Ocrevus & Crap Gap

I began getting Ocrevus infusions every 6 months in November of 2020. My first dose was split in to 2 parts to make it easier for my body to tolerate (this is common practice), and my first full dose was in May of 2021.

Ocrevus works by lowering your immune system in turn making it so your immune system shouldn't attack the white matter in your brain and spine as much. Your immune system is typically at it's lowest about 30 days after the infusion, and will slowly rebuild over the next 5 months.

To be honest, being on Ocrevus is a bit of a rollercoaster.....I don't really like rollercoasters (ask my Aunt, I screamed the ENTIRE time. She couldn't help but laugh ate me) but I can handle this one. Let me explain my Ocrevus process to help you understand.

The day of my infusion I need my husband to take the day off work to drive and take care of me. About 30 minutes before infusion time I need to take ondansatron (anti-nausea med), once at the clinic I am given tylenol, gravol, benadryl, and steroids before the Ocrevus can be started. 

During the infusion process I feel alright, it doesn't take long after though for me to start feeling AWFUL. The best way I can think to describe it is, imagine your worst hangover ever, along with morning sickness, topped with a migraine, and the flu!

It is NOT a pleasant experience at all, but in my opinion it is definitely WORTH IT!

Luckily once I've slept and get up the next day I am feeling MUCH better!!

Once the worst of infusion day is over with I can start enjoying the benefits of the Ocrevus. For me the benefits include less extreme pins and needles, less exhaustion, less spasms, less plain.....a lot of my symptoms become less.

They don't EVER go away completely and I've learned to accept that for the most part, but less severe symptoms is very much welcomed in my world!

With my most recent dose of Ocrevus being in November of 2021 I'm about a month and a half into enjoying the benefits of my infusion. This also means that I'm about 3-4 months out from dealing with "Ocrevus Crap Gap".

What is crap gap?! Crap gap is a term used by MS patients to describe how they're feeling in the last moth or 2 leading up to their next infusion. If you recall, I explained that Ocrevus works by lowering the immune system so that it can't attack the white matter as effectively, and that it slowly rebuilds over 5-6 moths. Well, as the immune system gets stronger so to do the MS symptoms, meaning that the closer to infusion day I get the worse my symptoms get.

While Ocrevus can be quite the rollercoaster I strongly believe it has improved my quality of life, and is absolutely the right treatment option for me at this time *I haven't had ANY new lesions since starting Ocrevus*

Please discuss all of your treatment options with your medical team. This is my personal experience only.

My One Thing!

 This blog takes us all the way back to 2004.....that's when I met my best friend!! If you haven't guessed yet, this one is all about my favourite person, my husband Trevor!

This photo is from 2006

Trevor and I met at a house party that my brother's friend's were having in the winter of 2003. I didn't really interact much with Trevor on that night but did invite him to a future party that I was having. Trevor and his friend showed up for my party which was sometime around Christmas and New Years.....no I didn't start dating him at this point either......don't ask too many questions, just know I was 18 and probably not making the best of choices.

In early February I begged a mutual friend for Trevor's number so I could ask him to come hang out with me and watch some movies. It happened to be the coldest week of the year at that time and Trevor lived out on a farm, meaning he had a bit of a drive to get to me. He even ended up putting his truck in the ditch on the way to my place, that didn't stop him from coming to see me though.

We spent that first night watching my favourite movies, hanging out in my apartment. When Trevor went to leave (he had to work in the morning) his truck would not start, it was frozen solid and he had killed the battery trying to start it too many times.

Trevor did not go home that night...... We spent the next week cuddling and sleeping on my couch.

Towards the end of the week his truck got fixed and he was able to leave, he didn't go very far though. 

On February 8, 2004  after a night out with friends I asked Trevor if he wanted to be my boyfriend. His response was less than awesome at the time.....He actually seemed annoyed with me and told me "no, this isn't how it works" I was very confused....he then asked me to be his girlfriend.

Shortly after we started dating and while Trevor was working away I got sick...with what depends on which Dr. you talk to. Some doctors believe it may have been the start of my MS but without an MRI from that time there is no way to know for sure. 

