Epilepsy: What to Buy (a growing list)

It seems like each week we learn something new about Epilepsy and all the things we need to do for our Epilepsy Warrior.

The list of things to buy seems endless and it appears that there is no shortage on companies looking to make a buck on the real fears that we parents have regarding our child’s safety and general well being.

I am still doing my research and each day I find new things that we may need. This will be a running list of items that might be helpful. If you have any suggestions on what to add, please send me a message and I will try to add it to the post.

IN NO PARTICULAR ORDER (and no one has paid me any money to speak to these items):

  1. Smart-Monitor we use the Premium version of this for our daughter while she is at school. We had to buy a Samsung Galaxy Watch Active2 as she has a Samsung phone. This is also compatible with Apple devices. We had this worked into her Seizure Action Plan at school- the watch is designed to detect Tonic-Clonic seizures and will send a text with GPS coordinates to my husband, my bother, the school nurse, and myself. There are many companies out there that have similar features, it is all about preference.
  2. Breathe-zy Anti-suffocation Pillow I first found out about this pillow from the Epilepsy Foundation. You can order off of Amazon from the company directly. Shipping is steep but it is coming from the UK. They also have a mattress topper.
  3. Sam-i Monitor I don’t have this monitor but many parents have this monitor and I hear, overwhelmingly, how wonderful it is.
  4. Kasa Cameras– I have Kasa Cameras all over my house so that way if I am doing something in another room I can still keep an eye on my daughter. I bought the cameras off of Amazon and just downloaded the app. The app also has limited cloud storage for free or you can upgrade to a paid version, so far, the free app has been sufficient for my family’s needs.
  5. USDA Certified Organic CBD – this is the CBD we buy as through my research I feel that this company has full transparency and offers a truly great product for the money.

Do you have anything you would like to submit to this growing list? Send me a message and we may just add it to the list!

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Warrior Moms Podcast

This post is LONG OVERDUE as I am already into month 3 of the Warrior Moms Podcast! Y’all know that I am a one woman show when it comes to anything on the UnSocially Acceptable front but hopefully that will change sooner rather than later.

This last year+ has been met with lots of ups and downs, with Scarlett’s epilepsy becoming the unwanted member of our family. I remember sitting in her hospital room back in August thinking to myself, “So… this is our life now. We will always have Epilepsy to consider. Epilepsy controls us.” And… again in November and December.

I armed myself with knowledge because, truly, knowledge is power. I am very much a data-driven person (remember, I am trained research and legal analyst by all rights and purposes). Once I started to delve into the world of Epilepsy a few trends emerged – the biggest was that there is no really community of support and awareness. I wrote a few blog entries and… then Covid and the Pandemic hit and depression set in.

I very much followed that narrative until one day I decided that I didn’t want to follow that narrative. I wasn’t going to let Epilepsy and the Pandemic dictate how our lives were going to be. I wasn’t going to hold a fixed mindset. Life is what you make it and my motto is “Everything is Figureoutable.” I was going to figure this out. I was going to find a way to advocate for my child and all the other Warriors out there.

There’s a saying the Epilepsy world – that “science is 30 years behind.” I feel like that community support and awareness are equally behind. There was just SO MUCH TO WRITE. It was overwhelming. How was I going to reach the masses when I would be tied to a desk and keyboard trying to navigate my way through all the different forms of epilepsy and it’s comorbidities? There really was no way for me to do that and do all the things I needed to do both inside and outside my home.

Then came a tough love talk from my friend on the heels of a Rise Live Event created by Rachel Hollis, et al., of The Hollis Company. That tough love talk coupled with the inspiration-injection I had just received from Rise lead to the creation of the Warrior Moms Podcast. Have I ever podcasted before? Nope. Had I ever listened to a podcast prior to this conversation? Also, nope. But I knew it was the right path for this community. I ordered a book on Amazon. I read it. I didn’t understand most of it. I ordered a microphone – it was the wrong kind. I ordered a second microphone, also not great but it gets the job done and then I set a date for the first episode.

