Category: Stroke

Six Months Later…

Originally written 4/2/2022

For the past week I have been acutely aware that today is the six-month mark. Six months ago, I slept late on a Saturday morning, came downstairs to my family, had a conversation, and then my life was forever changed. The currency by which I interact at work, at home, and in my relationships was gone and I was trapped inside my head. Thankfully, with life saving medication (which I learned cost about $25,000!!) and therapy, I relearned. Six months later, I am told that no one can tell. I think that is a complete lie that people tell just to make me feel less self-conscious, but I’m grateful for those in my circle who are trying to protect me.

So, how am I feeling six months out from my stroke? It’s complicated. To put it bluntly, I’m a mess of emotions. I feel like I should be further—more toward my baseline, more like myself. I feel like it can’t possibly have been that long—like time has stopped or at least slowed down. I feel guilty for being frustrated when I should be grateful. I also feel grateful. I feel scared—like I’m waiting for the other shoe to drop—what if I’m not so fortunate when it does. I wanted this to be a blip on the radar of my medical history, an unfortunate hiccup in the fall that was long past. It’s not. It’s bigger than I imagined it would be at this point. It truly was life changing in ways that I’m still trying to figure out.

One of those ways is fatigue. Those who are close to me know that napping has always been my superpower. I can go from being active to napping faster than a sports car gets on the highway. I love a good nap on a rainy or snowy day, a Sunday afternoon nap, a vacation nap, or a nap in the car. However, in the last six months, naps have become increasingly frustrating because I need them even when I don’t want them. The other aftereffects of my stroke are even more obvious when I don’t nap. I have a nap scheduled into almost every day—instead of a lunch hour, I have a nap hour. Don’t get me wrong, the naps are glorious!! I just don’t want to need them. I want to be able to sleep for 7-8 hours at night and be able to function throughout the day.

Another one of those ways is aphasia. I have learned so much about aphasia in the last 6 months, including that only 7% of people have ever heard of it. The type of aphasia I have is primarily expressive. I can understand what people say, I can read and comprehend. I struggle with word retrieval, pronunciation, and spelling. I have never had to proofread my documents so much in my life! Sometimes I will be thinking a word to speak or type, and a completely different word will come out, or the correct word will come out, but it will be unrecognizable. I have awkward pauses in my speech. My aphasia is significantly worse when I am tired. Sometimes at the end of the day I struggle to get a correct sentence out at all. The hardest part about aphasia is not the actual speaking—it is in the energy it takes to speak understandably.

A third way is understanding directions—left and right. I have always been a little directionally challenged. I have always been one of those people who struggles to “go west a half a mile and then turn north”. I need “go toward the Sonic and turn left at the Quik Trip”. In the first days and weeks after my stroke, I was significantly confused by left and right. I failed that part of my speech assessment, I gave my kids inaccurate directions to places, I even struggle with which shoe went on which foot. Thankfully, I have gotten significantly better with left and right, but I still second guess at times (yes, I do hold up my hands to see which one makes the “L”). I have been doing yoga for several years—that is where I notice it the most. If I’m supposed to be doing one thing with my right hand and another with my left, that is a struggle! I can eventually get it, but it takes some serious thought sometimes.

 Another way is the emotional counterbalance between feeling so fortunate that my stroke wasn’t worse and was caught so quickly, being so scared that it will happen again, and I might not be so fortunate the next time, being frustrated that I’m not “back to normal” and feeling petty that I am frustrated. I know that all these emotions are valid. They are understandable for someone who has experienced something life altering at a young(ish) age. I would say that to anyone else, but I’m not as good at giving myself the same grace.

A huge positive that has come out of this time is a slower life pace. My stroke happened a few weeks before my professional role was scheduled to change. Even though my role didn’t change as a result of my stroke, I have been so grateful for the timing! I would have struggled to keep the pace in my job that I had kept the past 12 years. I worked an overnight shift 36 hours before my stroke. I will forever be thankful that it didn’t happen on that shift! My new role means no time on call, no covering shifts, no ridiculously long hours, and mostly working from home. It means that I have time to read, volunteer, and make social connections that I struggled to make time for before.

I am thankful for all the support that I have had as my friends and family have navigated through this with me.

Thanks for reading! 😊 EW

Back to Work

Originally posted 10/30/21

On October 25, 2021 I was released back to work “as tolerated.” My job role was changing due to an acquisition, and I didn’t want to be behind in learning the processes and procedures of the company we were folding into. As it turns out, I thought I could tolerate much more than I could. The first week wasn’t so bad. I had scheduled trainings but most of them were virtual, so I could nap in between. I truly took it easy that first week. Over the three weeks since then, I have been learning my new role combined with wrapping up the pieces of my previous role that I needed to—it has been a lot. If I’m being completely honest, it has been too much. There is a lot to be transitioned and staff to be reassured in the uncertain times that come with any learning curve. I have worked too many hours, which has often come with the price of a killer headache and napping rather than cooking dinner and spending time with my family. I know that the effects of my aphasia seem to be magnified with fatigue, and typically at the worst times for me professionally. For example, one afternoon this week, I answered a phone call from a state official and couldn’t pronounce my name correctly. Thankfully, she, and everyone else have been very patient and gracious even if they don’t know the reason behind my medical leave. I know I’m more bothered by it then anyone else. That doesn’t really make me feel better at the time.

