Brooklyn's 2nd Birthday

More than one doctor told me I wouldn’t be able to have kids because of my lupus antibodies. But this week, my first baby turned two! It’s been a wild ride to get to this point, but I couldn’t be more thrilled. Brooklyn has been such a gift and we love her so much. 

Back on that first day I was diagnosed, I was told that I had anti-SSA antibodies and I would probably not be able to bear children. These antibodies would attack the development of the fetal heart (specifically the SA node). Zach and I were understandably devastated and immediately started working through what this would mean for our family - we still wanted children so maybe this meant adoption? (I think that adoption is such a beautiful thing, really. I see how God has adopted us as his sons and daughters and I would love to model that for a child.)

Not long after that initial bombshell, my first Rheumatologist wanted to put me on medication that he said had a 90% chance of making me infertile. Umm, what?! I asked “Would you have given me this medication if you knew that I had lupus when I went to the hospital with heart failure?” “Maybe” he replied. “Then why would I start taking this now when I’m stable?!” I couldn’t believe it. So then he offered a second medication option saying “this one will only make you sort of infertile”. If only you saw my face in that moment, you would’ve helped me pick up my jaw. Needless to say, I sought out a new Rheumatologist. This time, one that specialized in the anti-SSA antibodies and would help me toward my goal of a ‘healthy’ (as healthy as can be expected with lupus) pregnancy. 

The first task list I had was to a) end the heart medications that were not compliant with pregnancy, b) wean off the prednisone and imuran, and c) give my body at least 6 months flare free before trying to conceive. I could stay on my synthroid and plaquenil for pregnancy and breastfeeding. 

I’ve found that doctors prefer to keep you on meds. It might be a bit of a money thing, and I think it also gives them peace of mind that you wont flare. You could say that I like to live dangerously because I really pushed to work toward my goal. Every appointment I made it clear what I was wanting and asked what we could do to take a step forward that day. I also did a ton of research so that I sort of knew what I was talking about and could ask more detailed questions. In the end, it was 11 months after my heart failure that I ended all of the meds that were not safe for pregnancy. Now all I had to do was wait 6 more months and pray that I didn’t have another flare! 

Long story short, God blessed me with my lupus in remission and we were able to start getting excited for Brooklyn! 

I saw a special high risk OB at Women’s Hospital and she made some recommendations and ordered some super detailed blood work. Because of my cardiolipin and anti-phospholipid antibodies (that cause blood clotting), I would need to take a low dose aspirin until about 37 weeks to help make sure blood passed through the placenta properly. I then started seeing a high risk OB that works out of St. Paul’s so that I could deliver there - this way they had all my history on file and my cardiologists down the hall just in case. 

I saw my OB every week (EVERY WEEK) from 15 weeks gestation onwards so she could listen to the fetal heart with the doppler. This would give early detection if they suspected my antibodies were attacking the baby. I also had a special fetal echocardiogram at 20 weeks gestation and ultrasounds every 4 weeks from that point until delivery. There were a lot of appointments and it got really exhausting. Some days I was happy to see my baby or hear her heartbeat, but most of the time I sat marking my students’ science homework in the waiting room and driving home from the west end in the dark, rainy winter. There were lots of days I grieved how relaxed a normal pregnancy could’ve been, but then I remembered that I was thankful to be pregnant. Not going to lie though, our family plan became “2 is the new 4”.

Brooklyn’s birth day and the days surrounding it were not the greatest. She was born via emergency c-section and spent her first 48hours in the NICU. That first night, Zach and I had to leave her and go back to my room and as we sat there I said to him with tears streaming down my face “we’re parents now”; it felt so heartbreaking to be parents but to not have our baby with us. 

The past two years with Brooklyn have been so fun! She loves to see people smile when she does something cute or funny, she’s recently gotten into telling jokes, and is super gentle with her baby brother. We’re so proud of how fast she learns and we love her relaxed and joyful attitude. Praying for God’s richest blessings on our little girl this year and many more to come!

Kickstart My Heart

When I was still a teenager, I had my first rheumatology appointment. In grade 11, I started noticing that my fingers had painful bumps on them and would turn white and go numb whenever I held something cold (like a slurpee - those things were gold), or they’d go red and burn like fire during dance class. I was quickly diagnosed with Raynaud’s phenomenon and perniosis. I was told that because the problem was aesthetic (not actually true), I’d just have to get used to it and I had a 25% chance of developing lupus in the future.

