Stroke
May 5, 2022 one year ago today I had a stroke, at 33 years old.
But this story definitely starts before May 5. On March 7 of last year, I had a Frozen Embryo transfer, this came with hormone supplements for 10 weeks after transfer. March 16 brought a positive test which was confirmed 48 hours later. Everything was looking good! April 8 we had our first ultrasound and again everything looked great! I was so excited to stop the hormone supplements April 28 which involved intramuscular injections every 3 days. The same IVF protocol countless women follow. I was already considered a high risk pregnancy because of having MS and being on the Ocrevus MS medication, so I met with my OB for the first time on May 3. She made the decision later that day that the following week I should start baby aspirin to try to ensure we prevent pre-eclampsia. On the way home I stopped for a photoshoot for the University Hospital MS Cabinet and the next day May 4 I got towatch my stepdaughter O in her race at school and coached her soccer team.
I thought May 5 started pretty standard to most of the mornings I had been having, but now I realize that it really didn’t. I had been experiencing “morning sickness” which was more like 24/7 sickness. I was only not nauseous when I was asleep. I was quickly put on a medication when I started to not even be able to keep crackers and ginger ale down, but even that just made things slightly more manageable. I was still constantly nauseous and vomiting or retching because I had nothing left in my stomach, but could at least keep some food down on the medication. Drinking water became impossible and by the time May 4 rolled around I know I was some combination of dehydrated and sore. I had a headache which I attributed to the dehydration, and my neck hurt from how hard I was vomiting. What I thought was that I had put my top rib out of place (which has happened to me several times before). That evening we were at a soccer game, I drove home like I normally would and even remember having to react quite quickly to a deer in the ditch without issue. Going to bed nothing stood out as being very wrong. The headache and neck pain were there but no worse than any headaches and neck pain I have had in the past. May 5 started earlier than usual because Mousse was just so adamant I wake up, but in other ways it was the same as usual, taking the nausea medication and eating crackers to try to ease the nausea. Thinking back now, I had trouble handling the nausea medication and I bit my cheek while I was eating the crackers. Then I tried to say something to Mousse, but it sounded all garbled up, both Paul and I just assumed it was the crackers in my dry mouth making me sound funny.
I got up to let Mousse out, but I struggled with snapping on her perimeter collar, thinking that I was just still tired and she was squirming too much. I started getting her breakfast ready when she started barking at the school bus picking up the neighbour kids (again a typical occurrence) so I took the container of pizza crust with me to entice her to get her back in the house. The box was in my left hand and without any explanation I dropped it, then I tried to pick up the crusts to put them back in the box, but my left hand just wasn’t working, like it was numb or something. We went back inside I cut up the crusts with a big knife without issue and gave Mousse her breakfast. Then I started getting mine ready. Since I was supposed to be going for blood and urine test for my OB that morning I knew I had to drink as much as possible and milk was the one thing I tolerated. So I got cereal with milk and then extra chocolate milk in a mug. I carried the mug with my left hand, the bowl in my right and the box of cereal under my armpit without issue. When I sat down to eat, it was like the food wouldn’t stay in my mouth. Finally I went to our bedroom to find Paul. I told him I thought I was having an MS attack. But most importantly that something was wrong and that I think I need help. He asked if he should call an ambulance. Because I wasn’t sure what was happening I said no, let’s drop O off at school and go the University hospital which is close to my MS neurologist. MS attacks while often scary are not always considered an emergency, so I went back to finish my cereal but I almost fell into the coffee table, it spilled my milk and my foot was in the milk and I didn’t even notice. I had trouble walking over to Paul in the kitchen. But then had no issues locking the door and getting into the car. On the way I started feeling very nauseous, but again this was not out of the ordinary. Projectile vomiting uncontrollably however was, we were almost at O’s school when it happened. Trying to stay calm not to scare her helped me focus, I reassured her everything would be ok and after drop off we stopped to clean me off. I had no problems getting out of the car and cleaning myself but I did have a problem with turning on the light switch with my left hand. We got back into the car and started driving, Paul gave me a container just in case. But as we got closer and closer to the hospital I felt like I was going to use it, but then everything got very loud, like he had started blasting the music or I was transported in the car engine and the next thing I remember is waking up in the ambulance. I started having a seizure and Paul called 911.
They told him to pull over and wait for the ambulance, we were only about 5 minutes from the hospital. I never stopped breathing and was seat belted so did not injure myself during the seizure. But it took the ambulance about 30 minutes to get to us. Paul said he could not wake me and that I didn’t start coming to until the paramedics started removing me from the vehicle. But I only remember being in the ambulance as they took me into the hospital. I looked at the uniform very confused. It was a Strathcona County paramedic, had we called the ambulance from home and I had imagined everything else? No, that was just the first ambulance available. Paul told me I could barely tell them my name but I was very clear that I was 11 weeks pregnant and adamant that they needed to keep the baby safe. The worst thing is that the University Hospital is great for strokes and neurology but does not have an Obstetrics department so a lot of the questions I had they weren’t sure. We knew that a CT scan can lead to problems for a baby so we asked if we could wait for an MRI. They weren’t sure if they could get me one right away, but at first the doctors didn’t think I had a stroke so they were comfortable to wait. I was able to get an MRI, luckily I am a pro with those from all my yearly ones for MS. 8 hours later it was determined that I did in fact have a stroke, and needed another MRI the next day to look at my head and neck. That evening I was taken up to the stroke ward to my new room for the next 4 days. I will be honest, most of the time in the ER was a blur until the next morning. I remember them making Paul leave and being so afraid.
