2021

Well here we are, it's 2021.  

I turned 33 yesterday.  

The pandemic is in it's second wave and we're in another lockdown with restrictions and closures.  

The US politics are a mess, there were riots today.  

I just finished a new MS therapy!

Let's rewind to last September.  I called the MRI department to make sure my November MRI was still booked (medical appointments were being cancelled or rescheduled due to Covid) and they actually had a cancellation the next night.  The MRI was quick and I finally got some information about my results from my family doctor - new lesions. Again. That's new lesions on every MRI for the last 3-4 years. UGH.  I later called my MS Neuro team and went to see them a few weeks later.

New lesions meant Tecfidera was not working. Which we suspected last year...

Rebif/Injectables - failed.

Aubagio - failed.

Tecfidera. - failed.

It was decided that the first line medications weren't doing what we wanted them to so we had to step it up to a second line. I was given two choices and a few weeks to make my decision.

1 - Tysabri - monthly infusions for the rest of my life, unless I become JCV positive as it increased a risk of PML.

2 - Mavenclad - 2 treatment courses over a 2 year period that is shown to show less disease progression for 4 years.

After multiple pros/cons lists, talks with friends and family, and plenty of research, I finally decided on Mavenclad.  Stay tuned for my Mavenclad journey!

covid

These are truly unprecedented times.  The world is going through something we never could have imagined. 

In March of 2020, the World Health Organization declared Covid-19, the novel Coronavirus, to be a pandemic.  Canadians and people worldwide are asked to stay home, wash their hands and social distance (staying at least 6 feet apart from other people).  It's been 5 weeks since I last worked - wait, no - I was on a temporary leave of absence from work for almost 3 months.  Everyone was told to stay home to flatten the curve and slow the spread. Everything was closed except essential services.

Over the first few weeks I was scared. I have MS and I take immunomodulating medications and that would put me more at risk? The fear changed to denial, next depression and lastly acceptance - there was nothing I more I could do...

I stayed home.  I watched a lot of TV. My days were scheduled around what was airing - Good Morning America, Live with Kelly and Ryan, Ellen, Dr. Oz, Detroit news, Toronto news, local news - all of the news. In between those shows I watched every episode the 90 day fiancé franchise had out.  I also started and finished many different series' on Netflix. To keep occupied I would work out, go for walks through the cemetery, work on puzzles, played video games, cooked, coloured, read, worked on crafts, drank a lot of coffee, and facetimed friends and family.

I didn't even step into a store for the first two months. I ordered groceries from Walmart and did curb side pick up. As soon as I got home I wiped down EVERY SINGLE THING with a lysol wipe (*lysol wipes were impossible to buy, along with hand sanitizer and face masks).  The grocery bags went into quarantine and I didn't touch them for a few days.  If I had to take my garbage out, I would put a plastic bag on my hand to open the door and chute and immediately washed my hands after throwing it away. I wanted to make sure I wasn't bringing the virus home through things I touched.

My first real outing was to Shoppers Drug Mart. I had to go to the post office. I remember how stressed I was that day...my glasses were foggy, I was hyperventilating and struggling to breathe. People weren't following the arrows and I was trying to hard to not get close to them. I avoided touching anything that I wasn't going to buy. I remember walking out and ripping my mask off in my car, sanitized my hands and took a huge deep breath. I survived it.

We're almost 6 months into the pandemic now. Masks are mandatory wherever you go. You need to sanitize as soon as you walk into a building. Outdoor gatherings are preferred.

This is our new normal. This might be our new normal for a while.

2020

It'l be exactly a year that I had my last relapse.  And today it's been exactly a year that I finally accepted the fact that it was a relapse.  I started to get a weird feeling in my right thumb which led to a numbness in my entire right hand.  The numbness got so bad that I couldn't hold a cup, fork, toothbrush or even a pen, which was even harder because I'm right handed!  With the numbness came a pain/discomfort in my right shoulder has been there on an off which is likely from straining the use out of my right hand.

This all started shortly after getting back at the gym with a trainer so I was convinced it was just an injury.  I tried seeing a chiropractor, massage therapist, physio therapist and my MS clinic.  Everyone diagnosed it differently - pinched nerve, sprain, muscle tear, MS relapse.  Given that there were so many options, I chose pinched nerve and had an EMG...which proved that wasn't the correct diagnosis. I even recently had an ultrasound which also confirmed nothing was wrong with my shoulder. 

Typically when I have a relapse, things go back to normal-ish, this time it didn't.  My hand has a constant buzz/fuzzy feeling and some days the strength is weaker.  My penmanship is almost back to normal, I can hold chopsticks again! As with every other relapse, I've learned to adapt and overcome.  I know if I overuse my hand - cleaning, writing, working out - I will pay for it but I learned to accept it and know it'll get a bit better.