I was convinced that the show was going to reach, what I still feel, is a very underserved market but I thought for sure it would take time. I thought I would have months to figure out all of this. Well, add that thought to the list of things I was wrong about. This show was an immediate success (by my standards). Things went from 0 to 100 REAL QUICK. I honestly didn’t know what I was doing. Still don’t. I am just trying to figure it out while trying to reach, help, and inspire others.

Let me say this too, I write because I feel that is my gift. If you have read other entries by me, you would also know that I am battling my own health issues and my own weight and body images. So when I launched Warrior Moms I wasn’t quite sure how the whole podcasting thing works but I figured that the easiest way was to just do it live. Yep. I went that route. Live. Video. Live video when you have body image issues. Live video when you have health issues. Live. Effin. Video. I felt that if I was going to jump in feet first I would have to let go of those thoughts in my head and embrace vulnerability and just do the damn thing.

I also didn’t expect the show to be my own personal form of self-care. This is actually not something I have mentioned on the show yet but it is true. If you haven’t caught the show yet, each week we feature a Warrior Mom or someone who works or supports the special needs community. Hearing these stories and connecting with these people has helped me in ways I never even expected and I hope that is doing the same for my guests, community members, and viewers/listeners.

Another thing I wasn’t expecting was the doors of opportunity to open the way that they did. Within the first few weeks multiple people, companies, foundations were all wanting to connect with me to help me build my audience. What a blessing they have been, what a blessing this entire experience has been.

Each week is a learning curve. I started using a streaming service that had poor quality streaming and we had technical difficulties out the ass. I switched over to a new service and that helped so much. Like I said, it has come with a steep learning curve as well as trials and tribulations. I didn’t understand how to edit sound (still don’t) and lost my audio to my first few months of episodes- which is fine, I still have the live video files.

I committed to a weekly episode format not realizing that it would be a HUGE part of my time in the evenings and weekends which, initially, took away from everything else I am doing. I also didn’t realize the financial commitment it would take to do just some of the things right, like the streaming service and the app I use for my marketing graphics.

All in all, the Warrior Moms Podcast has been one of the most rewarding experiences of my life and I look forward to the future of the show and to the changes it will bring to the special needs and epilepsy communities out there.

You can check out the Warrior Moms Podcast on this blog or on our Facebook Page and Group as we stream live there every Wednesday evening at 8pm/CST. We are a live and interactive show so bring your positive feedback and questions and we will do our best to answer them!

Epilepsy: Modified Atkins Diet (MAD)

In addition to controlling our Warrior’s Epilepsy with anti-epileptic drugs (AEDs) we have also been prescribed the Modified Atkins Diet (MAD). The MAD diet is very similar to the mainstream Ketogenic Diet (Keto) but it is a bit more stringent on following macros than mainstream Keto.

When using MAD as a tool to control Epilepsy, it is common to see daily carb restrictions between 10g to 20gs. The diet can be made to be more stringent by tightening the reigns on total fat consumption and calories. However, it is not uncommon to for the dietitian to try to control it with the least restrictive options and then to restrict the diet further if the Epilepsy cannot be controlled. This diet is also not meant for weight loss but some weight loss is typical.

It is important to start this diet with the help of a dietitian, most epilepsy clinics have a dietitian on staff. Before starting the MAD diet, it is also important to have baseline blood work completed beforehand. Once the bloodwork comes back the dietitian will create a plan for you and you will meet with him or her to go over that plan. Moving forward, for a least the first year, you will have monthly appointments with the dietitian to track your child’s progress and to make any adjustments- bloodwork will also be checked frequently during this time.

