The following blog post was mostly written in June, 2021, not too long after I came home from the hospital. I never brought myself to finish it until now. But here it is! The stroke story. Or part of it. The goal moving forward is to post at least one blog post a month. I skipped last month so this month will include 2 posts- a part 1 and part 2. If reading about medical trauma is not your jam at the moment, skip these :). The inspiration is just around the corner.
Okay. How this all started.
On December 1st, 2019 I was home in Colorado for Thanksgiving. This was the first day I ever experienced numbness on the left side of my body. I felt the left side of my face, mouth, and tongue go numb as well as a couple of my left fingers. It was very startling, but not painful and went away after about ten minutes. We called the nurse on duty for my NY insurance and she sent me to the ER just in case. They did two MRI’s – with and without contrast, and found nothing abnormal in my imaging. I know now that if they had done a scan that included my neck (which is apparently standard procedure at the stroke center/ER in Atlanta for something like this) they would have found something. I left with a diagnosis of a “complex migraine” – something I had never heard of before but after talking with a few friends I learned it was more common than I realized. Complex migraine essentially meant to me – we don’t know why this is happening – there is so much we don’t know about migraines. However, I wasn’t afraid. It seemed harmless, more-so like my nervous system trying to tell me to calm down as it often does.
I didn’t feel anything abnormal in this way for about 9 months. Then, the numbness came back in the late summer/early fall of 2020. Every day for about two weeks – multiple times a day. I would have the numbness sensation – always on the left side of my body – face, back of head, arm, fingers, hand, back of hip. Never down my legs. It was always followed by a severe migraine – sharp pain in my temple. These episodes were much more intense than what I felt in 2019 and much more terrifying. I began to loose control over my left hand. I remember one morning waking up early for work and dropping my phone as I was walking towards the bathroom. I couldn’t hold it. I woke Joe up in a panic and he tried to massage feeling back into my hand. Eventually it came back. One evening the whole family (In Colorado during pandemic times- mom, dad, Joe) was watching a movie on the couch. My hand seized up. My fingers became like claws, curling, and I couldn’t get them to relax. Again I began panicking and my Dad did his best to calm me down and massage out my hand so it could straighten again. This had to be more than I migraine. I was having trouble typing normally. I was completely drained and exhausted. I was terrified that I was dying or had some kind of degenerative disease. I had a Telehealth appointment with my PCP in New York. She said to go to the ER if the episodes got worse or didn’t go away. I very much did not want to go to the ER – it was the height of the pandemic (one of them) and pre-vaccine. I considered flying back to NYC mid-pandemic, but was hesitant to fly back to the epicenter – especially while living with my parents. I didn’t want to bring anything back to them. I tried to see multiple Neuro’s in Colorado, but they would not see me unless I had health insurance in the state. I looked into getting additional health insurance in Colorado – which was a nightmare and expensive. I eventually scheduled an appointment with a Neuro in NYC and bought flights to go to my appointment. Then a doctor friend of mine recommended a chiropractor who specialized in migraines. I started to see him and it was pretty incredible how quickly he helped me. My symptoms didn’t go away entirely, but the episodes happened much less and were no longer followed by sharp pain in my temple. The fact that I was improving made me think there must have been some weird nerve thing going on, and I was no longer dying. I know now the adjustments he was doing on my neck could have killed me, or at least caused a more severe stroke. I had a web in my carotid artery that was blocking 65-70% (more in some areas) of the passageway. Lucky for me he was very skilled at what he does.
I got through the rest of the year with less fear, but was definitely still exhausted. I was starting a running plan built by my wonderful friend and running coach – Annie Simpson. I didn’t understand why I was running 13+ minute miles. But just assumed I was very out of shape. I didn’t think too hard on this and before we knew it the year was over and time for Joe and I to move to Atlanta.
In January I went to NY to move out of my New Jersey storage unit. I saw a neuro in NY ‘just in case’ before I moved and no longer had my NY health insurance. He diagnosed me with complex migraines and had me tested for carpal tunnel. In a follow-up he explained that I did have mild carpal tunnel and wrote a script for me to go to PT/OT for my hand. If he had really been really listening to me- this would not have been the diagnosis. The fingers affected in my hand are not fingers that carpal tunnel affects. They are different nerves.
In ATL things were going fine. I had tons of back pain and still had trouble with my hand but assumed it was a nerve issue and got a bunch of ergonomic supplies, a better chair, and a standing desk from my employer. My hand would go numb from time to time but it was never a full episode.
Then, the week stuff really started to shake up: Starting June 6th.
Sunday, June 6th.
Joe and I are in NYC for a work event. The NYPD vs. FDNY football game. It was 98 degrees F and we were outside almost the entire event. eThe numbness on the left side of my body came back. A couple of episodes my speech started to slur as I was communicating to my team. I couldn’t tell if I was imagining it so I asked a friend to confirm if I sounded different. A team-member nearby came up to me, “I hate to tell you but you’re probably about to throw-up from heat sickness. That just happened to me.” I chugged water. I did not throw up. I had another episode of speech slurring before the event was over. The whole Uber ride back to our hotel I felt tingling on the left side of my face. I do not go out as planned that night or even to the roof bar with Joe and friends. I stay in my bed and order a pizza.
Monday.
Fly home to ATL from NYC. I am wiped.
Tuesday.
I attempt to work. Everyone is wiped from the big event. Some people took a sick or personal day.
Wednesday.
I am still feeling “bad” so I take a sick day. I have a voice lesson scheduled with my teacher. He can tell something is off with me. He asks what is happening and I tell him the numbness episodes came back. He won’t let me sing, saying if half my body is going numb we can’t be sure my vocal chords are functioning properly. He urges me to see a doctor to look into this again. Once I realize he really won’t let me sing I tell him about the slurred speech. He insists I go to the doctor and ask for an MRI.
Later that day we have a zoom meeting scheduled for our theatre company. At one point during the meeting I try to speak up about something and can’t. I can’t get the words out. I can’t speak. I know what I want to say but I my tongue won’t work. Joe thought I was having trouble thinking of what I wanted to say. This was not the case. Now I am scared. Now I know something is wrong.
Thursday.
I remember waking up and my tongue was very soar. I knew this was from the episode the night before. I did not go to work. Went to see the PCP on duty (mine was on vacation this week – I had just had my yearly physical the week before). This doc seemed to think I was a bit hysterical (Which I was. For good reason.) but ordered me a rush MRI. The quickest available was Friday.
Friday.
I attended a morning meeting but spoke as little as possible. I was exhausted and fuzzy.
Afternoon, rush MRI. By the time we are driving home the PCP’s office is closed. I try to call anyways with no luck. I am worried I won’t get a call until Monday with the results.
That evening Joe and I started to relax. I made some margaritas and popcorn and we sat on the couch watching tv.
12:00am Keno (My husky dog) comes up to my face and barks. Barks! He never barks. Let alone howls like most husky’s.
12:15am…. So technically Saturday, I get a call from the PCP. She first asks if I am alone. I tell her Joe is with me and put her on speakerphone. She tells me that the scans show significant signs of stroke. Multiple strokes. “So you weren’t crazy” (Oh really? Thank you for affirming that you bleepity bleep bleep). There is some mass in my neck that looks like a big clot. She tells me it’s possible I’m having a stroke or about to have a big stroke and to head to the hospital immediately. And to not move my neck or head too much. We rush to the hospital. We make it. They knew we were coming and were ready for us.
To be continued…