You win some, you lose some

Another neurological checkup today.

Good news first - the eye nystagmus (when the eye makes fast, repetitive, uncontrolled movements that interfere with vision and depth perception) that has been present for the past year wasn't noticeable at my exam today.  

In the scheme of things, that's pretty small.  But I'll take it!

The bad news - my EDSS (Expanded Disability Status Scale) score continues to get higher and indicates what I already knew.  There is disease progression happening.  And I can just feel it.

The disability scale for people with multiple sclerosis runs from 0-10.  And goes up in 0.5 increments.  I am now classified as having mild disability in two functional systems, but still have the ability to walk.  There are 8 functional systems - pyramidal, visual, cognitive, spatial, brain-stem, sensory, bowel/bladder and cerebellar. I'm about a 2.5, varying by the day.

I'm not going to change medications again, as it's been a difficult year because of that.  But my neurologist and I are always reassessing.  Shout out to Dr. T.

Meanwhile, I'm going to add a third volunteer role to my life.  It's a study through the MS Clinic and is called "Establishing an Imaging Biomarker for Disease Progression in Multiple Sclerosis."

I enjoy volunteering - the ambassador work, the peer support.  And if imaging my brain, performing neurological and cognitive tests and poking and prodding will help the future direction of MS, of course I have to do it.

Remembering heartbreak

We sat next to her hospice bed, watching her last few breaths.

Holding her hands and stroking her hair.  Our eyes filled with tears.

Talking to her, despite days of unconsciousness. Telling her how much she was loved.

Comforting her; telling her it was okay to go.

It was time, and her pain needed to end.

----

Today and tomorrow are the most emotionally conflicting days for me.  The most intense pain I have ever felt, and then a glimmer of happiness.

October 22 was the day my Mom died.

October 23 was the day my youngest was born. He was turning six that year.

It's been two years since my Mom died.  The most surreal day I could ever imagine.  It truly feels as raw as the day it happened.  She passed away shortly after I arrived at the hospice, my sister and I with her.

She waited.

She waited for the three of us to be together in her room.  And she made sure it happened before my son's birthday.  Despite her unconscious state, she knew.

It had been a short but intense illness, and we knew her hospice stay wouldn't be long.

But I still can't believe she's not here.

Now, after the wounds are a bit older, I can celebrate these two important people together. I can think of my Mom, and honour her by doing her favourite things on this day, then I can celebrate my little man tomorrow, and know that my heart bursts with love for him.

An inverse few days, emotionally, but definitely filled with so much love.

We never stop learning about love and loss.

I'll never stop missing my Mom.

And I'll never feel fully complete without her.

Yoga

I started practicing yoga decades ago.

I loved it. 

It was all kinds - Hatha, Yin, Kundalini, Meditative.  I even threw some Pilates in there.  Each with its distinct benefits.

I stopped as life got busier and my MS made my balance really bad.

Some days I teeter around for no reason, other than my brain and spinal cord attacking my body.  There was not going to be any one-leg balancing, as I used to do.

But thanks to some gentle pushing from my sister, I have started again.

I don't need an adaptive class, as I am still mostly able, and thankfully am familiar with the types of poses done in each type of class, so am able to foresee what each class will involve. 

I am back in yin yoga (where you hold the poses for extended periods of time). 

It started today and I feel excited and refreshed.  My body knew exactly what to do.  And I could do it for hours.  As if I had never stopped. 

I feel good.  Thank you Vayusha Yoga Studio.

Crappy balance aside, I'm feeling pretty proud of myself!

Summer updates

It's been a summer full of change.

Big changes for us all.

We moved to a new house in a new neighbourhood and have spent the time settling in.  It's so nice to have the extra space for the boys and a huge yard for a beautiful garden.  I am grateful for that.

My Ocrevus infusion back in January has officially been deemed unsuccessful, so I was left with the decision of which medication to go on next.  There are only a few options left. The one that is brand new and shows a lot of promise is another mega-drug which obliterates the immune system.  Similar to the infusion I had.  It terrifies me.

It's hard to make this decision. The mega-drugs don't seem to agree with my body.  I felt horrible for 6 months after the infusion until it started to wear off.  And I had pinned all my hopes on it.  It was going to make me feel better.

But it didn't.

In fact it made things physically worse, and my MRI showed new disease activity too, including my brain stem.

