This phrase keeps popping up lately, “You got this.” It became my mantra after Clark bought me a t-shirt stating the phrase, and during my week of treatment (You can read about that here), it was echoed by friends and family who were cheering me on!
Sometimes when things get hard I want to quit. It’s a lot easier to give up than to push through. Whether I’m struggling to keep up, pushing the final few hundred meters of a run or facing my unknown future, I just keep telling myself, “You got this.”
I often change my tech backgrounds to remind myself of little truths I need to let sink in. I thought I’d share one of my favourite little phrases with you. You can download this graphic for your desktop, phone, or tablet by clicking on the links below! Enjoy!
It’s hard to believe that just two weeks ago I could barely stand and now I’ve almost returned to life as normal! On March 2nd 2015 I began 5 days of the Lemtrada infusions to treat MS, and I’m currently going on my third week of recovery! You can read the whole story here.
Last week I returned to work after two full weeks off and although I had a hard time making it through the entire day without a nap, I was still back! I work at a college, and last week there were quite a few viruses going around, so I encouraged students to keep their distance as I tried to protect my very weak immune system from intruders. I lasted the entire week without getting sick, and Friday morning I was able to resume my place in the classroom teaching! It felt so good!
Friday also marked the beginning of our annual leadership conference at Summit. Again, I was nervous about the potential of getting sick, but the conference, called More, is one of my favourite things we do at the college. I was also scheduled to speak for two of the four main sessions, on Saturday night and again on Sunday morning. I always have a stool ready in case I need to sit while I’m speaking, but for both messages I was able to speak standing the whole time! If you’re interested, you can listen to recordings from the conference here. (Photos from #more15 by James Bak)
Speaking at More 15 at Summit Pacific College
Yesterday I had my first post-treatment appointment with my neurologist at UBC in Vancouver. He assured me although it’s a very aggressive treatment option, Lemtrada was definitely the right choice for treatment for me at this stage in my disease. He said I’m doing very well and he expects that once I have my final round of infusions in 12 months, I should not see additional new MS symptoms for 15 years. I am incredibly hopeful and truly believe that this treatment is going to change my life.
My energy levels feel almost normal and I’m feeling much stronger. Yesterday I went back to the gym for the first time and I ran for 42 minutes without stopping! It may not seem like much, but considering I could hardly stand 2 weeks ago, I’m pretty excited!
Celebrating a good report from the neurologist!
I’ve also had quite a few questions over the last few weeks, so I’ll attempt to answer them the best I can:
Q: So, what exactly did this treatment do?
A: Basically, the treatment reset my immune system by binding to and depleting the immune cells (white blood cells) that are currently attacking the myelin coating on the nerves in my brain and spinal cord. Normally white blood cells are good because they attack bacteria and sickness in our bodies; but with autoimmune diseases like MS, the white blood cells are mistakingly attacking the brain and spinal cord. Now that this round of infusions is complete, all of the white blood cells in my body have been killed off and my body is now going to be working hard for the next few months to regenerate new cells they are less active against the myelin (nerve coating in my brain and spinal cord), ultimately reducing my relapses and slowing the progression of the disease. If all goes well, my body will produce new immune cells that will only attack sickness and infection instead of my central nervous system!
Q: Are all your symptoms gone now?
A: Unfortunately, no. I still have all of the same symptoms. My left ear is still partially deaf, my head still vibrates when I bite down, my arms are still numb, I still have buzzing in my legs, and I still feel an electric shock when I touch my chin to my chest. All of the same symptoms are still there. However, the neurologist said about 50% of people experience a decrease in their symptoms after about 1 or 2 years, once their brain and spine have had a chance to heal. So, although I don’t feel different yet, I’m still hopeful!
Q: Lemtrada seems like a very intense treatment option. Why did you choose such an agressive treatment?
A: That’s easy. Multiple Sclerosis is a disease without a cure. It almost always gets worse and not better, and when you look into the future of someone with MS there are so many unknowns. Although I’m near the beginning of my disease, I already have “a pretty good handful” of lesions and in the last 10 months I’ve had 4 relapses. There are people who have it far worse, but I knew that I needed to be active in doing something to stop the progression of the disease before it progressed too far. Both Clark and I, and my neurologist agreed that for me, aggressive treatment was the best option.
Q: Do you have to take any more medication?
A: For one month after the infusion I have to take anti-viral drugs to make up for my depleted immune system. But as for medication to treat MS, this is it! I will have one more infusion in 12 months, then I’m good for 15 years!
Q: You keep mentioning another infusion in 12 months. Do you have to have another infusion?
A: In 12 months I will go back in for 3 more day of consecutive infusions to finish off the treatment. Once that infusion is finished I should be finished the treatment! However, about 20% have a relapse after their second treatment and need to have a third infusion. I’m not anticipating that, but it does happen!
