I’ve been struggling with how to write this post. This blog began as a way for me to share my journey to find joy and purpose in the hardest season of my life, and I don’t want to lose that.
There’s part of me that wants to be honest and transparent about my health, especially to help those who may be in similar situations; but there’s another part of me that just wants to celebrate the victories in life and withhold the harder, more difficult moments. I’m not sure exactly why that is. Maybe it’s partly because I like to try to be positive and encouraging. Maybe it’s because admitting weakness makes me vulnerable. Part of it is I don’t want to seem like a victim. Regardless of the reason, after processing this last season, I’ve decided to be as honest as I can in this update, because life isn’t always as easy as it can appear on the surface.
If you’ve been following my journey you know that last year I was diagnosed with MS. (You can read the story here in part 1, part 2 and part 3.) it’s been a truly transformative year for me, changing me in ways I never could have imagined. I’m more open; more willing to reach out; I slow down and rest more often; I enjoy the people and things I love more; I’m a different, and, in my opinion, a better person.
A huge part of my journey has also been the treatment I received this past March, a new MS treatment drug called Lemtrada. I underwent 5 long days of treatment to infuse the drug into my system (you can read about each day of treatment here on day 1, day 2, day 3, day 4, and day 5). Essentially the drug completely wiped out my immune system, forcing my body to rebuild a new immune system by regenerating new white blood cells. Initially it seemed like the treatment worked really well. My post-treatment appointment with my neurologist was positive and just a few weeks later I was able to run substantial distances, run stairs again, and much of the energy and strength I had been lacking seemed to return (you can read my post-treatment updates here and here).
The hope was that this treatment would halt the progression of the disease by preventing any future attacks or relapses. It couldn’t heal the damage that was already done, but it would prevent any new lesions from developing on my brain and spine. Patients get two rounds of this treatment, 12 months apart, but many people are relapse free after their first round. Thats most people.
Near the beginning of September this all-too-familiar fatigue and weakness began to return. I was struggling to sit up straight, I could barely run, I could hardly stand to teach a whole class, and some strange new symptoms began to show up. First I noticed that my left foot could no longer feel temperature properly, then I began to feel numbness in left side of my face, almost like it was frozen. I really thought I was done with this.
I tried not to panic, but my fears were confirmed when I saw my medical team at UBC last Thursday. I had relapsed. Again.
I was so disappointed. I was frustrated. Honestly, I was so sad. I knew there was a small chance of relapse between treatment courses, but I truly, with all my heart, never thought it would happen. My neurologist explained that based the frequency of my attacks over the last 18 months, my MS seemed to be fairly aggressive. When MS is so active and aggressive it’s not totally uncommon for patients to relapse before their second dose.
My medical team agreed that the best course of action for me would be do a three day steroid infusion to help my body recover from the relapse and reduce the current inflammation in my brain. I was a little reluctant, but I trust my team, and tomorrow I begin 3 days of steroids as a day care patient at the Abbotsford hospital. Yay for the taste of metal and ridiculous swelling.
I’m desperately hoping that I don’t relapse again before my next round of Lemtrada in February, but if I’ve already relapsed once, it means my immune system didn’t come back the way it was supposed to. Instead of attacking viruses and infections like it’s supposed to, it’s still attacking my Central Nervous System.
This doesn’t necessarily mean that the treatment won’t work. This is why people have two rounds 12 months apart, just in case something like this happens. My doctor also said on Thursday that if it’s still not working after round 2, they can do a third round, which He is confident will be enough.
I know it’s not a celebratory or encouraging post, but I don’t want to give the illusion that this process is going better than it actually is. I’m still full of joy and hope, but that doesn’t completely erase the disappointment and frustration I feel. Please pray for me if you think of it! I could use a little extra strength these days!
Hi Kim Just wanted to shoot a word of encouragement to you I recently got the news that I actually have lupus and in a one month span long story short they did a blood test that confirmed that its not active right know and lying dormant in my body. At first I totally thought I am a weird and my body its pretty much rejecting itself. After coming home and telling Mauricio I quickly got corrected I looked at it as a wierd abnormality, and was a little discouraged but he viewed it as a miracle and truly believes that in that short span with prayer that I got healed from it. I guess its not offically gone but if I can get healed you can too believing in a miracle for you guys and for Gods Glory to shine in ways that are unimaginable. Everything is to prosper and nothing is to Hinder believing that for you!! Be blessed xxx
Thanks for sharing Crystal! I’m definitely believing for that same breakthrough in my life!