Our warrior is 7 months into this diet and it has helped her in so many ways. The most obvious is that she did lose about 10lbs and on her tiny frame, 10lbs is noticeable. However, where we see the biggest difference in her is mental clarity. It started around month 3 and we started to notice she was speaking words much more clearly. Then we started to notice her adding in words she’s never used before. Followed by, sarcasm and whit. Just this last week, we noticed her reading beyond what we know her to be capable of. It is amazing what the brain can do when it isn’t focused on the next seizure.

She does miss certain things. Initially it was the typical “I miss sweets” but as the months went on her need for sweets changed into “I miss carrots.” We do give her some carrots from time to time as a treat. All in all, she loves her diet and she feels it helps her and that has kept her on track and motivated to not cheat on the diet because she understands that her diet is medicine. Food is medicine and that is how it is explained to anyone who asks about her diet.

We felt that it was very important to make her play an active role in her health and diet. She knows the rules of her diet inside and out. She knows how to measure her portions. She knows how to track her macros and she knows how to track her ketone levels on a ketone test strip. Of course, I understand that this is not typical for all children but we felt that it was important for her to be involved.

What we didn’t expect was to unlock a passion in her. She now has plans for after high school- she wants to open a keto food truck and offer keto options to people as one thing she definitely misses is being about to eat out for fun. I am so proud of who she is becoming and I truly attribute these changes to her diet and her current seizure control.

Here are some online resources that we have used but if you have any questions please send me an email and I will do my best to help you or point you in the direction of a resource. Below are some of our commonly used resources, books, and kitchen tools (I do not get anything in exchange for recommending these to you).

1. The Charlie Foundation

2. Diet Doctor

3. Wholesome Yum

4. Instant Pot Vortex Air Fryer (LEGIT GAME CHANGER FOR US)

5. The Ketogenic and Modified Atkins Diets, 6th Edition: Treatments for Epilepsy and Other Disorders Paperback by Eric Kossoff MD (Author), Zahava Turner RD CSP LDN (Author), Sarah Doerrer CPNP (Author), Mackenzie C. Cervenka MD (Author), Bobbie J. Barron RD LDN (Author)

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Quarantine: Can We Talk About Mental Health Now?

I believe that proper Quarantine Etiquette dictates that I am supposed to start this blog with, “The world has changed so much…” I mean, it has, but at the same time that phrase and many other Covid catch phrases like “We’re all in the same boat,” “the flu is deadlier,” “ma’am, you still have to wear pants at the grocery store,” and just about every news headline ever written in this weird-ass time is annoying to me.

Actually, a lot of things are annoying to me. Why? Because, I am stressed out. Duh! My husband lost his job, my check isn’t big enough to cover all the bills and since we were under his insurance I had to switch us over to mine and that took a $650 hit to each paycheck (my husband’s job it was $400 each paycheck).

Financially, we were hit hard. Our daughter’s medical bills were already taking us down the drain and now this.

My company actually did do layoffs and I survived which left me with a lot of survivor’s guilt and whole bunch of extra work in my lap. More work and less pay. Wonderful!

But this isn’t about the hardships we are facing on a personal level. No. We have stress but I know that there are some people who have it worse and others who have it better. That is just how life is.

However, what I am here to talk about it is mental health.

The world, the entire world, has just experienced a crash course in Mental Health 101. Every day I open up my social media to a new friend who just had her first panic attack, to a post about starting the day drinking, to a frontline worker that is so worried that they are going to bring the virus home to their family they are hiding in their car crying, to an essential worker doing the same thing, to another friend who is watching their spouse fight for their life alone in the ICU and she is left home alone to wait and worry unable to even communicate with him, to a young mom who lost her job and is so worried about her situation that she now has shingles (actually 2 friends have it).

Every day it is something new and I am so tired of seeing the replies to the posts of “we’re all in the same boat, just hang in there.” NO! We are not in the same boat. As I mentioned above some have it better and others do not but that doesn’t fucking matter- we are all experiencing new and real shit and we are allowed to feel a certain type of way. I think a more accurate assessment is that we are all on the same planet, dealing with the same virus, and after that is where things start to differ for each person. So, if you must lump us into a group, you can say, “we’re all on the same planet,” whatever.

