Don't tell me what I can't do!!

Ever since I was little I have always done things my own way and in my own time. For example, as a kid if I had made the decision to clean my room on my own I would happily spend hours tidying and organizing, but, if my Mom told me to clean my room, I no longer wanted to!! It also works this way when someone tells me I can't do something! The more I'm told I can't, the more I want to prove that I can!!

Since being diagnosed with MS I sometimes feel like I have even more to prove than I did before, it's almost like I need to prove that I am still capable.....and I know what you're probably thinking, "you don't need to prove yourself to anyone"!! You're right, I don't need to prove myself to anyone. It's not others that I'm proving myself to though, I feel like I need to prove to myself that I am still capable.

The week leading up to me being in the hospital I was still a fairly active person, but after my week stay I left the hospital unable to do a lot of the things I did before. One of the hardest parts of being in the hospital was listening to the people around me talk about all the things I could no longer do.

-No more taekwondo
-No more archery
-No more Santa booth
-No more cleaning and shoveling for seniors
-No more helping the school
-This list could go on forever......

Christmas Eve 2016 at the best job on the planet!!
Approx. 3 months before diagnosis.

Me receiving my green stripe in
taekwondo!!

I know that these things were only said out of concern for me, but, hearing all of the things people thought I should no longer do was worse than being told I have MS! If I couldn't do all the things that made me ME then who was I?!

Everything on the "can't do" list has been done at least once in the last 3 years.
-I never officially went back to taekwondo class but I have completed the basic pattern at home! It was not easy but I can at least say that I have done it.
-I worked 2 more seasons at the Santa booth, thanks to my amazing boss who went above and beyond with accommodations for me
-I cleaned for 1 senior client for a couple of months before we agreed that it was too much for me.
-I have continued to help at the school when I can. It's not on a daily basis like before but I'm there for all special functions to help in any way possible.

January 14th, 2020
I shot my bow for the first time since
being diagnosed!

-I have also shot my bow 10 times! I think I might be more excited about the 10 arrows I shot post diagnosis than any of the ones before!!

Doing these things that people no longer believed I could has been empowering, it has made me realize that even though MS sucks, I don't have to let it run my life. Some days it wins, and I have to learn to be ok with that and rest. Other days I say f*@K you to MS, do what I want and deal with the consequences later!!

MS is hard, and we don't need our loved ones to make it harder, we need support with our decisions to try, we need comfort when we've pushed to hard, and sometimes we need encouragement to keep going!!

Kids are amazing!!

Before being diagnosed with MS I was an active volunteer at my boy's school! I helped in the grade 6 literacy class twice a week, I also helped out during the Smart Friday sessions! Because of always being at the school the kids got used to me being there, and when I didn't return after spring break they had a lot of questions!!

Because I spent so much time in Taylor's grade 6 class it was him that had to deal with most of the questions. At first he didn't mind but after a week or so he became overwhelmed with all of the questions about me!

Taylor showing his presentation at the MS Society.
The pool noodle represents the spine,
and the pieces that are ripped out
show what MS can do to a persons spine!

Luckily there was an amazing school councilor that was more than willing to help my boys deal with all that was happening. Taylor and I decided that the best way to deal with all of the questions was to answer them all at once, and the best way to do that was with a presentation. The school councilor helped Taylor put together a power point to teach all of the grade 6 students about MS!

Taylor and I at the very first MS
Bake sale he hosted!! 

I attended the presentation to help Taylor answer any questions that might come up. During the presentation the entire room was focused on Taylor, I was surprised to see this from this normally rambunctious group. I think that a lot of their focus on the presentation came from the shock of seeing me for the first time since before spring break. I definitely looked different than the last time I had seen any of them, I had lost a lot of weight, I walked with a cane, and getting ready for the day at that point consisted of running a brush through my hair if I was lucky.

Once the presentation was over and it was time for questions the room kind of exploded with voices, the very first question asked was "can we do a fundraiser?" From that point on the presentation turned into a brainstorming session to host "the greatest fundraiser ever."

A wonderful friend spent a lot
of time making these!

Within a couple of weeks of the initial presentation Taylor and his classmates put together a bake sale and toonie drive! Taylor approached the MS Society for help advertising and answering questions from his classmates. The MS Society contacted newspapers, radio and TV stations, and posted about Taylor all over social media.

The bake sale was run during the lunch hour and because we had so much donated baking the sale went on for 2 days!! Students lined the hall waiting to get some sweet treats, it was quite a sight to be seen!! Taylor and his classmates raised $800 with that fundraiser!!

