Category Archives: Multiple Sclerosis

Gotta Love How The Universe Works

I got up today, lit candles, pulled out my meditation cushion and immediately got annoyed.  I find that quieting my mind is easier if I’m been moving first or at least had some caffeine.  So I decided to jump on my treadmill and get cracking…

Naw.

I got on the Internet.  After reading a little about how the Democrats and Republicans can’t agree on the right way to reduce our deficit (shocker), discovering that Melissa, a Real Housewife from New Jersey, allegedly had a lesbian affair when she was a teenager (so what?) and that Charlie Sheen is admitting to steroid use not while he was a professional baseball player, but when he played one in a movie (you call this winning, Chuck?), I remembered that I wanted to look up something about MS.

It turns out that Shemar Moore, the sexy star of one of my favorite shows, Criminal Minds, bikes not only for MS in general but specifically for his mother who unfortunately suffers from the disease.  I did a quick Google search and found an article about how many of the cast members  (Mandy Patinkin, Thomas Gibson, and Paget Brewster) and crew have created a Criminal Minds team that participates in 100 mile Bike MS events to raise money each year.

Turns out Shemar’s mama and I have a lot in common.  Like not really dealing with the fact that we had this disease at first:

My mother’s been diagnosed for about 12 years now, and it’s been tough. It was tough on her physically and it was tough on both of us emotionally.  I think both of us were in denial in the beginning, so it took some time to kind of get out of the gate and really embrace that she had it. Then we could focus on what it was and how to combat it.

I’m guilty of this as well and will be happy to discuss this in a future blog post – just as soon as I figure out which of my neurotic buttons were so heavily pushed during the time of my diagnosis.  Hmm…Maybe someone from the BAU could analyze me?

Further along in the article it talks about how often times, folks with MS don’t go to their doctors because they just assume every ache and pain is MS related (I’m definitely guilty of that as well).  Moore mentioned that there was a time when they thought his mom, Marilyn, was on the verge of losing her mobility.  Turns out it wasn’t MS that was about to rob her of her gait, but hip degeneration that although may have been caused from the steroids she’d been taking to fight her MS, was easily remedied.  A hip replacement gave her her mobility back which freed her up to discover her love of yoga.

She loves yoga and swimming and visiting with friends…My mother used to go to a retreat called Kripalu, up in Lennox, Massachusetts. I think John Travolta and Woody Harrelson have been known to go there, where you spend a week, a month doing yoga.  My mother actually got her yoga teaching instructor’s license, so she’s fully committed and she loves it.  But physically, there are certain things she can and can’t do. Yoga really is a life-saver for her, though. It’s her meditation.  It’s her therapy. She’s got her mat at the house, and she sits with herself for an hour or two. Between that and swimming and being with her friends, that’s pretty much her routine.  She’s good.

Okay universe.  I got it.  Hitting the mat right now.

I’m not going swimming though.  One fear at a time, please.

Journey Back To Yoga

In the middle of my yoga teacher training course, when I got my multiple sclerosis diagnosis, it went something like this:

  • No reaction – leave exam room – make follow up appointment.
  • Fumble with keys get into car, begin to cry.
  • See that someone in the parking lot is staring at me, wipe away my tears and call my husband.

Driving while talking on a cell phone is a bad idea.  Driving while talking on a cell phone to tell your husband that you’re fucked is worse so it did force me to keep it together until I could get home.

  • Get home, stand in the middle of the kitchen and think: I need to seriously consider going back to work.

Crazy, right?  I should have went straight to my yoga mat.  I should have been praying, or meditating or freaking myself out by reading up on the most terrifying symptoms on Web MD.  But at the time of my diagnosis, health care reform was one of the biggest political topics folks were fighting about.  To come to the realization that I officially had a medical bankruptcy bullseye on my back, meant that I needed to guarantee I would ALWAYS have health insurance in the event that something happened to my husband.  I have kids and now that I had a progressive condition, I needed to be proactive about protecting everyone’s financial future.  In that moment I made a silent promise to myself that no matter what, my disease would not take down my family financially.

Then I started chain smoking and called my best girl friends to give them the news.  Eventually I came up with a plan:

  • Tell the kids but stress that it’s no big deal.  I have a disease, I’ll take medicine.  Everything will be fine.
  • So as to not freak them out, tell jokes and don’t cry – act like nothing is wrong.
  • Actually believe that nothing is wrong and simply get on with my life, focusing on getting back to work,

This major shift in my thinking threw everything into flux.  My yoga teacher training took a back seat and instead of focusing on unifying my mind, body and spirit, I focused on all things monetary.  Specifically I spent all of my free time earning the continuing education credits I needed to be re-certified in my field of speech-language pathology and licensed by my state.

I still went to my yoga teacher weekends and classes, but honestly, the wind had left my sails.  I remember my first yoga class after my diagnosis. Luckily it was a hot one so no one realized that I crying through out most of it.  In fact, every time I got on my mat the MS I was trying to ignore was brought to the front and center of my consciousness.