I want to say, thank you to my friends who are real and raw in their emotions who are out there telling people that they are not okay. Because IT IS OKAY TO NOT BE OKAY and I will scream that from the roof tops as quickly and as loudly as I type the words on this screen (I am a fast and loud typist).

Talk about your mental struggles- put it out there! THAT IS NORMAL. We aren’t meant to know and understand the secrets of the Universe and so shit gets weird sometimes and we have to process that and we all do that differently. Friends, I think we can all agree literally nothing makes sense. I mean, last week the government was denying the existence of UFOs and now they are confirming it. WHAT?! Seriously, why now? Wasn’t it like 7 months ago everyone wanted to storm Area 51- where was the government’s confession then? I digress…

I think it is really hard for some people to reconcile that the world changed over night. We all saw it happen and we are living it day to day but we cannot align our previous reality to our new reality, and that is okay. Like I said, we all process things differently and in our own time.

But while Covid captivated the attention of our world leaders and pretty much everyone else… something else was taking a foothold in our society.

Depression.

Anxiety.

Panic.

Fear.

Stress.

Hopelessness.

Suicide is now on the rise.

Domestic abuse is on the rise.

Child molestation is on the rise.

Alcoholism is on the rise.

Why? Because, as a society, we don’t know how to handle the hard shit that gets thrown our way and when we do make our cries for help people down play it and tell you that you are over-reacting.

It isn’t our fault- it has been ingrained in our culture that we have to ignore the bad things – just pretend they don’t exist; and, for many, Covid and quarantine are the first bad things that they cannot ignore.

I am somewhat sorry to say that we were raised in a world that doesn’t exist anymore, like I said, we all just got a crash course in what it is like to battle for stability with our mental health.

So why not move forward into this new world where we raise our children to recognize the signs of an inner struggle within themselves and others?

Why not teach them that it is okay to not be okay?

Why not teach them that when we struggle with our own mental health that we need to voice that and we will embrace their vulnerability and help guide them to the other side of that storm?

Why not teach them not to shy away from a friend that confides in them that they, too, struggle with mental health?

Why not talk about mental health, we all see how vitally important it is to our very basic need to survive?

The world has changed. That is a fact. What we are left with is an opportunity. We have an opportunity to take this new world and mold it into something better for all of us… I hope we do.

St. Valentine, Heartbreak, & MAD

Valentine’s Day was another hard day of being a parent but not in the sense that my child was disobedient or that I was left to clean a messy home all by myself… I long for those days now.

No, yesterday was hard on my soul. I was heartbroken to learn that my child has multiple devastating genetic mutatiosn that are partially responsible for her onset of Epilepsy. Two of the mutations are known but confounding and then she has 1 mutation that has not been mapped by science. This leaves us with hardly any answers and lots of new questions particularly regarding her life and longevity.

To learn that a partial source of Scarlett’s issues are not because of the TBI but linked to these genetic mutations was jarring. Our whole life was based on this. Could we have got her help sooner if her previous neurologist and team were more aggressive?

This news broke me down. I was in a tailspin. All the compose I maintain and receive “compliments” on went out the window. I was the very definition of “Hot Mess.”

My heart was broken on Valentine’s Day. St. Valentine, the Patron Saint of Epilepsy.

Irony at it’s finest.

I ugly cried for hours. HOURS. I cried so hard I could hardly open my eyes. I have never cried that hard in my life.

Through the darkness a sliver of hope remained on one of the mutations (the gene that they believe to be the most devastating) was only a single deletion rather and a double deletion- which is considered terminal.

