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.

The chronic illness collective

Living with a chronic illness is a really lonely experience.  Unless you live it, it's hard to understand it.  It's hard to grasp why someone looks okay and is out doing "normal" things, when they are chronically sick.  Or the biggie - why they don't work.

I get this one a lot: Now that your kids are both in school, what do you DO?

It's hard to answer that one.  I do lots of things.  I run a household, take care of my kids, coordinate their lives, but a large portion of my life is spent being a patient, advocating for my health, going to many, many appointments, and sometimes not feeling that well.

Sometimes I can handle one task in an entire day, sometimes I wake up and cannot do anything without feeling like I am going to fall over.  Some days I can do everything.

And occasionally people question that, or simply change or ignore the subject.

My friend Emily, who lives in Nova Scotia, gets it.  And you know what?  We've never even met.  

Her blog post, which you can read here, is what prompted me to write today.

She lives with a chronic illness called neurofibromatosis, has two young boys (who also never stop moving), and has dealt with the loss of her Mom to cancer much too soon.  We've got a lot in common.  

She mentions an article called 15 Secrets of People Who Cant Work Because of an Illness.  I read it this morning and really needed it.  I'm very dizzy today, feeling a little sorry for myself, kind of wishing this would all go away, but after reading it, felt a little stronger.  I feel the comfort that Emily speaks of.  I feel the support of this collective group, whether they are near or far.

So thank you, Emily.  You made my day a little brighter.