TSC Talks Guest Nikki Lawley Exceptional Circumstances

TSC Talks guest Nikki Lawley is a former pediatric nurse, former blackjack dealer, and much more, who went from a full active life to chronic daily pain and other debilitating symptoms after suffering a traumatic brain injury while on the job in 2016. This is the story of how it happened, what happened and how she’s been able to move from existing in survival mode to having a life filled with hope despite ongoing challenges.

TSC Talks guest Nikki Lawley is a former pediatric nurse, former blackjack dealer, and much more, who went from a full active life to chronic daily pain and other debilitating symptoms after suffering a traumatic brain injury while on the job in 2016. This is the story of how it happened, what happened and how she’s been able to move from existing in survival mode to having a life filled with hope despite ongoing challenges. In her own words; “since my (TBI) injury, one of the things that I’ve learned more than anything is about living in the moment. My life changed a second and I can’t go back and write a new ending, but I sure can start now and I just have really become more human with this injury. ”

Here are a few relevant quotes from the transcript~full transcript linked below:

“So I began the search for a diagnosis. It was hell, I was always a respected colleague in the medical field. And every doctor I went to was like, we don’t understand why your symptoms are so long. We don’t understand why you’re not better yet. We don’t understand this headache that never goes away. How can you have a headache 24 /7. I’m like, I have a headache. 24/7. I have a headache that never goes away. And they basically told me that it was psychological at one point, and it was so de-humanizing for a person that’s never had mental health challenges and extreme situations, to be told, like, this is all in your head. Really nothing wrong with you. And it was like, Whoa, is it really in my head? No, and I mean, chill. When I say I was upbeat and happy, you know, I was different than I was before. I was really quick, really witty really able to, you know, snapback and had a really fun life. I’m a different Nikki and I’m differently-abled, but I feel that patients are the experts, and they are not heard. We are not heard from a patient perspective. When I tell the doctor, this medicine isn’t working. Why do I have to be in question?”

She goes on to say,

“It wasn’t like a panacea that like one day I just opened my eyes and oh, cannabis is here. Oh, I’m all better. That’s not how it works. Yeah, the universe has allowed me to explore. Honestly, it’s allowed me to be able to understand my injury, it’s been able to help me help others. I was able to see that cannabis isn’t so bad. It’s given me hope when I had none. and removing the stigma of this plant is honestly what’s in my heart that I really want to help do.”

On the state of Cannabis legislation,

“But I’ve learned so much about this plant, and there’s so much more to learn. And right. We’re just at the beginning, really any of us. Exactly. And New York State is looking at legalization. Yes. I keep seeing that. Is that gonna happen? Well, I was part of it for the last two years and nothing happened. And it was incredibly disappointing. Incredibly. They all got a position so they can make the most money off of it, I think there’s so much of that behind it. I don’t know all of it. But oh, no, you’re 100%. And I really didn’t understand that. Like I always just heard people say that, but let me assure you, that’s it. I’ve never seen a more corrupt system literally starting at the very, very top of how it all works together.”

“So I had to fight to just see the right providers, I spent so much money out of pocket. Workers’ compensation pays for next to nothing. Yeah, unless you have specific doctors that they are willing to pay for, you can’t get care, right. Everything was a struggle from medical massage, physical therapy, to cognitive therapy, you name it, they fought you on it. And then to have independent medical exams that are paid for by the insurance company, and they spend literally three and a half minutes with me. They look at all the medical records and say alright, she can return to work in six weeks, and she has no problems.”

