September 26th 2017

Am I even alive? Wow, I have not written in so long! I was reading past blogs to see where I left off!

So I am in my 4th week of college and considering I have so much reading/writing for my English class, doing this made me want to barf.

The Ed Sheeran concert was amazing, I felt like I was dreaming and once it was over, all I wanted to say to him was “COME BACK”! Also Whistler was amazing. AND THAT COOKBOOK IS AMAZING! Sorry if I am scatter brained but so much has gone on.

I had a neurologist appointment last Tuesday. Its weird when I am walking by myself I take 45s, but with my mom (HER FINGER) 12s. I wish my mind just realized I didn’t need something. A finger is not going to save me. They also tested my eyes and nothing had changed.

I had a physiatrist appointment yesterday. It was very benefical and I am excited to start working with her. Oh did I mention she was vegan?!? I was so happy to hear a doctor talk about veganism (the good things) it made me want to cry LOL!

This weekend I will be going to the morning session of the millenial conference with someone quite special. All I gotta say to you is THANK YOU everyday(:

At school I have met some new friends (go me) and they are all amazing! These are the people I have been waiting for, and again I am so thankful for everyone I have met.

This summer I was also given a guitar. I have been enjoying trying to learn (although I still suck). I have been writing this song. And besides school its been stuck in my mind 24/7.

I stopped going to physio this summer because it was so hot and they didn’t have AC?!?! Did you know MS is the worst in heat? When I get to over heated I just want to pass out and my body seems to have no strength. But now that it’s getting cooler I will start going again.

I know I sound all over the place but I only have 15mins to update you. I hope I will be able to go more in depth about everything soon,

Kiera, xoxo

P.S. People keep askimg if i’ve gotten better or worse and if I see differences from the medication. I have good days and bad days and I see myself getting better but VERY slowly. It’s things I notice but others don’t. My neurologist said some people it can take a year to kick in, so just hold on. I am booked in for an MRI to see if things are changing…

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July 25th

Can you believe summer is already half gone?! It’s crazy how time flies.

I have a couple of things to talk about today. 1st DID YOU READ MY FACEBOOK?! Yes it is true, I will be going to the Ed Sheeran concert this Friday night. After waking up early the day tickets went on sale and not succeeding, this afternoon I lucked out, 3 days before the concert. A blessing amongst a storm. I was told good things happen to good people, so I am hoping that’s true. But you are always right, and so smart. Sheesh you are my favorite;)

As far as my mobility it seems its been at a stand still this past week.  I am not sure if this will change anything, but I have officially decided to become vegan. I already don’t eat dairy (besides occasional cheese, which I have the will power to leave), and chicken was easy for me to say goodbye to. I have been reading lots of different studies and watching lots of documentaries, and it is so fascinating. You might think I am “crazy” but you take my spot and have a hard time walking, then you tell me I am crazy.

You know how you scroll through facebook and videos just pop up, no one liked them, shared them, commented, etc. well that happened to me today. I was wearing headphones and “I am no longer a slave” just started blasting in my ears without me even clicking on the video. I just started thinking of one year ago exactly, when we stood at camp barely knowing each other and crying. “[Our] fears are drowned in perfect love”. After everything, if you ever read this, I hope those words are ringing true to you. I wonder if you remember that. I hope life is treating you well.

My mom, dad and I are heading to Whistler for the next couple of days before the concert. I feel like my summer has just truly began even though it’s already half over. I am not sure what we will be doing but I can’t wait to write another blog after these next few days. I know it will be an exciting one.

After our trip I have a physio appointment, so I am hoping for more exciting improvements to tell you. I also have a blood test (barf) so I am hoping my lymphocytes have grown back more again. The more they grow back the further away from my ‘bubble’ I can move.

Until next time,

Kiera, xoxo

July 10th

IT’S SUMMER!

So the last time I wrote I hadn’t graduated, well now I have! My graduation day was a FULL day. I went to take photos at the parliament buildings, then I had my ceremony, then my dinner/prom, then I went to the grad all nighter until 5:30 am. By the time I got home and took my makeup off etc it was 8. I also had something to eat before I went to bed for a couple of hours. Considering I was up at 3 am the previous day (because I was excited) I did super good that day. I GOT MY DAY!

I went back to Physio AND WHAT A DIFFERENCE! I was looking at old blogs and was embarrassed to read some things. What an improvement I have gone through. I was able to stand on a “pillow” (bouncy thing) with my eyes closed and feet together (WE STOPPED COUNTING). Before I honestly had issues just standing on solid ground. Another thing was I went on the treadmil and was walking WITHOUT holding on. WTF? Even the video 2 weeks before I couldn’t let go. Although I see SO much improvement I am excited for future improvement. My next step, walking up the stairs without holding onto the railing?

My grandfathers funeral was on Saturday. It is honestly something I like to avoid talking about but I can’t not talk about it. He told us before he passed away when he “got to the other side” he would ask them to completely heal me *cue tears*. I hope that he somehow blesses me with the longevity he had, considering he almost lived until 100! It’s weird not having the phone ring a thousand times a day, I am so thankful I had a grandfather like him. Thanks gramps xxx.

It’s funny because I have always hated jealousy and  how much it ruins relationships. I’ve never really seen it “in it’s full works” until just recently.  To all my friends, if you are reading this,  a word of advice resolve all of your jealousy issues as soon as you can. Don’t let it fester and become who you are because that is so dangerous.  It’s like a bug that never stops multiplying.

Next year I will be attending Camosun for Psycology! I am starting off at Camosun instead of going straight to UVIC because of the cost. I want a successful future and if  I can start saving money now, why not? It’s ironic because I think no course is useless if you are wise enough to use it the right way.  Because I want to be a cousellor or occupational therapist, I think what I am taking is the perfect lead up.

One of my graduation gifts included a cook book. I am way to excited to start cooking the recepies! Imagine me cooking dinners (my mom would drop LOL).

I am looking forward to summer. “Everything” is done and now I can just focus on the fun stuff. Hopefully in a weeks time we will be off to our family reunion but if the BC fires dont settle down, we might not be going.

Kiera, xoxo

PS If your going to get mad at things I said get mad at me. My parents don’t have a say in what I write, this is 100% me.

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 amazing💞

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 much😭

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