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.
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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/