I remember going home and looking up the “disease with a thousand faces” only to find more questions rather than answers! My mom and I cried while we watched America’s Next Top Model as one of the girls had lupus and was too tired to go to the photo shoot so she got kicked off. Would this be my life? Would I have to let go of all my future aspirations because I’d be too tired and spend my days sleeping? It sounded horrible. And confusing.

I pushed the thought to the back of my mind and continued on with life now on meds. I started calcium channel blockers which helped temporarily, but then the blood clots would re-develop in my fingers just the same as if I never took the medicine at all. About a year after my diagnosis and many different opinions, I found a great doctor who worked on improving my circulation through acupuncture and pressure points. The bumps would come and go (usually with stress) but overall, it was such an effective treatment that I didn’t even have any blood clots for my wedding pictures 2 years later!

During this season of life, I prayed A LOT for healing. Oh Lord, please take this thorn from my side. I didn’t understand why this was happening to me. Was it because of past sin? (No, I know “bad things” don’t happen as “punishment” from God), was it because I needed to learn something from it? (I did a ton of self reflecting to see if I could learn any life lessons as fast as possible so this could be over and done with), was this the only way I would be close to God? (but I love God and I know I always will whether or not I’m going through tough times). 
 

So when the ICU doctor at Lions Gate Hospital questioned me about my past, he put some of these pieces together - Raynaud’s, perniosis, hypothyroidism, heart failure - and ran some tests for lupus. I didn’t know it then and it would take 8 more days for those tests to come back (see part one of my heart failure story here).

I was now on my way to the CICU (cardiac intensive care unit) at St. Paul’s. I remember the drive in the ALS ambulance and wishing I could see the beautiful Christmas lights that lined the Lions Gate Bridge. When I arrived, the team was quite worried about me (“we were THIS close to putting you on life support!” I was told) and that lead to a pretty traumatic arrival. I mourned the gentle touch of the Lions Gate staff as I was pulled and pushed around by way too many nurses around my bed, ripping off blankets that pulled at lines they didn’t know were there. My neck was cramping from the positioning but my arms were strapped down so all I could do was cry out in pain. I’ll never forget looking up to see the nurse at the foot of my bed chewing gum. I would’ve given anything to leave in that moment.

My O2 was low enough to get the “Darth Vader” mask. It covered my whole face and the moisture that poured out two blue tubes was almost suffocating. My first night nurse was brutal; she shined the flashlight in her own eyes ‘to check’ so I thought she was pretty dumb. I hated St. Paul’s instantly from my first impression. This was a nightmare. 

In the morning, it was a new day and thankfully a new nurse. I was even going to get my heart pic line out (the ‘pig tail’ they put in to drain the fluid from around my heart)! The doctor said it was going to be fine. But when he pulled that thing out - oh man. It was a 10 out of 10. No joke. My teeth were clenched so hard I thought they might start popping out! It took a little bit for them to figure out what medicine they could give me and they apologized saying “we’ve never done this on a conscious patient before”. I replied “next time, give the drugs first”. 
That hurt a lot.

In the CICU, the medicine they gave me worked wonders to strengthen my heart. I didn’t need a heart transplant or even a pacemaker! Praise the Lord. 

Here I am in the CICU in stable condition for the first time. You can tell that they pumped me with a lot of fluids (6 bags!) when they were trying to get my blood pressure back to readable.

If you couldn't tell from the last picture just how much fluid I needed. 

This is what a best friend looks like. My friend Katie is an RMT and came to help get that water out!

I was moved to a private room with a beautiful window view and I would spend the days sleeping, listening to sermons, and reading my bible. I went from not being able to sit up on my own or bend my legs to starting to walk a bit back and forth in my little room. I even got to wash my hair with a special hair bag. Things were slowly improving and I would be moving up to the regular heart ward after only 3 days. It was a miracle, actually. God was healing my heart and he was doing it fast. 