My next MRI is booked for November so we'll see what that shows and what the next treatment course may be.

They don't call it relapsing remitting for nothing

So the inevitable happened, I had a relapse.  I've been bragging about how my last relapse was in 2011 and that it wasn't anything super crazy. I also joked and said that with 6 more relapse free years the bank would offer me insurance! I could almost blame myself for this one.

But mostly I blame the last MS medication that didn't work for me. When I went in to the MS clinic a couple months ago, they pointed out new active lesions on my brain. Because of this I had to "wash out" the medication from my body before switching to something new. That meant that for about a month I wasn't injecting or ingesting any disease modifying medication which is when my body decided it was going to war.

One day I noticed that my walking was off - I was limping - and I had a horrible pain down my left leg. This led me to think it was likely just sciatica so I went to a walk-in clinic where they also thought that was the problem, cleared me of a uti and sent me on my way. The walking didn't get any better, and the sensation in my left leg definitely wasn't right...time to call my neuro.

After about half an hour of safety pin scratching, knee knocking, finger to nose touching and hopping on one foot, the nurse practitioner decided it definitely was a relapse I was having. With that, it was recommended that I went on a very high dosage of steroids for a few days to bring inflammation down quicker and then to taper off of them for a couple of weeks.

I swear things with my relapse got worse over the next few days. My right leg was week, left hand and left foot went numb, my sides were super tight and I was still in so much pain plus I was still limping. I felt like I had 2 pairs of socks bunched up on one foot, 5 gloves on one hand, a corset tied tight and that I was laying on a bed of needles.

Plus with the steroids came a whole new slew of side effects.  One minute I was super energized and wanted to do a billion things (unfortunately my body reminded me that I couldn't really move so I just ended up watching a lot of TV).  My senses were overloaded, loud sounds gave me migraines and I just wanted to lay in a dark and quiet room because I was angry with everyone and everything. Next came fatigue, followed by insomnia and then more pain. Legit the most stressful week of my life.

I'm happy to say that after 2 weeks of steroids I am finally starting to feel like things are getting better. I still have one more week to go and as much as I hated the steroids, I am grateful that I took them.

Next week will mark the next chapter of my MS book: Tecfidera.
Please be kind to me and work!!!!

long overdue update!

So I guess the last time I blogged was when I had my MRI last year and so much has happened since then!

A few months before that last MRI I went to the MS clinic to talk about my DMT (disease modifying therapy). As I've written before, I was on Rebif, a medication that I would give myself by needle 3 times a week. After a couple years, though, I just couldn't do the needles, bruises, chills, hangover feelings and anxiety anymore. Halfway through my conversation I was in tears and the nurse practitioner decided that I should look into a new treatment.

Not even a week later and I started my adventures with Aubagio! A tiny little blue pill that I would take every morning when I woke up. Along with the pill came a few gastrointestinal side effects but nothing that I couldn't manage and that only lasted a couple of months.

Fast forward through a vacation to Arizona and another to Mexico. Not too long after that I bought, renovated and moved into my first place! Work was work, a few friends came and went, I continued dating the sweetest and most understanding man and I gained a sister-in-law! Definitely a good year for me!  2016 is looking pretty promising already with a couple of my best friends getting married and my MS seeming to stay under the radar.

A month and a half ago I had my follow up MRI and a week later my neurologist wanted to see me. Apparently when the neuro wants to see you a week after a test, it's usually not because they wanted to say "good job".  She broke the news that since my last MRI I've gained 5 new lesions. Now that might not sound like a lot but over the course of my Rebif days, I gained 0.  This means that the Aubagio has not been working for me :(

Since Aubagio stays in your system for quite a while I have to work on flushing it out quicker by drinking this horrible murky orange water drink 6 times a day for 11 days. And if that doesn't work...which of course it didn't...I have to do it again.

Once I finish this flush and I do another blood test to (hopefully) confirm that the Aubagio is no longer in my system and the neuro gives the green light, I get to start the next chapter in my DMT book...Tecfidera! Here's hoping that this is the one for me.

Dating and MS

Oh hey there, it's been a while...

I thought I'd post some of the blogs I wrote for a website a couple of years ago. Unfortunately that website isn't around anymore and that makes me sad since I really used their resources. Anyways, here's a post I wrote about dating & MS!

As a single young lady in a new city, I find myself spending a lot of time meeting new people whether that’s out at the bar, my local bookstore or through my circle of friends. Often times, these new friends can lead to dates.  Since my diagnosis I have been on quite a few dates and to this day I still don’t know whether or not to disclose my disease or even when I should tell someone.  Dating is hard enough as it is so when you throw in a curve ball like Multiple Sclerosis, it can make it even more challenging. I’ve basically tried most scenarios from telling my date right away, to waiting and even not telling at all.