Q: How will you know when your immune system is working again?
A: For the next 5 years I have to have to give blood and urine samples every month so they can monitor my health and screen for potential serious side effects. I have my first set of tests in a week, but I expect that it will take about 4 – 6 months until my immune system is healthy again!
I’m happy to try and answer any other questions you have!
I’ll continue to update monthly for the next few months, but so far, so good!
One week ago today I finished my final Lemtrada infusion (You can follow my infusion journey here). During infusion week I had slight tremors in my hands, a little weakness in my legs, blurred vision, slight heaviness in my chest and an abnormally low heart-beat, but for the most part, I felt a million times better than I thought I would! It was the “after-math” that I was unprepared for!
It’s hard to put into words how my body has felt the past week. It felt like everything good in my body had been sucked out, and my body was fighting for dear life just to stay alive. I know that sounds extreme, but I don’t know how else to explain it. The first weekend I couldn’t hold up my own body weight to sit. I barely had the energy to eat, not to mention I was extremely nauseous and couldn’t keep food down. I couldn’t even stand long enough to brush my teeth or fill a cup full of water. Really, I was brushing my teeth from my knees. I had no idea how I was going to make it.
By Monday I felt stronger. I was able to walk around the house on my own strength and even take a shower! Ambitious to make a quick recovery I convinced Clark to take me for a walk to the bookstore, less than 3/4 of a kilometre from our home. He agreed and we began to slow journey around the corner. By the time we arrived at the bookstore, I was wiped. I had to sit because I thought I was going to pass out. Once we made it back home I crawled onto my bed and didn’t move for the rest of the day. Maybe a quick recovery needed to come by way of rest instead of pushing my boundaries.
Tuesday I was forced to stay put, so I parked myself on my balcony for the day and enjoyed the sunny 17 degree weather outside! It was nice to be outside, but what I was craving was human interaction! I absolutely love being with people, so by Tuesday I was going a little nuts. I needed to get out! I scheduled a coffee date Wednesday with a friend, optimistic that I could handle sitting upright for at least an hour. I made it through coffee on Wednesday morning, but that resulted in sleeping the afternoon away as soon as I got home. It seemed like I would pay for every effort to do something besides sleep and eat.
On Wednesday evening I decided that if my body couldn’t handle walking, maybe it could handle yoga, or at least a good stretch! I do yoga strictly for the physical training, not mediation and my favourite way to get a good yoga routine in at home is the Yoga.com app (you can check it out here). It has number of different routines ranging from beginner to advanced and cost only a few dollars. You can also change the background music to suit your style, which I love. I did a beginner stretching routine to ease myself back into it, and it was perfect for where I’m at right now! Gave me lots of time to rest between stretches!
I can’t even explain how much better I felt Thursday! I was able to do another simple yoga routine, and I ventured outside! I needed to pick up a Bridal shower gift, so I went to do that and I also did my first post-infusion grocery shop! By the time I was finished at the grocery store, I was wiped, but I did it! Progress! My nurse also called to see how I was doing and assured me that the extreme fatigue I had been experiencing was perfectly normal.
That brings us to today, Friday! Today I cleaned the floors, washed my bedding, made lunch, did another yoga routine and enjoyed the sunshine on the balcony! Yoga is really helping to regain my strength without exhausting my body. I still feel great, and no nap today! I think I’m almost ready to return to life as normal!
Thanks again for keeping me in your thoughts and prayers this past week. I know I’ve said it a million times, but I’ blown away at the support I’ve felt over the last 2 weeks! I see my neurologist again in a week Monday, and I’ll be giving blood and urine samples every month for the next 5 years to monitor by health. I’m hopeful this treatment is going work! I’ll keep you posted!
It feels a little surreal to be writing this, but I am officially finished my first round of Lemtrada infusion treatment for MS!
I have to admit, I was feeling a little weary this morning. It was more than just a physical fatigue, I was just tired. I felt weak, my eyes were swollen, my vision was blurry and my skin started to break out in a rash on my arms, face and chest. I just kept reminding myself, “only one more day.”
God must have known that I needed a little victory today because my IV was still usable! Yay! They also decided not to give me a Gravol and Benadryl drip today because of my low heart rate yesterday (low 40’s), but my heart rate and blood pressure were still a little lower than normal again. Most likely a side effect of the Lemtrada. The nurse must have been concerned because she woke me up at one point to make sure I was still conscious!
I also had a few visitors today, so that made the afternoon fly by, and before I knew it, the nurse was removing my IV for the last time! I was finished! I AM FINISHED! Well, at least until my next treatment in 12 months!