During my 5 days up in the cardiac ward, the doctors ran a ton of tests to try to find out what caused my heart failure. My heart biopsy came back that it was not caused from a virus like they originally hypothesized (yeah, you read that right - having a heart biopsy was weird. But now that you know me a little better, I’m sure you’re not surprised that I was singing “Kickstart My Heart” to the cardiologist in the operating room). So what caused it? 

Every day, the team of doctors would make their rounds and explain to me what they were doing to help me and how things were going. I felt like quite the heart expert myself! I felt totally in the loop and I appreciated so much that I had the best of the best at St. Paul’s (first impressions are not always lasting impressions). But on the 2nd to last day of my stay, a different doctor came by and said “Okay, you have lupus, goodbye.”

But not exactly those words. It sort of felt like that, though! 

I was so caught off guard, I didn’t have time to be educated about what lupus was the way I was educated about my heart! So I took a breath and remembered that time I was a teenager and was warned about this. Okay. Lay it on me.

The doctor explained to me that I fit the criteria for a lupus diagnosis and I’d have to take medicine (hydroxychloroquine) basically forever to help suppress my overactive immune system. They couldn’t prove what caused my heart failure, but they could prove what didn’t so at this point, all signs were pointing to a lupus flare. 

—        —        —        —

I teach about the immune system to high school biology students so I have a pretty good idea what’s supposed to happen. Basically all cells (ex. your body cells, all types of bacteria or virus cells) have something called antigens on their surfaces. These antigens are kind of like beauty marks/scars/tattoos on the outside of the cell for recognition. When your body sees any of your own body cells, they know it’s you, and when they see anything else, they know it’s not you because of the antigens. This way you can make antibodies to bind to those antigens, signalling the cell to be attacked and destroyed. This is a great system for when you want to attack a bacteria or virus that isn’t supposed to be in your body!

For people that have lupus, a normal body cell isn’t recognized as one of the team, and the immune system creates antibodies against the normal antigens, signalling them for attack. 

—        —        —        —

I learned that I had high levels of antibodies against my dsDNA (so basically all my own cells), anti-SSA antibodies that attack the development of the fetal heart, and cardiolipin and anti-phospholipid antibodies that cause abnormal blood clotting.

I was told that lupus is a chronic illness and there is no cure. Because of my anti-SSA antibodies, the chances of miscarriage are very high and I would most likely not be able to bear children. 

I sat by myself in silent tears for a little while. How was I going to tell Zach? This isn’t what he signed up for. Devastated, I prayed. Looking up, I saw the verse I wrote on the whiteboard:

Isaiah 41:10 “fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”
 

It wasn’t an easy day to say the least. Even four years later, I still cry on January 9th. 

And then came January 10th. I was going home! And I had improved a lot! For the other nerdy science folk out there, from my admission to my first outpatient appointment: my BNP went from 5,000 down to 150, my ejection fraction had gone from 23 back up to 60, and my dsDNA antibodies went from 650 down to 40. 
THIS IS UNBELIEVABLE. 

Only 8 days after heart failure, I was walking around the ward for my daily exercise.

I filled the whiteboard in my room with encouraging reminders. The bible verses kept me focused on truth, the lead picture allowed me to attach my own heart monitor, the smile reminded me of wonderful friends, and the number stats show that the water was moving out fast - I lost 40lbs in 3 days! Crazy.

Dr. Toma was my Cardiologist and he was in charge of my entire recovery while at St. Paul's.  He is the one who performed my heart biopsy and I gave him a thank you mixed CD of heart songs including 'Kickstart My Heart".

It took a little while to regain strength and not have to pause for a breather half way up a set of stairs. I returned to work a few months later after spring break on a part-time basis but not back with my regular classes; I was on “light duties” so to speak. We lived with my parents at first so they could take care of me. It was like being a baby all over again, but this time I was old enough to appreciate it! 

There were lots of really hard days where I struggled both physically and emotionally. I found my strength in the word of God (the bible). I read, journaled, and prayed as I wrestled with what all this meant for my future. I found peace, joy, and purpose in the truth God spoke about who he says I am: redeemed, beloved, blessed (and more!). 

It is so amazing to me that my heart was restored to full capacity only 3 weeks after heart failure. Only a few months later, I was able to start exercising again and I experience NO ISSUES with my heart to this day. I believe this “heart event” was a way for God to show me the lupus. Because I was able to be closely monitored by high risk doctors, I have since carried two healthy babies to term. What a miracle. God is so good.