I believe that we have one of the best (if not the best) Epileptologists in the world and after speaking with her she was able to put our mind at ease that our Sweet Girl is an anomaly and not necessarily in a bad way. Yet, she advised us to begin the Modified Atkins Diet (MAD Diet) immediately to help support her mitochondria and hopefully stave off the seizures. We met with a dietitian that same day and began the diet the following day. We were also advised to meet with a Geneticist as well as a doctor that specializes in Mitochondria. Those appointments are pending.

Many people have asked us already, just want exactly is the MAD diet. The MAD diet is basically the “Mainstream” Ketogenic Diet that everyone is on. However, for those with Epilepsy there is a lot more at stake. Meaning, if you, a non-epileptic, fall out of ketosis, the only thing that happens is that you have to work to get yourself back in. If my child falls out of ketosis, she increases her likeliness of a seizure- so not good, right?

So what does this involve? For our sweet girl, strict control of her macros. They don’t joke around either. We had to change more than just her food. Did you know there are carbs in lotion, shampoo, conditioner, deodorant, and toothpaste, just to name a few? Ya… we didn’t either. There is a definite learning curve and I will discuss what we have learned and are doing in another entry.

Thank you for reading.

Milk & Cookies

To sound totally basic, I did a thing.

Well, I, actually, did a few things.

To dive right in. I cannot deny that I am incredibly overweight and I am not fit enough to be the mother I need to be to my Sweet Girl.

I was tired of feeling the way I felt and I wasn’t going to lose the weight from my stress eating without help.

I know that nothing changes, if nothing changes.

So I saw a commercial for this app and signed right up. My cheapass even bought some DNA kit, which, in hindsight, was probably a total waste of money. BUT Sleep-Deprived-2am-Me felt like it was a solid investment.

THEN, because I signed up at 2am, I completely forgot that I signed up. Fast forward a few days and I was like, “why is this company emailing me?” I finally opened the email and was like “DUH! Oh man, I hope I can get my money back.” But then that little voice inside my head, the one I usually leave bound and gagged in a the back of my mind, somehow managed to get the gag loose enough to be like, “Let’s at least try the free trial?”

ANNNNDDD sooooo here I am on Day 3 of an 8 month commitment to lose 80 pounds.

SAY WHAAAAAT???!!!!

Then.

Because I am an all or nothing kind of badass (or moron).

I also signed up to do a Hotworx session. Again, just a free trial because I truly don’t know what I am getting myself into. If I survive, I’ll join.

What’s that saying, “Go big or go home and sit on the couch and eat Milk & Cookies?”

Mmmm Milk & Cookies… Ooops, sorry, where was I?

Saturday at 10am, I will be at Hotworx, in an infrared sauna, doing yoga in 125 degree heat!

TF am I thinking? I can’t even blame that on Sleep-Deprived-2am-Me.

If I survive, I may just write a blog about it. If I was braver, I would make a video- but I am not.

If you have read any of my blogs it has been a rough year+ and there is no doubt that I was eating my feelings. I hate to admit this but I am the heaviest I have ever been.

I have talked to a few different fitness experts/coaches and they want to go balls to the wall and if my daughter didn’t have Epilepsy and I wasn’t fighting depression and PTSD I may have been ready to put my balls to the wall but as it is my balls will remain off the wall.

I am ready to make healthier changes and I believe my WHY is strong enough but I feel that this will have to be a slow journey.

One other thing I agreed to do, I agreed to see a therapist and my first appointment is Thursday.

Again, nothing changes, if nothing changes. I feel that between writing this blog, going to therapy, using this new program, and POSSIBLY attending Hotworx classes that I will find a way to be the full mother-package to my Sweet Girl.

Cheers to change.

Brave Girls Can Cry

Epilepsy continues to be hard. It saddens me to think that this illness consumes so much of our lives. We became a family of 4, myself, my husband, our daughter, and Epilepsy. Our lives have changed and I know there are so many more changes to come. Some of those changes we already know about, such as starting her on the Modified Atkins Diet and possible brain surgery and/or an implant but most changes will be unknown.

