Relapse

The tingy toes have progressed.  Now it's numb toes and a tingly entire left foot. 

It's been about a week.

It comes and goes in it's severity.  Mornings are the worst - that's when it actually hurts.  After a hike up the hill (plus stroller - with 30 pounds of toddler and kid-stuff in it) to deliver Jack to school, it feels a little more "normal."

So today I made my first call to the MS clinic "relapse line" to announce what was happening.  What an oddly fascinating sick person check-in that is...  "Yes, hello, just calling to let you know I can't feel my toes."  The thing is - there is nothing that can be done for this.  I just wait it out, cross my fingers - and said numb toes - and hope it does not progress further.  If it were worse, I could take a course of IV steroids to speed up the recovery.

It is not pure coincidence that this is happening right now.  I started medication 3 weeks ago, and last week, upped my dose by more than double.  My immune system is basically being attacked by the medication - it lets the MS leap up and grab this de-myelinating opportunity.  What irony.  "You may get worse before you get better" they like to say.  Basically, starting the medication, and allowing my body time to get used to it, is probably going to make me sick. 

The past few days have been an all-too-real downer in the lessons of life.  I am focusing every ounce of my energy into living each moment.  We go to the aquarium, and gym class.  And I find ways for us to be active and busy.  But this little wriggly stream-of-consciousness worm gets into my mind, and it's hard not to imagine the worst.  It's hard for me to smile and pretend I feel fine sometimes.  Honestly - it's exhausting. 

I'll reach my full dose of medication in 10 days.  I am focusing on when my body is healthier, has adapted to the medication, and is tingle-free...  (and when my kids start listening!).  I know it'll happen - all in time...

Tingly toes

Nothing makes you feel "sick" like spending an hour and a half inside an MRI machine.  Not cough-cough sick, but people-are-talking-about-you-in-hushed-whispers sick.  Inwardly - "investigationally" sick.  Where you look completely fine on the outside, but more is brewing beneath.  So, I had some (well-deserved) alone time inside a medical coffin yesterday, to image my spinal cord and see if lesions have affected it along with my brain. 

An MRI gets hot - and 90 mins of clanking and whizzing makes you feel like you've been cooked from the inside out.  While you are stuck in there, the techs like to talk to you over the headset to tell you what's coming up.  The best line - on repeat - "Okay Sarah - this next image is going to take 6 minutes.  Please stay still and DO NOT swallow."  Well, now that that's been perfectly emphasized ALL I can bloody well think about is swallowing.  Or coughing.  Singing maybe?  It took all of my new-found meditation skills to get through that. 

I am now 2 weeks into my injections.  My dose went up a notch in my titration schedule last night.  And I am feeling okay.  That is the best of descriptors I can use.  Sorry.  Better than blah, right?    The worse side effects are lobotomizing headaches, exhaustion, and skin redness and reactions.  But, I am no longer scared of my boxes of needles - progress.

I have been feeling tingling and numbness in my toes again.  It's hard to say if it's a genuine MS relapse or an autoimmune reaction to my brain-conquering medication.  Although it is not painful, it is a very real, literally step-by-step reminder to me that something is wrong.  My brain is sick, and my body gets to experience it. 

Me and my tingly toes went for a pedicure today. A dark purple one.  Bring it, rainy season, my toes are ready.

Unconditional love

Sometimes support comes in the smallest of packages.  And sometimes, this support comes from the bond that only a mother and child can share.

I often catch my reflection in a random mirror, stop and stare, and think to myself - my god - you are a Mother.  A Mother.... bearer of life and responsible for everything.  Sometimes it doesn't feel real.  Like the past 5 years have been blurred by some sort of alternate reality.

But last night, Jack, in his littlest and quietest (which, if you know Jack, does not ever happen), asked if he could sit with me while I did my injection.  My boy was willing to give up extra story time with his brother to be with me - and not during the most pleasant of moments.

He sat - incredibly still - and in that same uncharacteristically little voice, would stop me and say "Mommy - I have a question..."  We went through the injection step-by-step, as I explained and he listened. 

Then - he told me if he ever had "what Mommy has he'd be big and strong too."  My heart skipped a beat.  He knew that I was trying so hard to be "big and strong."  In whatever form, he can see it.  And he knows it.  But in that same moment, I looked at him, hugged him - and I hope and wish he never knows his own life with MS.

It was good for both of us.  I needed him to know what was going on.  And so did he.  He still doesn't understand what is wrong with me, or what MS encompasses.  But at least now he can see what I have to do to my body, and is not scared or uncomfortable.

It was an important moment.

Music for the soul

Listening to Beth Orton soothes me, motivates me, and calms me.  She makes the kind of music that helps you get through life.  She seems to seep right into your pores, take on whatever it is you are feeling, and channel it so perfectly.  So perfectly, I usually end up crying.