My speech therapist recommended my return to work because it would create real world experiences in my communication that are difficult to replicate in therapy. She predicted that my speech and language would make enormous strides. That has certainly been true. I wouldn’t have made the progress I have made over the past four weeks if I hadn’t been working. Unfortunately, the balance is that it has not been as good for my fatigue or my mental health. Boundaries have been hard to set but they are necessary.

I continue to be thankful that I have come so far in six weeks. As I learn to balance myself and my work differently than I have had to before, things will continue to improve. These past weeks have been a lesson in patience with myself and flexibility with my ever-changing abilities and limits. I am learning. I am growing. I am healing. I am grateful.

Three weeks later

Originally posted 10/23/21

It has been three weeks since my stroke. The only lasting effects seem to be fatigue and continued speech and language issues. Cognitively and physically, I am fine. According to the research, fatigue is normal for 3-6 months after a stroke, even if it is minor. Low energy times are my new normal—at least for a while. Exercise and caffeine are going to continue to be my friends 😊 Speech therapy twice a week and at home activities have helped my speech immensely. I now have a daily routine of reading aloud to help my speech fluency, naming as many words as possible beginning with the same letter or in the same category to improve my word retrieval, and writing letters, texts and emails to help my spelling, grammar and context. To those who have been writing and texting me, please keep them coming—every text, email, or letter gives me and opportunity for practice.

The emotional toll my stroke has taken has surprised me. I feel like my brain has failed me. I realize that this is not accurate or rational since my brain has been damaged—this truly is not my brain’s fault. However, I have relied on my language and communication skills for innumerable tasks both personally and professionally. I am not myself without my ability to communicate. Another effect that has surprised me is the constant fear of another stroke. 25% of stroke survivors have another stroke within a year. That statistic applies to the general population—it is a little lower for people under 50 at their first stroke (about 18%). That is a low number, but still statistically significant. I had no pain with my first stroke, I was just talking one minute and not talking the next. The weakness, pain, vision changes, or any other typical symptoms weren’t present. If I were to have another, would it be as difficult to detect? I have had migraines for most of my adult life, and it is not uncommon for those migraines to have a visual aura or slurring of speech associated with them. I had my first post stroke migraine about a week ago, and I was rattled. Will my body fail me again? Will it be worse this time? Will I be alone? I am hoping that, with time, the anxiety I feel will go away. We’ll see.

I know that I have so much to be grateful for in this. My family was with me and knew to call 911. The ER doctor and the neurologist on call acted quickly, giving me the best change of a good outcome. The stroke was localized and contained thanks to the speed of treatment, causing minimal damage. Many people are not as fortunate. I truly am so, so thankful. 

(And, just for reference this post took me about an hour—and was still edited by a friend)

I had a stroke

Originally posted 10/15/21

On Saturday Oct 2, 2021, I had a stroke. I was talking to my family, and I reached to open the door and I couldn’t. I didn’t remember how a lock worked. I was scared. I walked over to the chair, sat down and the words wouldn’t come. I knew what I wanted to say but I couldn’t say it. My family was understandably scared. 911 was called. They arrived in minutes. My blood pressure was high. I got to take my first ride in an ambulance complete with an IV started along the way. Once at the ER, I had a CT scan and a chest x-ray, and of course the obligatory Covid test. Neurology was consulted and the decision was made to start TPA, a clot busting treatment. I was moved to the ICU and more tests were run. They checked out my heart and carotid arteries and did an MRI. I was soon able to form basic words, but the more complex words still wouldn’t come.

On Sunday the neurologist was able to confirm a stroke to my frontal lobe localized to my speech and language center. Those that know me know that an attack on my speech and language is a huge blow! The mystery was now why did it happen. I had 16 vials of blood drawn to complete a clotting study. I had an PT and OT eval, and I moved to a regular room on the neurology floor. I struggled with language but that was thankfully my only deficit. Unfortunately, that meant I couldn’t eat without a swallow study-which the hospital didn’t do on Sunday. I hadn’t eaten since dinner on Friday! Needless to say, I was hungry and grumpy. I had to practice saying my name and birthdate as those are questions that everybody who enters my hospital room asked. Communicating was exhausting! I had to think about forming every word.

On Monday I was visited by the Stroke Liaison to talk through what to expect now that I have had I stroke. He discussed therapies, medications, diet, and exercise and my increased stroke risk. I also finally had the swallow study!! I could eat!!! I was able to order a lunch tray, and my nurse gave me some juice and cookies to hold me over. My neurologist visited as I was getting my lunch to tell me I could go home. They had done all the tests and I was stable, so there was nothing more they could in the hospital. I would be sent home with new meds, a 30-day heart monitor, and an order for outpatient speech therapy. They still weren’t sure of a cause, they suspect that it was the estrogen I was taking for hormone replacement. I was immediately taken off my hormone. 

I know I was very fortunate that my stroke was localized, and the only long-term effect was my language. That is truly the best outcome. Still, it doesn’t feel the best. It feels like I am trapped in my head, knowing what I want to say but being unable to say it, write it, or type it. It is interesting how it didn’t just impact my speech; I struggle to write and type too. Every word is a conscious thought in how to form it verbally, how to spell it, or how to form the letters. I spend my days practicing. It is frustrating! Theoretically I will get my language back over time. Time will tell…

(Just for reference, this post took me almost 2 hours and was read and edited by a friend before posting)