I continue to write as a weird form of therapy and because I genuinely hope that this helps make the experience easier for someone else. Because… maybe this pain we feel might be more tolerable if we knew that we helped someone with our story?! So, I write. Sometimes I publish but most of the time I delete. I delete because there’s a part of me that feels like people don’t want to hear me “complain” or I think that maybe people will think that I have given up hope? I don’t know; but, these are the thoughts that pop up in my head.

A few months ago, I was getting certifications in both Cannabis Coaching and Life Coaching and I was creating plans to really broaden my horizons. Now. Now, I am crying when ever I think I can squeeze it in without anyone catching me or calling me on the phone, mostly in my car or the shower. I don’t think about my future, I think about each day as it comes, minute by minute, that’s all I can do. When I think about the future, I get overwhelmed.

I have aged. Wrinkles that weren’t there 6 months ago are there now. I look tired all the time. I have gained a ridiculous amount of weight because I eat my feelings (and I have a lot of feelings right now).

There are many things I wanted to do with my life and there were so many more things that I wanted to do with my daughter but, right now, that’s all on hold. It isn’t a “never” but it is most assuredly a “not right now.”

I wanted so much for my sweet girl. It hurts me to think that these seizures are her new normal and that her day is dictated by “avoiding triggers.”

I am grieving for so much and I am incredibly angry. However, what I am feeling is nothing compared to my daughter who has had her life altered so drastically with no explanation as to why!

My daughter doesn’t get to experience a “normal” teenage life and as someone who was already special needs- this makes her feel even more different. It breaks my heart because she doesn’t understand what is happening.

I try to hide my feelings from her. I don’t want her to see me upset and think that this is her fault because it is not. When she was in the hospital she kept blaming herself. She said “my brain is stupid” and “I wish I didn’t have this brain.” It took everything in me not to break down. I want to be brave for her but my soul aches.

She cries a lot and I no longer pat her back and say, “there, there” and tell her everything will be okay and to dry her eyes, like I would have before Epilepsy when her problems were less… well… soul crushing.

No… no, now I hold her and let her cry…

I tell her that I love her with my whole heart and soul. I tell her that I will always fight for her. I tell her that I will do everything I can to find answers and solutions to this problem. I tell her that I will raise awareness so she can feel safe in the world. I tell her that it will not be easy and I ask her to be my beautiful, brave girl.

And, I tell her that “brave girls can cry.”

Epilepsy is F*in’ Hard: Part 1

A few months back, I wrote an entry about my daughter having a seizure. Of course it was a scary event but I cannot tell you how naive we were. Our lives have been turned upside down since that day and

I actually started that above paragraph on December 7th, 2019, and had to stop writing because my daughter said to me that she wasn’t feeling well. I have learned to listen to her even if I think she is crying wolf. She was not. That was the start of 16 days in the hospital, 15 of which were in the Level IV Epilepsy Monitoring Unit here at Children’s Memorial Hermann.

When my daughter first had a seizure, her doctor was quick to dismiss it as a one-time thing. When my daughter had her second seizure 13 days later, she was hospitalized. We spent 3 days at a children’s hospital in Houston and were put on Keppra and told to follow up. We had a 3 month honeymoon period and then our daughter’s seizures returned. We maxed out Keppra. They added in Onfi. Insurance refused to cover Onfi. She started clustering and Status Epilepticus became a real concern.

Sitting in my daughter’s hospital room, I became angry because other than “she has Epilepsy” we didn’t know fuck-all about this situation we found ourselves in.