After being admitted to hospital I let Trevor know what was happening and that I'd be ok. He was working away at this point and I didn't want him to worry.....besides we hadn't been together that long, I didn't want him seeing me like that. So, I told him not to come back and that I would see him on the weekend when he was supposed to be back, we talked on the phone for quite a while and I never suspected anything weird was going on, that was until Trevor walked in to my hospital room late at night. He had talked to me on his cell phone for over an hour while he left work to come see me.

It was then I decided he was mine to keep, and from that point on we have never been away from each other more than a night or 2 at a time.

That is until very recently....when Trevor took on a new work adventure that takes him out of province for over a week at a time.

I know, there are a lot of families that function like this and I am very happy that it works for them. This however, is not what we're used to. Trevor has always been very protective of me and always concerned about my health. So while him being away is hard on all of us, I know it's especially hard on him not being around for me when I'm tired or not feeling great.

Trevor being away isn't just emotionally hard on all of us, it can also be physically very hard for me. For the most part I don't require a lot of assistance, I'm pretty independent. I do however struggle with exhaustion which can complicate some things, and I also really struggle with showering.

With the exhaustion it can cause nausea, pain to be more noticeable, irritability....none of these things are a good mix when you're the only parent home with teen boys. I try very hard to pace myself through the day so as not to be too exhausted by the time I pick them up from school. It doesn't always go as planned though. Luckily they're very understanding, and for the most part we don't have too many issues.

As for the showering part of things.....well, there are MANY reasons why showering is difficult for me. Luckily one of the problems was solved with my shower bench that a local vendor made for me, that was the easy to fix problem though. 

Showering for me is almost like torture from beginning to end. It starts with even trying to get in the shower, with my bench I can sit a lift my legs in, then I need to get used to the temperature difference, the water feels sharp and painful (even though Trevor says our water pressure is terrible), washing my hair is like running my hands through a cactus, I can no longer us a loofah and sometimes even my sponge or wash cloth hurt. Getting out of the shower usually involves multiple towels so I stay as covered as possible to try and stay warm, I usually struggle to talk because my neck and throat tense up, I get terrible spasms in my feet and legs, my toes curl to the point that the skin on my toe knuckles feels like it could split open, I shiver uncontrollably, and all of this can cause even more exhaustion resulting in MORE nausea.

Even before I was officially diagnosed with MS Trevor was my protector and he's been my best friend since our first movie night that lasted a whole week. He has always gone along with my crazy ideas, always done whatever he need to for me and our boys, and for that he'll always be my one thing! (click the link if you'd like to hear "our song". It was the first song we ever danced to on the night we officially started dating as well as our first dance song at our wedding.)

MS can cause anxiety, COVID doesn’t help!

It’s been a while since my last blog post… I really have no reason to not be posting, I’m at home basically all day EVERY day so it’s definitely not due yo lack of time. I just haven’t been very motivated to do it and tend to just do whatever will keep my mind busy for the day so I don’t stress and worry about all things COVID. But, now with numbers going own in my area as well as me being fully vaccinated and my family well on their way to being fully vaccinated my anxiety has lessened a bit and I want to get back to writing more.

Since my last post there have been some changes to my MS which I will get into in my next post. For now I’m going to talk about COVID anxiety and how it’s affected me over the last year……

About 10 months ago I went to my family Dr. (Family Drs are a whole other blog post, look for it in coming weeks) to discuss some anxiety I was having. It was the type of anxiety that would keep me awake ALL night, and leave me stressed ALL day.

The things I am anxious about vary from day to day, and not all of it is about COVID but a lot of it is. Not necessarily in the way you might think though.

Yes, getting sick makes me nervous but that’s not the bulk of my anxiety. 

My anxiety is coming from family and the people around me who think this last year has been nothing but a joke, and that following the rules makes me a sheep. 

My anxiety comes from having told/asked family and friends for the past 4 years to please respect my health and stay away from me when sick and them not listening. It literally took a global pandemic for people to realize I was serious. (I should also add that long before I was ever diagnosed with MS and was expected somewhere and happened to not feel well I would call whoever I was supposed to be with and give them the option to be around me while ill or not. I thought it was common courtesy….I guess not)

My anxiety comes from my husband going to work and knowing that people he works with are being unsafe and then in close contact with him.

My anxiety comes from having to tell my boys “no” because it’s the safe (and legal) choice while the people around them are going on with life normally.