This first round of five infusions are finished, but now the real work begins. As the nurse explained it to me, my white blood cell army has just been taken out and I now have nothing working on the front lines to fight off invaders. I am extremely susceptible to infections and sickness for the next few months until my cells have a chance to regenerate and my immune system begins to work normally. Basically I have to avoid sick people, be overly cautious about how my food is prepared, and wash and sanitize everything! Hopefully everything works as it should and I have a healthy body again soon!
These last five days have been challenging, but so life-giving for me! The words of encouragement, support and prayers have really shown me what it means to have people in your corner, fighting alongside you. I am blown away at the way that people have rallied around Clark and I throughout this journey. Thank you. Please continue to pray when we come to mind, this battle isn’t over yet!
I can’t believe I’ve already finished 4 days of my Lemtrada treatment for MS! It’s flying by faster than I anticipated, but I don’t mind at all! Only one more day to go!
Today started off on a sad note. When we got to the clinic this morning, Shazal, one of the other guys who is also getting Lemtrada this week, reported that he had been awake all night coughing up blood. Unfortunately they had to rush him for chest x-rays and he won’t be able to resume treatment until Monday, or until his condition improves. We definitely missed his presence at the clinic today, as he is so full of joy and life! If you think of it, please pray that he’s feeling better soon. He’s already been through a number of other treatments and can’t seem to catch a break.
As for me, I had to get my IV line changed again this morning! We switched back over to the right arm, and four tries later, I had a new IV. Hopefully this one can last me until the end of the day Friday when I can get rid of it once and for all!
The nurse checked my first vitals of the day just after she hooked up my IV and was fairly concerned that my heart rate was in the low 40 beats per minute (I’m normally in the mid 60’s). As a precaution, they continued to check my vitals every 15 minutes all day, until my heart finally returned to normal around 3:00pm. They seemed very concerned and even asked Clark not to leave the clinic all day because they wanted him close by in case they needed to transfer me over to the emergency room. A little scary!
Besides that, I’m feeling pretty good! I’m little more tired now that I’m off the steroids, but overall I feel much better than I thought I would be at this point. No fevers, nausea, rashes or other serious side effects! For that, I’m so grateful!
I know I’ve said it a million times, but thank you so much for your prayers and support. I really believe that my success with this treatment has so much to do with prayer. I really feel like I’m being carried through by a God who loves me and a community that understands the role we can play in one another’s lives. It’s amazing. I don’t know how else to express my gratitude except to just say, thank you, from the bottom of my heart. Your support means the world!
Well, I’m officially past the half way mark! Only 2 days left to go of my 5 days of Lemtrada infusions! I was overjoyed today that my IV was still good this morning, so no new needles! The day starts so much better when you don’t feel like a pin cushion!
I had a new nurse today, Monica, who is awesome. She’s so kind and compassionate and it’s evident that she really wants to make sure I’m comfortable and doing ok! I’ll have her as my nurse tomorrow as well, so I’m happy about that!
Today passed by really quickly, probably because I slept for almost the entire day! They warned my that I may have trouble sleeping because of the steroids, but that hasn’t been the case for me at! I’m sleeping all night and for several hours during the day. No need for the sleeping pills they prescribed to help get rest. However, the steroids are causing me to retain water, so I look like I’ve gained a good 5lbs.
I also kept my winning streak alive as I dominated Clark in Dutch Blitz. Of course, he’s still blaming his loss on the fact that I’m on “performance enhancing drugs.” Whatever helps you sleep at night Clarky! Clark’s been making friends with the other two guys who are getting infusions. The one guy, Chazel, calls Clark “the cool guy” and asked to get a selfie with him today. I love it.
For the most part I had another great day! During the one hour observation period at the end of the day, I developed some slight tremors, but they pretty much passed within the hour. At the end of each day, after the Lemtrada is finished dripping, I have to stay to be monitored to make sure everything is A-OK. So far, so good!
Now that I’m home for the night, I also have a slight heaviness in my chest, but they warned me that that was pretty common. If there are any changes I’ll head over the emergency room, but I’m hopeful that it will pass. Keep praying though! I can use it! I had my last dose of steroids today and the nurse warned me that many people experience more severe side effects (nausea, rashes, discomfort) once the steroids stop, but I’m still believing that prayer is stronger than steroids! Right?
To replace the steroids, tomorrow I will begin to receive Gravol and Benadryl by IV to manage some symptoms that may arise. I’ve been warned that these will knock me out, so I’m expecting to sleep the day away!
Thanks again for your support and prayers. Clark and I both absolutely love reading all your comments, messages and encouragement. There is something special about knowing that a massive community is backing you! Thank you!!! Only 2 days to go!
I woke up bright and early this morning to begin day two of five of my Lemtrada infusion! (You can read more about the treatment here and read my day one recap here). The nurse left my IV line in my right arm last night so I had to wrap it up tight with plastic wrap and bags this morning to protect it from the water of the shower. Unfortunately it turns out the efforts were unnecessary, as the line had clotted and needed to be moved back over to the left arm anyway! After a few failed attempts into my skinny little veins the nurse finally struck gold on the outside of my left arm! Success!
