Yes, you read that correctly. I was admitted to the hospital about one month ago after having an ischemic stroke. I lost my ability to speak clearly, smile, use my right hand, and swallow liquids for a couple of weeks. I wanted to write down my story because I know in the months and years to come I’ll likely forget how it felt to be in this moment. Also, maybe other people will be able to relate to my experience. As much as I love writing about traveling, I think it’s just as important to share the lows of my life as well. Social media can be deceiving as we’re constantly comparing ourselves to the highlights of other people’s lives.
The days before the stroke
It started on Monday morning July 30th when I woke up with a migraine aura. For those of you who don’t know what it’s like to have an aura, I’ll try to explain. You know when you get your picture taken and the flash is so bright that it takes a couple of seconds for the spots to fade from your vision? Well, that’s what an aura feels like to me. It’s bright spots (usually curvy lines or circles) that form in my peripheral vision and can last from several minutes to hours. For me, the aura is usually the only migraine symptom I suffer from, minus occasional nausea. They occur for me about 4-5 times per year, and fortunately, they never manifest into full-blown attacks with severe headache and vomiting. As soon as I notice the aura I take some medication (usually Excedrin), hydrate, and lay down in a dark room and that seems to do the trick.
I decided to go to work on Monday despite the aura hoping my symptoms would fade like they normally do. I work as a physician assistant and the majority of my day is spent in front of a computer talking to patients. It’s difficult to look at a computer screen when you have an aura, so I stayed for as long as I could tolerate it, but after a few hours I decided to take a sick day so I could go home and lay down.
Fast forward to Tuesday morning and the aura was still there which was unusual for me. I had the day off so I was able to stay home and relax. I noticed later in the day I was having some trouble swallowing water, but I just brushed it off thinking I wasn’t paying attention. I was also having a hard time concentrating and finishing tasks. I started to fold some laundry and stopped halfway, I tried to organize a bookshelf and left half the books on the floor, etc. Since I wasn’t accomplishing much I decided to lay down and meditate. Looking back on it now I think the stroke symptoms were slowly progressing during that time, but all my symptoms were so mild and vague that I didn’t think much of it. I was going about my normal daily routine, I even went to the grocery store that evening and called a few friends on the phone to catch up.
I woke up on Wednesday morning and I just wasn’t feeling right. I can’t explain the feeling other than to say that I felt so anxious and had the urge to shake my entire body hoping it would re-center. I thought maybe I was having severe anxiety, so I emailed a counselor I had seen previously and was able to get an appointment scheduled later that day at 11:00 AM. I attempted to go to work, but after being there for an hour I started to have a panic attack due to feeling so off. I couldn’t concentrate or process what people were saying to me, I was breathing fast, I felt uncoordinated, and then I broke down in tears.
Clearly not in a very stable state of mind, I decided to leave work early and go sit in the waiting room for my counseling session. It was during the session that my speech started to slur and my counselor suggested that I get checked out by a doctor afterword to be on the safe side. So I got in my car and started to drive to urgent care, but stopped because it felt unsafe to drive. It was at that moment my symptoms started to piece together in my mind and I decided to check my face for any asymmetry. I pulled down the mirror, smiled big, and that’s when I noticed I had a right sided facial droop. I knew this serious and decided to go to the emergency room instead of urgent care.
Luckily I work at a hospital so I didn’t need to go far. I didn’t want to go to the emergency room alone so I walked back to the clinic I work at to see if my friend would accompany me. When I saw her I said, “I think I need to go to the ED”, I pointed to my face, and smiled. Her eyes got big but she calmly said, “Yes, I think we should walk over there now actually let me get my things.”
My first emergency room visit
As we were walking to the ED my friend mentioned that even though it was unlikely I was having a stroke, I should tell the person at the check-in desk that I was having one to be on the safe side. So that’s exactly what I said and they immediately called me back into the triage room. After a few questions from the nurse, she pulled a doctor into the room to assess me. The doctor asked me to make some funny facial expressions like raising my eyebrows and smiling as big as I could. She then looked at the nurse and told her to call a stroke code.
I think I was pretty calm up until this point, but when the doctor said the words “stroke code” I immediately started to cry. Could this be happening to me? I’m only 30 years old, I’m too young to be having a stroke! Is it going to progress to the point where I can’t walk or talk like some of the patients I’ve taken care of? Luckily I didn’t have much time to contemplate the answers to these questions because they immediately got me into a wheelchair and rushed me to the CT scanner to scan my brain.
The CT scan took a few minutes and I was told it was normal, but that I needed to get an MRI scan to completely rule out a stroke. Strokes caused by brain hemorrhages appear on CT scans, but ones caused by blood clots or ischemia only show up on MRIs. So I waited about an hour for an MRI scan, and after the scan was completed the physician assistant from the ED was in my room telling me that yes indeed, I was currently having a stroke. My response, “No.” Her response, “Yes.” My response, “No.” Her response, “Yes.” My response, “How could this happen I’m only 30 years old?” Her response, “I’m not sure, but you’re being admitted to the hospital and hopefully, the neurology team will be able to answer that question for you.”