I joined a Facebook group for parents who have epileptic children and I quickly realized that the odds were not stacked in our favor. If I was going to walk this path with my girl, it was obvious that I would have to first clear the path for her. *Rolls up sleeves* Not a problem, I am her mother, this is what I must do for her. BUT if I am going to do this I am going to at least document it so that way when another parent has to walk this same path they can use this as a starting point. As always at UnSocially Acceptable- my goal is to help with my story. No one should feel alone in this world- especially when you are worried about your child’s life. One of the hardest parts to swallow about an Epilepsy diagnosis, once diagnosed with Epilepsy, that may be the only bit of information you get.

I posted in the Facebook group asking parents what they wish they had known about Epilepsy and as one parent pointed out, I fell into a Rabbit Hole. So this is going to be the first entry in a blog series, Epilepsy is F*in’ Hard. I don’t want this entry to be very long that people find it cumbersome. So I will work on other entries and try to group them by topic, for things such as medicine, CBD, Epilepsy-related products, Epilepsy-related resources, and other miscellaneous Rabbit Hole topics.

To start, the overwhelming response was that no child is the same as the next. You KNOW your child (which is true, I have accurately predicted my daughter’s seizures every time). Follow your intuition, your “momtuition” is almost never wrong and even if it is, this is the one time it is wonderful to be wrong.

Stemming off of that thought, it is okay to call your Neurologist or Epileptologist after hours, there is no need to justify your concerns about your child to anyone else- if you are worried about your child- your concerns are valid. End of story.

Ask questions, doctors are people too. People no matter the amount of education or years of practice in an area can make mistakes. That is why the term “practice” is used, medicine is still a developing field and things change daily. They are human, you are human, human error exists. ASK QUESTIONS.

Educate yourself on all things Epilepsy because you can’t ask questions if you don’t have a baseline on the topic. I started with this book and it really helped: Navigating Life with Epilepsy by David C. Spencer, MD, FAAN. This book will really help you understand terminology and the different types of seizures, medications, treatments, and so much more. This is my bible.

SUDEP is a fear we all have. There will be no shortage of companies tying to capitalize on your real fear of SUDEP, sorting out the bullshit from the needed is hard. I plan to write an entry of common products and companies to trust.

Medication: this is a touchy subject. These medications are literally changing the chemistry of your child’s brain. There are side effects and some of them are major. You have the right to question the medication. You have the right to ask your child’s doctor if this medication is the best available option. You are your child’s advocate.

Not to sound bleak but there is a real possibility that a medication will fail your child. This is frustrating. I am sorry. Keppra failed my daughter. BTW, I choose to say it that the medication failed my daughter rather than my daughter failed the medication because I don’t ever want my daughter to think that Epilepsy is her fault.

Cannabidiol or CBD is helpful for a lot of a families. My family uses Green Compass Global and it was approved by her Neuro team and her Epileptologist. We use a full spectrum CBD in concert with her Antiepileptics. This is the company that I own a franchise with and the only company I trust (read previous blogs where I talk about this company). There are no shortage of opinions of CBD in the Epilepsy world and there are some great products but again, I trust my company. The only FDA approved prescription for CBD is Epidiolex. Many families have seen great changes and help with just over the counter CBD but that is a discussion for you and your doctors.

I will likely do another blog entry on CBD and epilepsy as those who read this blog know how strongly I believe in cannabis.

Genetic testing and updating genetic testing is important, it can really help narrow the field and help your child’s doctors decided on a treatment plan. Some insurance will cover it and some insurance won’t but I, personally, think genetic testing is worth it. Keep in mind, getting the results takes a long time. It is not like television labs that can return the results to the detective before the next commercial break.

There will be a lot of waiting. Waiting on the genetic testing. Waiting for appointments. Waiting for insurance to cover or approve something. Waiting on the new medication to pass or fail your child. Waiting to titrate up to the next dosage and wondering how “protected” your child is. Waiting on the next seizure…

Parents, PTSD is real.

I tried to explain this to my friends and family and they just don’t get it (but they will). Epilepsy is hard. I was so ignorant to the struggles one goes through when Epilepsy enters their lives. For something so common, HOW DOES THE WORLD NOT KNOW ABOUT EPILEPSY?