Hey Beautiful,
I have been following your posts here and on Facebook and well I am shedding tears for you while singing the song “Blessed be your name”. You are in both mine and Mike’s thoughts and prayers regularly, You whole family is. We are very proud of the woman you have and still are becoming. (Both you and your sister!) I love to read what’s going on with you and how despite everything crappy, God is still using you and that you are not letting “life” get in the way of that! In the good and not so good parts! It is evident that your life is blessing His name… whether you are living with the sun shining down or in the darkness with the roads marked with suffering! Hang in there girl, and be proud of all you have accomplished with Him so far, even in the pain! Love ya and still praying for ya!
Hey Bonnie!Thanks so much your comment! It’s great to hear from and to know that you and Mike are standing alongside me in this! Thanks for your encouragement! Keep it coming!!!
Praying for God to sustain you through this difficult and discouraging season of your life. In spite of all this your faith has been an inspiration for all of us.
We love you
Hugs
Thank you Jean!
Thanks for your honesty and transparency Kim, and sorry to hear that you relapsed. Praying for you and Clark, and obviously if you guys need anything don’t hesitate to ask.
Blessings!!
Appreciate that so much Gordo! So grateful for you and the rest of the students at SPC!
praying!
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because I know
He holds the future
And life is worth the living
Just because he lives
Kim –
your honesty is something to be admired. Praying for you, Clark and family. We serve a great big awesome God, we hold his hand and trust. Lots of Love and Prayers, Karen
Thanks Karen!
God bless you Kim I can only imagine what you must feel, but I know God truly knows and is with you. I know He hears our prayers and so I agree with you … Be healed and restored in Jesus name May peace, hope and love fill you to overflowing. Kim
Thanks Kim!
Approximately 3-4 weeks ago I asked myself the question …. I wonder how Kim is doing since her treatment? I also began to pray specifically for you, that God would be your peace & strength! I know that God knows the details of your life and that His divine plan includes your health!
That’s so amazing Sue! Thank you for being sensitive! And thank you for praying!
Thanks for your bravery in sharing that Kim, I’m sure it isn’t easy. You are the living example of what it means to trust and rely on God completely, and I think you have no other choice but to keep doing just that. You’re amazing! And God is a hero. Love you!!
Thanks so much Karen! Definitely not easy, but so worth it!
Hi Kim, just want you to know I’m praying for you as you continue through the ups and downs of this illness. And I want to encourage you that on the days where you feel hopeless, frustrated, or alone, to just hold on to Him. Take ahold of Him and He will never let you go. He’s all you need and He will carry you through. Psalm 91:1-2.
I love Psalm 91. Thanks so much Melissa!
Sweet Kim! Bless you for your vulnerability in expressing your emotions of frustration and disappointment. I think it’s so encouraging for people to read the words of someone who trusts Him THROUGH those emotions, as I know you and Clark are both doing. Darrell and I will be praying for you both, and for the victories to come that I know we will be reading about in future posts – He’s Got This! xoxo
That means so much Rachel! Since the very beginning we’ve felt your love and support! Keep it coming! It makes a difference!
Hi Kim, I just want you to know that I am praying for you. Be encouraged.
Brian and Beverley
Thanks so much! Much appreciated!
We are praying Kim. Stay strong in the Lord. Uncle Jerry and Aunt Debbie.
Thanks Uncle Jerry and Aunt Debbie! So appreciated!
Praying…xo
Thank you a million! I’m very much like you with regards to remaining positive and enjoying all the simply things that became so hard. Not wanting to admit it, I’ve done all the research you could possibly do regarding this dis-ease and reading you post has, although very hesitant finically acknowledge it happens to the best of us. 25wks post, Dx 12 years ago, I too am in midst of a flare. Just extremely tired, legs are heavy (like I’ve just run a mini marathon) Now whether or not to make the call or not. Thnx Kim. You’ve helped. Bless 😊