Flow...

I bought this set of cards years ago. 

I was having trouble getting pregnant.  The medical world was disillusioning and I wanted to focus on calmness, tranquility, and breathing.

They've been in my bed-side table, unused, since.

I am going to start using them again.  Even just to get my positive thoughts going.  Each day I will pick one, think about it, stare at it, crinkle it up and shove it in my pocket.  It doesn't matter what. 

Today, I got...

How very appropriate.  I'd say that's a good card to start with...

Reflection

Now that the steroids have subsided and I don't feel like a suburban superhero, it's time for some reflection.

The weekend was spent feeling very dozy and confused.  A combination of no prednisone, upped ativan, plus the rest of the relapse flickering away.  I feel like my brain is centrifuging.  It's not sharp and attentive.  I am forgetful, confused, and nauseous.

It's not a pleasant spaced-out feeling.

This past week has, again, reiterated the permanence and fleeting uncertainly of this disease.  My vulnerability is unfathomable right now.  My perfectionist and systematic personality does not like this.  I thought I could lose control (or at least be okay with it) but now I am not so sure.  My feelings of strength and resilience are still present, but the self-doubt creeps in faster than you could imagine.

----

It seems as though I've passed the "test" this week.

But what happens now?...

Life continues on, everyone breathes a sigh of relief that I am okay.  Yet still, here I am.  Doing this dance.

My current journal (and some inspiration!)

"Detox" therapy

What does a girl do after finally being unravelled from 3 days worth of IV wires?

Why, go to the drug store and go crazy buying stuff. 

Anything that comes in pink or red.

And then, as the headaches for "MORE STEROIDS, MORE!" start to entice, she does this...

Oy!

Steroids: Done!

As I was getting ready to leave this morning, Jack told me I looked beautiful.  After all his antics and emotions about my obvious unavailability this week, that meant the world.

(Or maybe it was because I finally did my hair?)

Within the midst of 5-year-old thoughts he definitely has a lot of confusion and anger about my disease.  Mainly because it disrupts his life and he doesn't understand why.

But my sweet boy is so adaptive, so loving, and knows just when to give a cuddle and kiss.

----

Last night I had a beautifully drugged sleep.  More than 8 hours.  Bliss.  Thank you Ativan. 

And today I am again alone in the infusion room.  I am happy to sit with my journal and gum, and just take it all in.

From across the room, Hilda, my lovely nurse, noticed my new tattoo and inquired.  I explained the meaning behind it - the strength and beauty of the feather, despite obvious imperfections.  I wiped away a few tears as I told the story, and at that moment, felt so, so proud of myself.  I am strong and I can do this.

----

I am feeling happy about taking prednisone (unless there is some serious withdrawal over the next few days, in which case, I take that back).  My hearing has improved incredibly, my hand feels stronger, and the tingling has almost subsided.  And just as I was wisely told - this may in fact boost my spirits.  And you know what?  For the meantime, I think it has.

I know it will probably happen again, and I know it could be worse next time, but - at this moment it's time just to think about now.

And for my funny of the day:  A picture that a patient made for the infusion room.

Steroids- Day 2

A Tylenol and a McMuffin will cure just about anything.

That magic elixir of medicine plus grease, salt and guilty indulgence does it every time.

At 9:30am I am feeling better and I am strapped in and ready to go.  Pack of gum and journal at the ready.  The room is empty today, which I don't like.  I liked the chatter of yesterday.  Today it's a bit disconcerting.  Alone.  The whole process becomes a touch more depressing.

The nurses here have been wonderful.  Fantastic ladies.  They have gone well beyond their roles- and have become carers, supporters, and friends.  Thank you, Hilda and Laura, for making me laugh and offering up the best pillows and hot blankets :)

My lovely friend Emily brought me munchies to snack on (I guess my face is indeed going to get puffy).  Now that I am home, the bag of Munchie Mix has been opened (it would look odd eating right from a giant bag of Munchies while having steroids pumped into my vein, right?).

I am feeling better today.  The mania seems to be at an enjoyable level, rather than the "I am going to have a heart attack" feeling.  I just feel like going out and doing something... stuff... anything...  I just want to go!  As long as I can sleep tonight (har har), this is all fine with me.

Until tomorrow, tubes and IV bags...

5am

Even my 2-different-Ativan prescriptions could not induce sleep.  I tossed and turned, exhausted and ready for sleep.  Yet my body protested.  Finally, defeated, I rose to tackle my hangover-esque headache.  I think perhaps I need some stronger sleeping meds.

Or maybe it was the fact I had 1000mg of steroids coursing through my body, along with my nightly injection of Rebif, plus the Ativan.

Medication-cocktail failure.

I think this is the closest I will ever get to that "junkie feel,"  I am wide-eyed, headachy, exhausted, yet still looking for something to do.

The biggest shocker?  I am going to forego drying and straighening my hair for a drive through McD's - the ultimate drug-tail cure, I think.  Or maybe it's just the roid munchies.

More updates later today.

Steroids - Day 1

You make friends fast in the infusion room.