So, after a summer of no medications, today I finally conceded and filled my prescription to go back on my daily injections (again).  They are ruining my skin and aren't strong enough for my MS, but right now I need something I can live with that doesn't leave me in bed for weeks.

I'd give anything to make it a pill or an infusion, but alas, not meant to be right now.

It's such a Catch 22.

And to be honest, I don't know if this is the right decision.  But it's a decision, and I needed to make one. The proverbial band-aid had to be ripped off, and today was the day.

And now we move forward.  With fingers crossed.

MS Update

Another day, another trip to the MS Clinic.

It's been a difficult 6 months.

Today didn't help.  

I feel deflated.

The eye damage that became noticeable a few months ago is still here, despite the steroids, and is now considered a permanent part of my MS.

My MS has also now moved from just my brain and spinal cord into my brain stem too. This accounts for the changes to my eye and for my increased vertigo.

There is nothing quite like viewing your brain images, all lit up like Christmas trees, knowing that things aren't getting better, to really make you feel diseased.

I am still not sure which medication I will move to yet, but that will happen over the next few months.  The Ocrevus infusion I started in January seems to have only made things worse.  In the meantime, My Neurologist told me to try and rest and reduce stress as much as I can (Ha!  I'm moving to a new house next week, with 2 kids in tow!).

Sigh.  Not the appointment I was hoping for.

On Mother's Day

Happy Mother's Day to all the Mamas out there!

It's a very bittersweet day for me.

I get to celebrate my own motherhood and my two wonderful boys.

But it's also a day that gets thrown in my face; I don't have a mother anymore. 

And it still feels pretty fresh.

Of course I think of her daily, and she is still a part of my life in the legacy she has left and the lessons that have been taught.  But she's not here, physically.  And that's so hard.

I purposely avoid the stores and the ads about Mother's Day, because I just can't do it.  I wish I could see the excitement that we all celebrate. And perhaps that will come with more time.

This year, I've got some big life changes quickly approaching.  Ones I am nervous and apprehensive about.  And I wish more than anything she was here to guide me and reassure me.

I try and trust the process.  Know that she is somehow here, somehow able to still impact me and help things become easier.

And so I'll celebrate that.  I'll celebrate my kids and my own motherhood, and I'll remember the Mom she was to me and how important that still is.

To those of you without Moms too, I think of you.  And share all my thoughts of love.

And if you have a Mom, hug her as tightly as you can and say thank you.

Surprise relapse and the dreaded prednisone

I've peeled myself out of bed and away from my iPad for an update.  Thank you to everyone who has asked.

To fill you in:

Yesterday I had another follow up appointment with my neurologist after my bad Ocrevus reaction.

Three months after the infusion and I am still feeling off.  A lot of dizziness and extreme amounts of fatigue, and last week I noticed my eye seemed "off." I couldn't tell what it was, so it was added to the pile of unexplained MS stuff.

My physical neurological exam showed that I now have MS-acquired eye nystagmus.  One eye literally shakes in it's socket and can't follow my Dr's finger in a straight line or without "jumping." It's a relapse.  And hopefully a temporary one.

And I couldn't do any of the balance tests.

There is no way to know if this has been caused by the Ocrevus, by my body reacting to this new drug mechanism, or if it's a completely separate event.

He examined me three times to be sure this all was as serious as presented, and admitted me for corticosteroids in hopes that they would help. I started yesterday and need 3 high IV doses, so will continue Tuesday/Wednesday.

Today I feel a mess.  Like my brain is loose and rattling inside my skill. Dizzy, disoriented.  A massive steroid headache.  I managed some sleep but am jittery and agitated.

(And had an ice cream cone for lunch.  Ha.)

I feel exhausted fighting this; tired of trying so hard without much result.

My heart feels heavy.

I understand that this is part of my life.  A huge part.  And I am ok with that.  I'm still learning, and living, and gaining perspective.

These little glimmers of reality just make it that much harder.

(But I'm still gonna put a funny picture right here:)

White blood cells

I am starting to see the effects of the Ocrevus physically.  And it's kind of blowing my mind.

They've dubbed it "the chemo for MS that never ends."

I've sure felt that, but now I see it too.

Ocrevus is a monoclonal antibody that specifically targets CD 20, a protein that is found on the surface of white blood cells called lymphocytes, or B cells.  This means that those B cells slowly die off, leaving you without a major part of your immune system.

This is why I've been avoiding sick people, germs, and use hand sanitizer a bit crazily.  I have no natural defenses against viruses, bacteria or injury.

