"King and lionheart"

Music, for me, is an outlet to my emotions.

I like music that makes me think.  Lyrics that evoke memories, experiences.  Both good and bad.

I've posted about this before here.

Today, "we won't run..."

This is how we do it...

Relapse, that is.

It does get easier.  If I am learning anything, that's it.

I am going on 11 days now, and can't say I am physically feeling better.

Definitely not normal.

I don't think the prednisone worked it's illustrious powers, and I don't think the relapse is done.  But, my soupy withdrawal-brain is slowly recovering.  I can finish a sentence again.  And stand fairly steadily.

Mentally however, I have done a full arc of emotion.  It's a daily adventure of what to expect.

Yesterday I was angry.  Irritated and annoyed.  Today I feel okay.  Not terrified, confused, or sad.

I spent the day with my baby and I revelled in the things he is doing.  I marvel at his new learning, his words (He has a slight speech delay, so this is huge), and his hard-earned thought processes.

This boy is working hard, and that makes me so proud.  That look of achievement on his face is a most rewarding moment of Motherhood.

----

I'd also like to discuss a common misconception about MS.

And that's the correlation of age-at-diagnosis and severity of the disease.

Lately I've been hearing a lot of "Oh, you were diagnosed young, so that's better."

Not true.

Most people with MS are diagnosed between the ages of 20-50.

And yes, individuals who are diagnosed over the age of 50 are statistically more likely to progress to progressive MS faster.

However, an earlier diagnosis mostly means that the disease has more time to actively destroy CNS tissue, thus likely increasing disability. 

But mostly, this disease takes such an individualized pattern that it is impossible to predict the severity of its course or nature of its symptoms.  And it's unfair to make comments that make any form, version, or variant "better" or "worse."

Crash

Prednisone withdrawal.

Crash and burn.

Such an odd sensation.  As if I can actually feel my brain inside my skull.  Feel that something is amiss.

I can't stand straight, I am having hot sweats, feel like I am going to pass out.  I can't focus on voices or words.  Everything makes me angry and snappy.

Who'd have thought 3000 mg of prednisone would have such power?

All this MS malarkey, and even the treatment is a Catch-22.

Thankfully, though, the desire to eat my weight in fried foods has passed.

Just sippin' on some lemonade

A huge thank you to BCIT's Sarah Sangha for such a beautiful job. 

You have helped me convey an important aspect of my life, and I am hoping this interview brings some awareness to Multiple Sclerosis.

The interview hasn't aired yet, but here is a YouTube clip ready to view:

http://www.youtube.com/watch?v=g0oiFVABSgY

 

 

Mother's day

For all Moms, near and far.  This day is for you.

Take a breather.  Enjoy a treat.  Grab extra snuggles.  Kiss harder than you normally would.

And with awe - the utmost of it - stare at your beautiful children, and just seep them in.

This is who makes me a Mother:

 

I love their laughter.  Their innocence.  Their complete wonder with this world.  I love their energy.  Their eagerness.  And their quest for discovery.


And this is my own Mother:

My Mom, Aunt, and Cousin

She has taught me how to be a mother; how to be part of a family.  How to trust that instinct that just doesn't translate into words.  She has taught me to be confident in my decisions and to love fully.

----

Today I finished my infusion at the hospital.  I wore my beautiful Mother's day present from Jack (with explanation for those who gave me that look and thought I was legitimately nuts).

A little weary, a little tired.  But done for now.

And... repeat!

Hospital sheets always smell like death.

In and out today.

I am here so early there are no other patients.  Which I don't like.  I am usually one of those "hospital talkers" people hide from, and I love eavesdropping.  Out of luck today.

There was no steroid-mania last night.  Just a little fogginess and restlessness.  But I managed to get some sleep.

I am still ravenous though.  I could murder a Big Mac.  And my heart is thundering and head is pounding (that precious little Ativan-Prednisone cocktail).

Snap! - Someone has arrived.  The life cycle of a facial cyst has just been explained in great detail - very, very close to the side of my curtain.  I love gross stuff.

Day 2 done.

Steroids, again

Today, I am "MS girl."

From behind the curtains of urgent care, I could hear the nurses calling me that.

It's different down here than up in the MS infusion room.  Very clinical and very rushed.

After a week of my now-usual tingling and numbness on my left side, I awoke to a completely numb right arm.

It was time to make a call.

After lots of behind the scenes arrangements in Neurology, the information was passed through the nurse to my Neurologist, who ordered the IV prednisone and asked me to come in to UBC urgent care. 

I need three days of infusion, and the MS clinic is not open on weekends.  Urgent care is.

So here I sit - for the second time in less than three months. 

It's hard not to think about the failed Rebif, the new Copaxone, and now the Prednisone - again.  And hope that something works. 

I really hope, in this mess of medications, injections and infusions, something - anything - works.

It's hard not to feel defeated.

And frustrated.

But just for the camera, I smiled:

It'll be a fun (Mother's Day!) weekend.