Since the first fundraiser in 2017 my boys have hosted a fundraiser at their school in support of our MS Walk team every year! Taylor is normally in charge of the talking while Braden works behind the scenes on the posters and presentations.

 In 2018 the boys worked together to present to the grade 4 and 7 classes. They both really enjoyed the presentation this year since they incorporated some symptoms into it. We made saran wrapped balls filled with treats, to get the treats out you needed to unwrap  the saran wrap while wearing oven mitts. A lot of the kids got really frustrated trying to get a treat.....that was kinda the point though. The idea of these activities is to show others what it's like dealing with limited motor skills.

Taylor and Braden with their saran wrap ball!

Taylor has since finished his time at this school and has moved on to high school, he is not done with his fundraising efforts though. He plans to ask a local grocery store to help him host a fundraiser this year. (I will post the grocery store once things are decided)

Braden is still attending the school where the presentations began and is continuing with them this year! This year will be a bit different for the presentations since we have a new principal, she has asked that Braden go around to EVERY classroom to teach them something about MS! It's going to be quite the challenge for him but he says he's up to it!!

To date my boys have raised about $2000 with their bake sales! Taylor and Braden are always looking for ways to raise more funds and awareness for the MS Society, and I could not be more proud of them both!!

Because of their efforts, both Taylor and Braden
have earned themselves MS Walk hoodies!

Why Can't I Feel My Feet?!

I can't feel my feet because I have Multiple Sclerosis (https://mssociety.ca/about-ms/what-is-ms) This is the story of my diagnosis!

On March 26th Trevor, Braden, and I went to shoot our bows at the archery range....I had some trouble with my bow that day and ended up getting a kink in my neck by the time I was done shooting. I went about the rest of my day like it was no big deal and took some tylenol before going to bed. The tylenol did not help at all...I woke up the next morning with my right arm asleep. At this point I still thought I had just pinched something in my neck, and didn't think much of it.

I didn't think there was anything seriously wrong so I went about my routine for the day, this included going to taekwondo that evening. While at taekwondo class I had no balance, my arms felt heavy, and I couldn't even do the most basic of moves without falling over. I was beyond frustrated with myself over this since I knew I had a belt test coming up and I just couldn't seem to get it together. For a couple of months leading up to this day I had been struggling in my taekwondo class, but I just blamed it on being too busy and I needed to put more time and effort into it. The more I tried though, the worse I got. March 27th was the very last taekwondo class I participated in.

By March 30th my right arm was still asleep, but I kept on with my schedule, on this day I had an appointment to get my tubes tied. When I arrived at the hospital in the morning I told my nurse and doctor that my arm was asleep, everyone agreed that I had probably just slept funny and it wouldn't be a problem. My surgery went well, the only issue was my reaction to the pain meds. Well, until I got home....

By the time Trevor got me back home I realized that not only was my right arm still asleep but so was my right leg now. I called the surgeon to let him know and ask if I should be concerned. The doctor explained that my legs were left flat while I was on the operating table so there is no reason that he can think of for my leg to now be asleep! I was told to keep an eye on things and to seek help if things got worse.

Trying to feel better by looking
better

At this point I still believed I had just pinched something in my neck while shooting my bow so I pushed on. I had an eye appointment scheduled for my boys and since it was in the middle of a work day I was the only one available to take them. I decided that to feel better I at least needed to try and look better. I did my hair and makeup, found my comfiest maxi skirt so that my recent incision wouldn't get irritated. I looked better, but I definitely did not feel better.

While at the appointment I was so exhausted I could barely stand, I had forms to fill in but I could barely hold the pen. My writing looked like something a 2 year old had done. I didn't even let my boys pick out new glasses after their eye exams, I needed to get home.

On our way home I stopped at my pharmacy and explained what was going on and why I thought it was happening. It was suggested that I try a muscle relaxant, but if anything else fell asleep to go to the doctor.  Well.....I got worse in a matter of minutes. By the time my boys and I got back to the car to go home most of my torso was asleep!! I took my boys home and went straight to the doctor.

The doctor at the walk in clinic agreed that it sounded like I had a pinched nerve somewhere as well as some strained muscles. I was given a pain prescription and sent home.

When I woke up on April 1st I realized that my left foot was now asleep, I sat on my bed and just cried. I was getting scared at this point, but thought I just need to give the meds time to work. Besides it was the day for Taylor's 12th birthday party! We had the birthday party at a local lazer tag place with a ton of stairs....My legs felt like they were on fire by the time the party was done! After the party I rested for the rest of the day hoping to feel better, I didn't though...

I woke up on Sunday April 2nd to my left leg now being completely asleep! Trevor took me back to the walk in clinic, luckily I was able to see the doctor I had seen a day earlier. The doctor strongly believed I needed an MRI but knew the wait time would be crazy so he sent in a referral for a CT Scan.

I woke up Monday morning April 3rd and was beyond scared at what was happening to me, but, as usual I had things to do. It was my boys first day back at school after spring break and they needed to get there, plus I was also a volunteer at the school and I needed to be there that day! Luckily Trevor stayed home with me that day because I was in no condition to be driving.

Trevor drove all of us to the school, I went in with my boys to talk to their teachers and apologize for not being able to help out that day. Taylor's grade 6 teacher at the time thought I was crazy for even coming in to the school to explain myself.....I guess I can't really blame him, I was walking like I had been drinking all night.

Once the boys were dropped off I went to get blood work done that the doctor had requested, then back to the clinic. The doctor was at a loss as to what to do for me and told me that he would try to get me an emergency MRI. I was told to go home and wait for a call, I was told to expect it by noon of that day and to be prepared to go at a moments notice. I never did get a call....

After realizing that I was not going to get an MRI any other way the clinic doctor told me to head straight to emergency!

So, off to the hospital we went.... Normally the wait can be quite long to even see a triage nurse so once Trevor helped me inside I suggested that he move the car. There wasn't much of a wait this time though and when Trevor got up to move the car I was called in, luckily Trevor and the nurse were close by because my legs gave out. It was then that the nurse told me that I would be using a wheelchair until we got things figured out. I was not happy about this at all and tried to walk every chance I got!!

This was my 2nd IV in a week...

I fully expected to be waiting in emergency for hours before being seen, there were at least 3 or 4 people ahead of me. When I was called less than 5 minutes after being in triage I started to realize that this might be serious. There were a ton of tests run on me, the worst of them being the touch tests. Every time someone new would come and check on me they need to see what I could and couldn't feel, to do this they had to touch me, but being touched was painful, everything felt hot and sharp!

After the on call neurologist had a look at me I was admitted to the hospital! This was very hard for me, I hugged my boys that morning and said I would see them after school....I did not see them after school that day!

I was in the hospital from April 3-7, 2017. While there I had multiple MRI's, but it was after only the first one that I was told I have Multiple Sclerosis,! The neurologist that was seeing me told me that she was confident that even after only 1 MRI she believed I had MS. She told me we would confirm it with a 2nd MRI the next day, which we did! From there I was referred to a neurologist that specializes in MS.

My new neurologist wasn't so quick to diagnose even though there are past medical things that also point to MS. She didn't outright say "you don't have MS" but she did tell me about CIS (clinically isolated syndrome) which is basically a 1 time only MS event. Her reasoning for this even though I had other things that pointed to MS is because when I had my other health issues there were never any MRI's done to see what was happening to my brain.

Whether it was MS or CIS it didn't really matter, the treatment was the same. I was on IV steroids for 5 days. I couldn't walk at all for at least 2 days, I could barely feed myself, showering was a new form of torture, but the ABSOLUTE worst part of it all was spending Taylor's 12th birthday in the hospital!!

Luckily my sister-in-law is a hair dresser
and washed and did my hair for the day!

Luckily Taylor's birthday landed on day 4 and I was doing a bit better. I was given a day pass so I could be with him for his birthday (even writing this 3 years later has me in tears) My sister-in-law picked up a wheelchair for me to use while out, my other sister-in-law washed and dried my hair for me since showering is a new form of hell, a dear friend who had an amazing bakery at the time just happened to be set up to sell at the hospital to sell that day and had made a special cake just for Taylor because she knew I couldn't.

I spent most of the day just resting on the couch. Trevor brought the boys home early from school and I was able to surprise him with his cake! Even though I couldn't do much I was just happy to be right where I was. After dinner Trevor loaded me in to car so I could go watch them in taekwondo class, birthdays that land on taekwondo days are kind of a big deal. I loved watching Taylor break his birthday board!

It was back to the hospital for me after that, I had 1 more dose of steroids to take in the morning and then I could go home for good! I was glad for that, I really didn't want to spend my birthday in the hospital too! Besides, I share a birthday with my niece and I had a party to attend!

The day I was discharged from the hospital was the day that I learned that my body may never feel normal again. I was told that symptoms that last longer that 6 months are most likely permanent. The symptoms I am left with are pins and needles (mostly in my limbs), my feet feel like there so cold they're burning, poor balance, body fatigue, heat/cold intolerance, and many more, these are just the EVERY day symptoms!