My anxiety comes from family supporting anti-COVID and anti-mask rallies and then expecting to be a part of or lives like nothing is wrong.

My anxiety comes from people thinking that my mental health doesn’t matter as much as those that are defying regulations in the name of “mental health” …..I feel I should explain this one a bit. At the beginning of the pandemic we were encouraged to look the other way if someone wasn’t exactly following guidelines because “you never know what someone else is dealing with” and maybe they just needed to be  around people to feel better. That’s 100% fine with me. However when I reached out saying that people close to me defying regulations was affecting my mental health I was laughed at and called a sheep.

**Side note** even typing this is making me anxious 😬 

I could give you many more anxiety inducing situations but, I’m sure I’ve already pissed several people off with just the examples I’ve given so far.

So, what do I do about this anxiety?! Well my Dr has prescribed an anti anxiety med for me that I take daily, my husband has gotten better about hearing me out rather than just dismissing my worries (he used to just tell me that it would be ok without really paying attention to what the worry was), and before going into anything we make a plan as a family.

For example, my family and I have been discussing our summer plans and how we want summer to look for us. My boys want to be able to spend time with their friends, we all want to go camping, and I just want to get outside more. 

For this summer to be everything we all want we have some plans….some are easier to execute than others though. 

For my boys and their friends we’ve basically got that figured out. Each of my boys have 1 really good friend, both of which have been being cautious this last year and have been following guidelines, as well as my older son’s girlfriend who has also been extra careful. For this situation we’re basically following school guidelines (if feeling unwell stay home)

For the getting outside more I just need to do it…. My reason/excuse for not is because I always feel guilty asking for help to load/unload my power scooter. Now that it’s nicer weather out I hope to actually start going for small walks on my own around my neighbourhood.

Now for the camping….normally we camp with both sides of our family a couple of times each summer, and last year was no exception. To do this my husband and I let our families know what we were comfortable with and asked our families what they thought. We explained that if they thought out requests (we were following AHS guidelines at the time. No shared food, washing hands, not sitting too close to other households) were too much to let us know and we would not participate and would find something else for our family to do. While everyone technically agreed there was definitely tension among everyone else and us. I was very often made to feel like this was all be done for me and ONLY me🙄

We do plan to camp with both sides of our family again this year but will be asking everyone to follow the same guidelines as last summer. The reason for this is like I said before we have family from both sides that have blatantly ignored COVID restrictions and this is what we feel is safest for us. In our opinion the only other solution is to completely avoid those people and the people around them until COVID is basically gone. Yes, I know it will always be here but hopefully with enough people doing the right thing it will be far less of a problem.

**Yup, still feeling anxious **

My hope is that I continue to manage my anxiety as well as I am now and that my family and I have enjoyable summer however that looks!

     

MRI Update

 As you know I had an MRI a couple of weeks ago. The MRI itself is never really an issue for me, in all honesty I fall asleep most of the time in there! For me, the worst part of an MRI is waiting to hear from my neurologist about the results.

I don't really know why I get nervous, it's not like it's a surprise about what's going on in my brain and spine. It never fails though, I am always nervous to hear my MRI reports.

Well, today was that day! I got the call from my neurologist, as soon as I noticed the number on my phone I thought I would be sick!! I've known since the spring that something wasn't quite right and that my body was unhappy again. I'd like to think I was prepared for bad news, but clearly my nerves were not.

My neurologist explained that I have 2 new lesions in my brain. She was hopeful that with the location of them that they wouldn't cause too many issues for me. However after talking with her a bit more and figuring out a timeline for when the tremors in my arm and throat started, we believe that these new lesions are in fact the cause of this fun new symptom. 

Hopefully since the lesions are no longer active the tremors will subside a bit, if not, I guess I will learn to live with them.

So, I guess technically I wasn't told anything that I hadn't already assumed. It's just never fun to hear that more of your brain has diminished.

After we were finished with the MRI report we discussed my DMT (disease modifying therapy). No matter what I knew that today would be the day to discuss a med switch due to government health plan policies. We discussed taking my off of Copaxone and putting me on the biosimilar, Glatect. Before I agreed to the switch though I had to let her know some of the issues I've been having with Copaxone. Issues include extreme joint pain lasting hours, burning in my skin that can't be soothed, large welts lasting days...... and the list goes on. 