Disclosing on the first meeting can sometimes be a turn-off.  Some people might find this is too much information for the first time you’re meeting them.  They might be uninformed or have little knowledge of Multiple Sclerosis so they may think the worst.  On the other hand, they might be accepting right away and recognize that this disease doesn’t change the fact that you both like the same TV shows or love to travel

To be honest, waiting is usually the route I take.  I wait and see if this new relationship is going to go anywhere and if this person is important enough to me to let them know about my MS.  If I feel that things aren’t going to turn into anything serious, then I won’t bother saying anything.  But if there seems to be potential, then I usually muster up some courage and go along with my well-rehearsed speech explaining the disease that I was diagnosed with a few years ago.  I don’t usually get into too much detail unless they start asking more questions.

I’ve had a few people just ask me what is wrong with me.  I’m used to talking about my blogs, medication and symptoms with friends so when it comes up with people that don’t specifically know about these things, they often catch on and eventually ask what is up with me.  Often I’m not prepared to give them the speech and I just say that “it doesn’t matter,” “it’s a long story” or “I’ll tell you some other time.”  This almost always gets them to dig some more until I finally open up.

Then there are the few people that I don’ tell at all – even some that I’ve grown close with – but that I felt didn’t need to know about my MS.  I liked where our relationship was at and didn’t think it was important enough to bring up.

None of these circumstances concluded the same way.  Most people were completely accepting no matter when I told them; a few were confused or even deterred by the information.  Unfortunately MS is a part of me and always will be.  If someone can’t welcome me for who I am, they aren’t worth my time.

Thoughts from the MRI tube

Oh hello there strangers. I promised I'd update my blog and as I was laying perfectly still in the MRI tube tonight I figured I should right about the random thoughts that went through my mind during that 45 minute test.

• She said this will take 45 minutes, can I sit still that long?
• Here we go, stay really still.
• My eye is itchy. 
• K don’t move.
• Breathe in and out…but don’t move.
• Why is it so cold in here?
• This is almost like being locked up in a casket!
• That was a horrible comparison. Change the subject.
• K I can do this.
• Oh she just talked to me, the next one is 2 minutes.
• K so that means it’s been like 3 minutes so far, almost done.
• I can’t wait to send a picture of the hospital clothes to my friends.
• Was I supposed to tie the gown in the front?
• No, that would make no sense.
• Next round is 3 minutes and she said the machine might move…what does that mean?
• Oh. Kinda like a massage chair!
• Ughgh maybe not.
• So I’m like 8 minutes in by now??
• Oooh this one sounds like a song I’ve heard at the club!
• Dun dun dush dun dun dush dun dun dush.
• Dun dun dush dush dun dush…wait no, that’s not how it goes?
• Are we done yet?
• My eye is itchy. 
• I want to move my legs, maybe I’ll try when she talks next.
• My head…I need to scratch it. Maybe I caught lice from the blanket she put on me.
• Don’t move.
• I wonder if when I swallow it messes anything up.
• I wonder if they can see what I'm thinking of.
• My eye is itchy.
• Oh she’s taking me out! Time for the dye!
• I can move a little!
• Nope, she told me to stay extremely still.
• I hate needles.
• Needle in left arm didn’t hit the vein properly - fuck.
• Now she’s in my right arm.
• Fuck needles.
• Staying still. 
• Why does my arm feel cold?
• Back in the tube. I can do this! She said two more scans!
• Maybe I can fall asleep.
• Nope.
• What if I have to go pee?
• What if I accidentally squeeze the alarm button?
• Omg I should get ice cream after this, I deserve it!
• It’s like -20C out and there’s a foot of snow, ice cream is a bad idea.
• Where did I park again?
• I hope I don't get lost getting out of here.
• How much longer?
• I think I have to pee soon.
• My arm hurts.
• Oh I think it's done!
• Don’t move just in case.
• Smile at the nurse, pretend like you’re fine.
• Whoa this is a completely different nurse.
• I'm so confused.
• Crap, my arm is bleeding.
• I wanna pass out. 
• I should ask for bandaids…for BOTH of my arms.
• Ugh I can’t believe I have holes in both arms.
• Don't fall down.
• Yay I’m free!!
• These pants are kinda comfy, I wonder if I can keep them….

I'm thinking I'll give the MS clinic a call next week to find out if they'll book an appointment to go over my results. And hopefully by the weekend I'll write a real post on an update! So much has happened since my last post!!

What do you usually think of while getting an MRI? Do you fall asleep? Do you hate them the entire time?