My first hospital stay
I spent a total of four days in the hospital. The right side of my face was paralyzed. My speech got worse and I was slurring/studdering every other word. I couldn’t swallow without tilting my head down. I couldn’t write my name or pick up small objects. Texting was difficult. I was zoning out and having a hard time reading. I couldn’t put on makeup and brushing my teeth was a challenge. It was very scary, but I knew I had no control over the situation and just had to let go. I knew that my symptoms would likely improve over time, but I had no idea how long it would take or if I would have any permanent side effects as a result.
At this point, I was more concerned about getting an answer as to why this happened to me in the first place. I think I was a little delusional and still in shock because when my boss came to visit me in the hospital on Thursday I told her I would be back to work on Monday and not to worry! I really wanted to pretend like this wasn’t happening.
Contrary to popular belief, I don’t find the hospital to be a very healing environment. I had to be woken up every 2 hours (yes, every 2 hours) so they could perform neurological exams on me to make sure my symptoms weren’t progressing. On top of that, I was getting my vital signs checked and blood draws done throughout the night. Where are you? What’s your birthday? Who’s the current president of the United States? I seriously wanted to ask if they could stop asking me that question because it made me depressed.
When the neurology team came to round on me the next morning I met my attending physician, Dr. Dodds. I immediately loved her. She told me she had just given a lecture the day before on strokes in young people. She even included a scenario of a previously healthy 30-year-old female that presented to the ED with stroke-like symptoms. “So you did this to me.” I joked.
I could tell she was very passionate about her job. She wore ruby red slippers daily to raise awareness for young stroke victims. She explained to me all the potential causes of stroke in someone my age including hypercoagulable states, heart problems, and even migraine headaches with aura. She told me that people with aura are at an increased risk for stroke, and since I was having an aura for several days prior to the incident this was likely the cause of my stroke. However, all other potential causes would need to be ruled out.
They drew a ton of blood work and all of my tests came back negative. The imaging of my heart showed a finding that I, and several of my colleagues, had never heard of before called a lambl excrescences (extra piece of tissue attached to the aortic valve of my heart). The cardiologist wasn’t very impressed by this finding and said that it likely didn’t cause my stroke, but he couldn’t be 100% sure. He said blood flows so fast through that area of your heart that it would be highly unlikely for a blood clot to form there. He recommended that I wear a heart monitor for 30 days to be sure that I didn’t have any underlying irregular rhythms.
So what caused my stroke?
Since all my blood tests were negative they’ve concluded that the cause of my stroke was a migraine with aura. The mechanism of how a migraine causes a stroke is unknown and it’s very rare. The doctors really didn’t have a lot of information to give me, and I have mixed feelings about this diagnosis. For one, I’m grateful that all my tests were negative and they didn’t find anything major wrong with me, but that doesn’t take away from the fact that I still had a stroke. It’s not very reassuring to hear doctors say they have no clue why this happened to you or what the likelihood of it happening again is. They basically told me since it’s so rare to happen in the first place they would think it wouldn’t happen again.
I just want to know how I can prevent this from ever happening in the future. Just tell me what caused this and I’ll never do it again I wanted to say! Was it stressed induced? No. Was it because I worked overtime last week? No. Was it because I had a few drinks over the weekend? No. The doctor reassured me there was nothing I could have done to prevent this and I did nothing wrong. I was glad to hear this because her words allowed me to let go of my own self-guilt. I had made up this story in my head that I somehow did this to myself and it was all my fault.
All the doctors told me I’m very lucky to be young because I’ll likely make a full recovery. My brain just needs time to create new pathways around the injured area, and can I just say I’m so grateful that it’s capable of doing that! Human biology is amazing.
Challenges I’ve faced
I consider myself very fortunate to have been considered “healthy” over the past 30 years, and now that’s no longer the case. I used to fill out those papers at the doctor’s office without thinking twice because I knew I had nothing to add. Now I need to carefully read them and check the tiny box next to stroke. It’s an odd feeling when you go from being healthy to having a critical condition overnight.
I’ve also had to deal with a lot of anger during this recovery process. How unlucky am I to have a stroke at 30? Haven’t enough bad things happened in my life this year already? We all go down these spiraling paths at one time or another. I have no risk factors for stroke, not one. I eat mostly a vegetarian diet. I don’t smoke. I drink alcohol socially. I exercise. I sleep 8+ hours a night. I’ve dedicated a huge portion of my life to staying active and living a healthy lifestyle. So to put so much time and focus on living a healthy lifestyle and then to have a stroke anyway is pretty infuriating. It’s just unfair, but it’s life.