Because of these issues my neurologist believes that my body is not tolerating the drug anymore and it's time to switch. Switching DMTs scares me more than waiting for my MRI results, there are so many variables to consider, 

The last time I had to consider what DMT to take was at my diagnosis, I chose the one I'm currently on because I believed I could handle the side effects of it the best. Some of my other options have some possible side effects that I'm not sure I could handle.....

So hear I sit, waiting for a call to discuss my options...

FOMO, not for me but for my family!

 A while ago I read a blog about FOMO! At first I had no clue what this even meant, but I soon learned it stands for Fear Of Missing Out.

I'll admit, missing out on things definitely sucks, but I'd say my FOMO isn't mainly directed at myself, my FOMO is directed at my husband and 2 boys. I absolutely HATE the thought of them missing out on something just because I can't do it. Now I know what you're thinking, let them go on without you.....trust me I try to encourage them to do things without me, but if you've ever met Trevor you know that to him, leaving me behind is not an option. (I'm working on this with him)

My biggest struggle with FOMO is when it comes to family functions now that COVID-19 is in play....

I want nothing more than for my boys to be able to hang out with their cousins and extended family, I would love nothing more than to hug my nieces (my nephew's not a hugger, neither am I actually....I like niece hugs though)

and sit side by side with Zoe and read her Momo the monkey book (it's a book I got my one niece for Christmas a few years ago) Unfortunately though, my neurologist believes I have been having a flair up since early spring and has advised me to be extra  cautious (she says she would've advised this whether COVID was a thing or not) to avoid catching anything. Her concern with me is that every time I come down with something I get a new symptom, and unfortunately they don't go away....so much for relapsing remitting, I seem to do more relapsing than remitting.

Now with holidays coming up my FOMO for my family is the worst it's ever been....

Since March we have had very limited contact with people, we've camped with both sides of the family separately over the summer (with sanitizing and physical distancing),

my mother-in-law has been by twice, and my oldest son has ONE friend that he hangs out with outside of school, and we have a friend that also works with Trevor that comes around. Other than that, we have basically stayed in our bubble.

So to all of the sudden try to make holiday plans that work for EVERYBODY has been a little difficult!!

It's difficult to plan things with my family as my nieces live with their mom's and spend weekends with my brother who lives with my Mom, who works in the hospital. The reason this is difficult is that there are so many households involved and they don't all hold the same views on how to handle the current COVID situation, as well as my Mom working in the hospital.

As for my husband's family, again there are all differing views on this situation as a whole, as well as there are people from regions that are more affected by COVID than the region I am in that we would like to invite. Unfortunately inviting them, automatically makes it a no go for me (remember the whole being extra cautious thing?)

I hate that it's an either me or them situation (This is on all sides, not just one particular situation)

I hate that I feel like I have to set "rules" to be around family, I'm sure they hate it too...

I hate the way this whole situation (not people, the situation) is making me feel (disposable, less than, lonely)

I hate EVERYTHING about situation

I do know that one way or another my family will be having a Thanksgiving/Christmas dinner with all the trimmings (minus cranberries, they're yucky) whether that's with extended family or not I'm not sure yet. I'm hopeful that we will come up with a solution that makes everyone feel welcomed, loved, and safe. I don't know what that looks like but I'm not giving up quite yet.

I'd like to add that I know there is no perfect solution and everyone is trying to do their best given the current situation.

Saving now, for later.

I'm just going to start this off by saying I am NOT a financial advisor and to be honest most days I could probably spend my money a little more wisely....especially when it comes to craft supplies.

But, I do have a friend who loves to learn about finances and all things money related!! Dave is one of those guys that is always learning something new and recently he took some courses on life insurance and setting up investments (RRSP's, RESP's , RDSP's....) in between his 2 day jobs. One of his day jobs is working with Trevor doing stone masonry and of course while working him and Trevor got talking about life insurance and whether or not I have any savings for the future.....

Now, Dave has come to me with A LOT of different ideas over the years, and if I'm being honest I only met with him about it all so he would stop talking about it...shhh, don't tell him that. 

Trevor and I did have previous life insurance/investment plan but once we got looking into it more it wasn't really what we were needing. After talking with Dave and going over some numbers I agreed to apply with the new life insurance company. I expected to be turned down or to have to pay a crazy amount to be insured. I was pleasantly surprised to learn though that I was only at a level 2 , meaning I wasn't a big risk to insure!!