And today it appeared physically in an odd way for the first time.  I was cleaning the railing of our outside stairs, as I do every year.  Nothing was different about the process, and I didn't injure myself or feel any pain during or after.  As normal as could be.

Fast forward a few hours and I am now covered in tiny sore bruises and more are appearing.

I'm not too sure what to make of it, but am hoping Tylenol, a hot bath and a good night's sleep help.

This is what it looks like now.  That's a bruise by the lower part of my tattoo, not a shadow.  Weird...

I'm not spamming you, I promise...

Firstly, to any subscribers who have been getting odd/old blog emails from my site, my apologies.  Please ignore.  Not sure what's going on.

But to put worrying minds at ease (thank you for reaching out and asking!), I am doing much better than when I last posted.  I am still having some odd dizziness and vertigo and a lot of extreme exhaustion, but I'm mostly back to normal life.

Man these meds are powerful.

It's been a slow process.  Recovering from the infusion, trying to get healthy, and attempting to figure out my next plan of attack.

I am not currently in the hospital, contrary to one of the weird repeat blog emails. Sorry!

I'm ticking along, enjoying the sunshine, and trying to get lots of sleep.

And for now, I'm using my very favourite (and most effective) medicine, laughter:

2 week update

It's been a long 2 weeks.  And counting.

I am still quite dizzy and not able to do many things. 

But, I'm feeling a little better, so am trying to do more.  Even little things like putting a load of laundry on; trying to walk more. 

If you see me looking like Bambi, that's why...

I've lost a bit of weight during all of this.  For those of you who know me well, stress and worry equal not wanting to eat.  Plus, not being able to get out of bed for a while made it harder to snack!  So again, thank you to those of you who made meals, brought me snacks, or had meals delivered.  It's kept me going!  And it has really helped.

My blood results are all okay, so now I just wait for this reaction and pseudo-relapse to go away. 

Time will tell when that will happen.

(until then, thank you old Friends episodes on Netflix, I feel like we're entering bff territory).

Ocrevus update

It's been nine days of hell.  Nine days of feeling so bad I thought I was losing control of my entire body.

I have been completely incapacitated.

Dizziness, vertigo, nausea, headaches, a numb and tingly foot, sensitivity to light, sound and temperature. I haven't been able to leave the house (and only sometimes my bed) because my balance is so bad.  I am so dizzy I can't shower standing up.  I can't do much for my kids.

It's brought me to tears.

So today it was time to head to UBC hospital.

My neurologist has deduced that I've had an adverse reaction to this medication (it kills off the B-cells in my blood, and apparently that was too much for my body) and that it's brought on a pseudo-relapse (meaning all my previous MS relapse symptoms have all sprung forth all at once).

I am not going to do my second half-dose next week, as planned, as it could make things even worse for me.

But, last week's infusion still counts as a dose of the medication, and it is effective for 6 months.  So, for now, I don't need to worry about not being medicated or about which drug to try next (although I can still give this one another shot in 6 months if I decide to).

For now - a bunch of blood tests to rule out other not-so-obvious issues, and more rest.

This has been my toughest ever MS related reaction.  And it's funny - I feel like you learn a lot about life and friendship in the face of illness and disease.

And I really need to thank the people who stepped up, without being asked.  The people who helped me, without excuse, and without hesitation.  You don't need to physically come here to help (looking at you, 9-month-preggo, who had meals delivered from an online company), and you don't need to do anything grandiose.  You can leave something on the porch, or just give me a call.

Anyway, I'm alive.  And still (kinda) kickin'...

Ocrevus - first dose

I feel like I am emerging from some sort of time travelling mishap right now.  The past few days have been really difficult.

I had my first half-dose of Ocrevus on Thursday.

It was long, grueling, with many bumps along the way.

I knew there were immediate side effects that were likely.  But I wasn't expecting almost all of them.  And I wasn't expecting my body to go a bit crazy.

After starting and stopping the infusion a few times because I wasn't doing well, and spending about 8 hours doing so, it was completed.

And I've been in bed since.

Feeling a little more normal today, but still very dizzy, nauseous, and not quite with it.

I have so many more details rattling around in my brain, but I don't have the energy to sift through them all right now.

Thank you to everyone who has asked about me.  Thank you Erin and Pam for the food.  Thank goodness for you.

Next dose on January 17th, then every 6 months.  And hopefully it gets easier each time.

I'll update more over the next few days.