Tawnie the Neuro Mermaid bled into her brain for a week before the doctors in Ohio took her seriously. When the neurosurgeons began treating her they were shocked she was still alive. Still, the hemorrhagic stroke ended her dual career paths in in bar tending and special education. Naturally, Tawnie came up with an alternative. She became a mermaid, an entrepreneur, and an advocate and supporter of other members of the stroke community. In this long overdue Strokecast interview, Tawnie shares her story of trying to get treatment, how she got into mermaiding, her experience with cannabis, and the power of the stroke community. If you don’t see the audio player below, visit the original blog post on the Strokecast website here. Click here for a machine-generated transcript Who is Tawnie, the Neuro Mermaid? As Tawnie shares: At 28 I had a hemorrhagic stroke go misdiagnosed for a week. That’s right I was bleeding in my brain 🧠 for a week so I have been documenting & sharing my recovery. As a former special education teacher I’m interested in retraining my brain, biohacking, & helping others become 1% better everyday. Working from home & running a business from my phone gives me the flexibility & support I’ve always wanted. I enjoy helping others do the same! I love sharing tips tricks & my life follow along & ask any questions 🤗 I look forward to connecting Https://msha.ke/tawniethemermaid Medical Records One of the challenges Tawnie had in getting her stroke diagnosed was a GIGO problem — Garbage In, Garbage Out. The initial doctor she talked to failed to recognize her symptoms as a those indicating a stroke, and he made the notes in her records. That was the first problem. It was the garbage in. Then, as Tawnie sought the advice of other doctors, they referred to her initial records, took the garbage in as truth, and failed to do their own assessment of Tawnie’s symptoms, and produced recommendations based on that initial assessment. Garbage out. It took a nurse who hadn’t seen Tawnie’s medical records to recognize that she was having the medical emergency that would ultimately lead to a helicopter evacuation. In the US, at least, your medical records are yours. You are entitled to them. If you use the popular My Chart patient portal, you may have direct access to them. If not, you can reach out to your hospital, doctor’s office, or other medical practitioners, and get copies of them. You can also get copies of your scans, X-rays, MRIs, etc. The most important reason to get them is so you know what is actually in them. Whether you can correct them is another matter, but if there is incorrect information in them, you should know about it so you can give that context in future conversations. The information in your records may impact future treatment. Nake sure it’s not garbage. Migraines Migraines suck. I think we can all agree on that. So far I’ve only had one, I think. It was in the hospital after stroke. I felt my vision narrowing at the edges. It reminded me of how my vision would be impacted the flash cube in the Kodak Instamatic in the 1970s. Of course Tawnie’s life long migraines were much more severe. She did get treatment for them, but no one checked for the aneurysm that was waiting to rupture. Tawnie powered through. Carmen De La Paz also experienced migraines for years before her stroke. She thought they were just dehydration so she would make a habit of drinking more water to address them — until one day one of them ruptured. Sometimes the cause of a migraine is an aneurysm in a blood vessel. Caught early, aneurysms can be treated before they turn into debilitating hemorrhagic strokes. The patient needs to seek treatment, though. The doctor has to order tests, like an MRA, and the insurance company has to agree to pay for it. In Tawnie’s case, the first two things happened. The insurance company failed by refusing to approve the scan that could have prevented Tawnie’s stroke. You Look Fine! Many people will tell a survivor things like: You look great! You’d never know you had a stroke! Looks like you’re all better now!! When people say these things they usually mean well. In reality, though, they can feel quite hurtful. Many survivors live with invisible disabilities — cognitive, emotional, communication and other challenges that other folks can’t see. Statements like those above ignore these challenges. After a few months, outward signs of the stroke may have dissipated, but internal struggles remain. Compliments like these invalidate and undermine the challenges that may still be part of our lives. They also make it easier for folks to blame us for being “lazy” when we have a high-neurofatigue day and simply need more sleep. Mermaids Tawnie embraced mermaiding. There is a community online of folks who put on tails and fins. They lounge around the pool or go swimming with their tails and celebrate the life style and community. It’s interesting to have an episode with Tawnie the Neuro Mermaid right after I came back from the JoCo Cruise with its own substantial pod of mermaids. Tawnie’s motive for becoming a mermaid is a great approach. The challenge with returning