For the full transcript: https://otter.ai/u/EDWInbGkx7qAhus2lgEyjYilyoM

Nikki’s links:
Linktree: https://linktr.ee/Nikkilawley
LinkedIn: https://www.linkedin.com/in/nikki-lawley-aa281517/
Facebook: https://www.facebook.com/nikki.lawley
Instagram: https://www.instagram.com/lawleynikki/?hl=en
Recent podcast: https://player.fm/series/coffee-party-usa-radio/i-want-access-4-all-nurse-nikki-lawley-stops-by-for-a-cup-of-joe
Blog article: https://www.mikesmedicines.com/medical-marijuana/cannabis-shopping-with-nikki-lawley-everyone-is-unique/

Nikki’s first interview with TSC Talks is here

TSC Talks: Exceptional Circumstances, Making it Work When Systems Don’t Episode 1~Lisa Consolidates

Lisa Larson is a mother, daughter, Senior Care Advocate, Learning Assistant, Co-Owner of TSC Talks, LLC and all-around awesome human being. Lisa started working on the podcast in 2018 after hearing the resilience and intensely complicated nature of the challenges people with Tuberous Sclerosis Complex were dealing with and offered to help me edit. The rest is history. We’ve evolved considerably since our early days and expanded the breadth and depth of our content, from purely TSC related to the broader “special needs” umbrella, then cannabis, cannabinoid medicine, and alternative health to where we are today, highlighting the cracks in the system, hoping to shed some light, inspiration and provide resources and information on practical ways to buck the system. Well….not buck it, but bolster, integrate and enrich our lives with stories of others who have found ways to improve quality of life without increasing dependence. Lisa’s story is the start of this content thread.

Here’s a few lines from the podcast transcript to give you a bit of a teaser…
“Lisa, in the last year, actually in 2020, has transitioned members of her family that are older, into her living space, and I’ve just kind of watched it from outside. And it’s been quite informative witnessing the challenges and the rewards. We thought it would be great for Lisa to come on. And just talk a little bit about, what made her decide to do this, how it happened, and, shed light on her process. I think this is a common theme for a lot of people is what do we do when our parents get older…”

Here is a link to the full transcript of the podcast: https://otter.ai/u/OpicltOInNrjw4bb31gSRck6oIo

Lisa’s links:
Facebook: https://www.facebook.com/lisa.o.larson
Instagram: https://www.instagram.com/lisalarson7/

TSC Talks Special Broadcast: The Tower of Babel Pt 2

TSC Talks Special Broadcast: The Tower of Babel, Pt 2 brings Brooke Alisha back to talk with host Jill Woodworth about parenting teens and young adults with TSC. Group homes are an option and Brooke and Jill discuss the pros and cons.

TSC Talks Special Broadcast: The Tower of Babel, Pt 2 brings Brooke Alisha back to talk with host Jill Woodworth about parenting teens and young adults with TSC. Group homes are an option and Brooke and Jill discuss the pros and cons.

Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Brooke is a mom, TSC advocate, Adult Regional Coordinator for the TS Alliance, and a hairstylist. Check out her Facebook here: https://www.facebook.com/brookey21

Jill Woodworth. (Human being. Writer,) Podcaster. Chronicler of being human. Parent of 5, 3 of whom have Tuberous Sclerosis Complex (TSC), each with varying effect. Committed to giving voice to the underdog, the oppressed, those for whom being heard is crucial to survival and quality of life. If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and most desperate of situations often lead to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market. Contact me on linked in or drop me a note on https://tsctalks.com or [email protected]. Offering podcast sponsorship, advertising, consulting, research, speaking and more.

Here is an excerpt from the transcript, click link for full transcript: https://otter.ai/u/Y6Z9mem7vmGFueMlLMBQnPsaV34

“We’ve done our best to advocate and support our daughters, we’ve had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they’re dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there’s a lot of challenges. So Brooke, why don’t you go ahead and give me a little bit of your background and talk about your experience.”

“Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could re-share that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we’re not gonna let you do life anymore. I was a cheerleader, ice skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I’d be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can’t leave my basement.”

“Moving on, I ended up getting pregnant have a daughter with Tuberous Sclerosis Complex at the doctor, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that’s fine. But that’s something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it’s just, it’s a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we’ve all been through a different differently. We’re on a different boat, Jill has different stories with her children that I’ll have with my daughter. But listen, that boat was sinking”

They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC and others who are dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment.

Brooke’s links: https://www.instagram.com/b3mor34u/
YouTube: https://www.youtube.com/channel/UCdP1KUfMBhO2l4bDHaciM0w
Jill: https://linktr.ee/jillwoodworth