I discovered her music more than 10 years ago while living in England, and have been an avid fan since.  I own each record - coveting them, saving them.  I have seen her perform in England, and in Vancouver.  So when I saw that she was coming back after a 6 year hiatus, it was like destiny.  This woman - the one who musically speaks right to the core of my soul - was coming here at the exact moment I needed her music to help me.  My emotions evoke response through music like a Pavlovian dog.

The moment she took the stage - completely alone - with just her guitar - I was mesmerized.  I may have even held my breath for a few moments.  I will never tire of watching her perform.  Her voice rasps and quivers with emotion each second she sings.  A completely unique Joni Mitchell-esque sound.  A true talent can stand up there, without back-up, machines, or syncing, and perform, true to life.

I felt my emotions deep into every inch of flesh and skin.  Right to my heart.  And exactly what I needed.  And hey - it doesn't hurt that I got to meet her and get her to sign a venue poster.  Yes, I stood side-stage with the crazy(-er than me) fan with printed-out photos of her, and the woman in tears (that was not me, thank god) and waited to see if she would emerge.  She did.  I honestly don't even remember what I said to her... I think I mumbled something about loving her music and that I was sorry I didn't have anything better than my grease-stained and partially bent (free) paper poster for her to sign.

Thank you, Beth Orton, for providing beautiful music, being the faucet to my emotions, and for helping me forget - even for just a couple hours...

Hope

Hope:  to look forward to with desire or reasonable confidence; To believe, desire or trust.

The MS Society of Canada supports this intuitive sentiment with the "red band of hope."  I have 8 more to give away - if you'd like to show your support.

Inquiring minds want to know...

How big the needle is!

So, for you curious folk (and don't be ashamed - I'd, of course, ask too), here's the best I could do.

My warning - look away if you hate needles.

I know there is no point of reference here, so it's hard to really see the size.  The needle injects about 1.2 cm into me if that helps.  This is the needle tip (it comes with a cap so I can handle it safely) that gets inserted into the auto-injector - and gets disposed of afterwards.  The multi-dose cartridge stays in the machine until it is empty and I need to insert a new one.

If you have any other questions, feel free to ask.

Take two

A knock at the door surprised me tonight.  I was already in my (very unflattering) pajamas and was preparing my big box o' fun full of injection stuff for shot number 2...

I had been craving pumpkin pie like nobody's business, and E and R made my night just a little bit sweeter with a wonderful personal delivery. 

Nothing makes shot-night better like a dessert does.

And shot-night did happen.  Just now.  I did the injection without a nurse here to hold me down, to correct me.  I went a little higher on my thigh - purely for fat - and it didn't hurt quite as much.  I also didn't bleed, which was a well-deserved bonus, I think. 

Then it was done.  Needle removed, and emptied.  Aforementioned box o' fun tidied. 

Slowly, but surely, my pent-up emotions about this diagnosis are coming out.  There was one teary moment last week, when I chatted with a fellow MS-er for hours.  And tonight, another.  I just sat at the kitchen table - leg stinging from the medication - and cried.  I cried not because of the injection - but rather just allowed myself that moment I needed to get some negative energy out. 

Crying feels good.  And so does pumpkin pie...

Life is a verb

Today I was gifted this book.

There is so much truth right there in that cover.  The title itself is enough get-up-and-go to inspire anyone.  Whether that inspiration means overcoming an obstacle, intervening in one's life, or dealing with something surprising and upsetting.

The awesomeness that is this book starts with:

"At some point in your life, you'll only have 37 days to live.  Maybe that day is today.  Maybe not."

That thought then progresses to "what would I be doing today if I only had 37 days to live?"

The answer begins with the realization that it wasn't about up-rooting life altogether but rather "was about living each individual, glorious day with more intention.  It was simply about saying yes, being generous, speaking up, loving more, trusting myself, and slowing down.  It was about fully inhabiting the life I have."

S - your generosity brought me to tears today.  Friendship and understanding truly are some of my greatest gifts in life.  Thank you.

Thankful

With life's downs, also come life's highs.  The moments we should embrace, enjoy, and be thankful for.  Of my thirty three years on earth, I suppose the timing of this Thanksgiving is not the most apt.  I am not in a celebratory mood these days.  But, as I tell myself, celebration differs vastly from thankfulness.  Here's my mustered-up list:

I am most thankful for my children's health and happiness.  I have two amazing boys who make me laugh and smile each day (even though they make me want to drink too much wine).

I am thankful for my family and friends.  And especially for anyone who has taken the time or energy to help me over the past few months.  Your words, and your listening, have helped me be stronger more than you probably know. 