I’ve also lost all of my vacation days as a result of this and you can imagine how terrible that is for someone who loves to travel as much as I do. The week before this happened I’d been approved to take 5 weeks off to go on a trip to Australia to visit a friend. Again, it’s something I have zero control over and will have to come to terms with eventually, but I’m definitely mourning the loss of all my vacation days. As you know from reading this blog traveling is one of the great loves of my life. I just can’t get enough. I literally want to go everywhere. I love the way it makes me feel and the confidence it brings me. I never feel more empowered, brave, and sociable than when I’m in a new country meeting new people. I love the entire process. Everything from the planning stages… to the trip itself… to the lifelong friendships and memories I come home with. It’s a feeling unlike any other.
What I’ve learned
I definitely have a new respect for life and how quickly things can change. Over the years I’ve come to learn that happiness is really a choice, and life is all about how you choose to react to the obstacles in your path. I could choose to be bitter and angry about this or I could choose to stay positive. I believe this happened to me for a reason and I’m determined to take away only the positives. One thing I know for sure is it’s definitely made me slow down and reevaluate my daily life in North Carolina. I was spreading myself pretty thin before this happened, and as a result of having the stroke, I really can’t multitask anymore. This could be thought of as negative, but I’m actually really enjoying only being able to do one task at a time. I’m constantly reminding myself to slow down and appreciate what I’m doing at the moment, so my mindfulness has really increased as a result.
I’ve also learned a lot about control and vulnerability. For one, there is no use in trying to control every aspect of your life because it’s just not going to happen! I’m stubbornly independent. I do everything for myself and I’m very proud to be able to say that. When I got sick it forced me into a state of vulnerability that I was so unfamiliar with. I had to allow people to help me. (Easier said than done.) When I left the hospital I could barely function. Basic tasks like showering took a lot of energy and I was unable to cook. I was afraid to drive. I was also sleeping a ton. Luckily I have some wonderful friends, and multiple people offered to take care of me until I was able to support myself again. I stayed with a good friend for two weeks and then my brother flew down from Ohio and helped me transition back into my apartment.
I also have a new respect for my patients. As a result of this experience, I think I’ll be able to relate to more people now. Not that I wasn’t empathetic in the past, but I feel like my words carry so much more meaning now. This was my first experience as a patient instead of the provider and it really gave me an entirely new perspective.
Where I am now
I’m happy to report that most of my symptoms have resolved minus some fatigue, headaches, and multitasking ability. Naps have helped a lot 🙂 My facial droop resolved after about a week. My speech was back to normal by the third week. I can write my name again. I’ve completed one month of occupational therapy and was discharged from speech therapy after the first session. I don’t have full strength back in my right hand, but my occupational therapist told me I’m well above the curve for where I should be at this point.
I’ve been trying to do something physically active daily like yoga, running or biking. To work my brain I’ve completed several crossword puzzles, LEGOS, and coloring books all provided by my wonderful friends. When my brother was here we even completed a 1000 piece puzzle that took 4 days to finish! I’ve been cleared by my doctors to travel and go back to work part-time with the plan to work my way back up to full time in a few weeks.
I want to end this by saying I’m so overwhelmed by the support from my friends, co-workers, and family. I just want to thank everyone who reached out and told me they were thinking of me during this time, it really made a huge difference. I won’t let this define me, but having a stroke is now part of my story.
So I followed up with my cardiologist three months after my stroke to have a repeat ultrasound on my heart. The extra piece of tissue that they saw on my heart valve in the hospital was no longer there. So my cardiologist concluded that maybe it wasn’t tissue and it was a blood clot? Again, he couldn’t say 100%. It’s interesting because he said in his career he’s never seen a blood clot form on an aortic valve because blood flows so fast through that part of your heart it would be almost impossible for anything to stick there. But on the other hand, something was there two days after I had a stroke and now it’s gone after being treated with Plavix and Aspirin. So his theory is that it was a blood clot and part of it broke off and caused my stroke. Either way (migraine or clot), he wanted me to stay on Plavix for 6 months which I’ve now completed with no issues. I have to stay on baby aspirin lifelong which isn’t a big deal for me.
I’m so sorry this happened to you but you have dealt with it beautifully, and will come out stronger than you ever thought you’d be. I’m proud of you Jess. You’re right. This doesn’t define you but rather shapes who you are and who you will become. Love you!
Thank you for the kind words Erin!! So sweet 🙂 Love you!
Hey Jess! What a wonderful writer you are! You will be stronger because of how you are choosing to deal with this experience. I’m so glad you are feeling better!!!! Fear not….Australia will just have to be postponed for a little bit! See you soon, my friend!!
Thanks Linda! You’re right, I will get to Australia eventually 🙂