my head from moving, swaddled me with a toasty blanket, kept a hand on my knee as I glided into the snug embrace of the MRI machine...  and then I understood the urge to gnaw off one's own limbs to escape a trap.


Later this week I get to learn whether Ativan will reduce that urge.  If Chuck can get me in the car.
Love,
Me


Dear Diary,
Ativan is the bomb. MRI's are boring. Chili's is good. MRI's are also really very loud.  So is Chili's..hahaha... I should've used the sponges.  I think I need to go to sleep now.  
Love, me. Love. Me. Love me.


Dear Diary,
Next up; an MRI of my brain, and a Spinal Tap. Let's turn it up to 11, folks and rule out MS.  I'm not sure there's enough Ativan for this. 
me
p.s. talk to Dr.Brian about a daily Ativan 'scrip.


In all honesty, the Ativan was a godsend.  Nothing dopey or droopy or drowsy despite my joking above.  Just a complete and utter lack of stress during the MRI.  Let me suggest right now that if you ever need an MRI and aren't sure - request a prescription beforehand.  The difference was nothing short of miraculous.  I was awake and alert the whole time, but bored to tears.  Which was definitely better than fighting them back and feeling like I'd somehow let everyone down by not being able to go through with the MRI unmedicated.  What surprised me the most about the MRI's was that I knew I was fine, I wasn't going to be hurt (aside from the now-accustomed pinprick from being given a contrast solution during the procedure) and could exit at any point.  Rationally it should've been a breeze but my brain could not convince my body.

I'd also recommend that you go ahead and use the sponges to help buffer the noise. Until you're in there you'd never believe how loud the machine can be!  I joked later that I felt like I'd spent two hours directly under a thumping techno club on the most fire-prone street on the block with all the clanging and banging and rhythmic WHMP!WHMP!WHMP! noises.

I have no idea why I didn't request an Ativan for the spinal tap, or as it's clinically known, the lumbar puncture.  That was scary.  Not the mindless panic of an untested phobia, but a simple fear of pain.  The reality was that I never had any pain or discomfort during the procedure.  Finding a way to lay flat on my back during the hour-long drive home (and eat a chicken sandwich in the prone position as well!) wasn't fun, but was certainly worth it in that I avoided the dreaded "spinal headache" that can come from a leakage of spinal fluid.  No one warned me, however, that I'd be stiff and sore for several days after.

The very good news was that my MRI's and examination of the spinal fluid showed no markers for MS.  The bad news?  I had my diagnosis:  Acute Idiopathic Transverse Myelitis, with a roughly marble sized lesion at the C-1 section of my spinal cord.  It's a tiny beastie that fills my thoughts, lying roughly behind my jawline.

It could've been anything that caused the lesion, and Dr. Baker was content to leave it at that.  "I'll see you in a year, and in the meantime, just go about your life as normal and put it out of your mind."

That was five months ago.  It was as if she knew nothing at all.

Pins & Needles, pt. 3

In a short time, Dr. Brian has spoiled me by acting as a partner to my care.  He encourages me to print what I've found on Medline or the Mayo Clinic site so that we're on the same page.  He listens.  But most important of all, I can tell that he trusts my judgment.  I may not have had eight years of medical school, but I'm on something close to even footing with him.  He isn't shy about admitting what he doesn't know, which is disconcerting and comforting at once.  But as he put it, "I shouldn't have come across a case like this in my practice... ever."  


If you wonder at the ease of familiarity I have with Dr. Brian, consider that he is also, more or less, my neighbor.  We live in a very small town in rural western Texas.  Population 1,611 is what the sign says, but with the new census numbers coming out we're sure to strike a few off that number.  Cotton farming doesn't exactly have the draw it once had, and our other major industry, gypsum wallboard manufacturing, has gotten so good at eliminating extraneous personnel that two jobs are eliminated roughly every year.  I know this because Chuck works at the "gyp mill."  For a quick Dirty Jobs rundown: gypsum rock - actual rock, mined from a nearby gypsum seam - is crushed and reconstituted into a slurry.  From there it is poured onto huge rolls of paper and run through the kiln where it re-crystallizes and is cut into sheets of now-wallboard (you may know it as SHEETROCK® - we never call it that, as he doesn't work for the trademark-protector of that name, USG).  It's hard work, with good insurance.  Thank goodness.

After my meeting with Dr. Baker, I am quick to schedule an appointment with Dr. Brian.  For a woman who had last been to a doctor for a muscle spasm some six years prior it's a bit overwhelming how quickly I became accustomed to the offices, the lab techs & their quest to find a good vein, the smells.  (Before you ask, yes, I should've been in for at least a PAP.  I will schedule one soon. That's my personal litany: "I will schedule one soon..." just as with any other prayer I feel the mere mention will stave off trouble.)  With my health suddenly the primary focus of everything and everyone I begin to feel... old.

Awaiting my followup with Dr. Brian I google.  Transverse Myelitis (TM) is a condition in which the immune system attacks the myelin sheath.  Essentially a protective coating, the myelin sheath's job is to buffer the nerves in the spinal cord.  TM causes this sheath to wear thin, exposing the nerves and allowing damage.  I am nothing less than terrified and shocked to learn that TM can cause paralysis and permanent long-term damage.  Once that sheath is gone, it's gone.  And TM is frequently a precursor to an MS diagnosis.  There is nothing here to soothe my fear.  The best news I find is that of those who suffer from TM, about 1/3rd recover fully, 1/3rd recover to some extent, and 1/3rd see no significant recovery.  I also learn that roughly 1,400 cases of TM are diagnosed each year in the United States.  Surely, surely that stacks the odds against my having this disease.

My body has never gone off the beaten path before, always churning and chugging away at doing what it's meant to do so I turn my attention fully to B12, the e-cigarette, and the upcoming MRI.