The Day My Heart Stopped

I always wondered how I would react on my death day. Would I be scared? Would I regret the things I didn’t yet get to do? As it turns out, I found my answer when I was only 25. 

Just after Christmas time, I got sick. This wasn’t unexpected; the Christmas hustle had just died down and the second-day-of-rest-sydrome got a hold of me. But it escalated pretty quickly; all of a sudden I couldn’t get up off the couch, I couldn’t eat, and all I wanted to do was sleep. 

A few days went by and I felt progressively worse. I couldn’t eat, so I would try to drink juice just to get some nutrients and fluids, and I was sleeping almost non-stop. My doctor was on holiday (why is it that we get sick on weekends and holidays?!) so I went in to the walk in clinic when I started to feel a little pressure in my chest. I figured I had pneumonia. The doctor gave me some antibiotics and sent me for a chest x-ray. 

I walked into the x-ray clinic feeling pretty weak and by the time they took the x-ray, I wasn’t able to stand up for it so they gave me a chair. But then I couldn’t get up to walk so they gave me a wheelchair. I was so embarrassed. Maybe I was just so weak from lack of nutrients that I needed an apple juice. I felt like a child in the back room sipping on my juice. In a wheelchair. I even needed to be wheeled back to the car. 

When we got home, I got a call from the doctor confirming there was fluid in my left lung so I popped my first antibiotic, tried to eat some cheese with it, and distracted myself with a little Pride and Prejudice. At this point, my body completely rejected what I was putting in and I was on the floor because I couldn’t hold myself up while vomiting. Zach helped me to the bathroom and that’s when I fainted. Poor Zach, just finished his first aid course and who would’ve guessed I’d be his first patient! 

The heaving started coming in regular interval waves accompanied by profuse sweating to the point of soaking towels. I think I was nervous of going to the hospital in case I wasted their time, but at this point I said to Zach that if I had one more wave then we’d have to go in. Sure enough, 20min later (on schedule) the next wave hit. So Zach got me dressed - literally putting my clothes on for me - and we headed over to Lions Gate Hospital. I figured I was so weak from not eating for 4 days straight and I was probably dehydrated so I would need an IV to build my fluids back up.

When we got to the hospital, it was 9am on New Years Day 2013. Zach pulled the car up to the emergency room entrance and a 90 year old lady helped me through the doors to triage. I thanked her but felt so sorry that I wasn’t helping her in. I could barely pass over the ID cards Zach had put in my fingers and I had to keep putting my head between my knees to try not to faint. 

They took me to the ER right away. The waves weren’t stopping; I was dry heaving, sweating and fainting while lying down. WHILE LYING DOWN. I knew something was terribly wrong. 

I was so thankful to be in the hands of our medical system. I knew I was in the hands of God. I didn’t really have the energy to think or feel much, but I felt calm. My body was breaking down, but my spirit wasn’t. I kept seeing medical personal that looked like people from our church family and these were encouraging little moments from God to help me pause and hear

“I am with you”

I had blood tests show really weird levels, portable x-rays because I couldn’t sit up showed fluid in my right lung now instead of the left, and the specialists couldn’t do an arterial line because they couldn’t even find my blood pressure with the stethoscope or cuff. 

I was still having the waves and Zach would try to cool me down with cold towels. That night, I was sent to the ICU. While in intensive care, I got the works; every test you could imagine. I was so thankful for the CT scan because they inject you with radioactive fluid and it makes your mouth taste metallic. This was great because I wasn’t allowed to drink any water (in case I needed a breathing tube) so my lips were sticking to my teeth because my mouth was so dry. I BEGGED for ice chips. I PROMISED I would spit out the water. Sometimes I was able to get the nurses to feel sorry enough for me to bring a couple ice chips, other times they’d hold me off until I fell asleep again, forgetting the thirst. When Jesus said “I thirst” while he was on the cross, I get it now (John 19:28).

It got to the point that I could no longer breathe for myself and I coded blue. Zach was not allowed in and prayed in tears while he waited to find out if I would survive the night. He was told that it didn’t look good; they weren’t sure if I would make it. I can’t imagine what it would’ve been like for Zach in that moment. 