As I teacher I tell my students to “notice the thoughts that you have without judging them”.  Simply acknowledge the thought, then gently push it aside and bring your consciousness back to the breath.  Unfortunately, when I got quiet it allowed all the thoughts that I was ignoring to bubble up to the surface. I found it was easier to avoid my mat as much as possible.

Eventually I graduated and the only smart thing I did as a newly certified, yoga teacher was to say “yes” every time I was asked to teach a class.  I officially started teaching on January 1st, 2010 and eventually got my own Thursday lunch class to helm.  Truthfully though, yoga had settled back in my head and wasn’t something I was truly experiencing.  It was something that I was planning, sequencing, memorizing and articulating.

Besides, I didn’t have time to give myself the gift of yoga.  I had to find a job.  One that paid well and had benefits.  So like a good teacher, I came to class prepared but as soon as the class ended, I spent all of my free time re-introducing myself to the world of speech therapy:  Diagnosis, Treatment, Documentation, Billing, as well as creating test and therapy materials.  Although I still took yoga classes and was always preparing for the ones that I taught, yoga yet again took the back seat to my life.  If I’m going to be honest, it didn’t even have the back seat.  I think it had the wheel-well in the back of a beat up pick up truck  if we’re going to stick to the vehicle analogy.  I was not only driving fast, but taking curvy back roads with lots of pot holes.  I’m surprise yoga didn’t fly out completely and suffer a traumatic head injury.  Maybe then I would’ve noticed it  – when it came in to see me for speech therapy.

Its been well over a year since I went back to my field.  I needed this time to slowly ease back after a 12-year hiatus.  But I’m grounded now and it’s time to switch my focus back to my yoga practice.  Not just from a teaching perspective, but from a student’s perspective, albeit a sick student’s perspective.

Its officially time to journey back to yoga.  If you don’t mind I’d like to share with you what I find along the way.

Yogis Interruptis

For thirteen years I’ve been a fan of yoga.  Not an addict.  Not a stalker.  A fan.  I’ve enjoy the practice and fit it into my life as was appropriate, meaning, sometimes it’s taken a back seat to other areas that needed my attention.  In theory, I wanted to be more committed to my practice, but activities like motherhood, moving, and volunteerism got in the way.  Looking back, I believe that was part of the problem.  My theoretical yoga practice had a bigger hold on me than my actual one.

Yoga is derived from the Sanskrit root word yuj which means “to yoke”, or “unite” and many claim it’s specifically about the union between mind, body and spirit.  Because the word may also derive from the root “yujir samadhau,” which means “contemplation”, you can see how for some, yoga is more about the mind and/or spirit and less about the body.  Which is fine if you need a distraction from always focusing on the physical and hating yourself, like I’ve done most of my life.  But if your default setting is always set to “cerebral” as mine tends to be (because it’s a lot easier to ignore the body that you hate if you spend the majority of your time in your head) it was easier to focus on living my yoga than performing poses on a mat.

I had hoped that yoga would eventually bring balance to the body part of the equation.  I think sensing this innate need is what inspired me to sign up for yoga teacher training (YTT), but in the end it was my mind that made the decision because teacher training was also a way to make a living.  Since I was already volunteering at the studio and really liked the yogis I met there, it seemed like a smart idea to make money doing something I enjoyed.  Regardless I was going to FINALLY give my yoga practice the attention it deserved (while secretly hoping that yoga would give me the physical body I’ve always wanted).

That was the plan, until my head took center stage because besides going to numerous yoga classes, YTT meant reading books about yoga, taking notes from lectures about yoga, conversing about yoga and and thinking various thoughts about yoga.  This of course was my favorite part of the training because it kept yoga between my ears where it truly liked to be.

After paying my first deposit and receiving my book list, I got cracking.  Instead of going to class I read Power Yoga and Moving Into Stillness.  Rather than doing asanas, I memorized their sanskrit names.   The Yoga Sutras of Patanjali?  Something I discussed with my classmates in lieu of actually experiencing them.

Training to be a yoga teacher quenched my thirst for yogic knowledge.  It meant understanding anatomy, physiology and contra-indications for poses.  I learned facts about properly sequencing a class and was taught the best way to verbalize alignment cues.  Because I intellectualized yoga so much, I spent most of my physical practices analyzing the teaching styles of the instructor and stealing ideas to use for future classes.  Thus yoga, even when training to be a teacher, continued to be a cerebral endeavor.

But then an interesting thing happened.  By the third weekend of training I was hitting the studio every couple of days attending vinyasa flow and even some hot yoga classes.  Besides simply doing more yoga, I was also walking daily and eating healthy.  Finally and perhaps for the first time in my life I was allowing my consciousness the luxury of settling within my body and staying present in it for more than a few seconds, here and there.  Yoga was slowly (and without a lot of fanfare I might add), doing it’s job.

