We made Lemonade...

The sun was out, our jackets were off, and we had a fabulous walk through Stanley Park.  I thought I would be filled with emotion and tears, but all I felt was genuine happiness. 

It was a chance to catch up with old friends and new.  To smile, hug, and appreciate the things we can control.

The things we are grateful for.  And fortunate to have.

My first MS walk was a success and I can't wait to do it again next year.

 

 

Thank you

Tonight, as I anxiously prepare for my first Copaxone injection into my stomach, I can't help but feel (ironically) happy.

And loved.  Supported.

I am so nervous with these new injections - they hurt a lot more than Rebif.  And the pain lasts for days.  I think about them hours before I even have to do them.

But tonight, it doesn't bother me so much.

The MS Walk is in 2 days, and I have pretty much completed my fundraising efforts.  And I am amazed - actually beyond amazed - at what the team has achieved.  "Making Lemonade" has raised more than $8000 for the MS Society of Canada.

The donations have been big - from corporations and family members and Neurologists.  And the donations have been small  - perhaps the most poignant being from Jack's school friends.  $5 is a big deal when you're five years old.

The past few months of fundraising have been very cathartic.  Giving me something positive to put my energy into.  Something to focus on that is helpful and healing.  Something that will eventually see its way back to me and my family. 

And most importantly - something that makes living with this disease just that much more bearable.

There have been some huge life changes for me in such a short period of time.  The axis of my being has shifted into disbelief, confusion, anger, and sadness. 

But the love, support, and generosity of each of you has helped me re-focus on the hope and possibility that is present in my life. 

The fight to end MS is still ongoing, but I have faith that someday we will see its demise.

So, thank you - I couldn't have done this without you.

Float like a butterfly, sting like a bee

I did it.

My first shot of Copaxone. 

Jon and I both were trained for manual and auto-ject methods, practiced with saline syringes, then I did the real injection on my thigh.  I have to use 7 different injection sites on my body, and rotate through them, in order to prevent permanent damage to my skin.  Watching Jon's "dart-playing hands" made me very worried for the backs of my arms.

The shot itself?

It feels like you are being stung by a mob of angry bees.  Then the stinging radiates out, then the redness spreads and a huge welt appears. 

An hour later it still stings, and the welt is growing.

I suppose the skin reactions are better then the quasi-heart-attack though.

So, I muster on - somewhat reluctantly. 

Thank goodness the children brought wine when they returned (thanks Mom and Erin).

Repeat tomorrow.

----

Sometimes I feel like I have aged 10 years in the past 6 months. 

I look in the cabinet that has been consumed by my medications and concoctions.  Every single day I take 3 prescription pills,  6 supplements, and an injection.  I am pretty sure I take more medication than all of my Grandparents combined.  That makes me feel old.

----

I have to admit, I am a little scared to do my injection again tomorrow night.  And I know that spending the entire day thinking about that will potentially make it a whole lot worse.

Thank god for therapy-Thursday.  And the wine I am about to have.

Tomorrow

Tomorrow is the start of Copaxone.

It really does take a long time to get started.  You don't just get a prescription, fill it, and start.

My doctor needs to fill out the prescription related paperwork, as does my pharmacy, and insurance company.  Then I have to special order the prescription and wait for that to arrive.  Once I have that, I call the support team for Copaxone, speak to a nurse a few times, wait for package from them.  Once I get the package, I wait for a call from a local nurse who comes to train me on the injections.

She's coming tomorrow.

A few weeks ago I was so nervous about starting Copaxone.  Now, after all this waiting, I just want to do it.  Shove that first needle in and be done with it.

I am very impatient - in all aspects of life.  But with this - the impatience has actually helped calm my anxiety.

It's been nice being needle-free for 3 weeks.  But my fatigue has become much worse.  It's a permanent I-could-drop-to-the-floor-right-now-and-sleep kind of tired that wasn't there while I was on Rebif.  Despite all the negative reactions from it, obviously something was working.

And now, fingers crossed that Copaxone will work - in all aspects of its capabilities.

A delivery

A special delivery of Copaxone accessories appeared yesterday.  It's not as exciting or high-tech as the ones provided by Rebif.

They also don't provide sharps bins or alcohol wipes - which seems odd, seeing as I need to inject every day.

There is no smart-injecting device, or the infamous "needle removers."

I did get "needle clippers" to cut the needle from the syringe before it goes into my sharps bin.  The highlight, according to the nurse on the phone - it can hold three years worth of needle tips.  Hmm, great. 

And, I got this foreboding, yet comical, strap-on piece of practice faux-skin.  Leave it to a drug company to mail you this ominous little item, with no instructions or descriptions, that looks like the most primitive sex-toy you could imagine.  I have to wonder if this gets added to the welcome kit purely for comic relief.

----

I asked Jack what he wanted to do today.  He got to pick anything.  And he got to be the boss for the day.

He decided he wanted to spend the day with me.  Just me. 

We went out for lunch, to the Maritime Museum, to the beach and the park.  It was a sunny day.  And a happy one.

I am finding I need to prioritize alone-time with each of my boys.  They enjoy it more, I am less stressed, less hurried.  We can enjoy the day without commitments, obligations or worries.  We just go where we want.

Today, we were pirates...

Arrrgh!

Parenting

Why is parenting with a chronic illness just a little bit harder?

Let me just say I will never be president of the PTA. 

I will never make 300 cupcakes for my kid's birthday party or for a school bake sale.

Mostly, it's exhaustion, but there is also this niggling sense of mental incapability that can become consuming.  Consuming simply because having a life-long disease becomes a chore. 

It's hard to not put your kids first.  Sometimes you have to say no to that party invitation, cross your fingers you don't become no-fun-mom, and move on.

It's frustrating when your kids don't understand.  I know it's important to explain MS to them in terms they understand.  And at a level appropriate for their ages.  But how does that work?  I actually heard myself once saying to Jack "Mommy's brain just can't do that right now."  To a 5 year old, what exactly does that mean?

There is never a quiet moment.  My boys are my life, but I tell you, they are the loudest and busiest creatures I have ever encountered.

There is more guilt.  Yes, more guilt than regular Mom-guilt.  And wife-guilt.  You do fewer baths, fewer bedtimes, you usually don't go to the park after 4pm.

And I know that one day, most likely, they may resent my health issues.  They may be embarrassed, frustrated or disappointed.

But it's okay.  I know they don't care who makes the cupcakes.  They don't care if Mommy has no make-up on today.

I can only hope that what they go through now, with this, helps turn them into sensitive, caring, empathetic men who value life, love, and family.

This makes me laugh!

Old vs. new

I think one of the hardest things to accept with MS is comparing the old to the new.

We spend years - decades - developing ourselves, nurturing our personalities.  Defining who we are. 

And then something happens - snap - and it all gets turned upside down.

We try, so hard, not to let it.  But it does.

So we keep working.  And keep working...

And I think it has to be a process. 

I often wonder how long it will take before there is not that constant before vs. after comparison.  Going with the flow and accepting that this my new normal.

----

I haven't even started my Copaxone yet, but it is hard not to think about the little things that are now part of my daily reality. 

If I am out for the evening, my meds come with me - needle, sharps container, and all.  What if I go to the movies?  To a concert?  It seems as though my drug-company paraphernalia will be accompanying me to many places indeed.

----

Sometimes, when you are not feeling so great mentally, you need to do something physically to make you happy.

I've been feeling very dull, very blah, and very tired lately.  So, I checked myself out of bedtime-duty and headed out in search of a pop of colour.

If it provides even a second of smiling, then it's worth a shot: