June 16th

It’s almost been a month since I last wrote something! I have been very busy with school and just life in general the thought of writing sounded exhausting. I am officially graduating and DONE high-school in 11 days. The count-down is on.

Next week I go to school Monday and Tuesday then my exams are on Thursday and Friday. My graduation is on ¬†June 27th at Glad Tidings Church. I am allowed as many people as I want at my ceremony since the church is big and my class is smaller. I am SO thankful for my friends and family that have planned to come and I am even more thankful for the ones flying out-of-town to see me. It’s strange, the people who you don’t expect show up and vise versa.

I went back to Physio on Tuesday and I went back on the treadmill. I noticed that my mobility was better and I was able to walk more confidently. My confidence still needs to get better as I feel like I need to hang on to something (even my moms pinky which is not going to save me). Today something exciting happened though. I walked without holding onto anything since my treatment. Something is happening.

My exam next week is in Biology. My other is a redue for my English exam. Although I already have what I need and got accepted in to college I want to take it again (people think I am crazy). I can’t stand to see the mark I got on the exam sitting on my transcript (I had a fever and was popping Tylenol that day). That is my A-type personality kicking in.

“This week coming up is my last week of high school. If you haven’t seen my Facebook posts you may not have known that. I am feeling sad to leave my friends and teachers but happy to experience life and start my journey in the “real world”. I posted this on June 12th:

“My last ever yearbook.

What a year; my life has been a crazy rollarcoaster.

I honestly can’t even thank everyone but to my ladies Jessica Shook, Anna Eunha Koo, Rachel Hollett, Hannah Marie Benischek, Esther Yoo and Diana Peraza. All of our times together are unforgettable. I will miss you everyday. Bless y’all for being just flipping amazingūüíě

Plus my girl Alexandrea Delos Reyes for being the realest hoe I know. I love you to the moon and back. You have been their through everything and you have shown me true friendship. You never failed to stick up for me, and I love you SO much for that. You are beautiful in and out. I am going to miss you so muchūüė≠

Connor Jones for being my CJ, Dale MacDonell for being my gangsta, Ty Birrell for being my person to go to when I need to smile, Dawit Weldemichael for being the bestest friend, Marino Chen for being the sweetest, Jordan MacDougall for being my movie partner, Sheldon Schonert for a memorable late night drive, Amelia Charles for always waiting for my slow ass after class and all our memories, Robbie Deacon, Brook Boice, Kobey Bryant, Ben Hill, Rachelle Easton, Will Bryant, Thomas Copland, Jordyn Slofstra-Calabrigo….

If I forgot anyone I am sorry, LETS KILL THIS LAST WEEK OF HIGH-SCHOOL!”

Until next time, Kiera, xoxo

May 26th (POST LEMTRADA)

WOW! I feel as if I have said this a million times but I have not written in a long time! A lot has happened since the last time I blabed on here! I am now officially a Lemmie! After a week of 12 hrs sleeps, then almost a week of none I feel so drained!

This week I started attending school again, I feel I have already missed so much I had to go back this week. I was telling my parents I wasn’t getting cabin fever I was getting “Jerry and Susan fever”. The week at home was long and exhausting¬†but it was a week I needed at home although I was going crazy.

This weekend is the MS Walk. I am very excited but also nervous, I mean what can you expect? I will be speaking at around 1:30 and the walk starts at 2:00. Check in although opens at 12:30. Anywhere along Beach Drive can be used for parking but as I was told it is FAIR GAME…yikes! There will be a decision to walk 3 or 6 km but I have a wheelchair for this weekend so I am chill on whatever and wherever people take me.

The shirts came in! For those of you who haven’t seen it my mom posted a photo. They are on there way to PG and I am PRAYING like a mad woman they will make it there on time.

Today I went to help with T-shirt sales at the school and dang that was a lot for my brain LOL! People talking left and right, giving money, taking shirts, just talking to me while 10 others are asking questions. PEEWF! All I want to say though is THANK YOU to everyone for the support and LOVE and even just “holding the door for me”, you have NO IDEA how thankful I am.

This week in my Biology class we are learning about the Central Nervous System, so honestly it was THE PERFECT week to come back. I find it SO interesting. I mean, again, what can you expect? It is honestly everything that is happening in my body, and I also am  learning where it goes wrong.

Long time no talk, Kiera xoxo

 

LEMTRADA 5 (and next day)

Yesterday morning I woke up with a rash/hives all over my face and arms. It was like I was having a very bad breakout. I took Benadryl and it went away.

Yesterday was my last day. My nurse didn’t want me to have ANY visitors but I still had some. I got out of my room and went and sat in the lobby because no one was allowed in the room and she was pissing me off (I was probably pissing her off too). If you know me at all you know I need to see other people or I will go mentally insane. Personally I think it should be the patients decision. They are the ones sitting there all day and they know their body the best.

Despite all my anger I do want to thank my nurse for putting up with me for 5 days and taking out that DAMN IV! The IV was starting to get very annoying let me tell you! That was the best feeling getting it out. I am not sure if it was the steroids or just pure excitement but there were a lot of tears. IT WAS OVER!

Next year I will have another 3 days of Lemtrada to reinforce everything, but to think in TOTAL I am over half way thrills me.

By the time my visitors had gone there was another patient in a chair and she was incredible. Hearing a bit of her daughters (MS) story was inspirational. If you are reading this, it was a joy meeting, thank you for sharing, and I hope our paths cross again!

Last night I had a 12 hr sleep and dispite all that time I still wanted to sleep when I woke up. I have been communicating with fellow Lemtrada patients and they said tiredness can last from 1week-1 month, so I am hopeful that I will be okay soon because I am so young.

I have noticed that I am able to take bigger steps more confidently. Maybe you don’t notice but I sure do (FYI Ty and Dale when you saw me that was a horrid day I was embarassed LOL!).

Considering I just had an intense treatment I am doing pretty good today! No fever, hives etc. The only thing I am noticing more is my optic neuritis. I am very hopeful that will improve with time. I mean it’s only day 1 right?!

Prayers are much appreciated still, for this treatment TO HEAL and this treatment TO WORK!

Kiera, xoxo

PS My blogs have been shorter because I am just too tired to write…

LEMTRADA 4

Well today was the day I have been “waiting for”. The shitty day.

So my day at the clinic was pretty successful. I had 6 visitors today and my dog, Jack, got to come. He was a very well-behaved baby all day and sat in the chair right beside me keeping me company for when I didn’t have someone there.

All day my face has been flushed red with small hives. It looks like I have done a very bad blush job all over my face. I have been taking Benadryl but that doesn’t seem to be working.

By the time I got home my face started to swell and I have hives on my cheeks. Because I took a Benadryl at the clinic before I left I need to wait until 8 pm to take another (FOREVER). I am itchy and tired and just want a break.

My nurse has been so kind all week but today something changed. Maybe I am getting angry because I am 17 years old and I have to sit in a chair for 5 days, maybe it’s because I am tired, who knows, BUT TODAY my nurse wanted me to have NO VISITORS. Like um excuse me? Would you like to be 17 sitting in a chair all day!? Trust me I had my little temper tantrum earlier today, I have calmed down a lot.

If you would like to visit tomorrow please text me or my mom 1st! NO PROMISES.

Today was my 1st day without steroids (so no protection) so this is why I could be getting hives. I only have 1 day left so please PRAY.

Kiera, xoxo

 

LEMTRADA 3

Over half way done this week!!

Today was probably one of my hardest days so far. This morning I started off with steroids and it was the most intense pain I have ever felt. The nurse said my vein was agitated so she switched my tube. Honestly they couldn’t get it out fast enough. After that my chest started to feel heavy again so they loaded me up with Tylenol and Benadryl. Now the pain has subsided and I am hoping it will stay like this for the rest of my days. Another thing today was I could not stop coughing. So more Benadryl and I was good to go.