I am thankful for our healthcare system and my health insurance.  Seriously.  Facing such a diagnosis (and not the most pleasant of treatments) is not the time anyone should have to worry about money.

I am thankful for wine.  Enough said.  (Oh, and coffee).

I am thankful for all my post-baby fatty areas.  Assuming that perhaps I planned this - you know - through all my vigorous working out?... that little extra bit of fat that I didn't have 5 years ago is going to come in handy.  And it's in all the right places for injections!  Love-handles: you will make my shots much more bearable.

And above all - I am thankful for life.  Thankful for each day I am here.  Each day I get to breathe, smile, read, talk, listen, and live...

I did it!

Today I gave myself my very first injection. 

And it still feels so surreal to say that. 

A lovely nurse came over for 2 hours to teach me everything and to let me practice (with fake meds and a little patch of fake skin).  We programmed my auto-injector for needle speed, injection speed, injection depth, and injection time.  Then it was time to go - I did this injection on my upper thigh, as it's a good starting point (I need to vary the location of each injection).  I inserted the needle into the injector, removed the cap, made sure the correct dosage was indicated.  Then I pressed the machine to my leg and waited for the infrared sensor to know it was next to my skin.  That makes the top of the machine glow green - and tells me everything is ready and I can release the needle.  The nurse put her hand on top of mine to ensure I wouldn't automatically flinch away.  Then it was up to me - I had to press that glowing green button.  She told me I could take some deep breaths, or count, or do anything that would help.  What I needed was to just press that button... so I did.  I felt the needle go in - but it wasn't too bad.  I could feel the medication go in, and the needle come back out - which hurt more.  The entire process takes about 10 seconds.  Then my machine beeps twice to let me know everything is done and I move it away from my body.  Then I remove the needle from the machine, put it in my sharps bin, clean up the tiny amount of blood (I am bleeder), and massage the area for a few minutes.

Doing this - successfully - for the first time, makes me happy.  I can do this.  I can purposefully stick a needle into my body - without knowing what will come of it.

A few hours later - I am starting to feel the side effects full-force.  My head hurts, my body aches and I feel a bit off.  I am going to tuck myself into bed with some Facebook and my Kobo to relax now.

See you again on Monday, auto-injector.  Left thigh next time...

Ready to go...

Today I received my stuff.  My injector, boxes of needles, another sharps bin and alcohol swabs.  Yes, even a tote and a fanny pack.   For all my fashionable travels, I suppose.  And the best - a screwdriver and .... wait for it... a "needle remover."  I hope I never have to figure that one out.

The injector itself comes in a nice little box, and even has a wrist strap... in case I drop it mid-injection? (if so, maybe that's why I also got the needle remover?)

Now the nurse just needs to come on Friday morning and I do my first shot...

Exhaustion

One of the biggest ongoing symptoms of MS is extreme exhaustion.  This, I have suffered with for many years.  Even pre-kids, I would often want to spend my time napping - or not have enough energy for simple things.

Now, with 2 kids, plus the diagnosis, I find myself asking "Am I tired because I have 2 young, busy kids or I am tired because of the MS?"  It is this revolving door of symptoms, and for me, a lack of explanation.  Back and forth from Motherhood to multiple sclerosis.  Ironically enough - some of MS's biggies are also a typical young Mom's life - exhaustion, baby-brain forgetfulness and Mommy-bladder.  It's a double-whammy of fun.

Sitting here right now... one kid is at school, the other is napping.  And I just woke up from a nap.  Nice and rested now?  Nope.  Now I am having some tea (going full-force caffeinated and not my usual anti-inflammatory green) in hopes of some energy.  Maybe stick my head out the front door - fresh air has gotta help, right?

And I think of how to explain it.  It's not an "I've been at work for 10 hours today" kind of tired, or a "I have a new baby and only get to sleep in 45 minute spurts" kind of tired.  It's a "I feel like my entire body is encased in armour and I physically have to focus on pushing through the weight and sheer exhaustion to do anything."  And I suppose the word "tired" doesn't cut it.... it's exhaustion.  It's fatigue.

I used to think this was normal.  I was a Mom.  I was supposed to feel like this all the time.  But now I know that this is different.  So, so incredibly different.  It is physical and mental.  And it is, for the most part, always there. 

I know that lifestyle choices are going to help this.  I have started with diet changes and the introduction of supplements.  I am trying to de-stress and relax more.  Honestly - the best decision I have made (and never in a million years did I think I'd be saying this) was quitting my job.  It wasn't because of the MS - but coincided exactly with the diagnosis.  As much as I still love it, and do miss it - there is no more rushing, no more commuting, and finally - finally - I have some time to put myself first.  To have some selfish time to listen to my body and not tell it to shut-up.  I am so appreciative of that. 

"The quieter you become, the more you can hear." - Ram Dass