When the head doctor came out to the waiting room the next morning, he told Zach that I scared the **** out of him. They needed to drain the fluid that had built up around my heart and ended up draining 500ml of fluid under my pericardium (which is a sac kind of like a balloon that is around your heart). 

I had a few visitors come and pray over me. I couldn’t always keep my eyes open, but I was listening. They asked how I was. How was I? I don’t really know, I couldn’t think very well. But I wasn’t scared. Not at all. Really, I wasn’t scared. It was supernatural. I had this overall sense of peace blanket me in the most traumatic of experiences. My physical heart had failed me but my spiritual heart would never waiver, and was healthy as ever. Trusting in God’s plan was such a gift from way beyond myself and I stood firm in my faith.

One of the nurses commented that I never complained (well, except over ice chips); I didn’t find myself in a place where I was sad about the possibility of missing out on my new marriage, future children, a home, my new career. How was I not even mourning these things? My sights were focused on Jesus. I saw him holding my hand, I felt his presence like a warm hug, I saw his love in the eyes of people helping me. I was just so thankful. I don’t know how to explain it. Even now, people say to me: “You had heart failure? That must have been so scary!”. But it wasn’t and it’s such a testimony to God and his love and the power he gave me because that peace was from beyond myself. I didn’t muster up that courage. In my weakness, God showed his strength!

That night, I was transferred to St. Paul’s Hospital - the leading heart treatment centre in the province - because I had maxed out on the medicine that kept my heart beating and I may need mechanical help (ie. a pacemaker). 

When they were preparing me to leave, I needed to get a new central line in my neck. I’m not great with needles and I’m certainly not great with anything touching my neck! I remember telling everyone as my body went into shock that I was seeing stars; they were blue and white and red but not like the American flag, they were little and twinkly. And then I was unconscious.

From here, I was thankfully on the road to recovery. You’ll have to stay tuned for what happened next :)

I know this was a loaded story, but what do you think? Have you ever felt that supernatural peace, joy, or courage wash over you in an otherwise terrifying situation? How did you react?

She Laughs

“A bite? You wouldn’t want any… I have lupus.”

Oh how I love to see the look on people’s faces when I bust out the ‘ol “I have lupus”. 

I’ve always been a bit of a jokester. Back in high school, I was in charge of the PA announcements so I followed in my brother’s footsteps and gave the ‘joke of the day’ at the end of the reminders (“Why did everyone want the mushroom at the party? Because he was a FUN-GI!”). And for Brooklyn’s gender reveal party, Zach and I found out the gender before everyone else and I couldn’t help myself. First, we cut a reveal cake that was just plain vanilla, then I assured everyone that I had a box filled with balloons (“and there really are balloons in it!”) only to surprise everyone with YELLOW balloons! Finally, we passed out silly string and everyone found out we were having a baby girl as the pink threads went flying everywhere, filling our house! (note to self - remove the rug first next time) Oh, and can't forget the time I cried laughing WHILE IN LABOUR. Seriously, nothing's gonna wipe that smile off my face.

Back when I was still in high school having a laugh with my boyfriend (snagged him up pretty quick). 

Blue or pink cake? Blue or pink balloons? FINALLY the suspense is over with PINK silly string! We were so excited for our baby girl! 

Crying laughing while in labour with my daughter, Brooklyn. It was a really funny post about babies who look like old people.

So naturally, only months after heart failure and a lupus diagnosis, there I was back at work (part-time on medical leave) joking with the other high school teachers in the science department so that I wouldn’t have to share my lunch treats. 

(In all seriousness though, you can’t catch lupus from somebody else!)

I’m pretty into my bible and there’s one verse that stands out to me again and again (well, there are many actually) but today on my heart is Proverbs 31:25b:

“she laughs at the time to come”
 

I’ve always loved the relief that humour brings. It comes from a place of joy bubbling right out. But there are days full of trial and hardship that can turn into weeks and sometimes even months and it gets really hard to lighten up. Chronic illness is like being on a roller coaster, some seasons are up and others are down; all I can do is focus on how I respond to the changes I face. 

So I’m going to choose to look at the future with joy and hope because my identity is not in my illness. My identity is in Christ. 
I may take a lot of medicine, but laughter really is the best medicine for the soul.