The next day I had my MRI and then an assessment from an Occupational Therapist. It was rough, I was still having problems eating and swallowing, I could walk again my walking was not good, I veered to the left a lot even supported with a belt. Then I got put on new medications which made me so nauseous I could not keep anything down again. I went for heart tests to rule out certain potential causes of the stroke and all were normal. It looked bad and no one knew why it happened. My MS neurologist came to visit me as soon as she could and seeing her was reassuring knowing I had seen her recently and she knew my baseline right before the stroke. All I knew was that I was not about to give up. What not even my family knows is what happened when they weren’t there. I fought hard, every moment I could I worked my fine motor skills in my hands, I worked my grip strength with a stress ball, I read even when exhausted, I did puzzles, I worked on my standing to sitting, my balance, anything within reason I could. I would fall asleep reading and just keep going when I woke up. When I first started eating I was still having problems with swallowing even with being able to feel there was food left on my lips. By Monday when the OT came back to check my walking and cognitive function he couldn’t believe I was the same person. I was so tired from the new medications I just said I guess I am lucky. I will say I am lucky in so many ways, thank goodness we bought and renovated our house keeping in mind what would be useful should my MS ever get worse. Well wouldn’t you know it, it came in handy for stroke recovery and made it safe for me to go home. Living in a bungalow, having a shower with only a small step and a seat all made the OT comfortable enough to release me. And let’s me honest, I wanted out of the hospital!
It wasn’t until appointments at the Glenrose and other specialists over the months that followed that it really hit me. As much as I say I was lucky, it’s only part of it. I am lucky we realized what was happening relatively fast. I guess that’s why FAST is the acronym the help detect strokes. But what really made something clear to me was when one doctor looked me dead in the eyes and told me I did not have an easier stroke than anyone else, it was not mild, you can very clearly see the damage it caused on scans. I had a full on tonic clonic seizure, which also was very hard on my body especially while being 11 weeks pregnant. I am only doing as well as I am doing because I fought like hell from the moment I could. I joke that having lived #LifeWithMS for over 10 years gave me an advantage, but it is so true. Like with MS, what choice did I have, the only one who would suffer if I gave up is me. No one could recover for me, and I am used to fighting every single day so why would this be any different.
The year since my stroke had so many other hard moments, like losing my daughter and almost losing my life again. The loss was not at all related to the stroke or seizure, but my focus on keeping Elena safe was a power that definitely helped me survive. In the end it was determined that the vomiting and retching I experienced was severe enough to have caused a carotid artery dissection. Layers of my right carotid artery spontaneously separated which compromised blood flow to my brain and led to a stroke. The terrifying thing is the stroke happened while I was asleep, and I’m so grateful I woke up, I am so grateful I was able to stand up. One doctor said that Mousse may have saved my life that day by waking me up when she did and making me get up and get my blood flowing.
The physical recovery from the stroke was tough and made so much worse by the medication I had to be on to prevent any other seizures. I spent weeks moving from the bed to my couch, Mousse kept me sane, especially since I was not allowed to drive for months because of the seizure. After 4 weeks I decided I needed to try to go back to work and I did, luckily virtually was still an option, it was exhausting but my brain needed it. I knew exercise would help but because at the time it was unclear what had caused my stroke I was not allowed to lift more than 5 pounds and I had to closely monitor my blood pressure. My blood pressure was always almost perfect, but with no other answers it needed to be watched. My carotid artery was never expected to recover, and I was to treat it like an injury. Slowly I was cleared to do more and more and I made sure I did. Exercise was something I knew would continue my recovery and I was right it helped my artery heal. Exercise is also one of the ways I manage my MS, and not being able to do it was difficult. But my stroke neurologist finally encouraged me to start pushing the limits a little. Which is exactly what I have always done with MS, push the limit and then listen to my body. When you are laying on the couch desperate to be able to do anything you realize how much of a privilege it is to be able to move your body and I will never take it for granted.
Michael J. Fox recently said “with gratitude optimism is sustainable” and it’s so true. I was so grateful for the hospitals, for the doctors, for Paul and O, my friends, family and coworkers and my Floof that even on the hardest of days I was optimistic and I am still optimistic even though I still have struggles. I still have left side deficits and I still have a brain injury. But I am still here. I am still here. I survived a stroke.
