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.

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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.

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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:

The goods

Here it is - a big box of Copaxone.  A month's worth.

It's a little cheaper than a month's supply of Rebif, but still extraordinarily expensive.  And again, this makes me so thankful for both my private medical coverage plus the province's health system.  I pay $5 a month for $1412.28 worth of Copaxone.

My trip to London Drugs to collect my meds was an uneventful as usual.  There is always confusion at the pharmacy - they can't find it (cause it's always in the fridge and they don't listen to me when I tell them to look there), then there is confusion about the payment and paperwork.  I am used to all that.  The part, for the first time since I started medication for MS, that physically made me suck in my breath and stop mid-sentence was this:

They are bigger than I expected.  And I am picturing the contorting I'll need to perfect in order to get those suckers into exactly the right site.  Without my hands shaking, while grabbing a handful of fat to inject into.

It's ironically amusing to think I used to be scared of the flu shot, or taking my kids for their immunizations.  Now this.  Daily.   

I am not thrilled.

Copaxone

I have a new prescription for Copaxone.  It's the next injectable I'll be starting.

Copaxone (glatiramer acetate) is a synthetic protein made up of a combination of four amino acids that chemically resemble a component of myelin (the insulating material that protects nerves and helps them work properly). Copaxone induces the production of immune cells that are less damaging to myelin.

The most common side effects of Copaxone therapy are injection-site reactions. Less common side effects include some of the following symptoms immediately after an injection: flushing, chest pain, palpitations (irregular beating of the heart), anxiety, and difficulty breathing. However, these symptoms are usually temporary and do not require specific treatment.

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So this'll be differerent than the beta-interferons I was using before, in that the Copaxone tries to mimic the actual part of my brain that gets attacked rather than trying to stop certain cells from entering my blood-brain barrier.

The upside - no more monthly blood tests, as Copaxone does not affect liver function and blood counts like the Rebif did.

The downside - daily injections.  With no autoinjector.  I get a month of pre-filled syringes.  Each day I'll need to find a new injection site (fun) and do the injections at home. 

My Neurologist wants me to try this for 2-3 months, then reassess.  I think the ultimate goal is to have me on Tysabri, which is a monthly IV infusion.  This drug has better success stats, by far, but also has more side-effects that can potentially be deadly.

----

A nurse will come soon to teach me how to inject this drug, as it will be so different from my last.

Although I am happy a medication decision has been made, that pit in my stomach still makes me feel completely out of control.

I wish I could just snap my fingers and not have to think of this ever again.

MS Conference

Today, a first for me - a multiple sclerosis conference.

I sat, with hundreds of others - people with MS, their families, their friends, healthcare professionals, and speakers.

The three main topics:  The science of happiness, cognitive change in MS, and MS fatigue.

Dr. Mark Holder, a psychologist from UBC, who spoke about "the science of happiness," was perhaps the most interesting.  It's amazing how such an abstract concept can be studied so methodically, and can actually be proven to be the most important aspect of our lives.

It was probably my first event where the physical disabilities of MS were the majority.  And it's hard not to look.  To watch.  To wonder - "will that be me?" 

When a woman with MS took the stage to particpate in a panel discussion about fatigue, I was moved.  Here she was - with a walker, a wheelchair, and legally blind in both eyes - all because of her MS - and she talked to us about finding the small positive things in our lives, accepting our fatigue, and being grateful for what we do have.  She spoke with humour, reality, and grace. 

She made me laugh, and she made me cry.  But she gave me hope.  If she can be this positive, despite such adversity, perhaps I can too.

And then I met Jennifer - who, up until now, I only knew electronically.  We both have MS, MS blogs, and we both have teams in the Vancouver MS walk (her team, the Kits Kruisers, are beating my Making Lemonade-ers!).  We didn't recognize each other until we saw our respective name tags.  And then it was like we were old friends.  It's amazing how a common disease, and common reality, unites people.

Done

I am officially done with Rebif.  Technically it's called a "Rebif failure" - my relapses are increasing and my physical reactions are still bad, six months into using this medication.

To celebrate, I emptied my sharps bin from the past 6 months:

I am feeling defeated.

All of this, and nothing to show for it.  In my mind I had decided this was the drug for me.  It was going to reduce my relapses and lessen my lesions.  Nope.  In fact, just the opposite.  It really is frustrating.  And especially now - as my hearing keeps getting worse and worse. 

It's odd - my hearing is greatly reduced in one ear, yet any sounds that I can hear, close up, get greatly amplified and it feels like my brain is going to explode.  Not fun with 2 young (and loud!) boys...

So, upwards and onwards right?  Tomorrow I figure out what to try next and when...

Brain on fire

How's this for an MS awareness ad?

I am in bed today.  Yesterday's inklings of a repeat relapse have come true and my hearing continues to get worse.  My brain is foggy and I am feeling weak. 

Brain on fire.

Despite my "not wanting to know more" dramatization from my previous post, I did call the nurse today to request information about switching medications.  I just can't do another post-injection night of no sleep; being so cold, shaky and achy that I end up in a hot bath at 3am.

I have no idea how that process works - cold turkey?  Immediate switch?  A medication "holiday?"

First I need to pick the next drug to try. 

I hate that I have spent 6 months injecting myself with this stuff, only to find it is not working.  Only to discover that it has been a waste of energy, money, and time.  I still get horrible reactions from it and I continue to relapse. 

I guess this means it's time to move on...

Decisions, decisions...

What came first?

The stress or the relapse?

With MS, stress is a key factor in causing, or exacerbating relapses.

A month ago a relapse started - I lost some hearing, had a hard time using my left hand, and was having balance and coordination issues when walking.

I undertook a 3-day course of IV steroids.  My hearing improved incredibly, almost right away. 

And now, it all seems to be happening again.  My hearing is fading, my hand is not as strong and can't grasp very well. 

And this all happened over the course of a couple hours.

This reinforces to me the temporary effectiveness of prednisone when treating an acute MS attack.  It aims to reduce the autoimmune reactions in my brain and spinal cord, but there is no guarantee it will work.  No guarantee those 3 days of drugs will be worth it.  It's a finger-crossing gamble.

Now I am left to wonder what went wrong.  Why are the exact symptoms occurring again, now.  Is the same relapse still happening?  Is this a pseudo-relapse (the same lesions in my brain and spinal cord flicker for a bit but do not last long enough to be a "true" relapse).  I don't know.  And honestly, I don't even want to.  I don't want to make the call to my neurologist updating them on my status.  Confirming again that things are not going as planned.

This is a first for me.  I do not want any new information.

----

I am learning how to read my body.  How to notice when I am not feeling well.  When I need to stop everything and just go to sleep. 

I've had a few of those days recently.  Life catches up.  Kids catch up.  And suddenly I am back into my routine of extreme MS fatigue that sends me to bed at 5pm, and never leaves me feeling rested.

And it's hard to make people understand.  They look at you like you are crazy, tell you to drink more coffee, get more sleep or take a day "off."

If those were the solutions, I'd be one happy woman.

Meanwhile, the MS chronicles continue...