to a hobby after stroke is that you remember how well you used to do it. And if your ability to perform the same task is impacted by your stroke, it’s frustrating. With a new hobby, though, as part of your new life, you don’t have a pre stroke version of the experience to compare it with. So pick up a new hobby and start from scratch. You can only get better at it. Survivor Sundays Each Sunday, Tawnie joins Maddi Niebanck for Survivor Sundays on Instagram. It’s an informal live show that gives Tawnie and Maddi the opportunity to connect with each other and the broader stroke community. It’s an open forum for folks to share their experiences and ask questions. It’s one of the positive examples of what social media can do in our lives. It lets people who need to connect interact with each other. And that’s just what many of us need after stroke. To join Tawnie and Maddi, simply follow them on Instagram at @TawnieTheNeuroMermaid and @MaddisStrokeOfLuck. The show was also pivotal in Tawnie’s decision to go public about her use of cannabis after stroke. Folks would ask about it during live broadcasts, and Tawnie would follow up in private afterwards. Eventually, she decided it would be better to simply be more straightforward about her experience. Budtenders and Weedmaps I did learn a new word in this episode: Budtenders. These are the folks that work at the legal medical and recreational marijuana dispensaries in states where it is legal. I just like the wordplay on bartenders. So what should you do about cannabis or marijuana? First, ask your doctor or medical team. Due to the fuzzy legal status they might not be able to tell you much. You can ask about the latest research, or ask if it is specifically contraindicated for any of the medication you take. Beyond that, the budtenders in the dispensaries can provide a wealth of information about the products available in your particular community. To find a dispensary, if it’s legal in your community, Tawnie recommends Weedmaps. It’s like a Yelp for cannabis. It’s a place for you to do additional research. Since I live in Washington state, I asked my doctor about it while I was inpatient. Granted this was 5.5 years ago so recommendations may have changed. This doctor said, basically, “If it’s not already part of your lifestyle, now is not the time to start.” This doctor also said that if I was have issues with appetite or nausea their recommendation might be different. So if you’re interested in exploring cannabis, check with your doctors, talk with other members of the community who do choose to partake, consult with tools like Weedmaps and the budtenders in your area. Whatever decision you make, do the work to make sure it’s the right one. Hack of the Week Tawnie has a busy life and lives with executive function disabilities brought on by her stroke. She’s developed quite the collection of tools to help her navigate this life. First, she relies heavily on calendars, alarms, and notes on her phone. It’s a great tool to outsource those brain functions that were impacted by the stroke. Tawnie is also a big believer in journaling. She does this both in writing and online. Chronicling her recovery on Instagram has been a way for her to see her own improvement, stay connected with her journey, try new things, and share the results with the community. You don’t have to share as publicly as Tawnie does, though. Use your phone to take pictures, record video, record audio, make notes, and more. The further you get in your recovery, the more valuable these resources become. Simply looking back at these records shows us how far we’ve come. Tawnie also echoes what Kristen Aguirre told us a few years back, and what other survivors have found helpful. Practice gratitude. We’re here, and that’s a start. Looking for things in our life to be grateful for can help reframe our experiences and inspire more hope for the days to come while making the present more pleasant. Recovery is not an easy path. It takes work and time, and Tawnie talks about how you need to put in the time and energy to retrain your brain. There’s no shortcut. You have to do the work Finally, one of the most important things Tawnie suggests doing is to reach out to the community. That could be a local support group. It could be an online community. It could be following the various stroke-related hashtags on social media. It could be listening to the various stroke-related podcasts out there. Or it could be joining live broadcasts on Instagram, like the Survivor Sundays that Tawnie and Maddi do. Links Where do we go from here? Follow Tawnie on Instagram at http://Instagram.com/TawnieTheNeuroMermaid Share this episode with someone you know by giving them the link http://Strokecast.com/TawnieTheNeuroMermaid Suscribe to the Strokecast newsletter at http://Strokecast.com/News Don’t get best…get better More thoughts from Tawnie
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This post is Copyright: Bill Monroe and stroke survivor Tawnie Romero-Golic | March 27, 2023
Strokecast: The Stroke Podcast for Survivors, Clinicians, Care Partners, and all our Brain Injury Colleagues