It's been a minute...

 I had a post drafted for 2021 that I never finished, so let's do a 2021/2022/2023 quick recap:

2021

• the world is completely back to normal! lol jk
• finished the my first year of Mavenclad - I had the worst back aches, depression, loss of appetite and the worse nausea - the lockdown definitely didn't help, but I was back to "normal" a little over a month later
• monthly bloodwork started (and is still a thing to this day)
• got a promotion at work!
• lost my fur baby - I'm still so heartbroken
• sold my condo & moved back with my parents
• MRI - NO NEW LESIONS!! this meant the crappy feeling was worth it, the meds were working!

2022

• Mavenclad year 2 - week 1 I felt a bit more invincible and didn't take it easy - side effects kicked my butt and I smartened up for week 2 - nauseous, tired, & sore for a month or so after finishing
• borders finally opened!
• got to travel all across Canada - as far West as BC and East to New Brunswick for work
• my best friend asked me to marry him
• my third nephew was born
• MRI - new lesions. ugh
• neuro suggested to do a 3rd year of Mavenclad

2023

• Mavenclad whooped my butt again, but lived through it and was back to normalish a month later
• had two absolutely perfect bridal showers (one in Canada, one in the US)
• transferred my job to the US
• moved to the US
• married the man of my dreams
• honeymooned in the Dominican
• traveled to some pretty cool places for work
• enjoyed a relaxing and yet super busy summer

This brings me to now - September 2023. I think I'm having a relapse. My right thigh started feeling "weird", did a UTI test which showed signs of an infection so I took antibiotic.  A week later, no changes for the better, just for the worst. Both legs started feeling weird, bottom of my feet were tingly, and my ribcage feels so, SO tight. I had just found a MS team here in the US about a month ago so I gave them a call last week when things got really bad (my legs were so restless one night that I just broke down crying and didn't sleep). The MS team suggested to do a few tests before jumping the gun for steroids. To be continued....

Mavenclad!

I should have known that switching DMD's wasn't going to be quick or easy - remember my Aubagio washout and relapse before Tecfidera?  This wasn't any different.

Thankfully there wasn't a washout period but there was a bit of work I needed to do before starting my new medication.  Blood work needed to confirm that my vaccinations were up to date - which I found out that I was not immune to chicken pox! In order to get that vaccine I needed to stop Tecfidera for 1 week and I couldn't start Mavenclad for 6 weeks after the vaccination.  That meant I'd be without any DMD for 7 weeks, which stressed the heck out of me since I had a huge relapse was between DMDs.

During this time off I decided that I should try to control things that trigger my MS so I picked up the Overcoming MS book. I felt that diet was the easiest thing for me to control so I stuck to it for that time! No meat, no dairy, limited fish, plenty of fruits and veggies!

The 7 weeks flew by and I was due to start Mavenclad! I decided to take them after lunch so I could get through the side effects while hanging out on the couch. The first week for me was 8 pills over 5 days.  The first day I was SO nervous to start, I was nauseous before even taking anything.  I finally mustered up the courage to wash my hands and take the first two pills. Easy peasy.  Maybe 30-45 minutes later the side effects kicked in. I just felt unwell. Almost like the beginning of getting a cold.  Drained, headache, sea sick, just a general feeling of blah.  You can't take anything within 3 hours of your treatment so I just set a timer and decided to wait it out.  Saltine crackers and ginger ale were my saviour! By the time the 3 hour timer went off I didn't feel the need to take any Gravol or tylenol.

Days 2-3 were very similar. Day 4 & 5 I just needed to take 1 pill each and the side effects didn't seem as bad.  During the first week I also found I had some really weird, vivid dreams, backaches and headaches that continued on and off.  Plenty of water, an odd Motrin helped this.

And that was it! Week one was done!  I felt great! Until a day or two later, I felt SO nauseous after eating lunch and I tried everything ginger - tea, ale, chews (highly recommend!).  Eventually I discovered that taking a ginger gravol 30 minutes before eating helped.  The next couple of weeks were fine! The odd day I'd get hit with the fatigue stick or nausea but nothing that I couldn't handle.

The 4 weeks between the first pills to the next round of pills came before I knew it and I was at it again! This time it was only 7 pills over 5 days.  Day one went SO well.  I felt completely fine after that I thought I did something wrong! Until dinner time came. Bam! The nausea was back! The days went by quickly, each day came with new symptoms.  A few days after my last pill I had a decent amount of pain and anxiety, yesterday I had no appetite and the horrible MS hug.  But those symptoms pass and I've learned to listen to my body.

Reminder: take it easy.  The days will get better.  It'll all be worth it <3 

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.