Thursday, 18 January 2018

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).

Friday, 12 January 2018

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'...

Saturday, 6 January 2018

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.