Then, halfway through teacher training as I was FINALLY on my way to unifying my mind, body and spirit, a freak accident occurred.  I hit my head.  Hard.  The dizziness that made practicing more difficult was no where near as problematic as the results from my MRI.  It seems that yet again, my head was getting in the way of my performing the asanas.  Not my mind per say, but my brain itself.  The physical body that I’d become expert at ignoring must have finally had it, so to get my attention, it moved north to officially compete with my mind.

Turns out,  I wasn’t just a yogi with a concussion or an inability to yoke her mind to her body.

I was a yogi with 9 brain lesions.

I was a yogi with Multiple Sclerosis.

Yes, that’s correct.  A yogi lousy at living in her body got the disease that affects the body with an alarming level of inconsistency.  The disease that constantly brings your attention back to your body due to the ever changing plethora of physical symptoms it creates.

Did you hear that?

That was the sound of my personal yoga practice crashing into a brick wall.

I know what you’re thinking.  A progressive neurological diagnosis?  Or course she turned to her yoga practice to create health and wellness.

Naw.  I didn’t have time for that.  I had to go get a job.

Thanks Doc

There’s an interesting blog post written by Dr. Rob over at Musings of a Distractible Mind that’s an open letter to patients that suffer from chronic conditions.  Apparently it pissed off some readers, so he wrote 2 follow up posts (click here and here) to clarify his statements.  I enjoyed the original post and thought it was great advice for ANY patient, with or without a chronic condition.

A Funny Thing Happened On My Way To My MRI…

My brain lesions disappeared!  No shit!  Last year I had 9 lesions but this year – nada.  My neurologist told me that it’s rare, but he’s seen it happen with people that get diagnosed with MS early and get started on drugs quickly.

“So I don’t have MS any more?”  I asked.

“You still have MS you just don’t have any lesions,” he replied.

Which is kind of ironic as you can’t get diagnosed with MS without having at least two lesions, yet you can continue to be treated for MS without them.  Who knew?

“So the medication I take.  It repaired the myelin?” I asked.

“Maybe.  Or maybe it fixed the inflammation in your brain so that the lesion never developed in the first place.” he replied.

“But we saw the lesions on my MRI from last year,” I countered.

“We saw what we THOUGHT were lesions.  Maybe they were just inflammations that were getting ready to turn into lesions and they were caught in time,” he replied.

“A lesion starts out as inflammation first?”

“Yes.  And perhaps the Copaxone resolved the inflammation.”

“Or did the Copaxone strengthen my blood brain barrier so that whatever was attacking my nerves stopped in time for my brain to repair itself?” I suggested.

“Maybe,” he answered.  “Or maybe all of your yoga and meditation helped.  Or maybe it’s the way you eat.  Who knows,” he added with a shrug.

“So in other words, keep doing what I’m doing,” I offered.

“Pretty Much.”

I was pleasantly surprised that a big time Georgetown Neurologist would tell me to do more yoga.  Yet my inner scientist wants to know more about these lesions as in, why have they left?  Where did they go?  Will they come back? If I can figure out what made them take a hike, I can focus on that moving forward.

Although I do yoga, meditate and try to eat healthy, I’m in no way obsessive about any of those things.  I do yoga and meditate a few times a week.  As for diet changes, I tried the MS diet once and decided after one meal that I’d risk the wheelchair before I spent the rest of my life counting every gram of fat I ate because as much as that might work for some, it would cause me to go crazy and wasn’t worth it.  I’ve got too good a relationship with food to go back now.

Truth be told the one thing I definitely do every day since being diagnosed is shoot one milliliter of Copaxone into my body.

The only other thing I can think of is that after my diagnosis I decided that I wasn’t going to stress about having multiple sclerosis.  Honestly, I don’t think about it until I have a symptom and even then, I’m not sure if I’m thinking about the MS specifically or the symptom in general.  For example my balance can be off so if I need to climb a ladder I focus more on how to be safe and not on the cause of my imbalance.  In other words, I don’t make up stories in my head.  I don’t assume everything’s about MS and because of that my thoughts have become very functional and rational and not dramatic, MS, fueled embellishments.

Maybe that’s because a few days after being diagnosed I tripped in my foyer, began to tear up only to look around and realize that the foyer rug was wrinkled and the cause of my misstep, not my new MS diagnosis.  Then later that night I tripped again only to realize that the rug was fine, but my shoe was untied.  The fact is people trip, whether they have MS or not and I learned very early on, that I couldn’t blame MS for everything.  Sometimes I’m just an asshole that needs to tie her damn shoes or  better yet, watch were she’s walking.

So do I think my mind wiped out my lesions?  No.  I think western medicine did.  I think my mind helps the medicine work well by staying calm and keeping my nervous system calm which is exactly what you want if you have a nervous system disorder.  This inner calmness is a direct result of my attitude and yoga/ meditative practices which frankly is a relief.  It means that at the end of the day, I don’t have to be the most advanced student, the best teacher or the most disciplined yoga practitioner.  All I have to do is LIVE my yoga and anyone, no matter their physical condition, can do that.