We all sat in hospital-grade recliners, covered in warm blankets.  IVs in one arm, blood pressure cuffs on the other.  We shared the intimate details of our illnesses - our symptoms, our meds, and we talked about our lives - pre and post diagnosis.  It was an amazingly cathartic 2 hours.

Now I wait for the prednisone to work. 

My mouth tastes like I've been sucking on a mouthful of pennies and my heart is racing.

I am mostly anticipating the moment I turn into a doped-up East German athlete ready to fight to the death.  (that's my favourite steroid joke).

My kids better not knock the IV lock out of my arm.

Yes, there were tears, yes I am scared... but I am telling myself - just keep fighting, just keep fighting...

1000 mg down, 2000 mg to go.  See you tomorrow, beautiful infusion-room view.

Repeat relapse

I spent today at the MS clinic for an emergency relapse appointment.  The tingling and numbness has been festering for weeks now, and it's only getting worse.  Spreading upwards along my limbs.  Left lower leg and left hand.  A few days ago I noticed my balance and coordination were off.  I tried to walk down the bleachers during Jack's swimming lessons, and it just woudn't happen on it's own.  My foggy brain just could not send the signal for my foot to move.  I was so worried I was going to fall, I did all the stairs with my right foot leading the way, half-scooching on my bottom.  Just like a toddler. 

All of these things I have anticipated - they are common MS symptoms.  I've had them before.  No biggie, right?

Then, I started losing my hearing.  

And it's not getting any better.

My neurologist did a full exam - and could see the physical limitations of my left limbs, plus confirmed the hearing loss is a defnite (although so, so rare) complication of my MS.  Leave the rarities to me.  The scarring from my vision loss last summer is still visible, and my right eye still cannot process the colour red properly.

The tingling and numbness are, mostly likely, due to the transverse lesion on my spinal cord, whereas the hearing is probably due to a new lesion on my brainstem.

We also discussed the possibility of  "Rebif failure."  Which means my medication may in fact not be working.  At this point in injection therapy treatment, people are typically not seeing new relapses and new lesions.  And because I am still having bad side-effects, months in, we may switch to another medication.  It too would be an injectable, however, would be daily.  Once I try that, if it does not work, I can switch to a monthly-IV treatment that may work better for my body.

So, tomorrow morning I start a 3-day course of IV steroids at the hospital.  It should alleviate the relapse symptoms quicker than if untreated, but of course has it's own side effects - namely intense mania and hyper-activity - fun times for all!  I of course, filled my prescription for sleeping pills the second I could.  Cause, you know, sleep doesn't come easily already - in my usual non-manic state. 

It'll be en early start tomorrow.  But I have never been so excited to have steroids pumped into my body!

Friday thoughts

I like to think that I am ticking along, just fine.  I like to think that people walking by me on the street have no idea what is invading my body.

Sometimes that's a nice feeling - interacting with people who don't know I have MS.  Or know about the injections, the appointments, the fear.

Sometimes it's nice to be mundane.  Regular, ordinary, un-diseased.  To get excited (again) about the small things. 

Like spending Valentine's day alone in bed at 6pm, with a glass of wine.  The silence was divine.  And the children were still supervised, don't worry.  Thank you, dear Valentine.

Like finally paying off my various student loans.  It took me ten years.  Yes, ten.  I graduated from UBC in Vancouver in 2001 then moved to England where I completed my Masters in Forensic Anthropology (Ever see "Bones?"  That's what that is, minus the suspense, guns, and sex.  Well, those plus any relevant or exciting job opportunities).  And let me put this out there - for the kids - studying overseas is not cheap.  You will probably need a couple different loans.  Or three.  But I met my husband, had my kids, so it was worth every penny, right?  (Insert witty sarcasm)

Like seeing Jack finally jump into really deep water, alone.  I watched the fear on his face from across the pool, saw his apprehension.  Then he did it.  And emerged with a giant thumbs-up.

Like having crazy bum-shaking dance parties with Oliver in the middle of the day.
.
Like feeling the warm sun on my face today.

So, despite the moments I wish I could crawl into bed - and stay there for days - life still makes me smile big. 

The movement!

Thanks to my wonderfully talented cousin, we have a walk poster, and I now have a graphic for this blog.  Love the addition of the hammer!

Facts

Here is an interesting talk by my neurologist about MS drug therapies and advances.  It gives me a lot of hope for the future.

http://phsa.mediasite.com/mediasite/Play/332d2fb8ba0f4c92b2e380f0389d0b3c1d

My monitoring MRI - to decide whether to continue with my current medication or to change - and to see how my lesions are looking - will be in May.

See...!

It does exist; and it lives at Chapters.  If you, like me, laughed until you cried, then this baby will cure any insatiable thirst for knowledge you may have!

Inspiration

If MS had an embassador - a real-life spokesperson - this guy would be it.

His name is Jason DaSilva.

He has primary progressive MS (which is different than my variety - I have the more common relapsing remitting MS).  His condition is much worse than mine. 

He spent part of his life in Vancouver and now is a film maker in New York.  His newest work was just featured at the Sundance Film Festival. 

It documents his life, his journey, his MS.  And this man has become my new hero.

Here is the short trailer and website:

http://www.wheniwalk.com/