Besides the terrible metal-like taste in my mouth and moderate fatigue (I slept most of the morning), I’ve been virtually side-effect free! Honestly, I feel great! Although that may be the steroids talking. My temperature and blood pressure were perfect all day! Such good news! Prayer works!
I was warned that because of the delay with my IV, I likely wouldn’t be the first patient finished today. Challenge accepted! I came back from behind and was discharged first at 3:20pm! Apparently because I’m responding so well to the drugs I can take them in faster than the others. I don’t mind at all! In case you’re wondering, I’m totally not competitive at all. Really!
Unfortunately today was my final day with my nurse, Madonna, and tomorrow I will get a new nurse. She’s been amazing and is constantly going out of her way to make sure I’m comfortable. Thanks for everything Madonna!
I’m so grateful I brought my own blanket and pillow as it makes napping a lot more comfortable, as well I bring tons of snacks so I have options to choose from all day long. I’m also grateful I have Clark to keep me company. I totally beat him in Phase 10 today, and his excuse is that I’m on “performance enhancing drugs.” I guess he has a point!
Thanks again for all your messages and prayers! I can’t believe the amount of support we have! Please continue to pray! I truly believe it’s working!
In case you missed my #LiveFromTheInfusionRoom updates on social media today, here’s a recap of day 1 of my infusion treatment! (You can read more about the treatment here.)
Today was the day I’ve been anticipating for months! At 6 am this morning Clark and I hopped in the car to travel into Vancouver for my first of five days of infusions. With my new “You Got This” t-shirt on, I felt excited and more than ready to face the week!! We arrived at the clinic by 7am and met my nurse, Madonna (for real!), and the other two guys who were also receiving their Lemtrada infusions today.It was nice to finally see everything for myself, and visualize what the rest of the week might look like.
After getting comfy in the chair, the nurse went digging for the perfect vein! Unfortunately after quite a bit of pain in the left arm, she finally had success in the right and I was ready to go! I had to take a few drugs to counteract the most common side affects, as well as steroids (look out world!) and antiviral meds. The pre-meds took about 2 hours, and then the Lemtrada began to drip slowly for the next 4 hours.
I had a very minor headache, which is apparently quite common, but aside from that absolutely no other side affects so far! They’ve been checking my blood pressure and temperature every half hour, and so far, so good! Although, I did have to apologize to my nurse because apparently I’m not giving her enough to do and she’s bored. Sorry Madonna! I also received the award for being the first once to finish my infusions, allowing me to be the first to head home for the day! Now I know how my students feel when I let them out of class early!
Overall, the wort part is the metal-like taste in my mouth, but that’s easily fixed by sucking on something with a stronger flavour! Can’t complain! They left the line in my arm so tomorrow they won’t need to fish for a vein again! Hallelujah!
I am loving the comments from everyone. It’s amazing the difference I feel knowing I’m not alone in this! Thanks for following along on this journey with me! Please, every time you see a post or think of me throughout your day, stop and say a little prayer, even if it’s just for 10 seconds. Prayer works!
It feels like only yesterday that I was sharing about my journey with MS and the miraculous story that made it possible for me to begin the Lemtrada infusion to treat my MS (You can read the amazing story here). It’s hard to believe that after this crazy, emotional, miraculous journey, tomorrow is the day treatment begins!
I have to be at the clinic in Vancouver every day this week (March 2nd – March 6th 2015) from 7am – 5pm, where I’ll be receive the treatment by intravenous.
Basically, the treatment will reset my immune system by binding to and depleting the immune cells that are currently attacking the myelin coating on the nerves in my brain and spinal cord. When my body regenerates new cells they are less active against the myelin, ultimately reducing my relapses and slowing the progression of the disease! Hallelujah!
There are some pretty serious risks associated with this treatment, but when you have a disease without a cure, it’s worth the risk to potentially add years of healthy, active living to your life. I am so optimistic!
So, for the next 5 days Clark and I will be hanging out at the clinic! We would appreciate your prayers more than you know! Here’s how you can pray specifically:
1. Pray the treatment works – there’s always risk that things won’t go exactly as they are supposed to, but we’re praying that everything works well and the results are better than the doctors expect!
2. Pray for minimal side effects – the side effects of the treatment are headaches, dizziness, rash, hives, itching, fever, chills, nausea, fatigue, but I’m hoping for very minimal side affects!
3. Pray for opportunities to encourage others – my goal is to try to use everything in my life for a greater purpose, so I’m believing that through this I’ll be able to encourage others!
Thanks for joining us on this journey! It means the world to know we have so much support!