Today my MS nurse came to visit me! It was so good to see her but at first they almost weren’t going to let her in because it was so busy! Tomorrow is only supposed to be me so I am hoping for visitors!

I have been extremely tired today but I have not been able to fall asleep! It was so funny today my nurse was checking my temp and I had my eyes closed and I freaked out because I thought it was a bug! Did I mention they check my blood pressure and temp about every 15 mins! I am getting so used to having my arm squeezed I might just do it for fun now at home!

I always bring tons of things to do while I am sitting there but I always feel as if I get nothing done! As ironic as it sounds I feel like sitting in that chair for 8 hrs is enough work in itself! It’s like I can’t even look at a piece of paper with words because it just looks like BLAH and scribbles to me.

Can you believe I have already used up $60 000 in the last few days, WOW. Each drop counts and boy do they make sure every drop is in me!

I am heading to bed!

Kiera, xoxo

LEMTRADA 2

So the steroids I am on protect my body from having a reaction, but they also keep me wide awake. Although I am feeling half asleep, I also feel like I am going to go jump off the walls. My sleeping pills aren’t working so probably only got a few hours of sleep last night.

Besides all that is happening I feel pretty good. Today I didn’t feel nauseous or spike a fever but I did feel a tightness in my chest when I took deep breaths. Thank you for all your prayers, what I am dealing with I can live with! God is rocking and rolling.

Today I had 3 friends from school come and visit. Every single person that came blessed me. I feel so thankful to have made these connections. Thank you for praying for me and just showing me love and friendship. Words can’t express my gratitude. Things like this make my day go by so much quicker.

OH also my dad brought me a jusu smoothie bowl and it was AMAZINGG! Much appreciation! And always want to thank my mom for chilling out with me all day. Do I even need to say it?

Today my nurse, mom, and I watched the video I made from PCS and we were all crying. My nurse is so kind and is now more aware of my story and is praying for success! There is a blessing  in every storm.

1 more day of steroids then just¬†lemtrada¬†on Thursday and Friday. ¬†I get to start my infusions at 9:30 rather than 7:30!! Let me repeat 9:30! An extra 2 hrs means the world especially when you aren’t falling asleep until 2 am!

Jack gets to come with me on Thursday!! This morning he was trying to jump in the car because he didn’t want us to leave again! My baby boy! I can’t wait until Thursday!!

Until tomorrow again! Kiera, xoxo

LEMTRADA 1

Today is day 1! I woke up at 6:30am to get to “Vital Health Pharmacy” at 8 ¬†am, which is downtown. If you know me at all you know I like to sleep until 11 or 12, so 6:30 seems like a death sentence.

What can I say so far? Well I have had steroids which taste like SHIT, and then I started my Lemtrada. I have been very much relying on candies because the taste in my mouth is grosss! I am not sure if the side effects effect you right of way but I have had none! Your prayers are working!

We ordered the T-shirts today so thank you to everyone who got one or even made a donation or even just sent me a message!

I am looking for nominees for someone to come visit me so hit me up if you can! I will be here 5 days 8-5 then at home for another week! Trust me I need all the company I can get rn. Except keep in mind only 1 person is allowed in the room at a time unless my mom leaves but please message me!

Last night my phone stopped charging and it is down to 2% so unless I figure something out (which I might because I have all day) I will be very slow at responding to snaps etc.

My nurse has been extremely kind and has also given me a new perspective on how Lemtrada works. If you have a box of smarties and they represent cells and you take out all the red cells/smarties (bad cells) and smash them that is what Lemtrada does. It is smashing all your bad cells. But since you have all those tiny bad particles floating around they can cause an infection. SO IF YOU ARE SICK DON’T COME NEAR ME LOL!

Until tomorrow,

Kiera xoxo

April 28th

IT IS FRIDAY!

My LEMTRADA is BOOKED! It has been booked to start on May 8th. SO not as good as May 1st but not as bad as May 15th. God has worked his magic though. Although I am going through a crappy time some amazing things have sprouted. At school I have had a teacher (and PCS!) reach out to me and want to help with fundraising for the MS Walk, They have ordered pins to sell by donation and have been GIVEN 100 t-shirts that will sell for about 5-10 dollars (I will make sure everyone who has DONATED under “Kiera’s Soldiers (MS is BS)” will have one). The school also wants to make a video to show support. I have had friends reach out to help organize this and we are hoping the video will be ready by May 8th (my 1st day of LEMTRADA)

 

I have had many questions about MS so here is a refresher of what it is:

By definition it involves damage to the sheaths of nerve cells in the brain and spinal cord. When this happens symptoms may include numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue.

You pretty much have a cell with a protective covering and that covering comes off because an MS persons body is stupid and thinks the protection is yummy and it eats the protection (for the boys imagine like a condom coming off, therefore you have no protection HAHA). When that covering comes off you become weak in that area. I have lesions on the back part of my brain (cerebellum) causing me to lose balance (that part of your brain controls your gait). I HOPE THIS IS MAKING SENSE! Your MS get’s worse when you get too hot (EH HOMEOSTASIS BIO 12), when you have too much stress, when you have a bad sleep, and when you are in big crowds (that’s what I have noticed).

 

What does LEMTRADA do?

By definition it works by killing immune cells (lymphocytes or white blood cells) which are involved when the immune system attacks myelin. It is thought that the cells which grow back after treatment do not cause damage to nerves.

Pretty much what eats the protection over your cells is killed so your cells can build the protection back. Once the protection builds back your body re-makes these cells and these new cells do not eat the protection.

 

I have been connecting with long-lost friends still! Each moment is a gift.

Kiera, xoxo

Philippians 4:13

I can do all this through him who gives me strength.

 

 

April 22

Yesterday was the most frustrating day.

We have been working very hard to get the coverage for my LEMTRADA treatment, but obviously others haven’t?? I was told May 1st was the week I would be doing it, but now I guess things have changed. The EARLIEST week they think will be the week of May 15th. I am not quite sure why they never informed me about this? Apparently the week I requested is now May 15th? Guess what people, I am graduating this year and it takes you about 2 months to feel better, so no I never requested that day, don’t put words in my mouth (guess things never change). It is so hard for me to believe our health care system is one of the best, and I feel guilty complaining but please ensure me and tell me I have a good reason. This is my life they are messing with. If I am doing this I want to start now or after grad, that is how I feel. I only get one highschool graduation in my life and I don’t want to waste it, I want to have FUN. Am I allowed to have one night?

I guess from all my negativity right now all I can say is if someone is reading this who is also going through a hard time just know it happens to the best of us. I know all you want is “normal”, ¬†just like me, but remember “normal” is boring.

Prayers needed,

Kiera

April 20

SO…

My doctor’s appointment went well. They have been worried about my platelets because they were low, but thankfully they went up. In my personal time I just thought to myself, if I am really meant to do this drug can my platelets go up? And they did! I got my walker and wheelchair from Red Cross and today was my first day with my walker at school. This morning I was extremely terrified to walk the halls, but the moment I got to go to the bathroom by myself made up for the nervousness, EXCITING!

Today after school I was much more energetic! Maybe it was my walker’s help? Anyways that was extremely exciting!

As of right now I AM SPEAKING at the MS walk! I met with the coordinator yesterday at lunch and although she wants to see a draft, I seem like a fit! Of course they will have backup incase my treatment keeps me from going, but as of today, I am in!

I have seen lots of family commenting on my last post about the walk, so this is how you do it from PG!

-Go to mswalks.ca

-Choose your province and event then click on it

-Click “Register as an individual” and sign up. If you are asked to Donate click 0,

THEN

-Click the red donate button in the top right corner and search for “Susan Ropchan”

-Click “Donate now”!

Thank you so much for everyone’s support so far. My beginning goal was 500, but now I am at 790 dollars! I am not sure how to change my goal but I am now aiming for 1000!

Kiera, xoxo

 

 

 

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