Sunday, 28 September 2014

Chronic illness funnies...

These.  Exactly the laugh I needed this morning...

Going to go print the bingo chart now!

 
 
 
 
 
 

Friday, 26 September 2014

Sometimes it's ok to give up

After I wore the Holter heart monitor for a day, my Neurologist wanted to see how I'd feel off the medication. 

* Insert huge thanks to the clinic nurse who has shown incredible care over the past couple weeks.  She truly went beyond what I ever could have expected or imagined.

It's tricky to "take a break" from Gilenya, as if you stop taking it for longer than a certain number of days, you need to redo the first dose monitoring rigmarole.   I tried 3 days off the medication, and definitely felt better.  The chest pressure, shooting pains and breathlessness pretty much disappeared.

Which is great!

But also kinda sucks. 

Today I made the decision to stop Gilenya all together.

This pill was supposed to be my miracle drug.  The drug that was going to make me feel normal, and vibrant, and symptom-free.

So now what?  Go through the process of deciding on another new medication, completing all the preliminary tests, figuring out if I have financial coverage? 

And the side effects - no thanks...

I can't be out of commission while attempting to parent two boys.

The temptation to go back on Copaxone is pretty strong right now.  It's familiar and did its job (sort of).

I did just find out I have full coverage for Lemtrada infusion treatments, which is something my Neurologist wants me to consider.  But this mega-drug is scary, and I am not sure if I am psychologically ready for it.

That's where things stand for now.  I see my Neurologist in 10 days to discuss/debate/run for the hills...!

Friday, 19 September 2014

Today we're going to learn about the ER...

I heard back from the nurse today (who spoke to a Neurologist familiar with Gilenya) about the chest pain and pressure I've been having since starting the medication.

Since the pains have been getting stronger, they sent me to the ER.

This little one had to come too.


Talk about a 3 hour lesson in medicine.  This guy sat beside me (and on top of me) while I had numerous blood tests, ECGs, and was hooked up to everything imaginable.

He also charmed the pants off the doctors and nurses and left known as "The Big Mr. O."

(That is, when he wasn't throwing his stuff around and threatening to "press all the buttons on the machines.")

Mommy - I see blood!  BLOOD!  Why Mommy, why is there blood?

The tests were all normal, but since the reactions from the medication could be completely random, I have a Holter heart monitor to wear at home for 24 hours.  It's like a portable ECG.  And a diary to record my symptoms.

Mommy - are those LASERS?!



I am still having chest pains and shortness of breath.  And who knows if this monitoring will actually show anything.

For now - I hope to never spend time alone in an ER with a chatty 3 year old again!

Friday, 5 September 2014

Mommy-school


Day 4 of Gilenya.

I can feel my immune system shutting off already.

It took every ounce of energy to simply get out of bed.  The exhaustion is incredible.

My head hurts, my lymph nodes are swollen and sore, and it appears that the mouth ulcers have started.

This is so hard with 2 kids at home.  One of whom should have started school four days ago.

And I am not happy.

I am not happy because our government prefers hiding behind accusatory rhetoric over solving this issue.  Our kids deserve a better system of schooling.  They deserve smaller class sizes, more EAs, more resources, and happy, well-treated teachers.

I want my kids to be in school.  I want them to be learning. 

But I seem to be left no choice right now.

So today, we will do our best.  We devised this, with seven-year-old input, until our current provincial lunacy stops:

 

Honestly - I have no clue what I am doing.  I am not qualified to teach.

But, you know what, I owe it to my children to TRY.  To do my best with what we've got.  With what I've got. 

I owe them that.

And so do you, Premier Clark.

Tuesday, 2 September 2014

Gilenya first dose

I was so, so nervous. 

Like my-pulse-is-raging-its-way-up-to-108-bpm-and-no-I-didn't-just-run-a-marathon, nervous.

Yes, you read that number right.  And my usual resting heart rate is around 70-75. 

Crazy.

That shows the extent my anxiety has on me sometimes.  Especially health issues.  Well, more specifically, health issues that require a wild gamble of treatment that potentially holds deadly side effects.

My first ECG was normal, so we were ready to start.

So I swallowed that pill.

The highlights of the day were watching a cheesy girly movie that I'd never get to watch at home.

Cough - The Other Woman - cough.

And not having to eat the crappy lunch I packed.

Gilenya is expected to lower your heart rate quite a bit, but assisted by my anxiety I began the day with a nice juicy heart rate.

And as expected, it dropped - as I calmed down, and as the medication took effect  My blood pressure dropped too.  I felt quite dizzy, very cold. 

Vitals were taken every 30 minutes for the day, and we ended with an ECG to check for anything abnormal that would require further monitoring overnight at VGH.

ECG was normal.

Time to take my weary self home - for a warm bath, comfy pajamas, and some chips and salsa.

Still a little dizzy, with some breathlessness, and an odd heavy feeling in my chest.

(all to be expected).

I'm exhausted.  And so happy this day is done.

Pill #2 tomorrow.


 

Wednesday, 27 August 2014

The never-ending update

Last week I had all my heart tests redone.  They are normal.   Thank goodness. 

The abnormalities picked up during the first exam have been deemed due to technical error.

My pre-Gilenya blood work and eye exam look good.... So, I get to start Gilenya.

On Tuesday!

It involves a day at a "first-dose observation centre" to monitor the expected changes to my heart. 

They told me to pack a lunch - sounds so luxurious...

The only outstanding issue is (another) form for insurance that wasn't completed months ago.  I have coverage from the province, but now we cross fingers that my private plan picks up the rest.  And it happens fast.  Cause this stuff ain't cheap.

Until  Tuesday...

Thursday, 21 August 2014

A year in review


Today is my "MS-iversary," as I've come to call it.  Two years exactly.

It's amazing how fast things can change.

How your life alters and normal becomes redefined.

The day-by-day lifestyle that comes with a neurodegenerative disease is hard.  I try, so much, not to let it consume me.

It wins sometimes.

There have been relapses, new permanence to symptoms, and more appointments than I ever imagined.

But, there has also been a great outpouring of support.  Support from people I hardly know.  From people I've known forever.  Thank you.

This past week has involved a lot of waiting.  In my world - waiting equals stress.

I repeated my abnormal heart tests, had my blood work done - it's been almost a week.  I haven't heard anything.  The waiting is killing me.  And everyone is suddenly on vacation.  At this point, I don't have a clue what's going on in terms of starting Gilenya.

Adding anxious to anxious is never good.

But, all that being said, year two has been easier.

My type-A self has learned to live with the what-ifs a little better.  The appointments don't scare me (as much).  I conquered the injections.

So, today?  Do I do something special?

As life has it - it is also A&W's Cruisin' to End MS.  $1 from every Teen Burger sold goes to the MS Society of Canada. 

I can't think of a better way to mark this day.  A donation and some awareness.

Huge thanks to A&W Canada, who have raised over $5 million to help people with MS since starting this event.