Once the insurance was all done it was time to move on to my savings/investments. Now, I'm sure RDSP's (registered Disability Savings Plan) were mentioned to me shortly after being diagnosed with MS but like most things that were explained to me around that time I don't really remember. It was more than likely something I didn't want to talk about because it had the word "disability" in it.....

Before I jumped on board I did some research about what I was agreeing to. While googling I came across the RDSP calculator on the Government of Canada website. On the website you will read about all of the grants and bonds that you can also apply for.

Now, I know you can register for these accounts through most banks, I however prefer the ease of someone coming to me and discussing things in my home. I knew that I wasn't about to get talked in to things I didn't need going this way (line's of credit, credit cards....you know the typical things banks try to sell)

Anyways, Dave got me all registered with my RDSP, and I've made my first deposit (I opted to not do monthly payments, but rather contribute by cheque when I have extra funds) Since making my first deposit my account has more than tripled due to the grants, bonds, and interest!

I know I can't touch this money for about 10 years, but knowing that there is money put away and that I won't be a complete drain on my husband financially is a huge relief.

Like I said from the start I am not a financial advisor, but if you would like to learn more about what we've done to help our family for the future I'd be happy to point you in Dave's direction for some support.

Yearly Neurologist Visit

Today I had my annual neurologist appointment.....it was definitely interesting!! When I first arrived at the hospital (the MS clinic is inside the hospital) I thought I was going to to be late for my appointment, the lot I normally park in was full so I needed to park in the parkade. This wouldn't normally be too much of an issue other than the fact that I only had 30 minutes to get to my appointment.....parking in the parkade means farther for me to walk, and I am not good at walking quickly. 

Anyways....I made it to the hospital doors only to find a line up of people waiting to get in, I though for sure I would be late now!! Luckily the line moved quickly and I was able to will my legs to walk at a decent pace once I got through the COVID-19 screening. I made it to my appointment with 5 minutes to spare, YAY me! My feet and legs were on fire but I wasn't late!!

I was feeling pretty confident going in to my appointment in regards to my progression (I knew I needed to talk to her about bladder issues but that wasn't really anything new, I had just put it off), I don't really notice if I've gotten weaker or things like that, I do my best to just go about my days the best I can and try not to focus on that stuff too much. Well, today I learned that I am substantially more weak than I was a year ago, and my balance is atrocious.

One of my main concerns going into this appointment was about having to change my DMT from Copaxone to Galtect.....I know they are similar to each other but it still makes me nervous! I learned today that I am NOT being switched right now. Don't get to excited for me though, I'm not staying on it for the reasons you might think. I'm being kept on Copaxone until I can have another set of MRI's done. My Dr. is concerned that I may have new lesions or may be having/have had another relapse.

Basically she is concerned that my wonderful new symptom of night tremors could be a sign that something is happening in my brain and spine again. These tremors aren't like having the coffee shakes...these feel like there is an earthquake inside my body.  The first time it happened it woke me from my sleep, it was awful! This has been going on for about 4 weeks now, and according to my Dr. it is concerning and need to be looked at

I also finally mentioned my bladder issues....basically my brain and bladder don't get along. My problems are worse at night or when I am tired. My bladder often feels the need to go even though I actually don't need to empty my bladder....I can go to the bathroom 4-5 times in an hour and most of those times I don't actually need to empty my bladder. During the day this isn't really a huge issue, I can manage that fairly easily. At night however, it is really affecting my sleep.....and if you know anything about MS you know that rest is crucial. I finally decided it was time to ask for help with this issue because dealing with tremors and a crappy bladder was getting to be too much.

Today is also the very first time that I actually seen any of my MRI's! I've always known that I have 2 lesions in my upper spine, but I have never been told how many I have in my brain. My Dr. explained that they basically stop counting after 3....well she pulled them up to look at together, I stopped counting after 10!! 10 is a HUGE number when talking about flaws in my brain.....I may have been better off not knowing that number!

On the bright side of this rather dreary appointment I was given the go ahead to go camping with extended family as long as I'm smart about it. No hugs/kisses, no sharing of food, lots of hand washing, and sanitizing high touch surfaces often, as well as physical distancing.