I can tell you that I am not okay... and that is okay. Each time I hear my child say my name, it no longer sparks joy in my heart because, more often than not, my name is the last thing she says before she has a Tonic-Clonic Seizure. I am the person she calls out to for help. I have 4 seconds to get to her from the time she says my name to the time the seizure changes from focal to generalized. Now… the sound of my own name sparks fear and worry- my heart drops every time she says my name. The guilt I feel and the emotions I go through every day breaks me. I am not the person I was 5 months ago… I am not the person I was 2 months ago. I feel angry. I feel like Epilepsy robbed me of the joy of being a mother. I struggle to find balance between taking care of my child/managing her safety and actually being a parent to her. I cry a lot. I am distracted. I feel broken.

But NONE OF THIS is my daughter’s fault and what I feel is a drop in the bucket to what is going on with my sweet girl who doesn’t understand what is happening to her. She is so lonely and depressed and it breaks my heart. Her life has changed so much and so fast. Like many children who have Epilepsy, my daughter is cognitively delayed. Which, sparks more anger in me, because I find myself wondering “why her?” a lot. And, when you start down that path of thought- you will find a lot of emotions.

I will never have a good night’s rest for the remainder of my life. My child will never be cured of Epilepsy- she will only ever be “Seizure Free” and that timeline starts over every time she has a seizure. She once went 3 months…

Parents this is very tough road and not many people will understand what you are going through. Your friends and family will not understand that your child NEEDS their medication at the same time every day or that you have to randomly cancel plans because you have this feeling in your gut that won’t go away… It is important to remember that like myself, the world just doesn’t know because it hasn’t happened to them but if you find it in your heart to be vulnerable about this- people may listen and more people may see that this is something we need to discuss and know more about. At the very minimum, Seizure First Aid is something that must be taught.

I am documenting my daughter’s struggle with Epilepsy not to capitalize on it but because I immediately realized that the world is just not prepared for Epilepsy. My daughter has to live in a world that is not meant for her- a world that is not safe for her. I am going to do everything in my power to let the world know she exists and that there are many others like her that exist too.

God willing, there may be a day when she calls out my name and someone else is closer to her than I am… maybe they will be brave enough to help her.

Training: A Lesson in Vulnerability

I was recently afforded the opportunity to do a training for my Green Compass team. In my previous company I would have never been allowed to speak so freely- everything was carefully curated by our upline.

I took this role very seriously- and I know I overthought it. However, I wanted to do a good job because I genuinely care about not wasting people’s time.

I agonized over what topic to train on because there was that little voice inside my head that was calling me a fraud and telling me that no one wants to listen to a training by me. Anyone else have that little voice/asshole too?

After doing the training (Live on Facebook). I realized that there were some people in my life that I wanted to share my work with.

Here is a modified version of that training. I hope you find value in it:

Hi, my name is Trina and I am just a Senior Team Leader with Green Compass Global.

Hi, my name is Trina and I’m just the person behind the blog, UnSocially Acceptable. 

Hi, I am Trina and I am just a mom.

…just a wife. 

I am just belittling myself because I am afraid to be vulnerable.

I am afraid to let you see who I really am. 

I am afraid to put myself out there. 

The truth- I am a mom to a special needs teen. I have been married for 15 years.

I am so much more than that though.

I am a professional photographer, writer & blogger, I am a person who obtained their Master’s degree while working 3 jobs, 2 of which were full time, while still supporting my family. 

I am so much more than “just a” will ever allow me to be… and so are you.

So why do we undermine our achievements with “just a”? The answer is simple, we are all afraid to be vulnerable. 

Dr. Brene Brown of the University of Houston is a shame researcher and her work is so thought provoking to me- not to mention that she’s from my hometown! Go Astros! If you haven’t already checked out her TED talks or read her books, I highly suggest that you do. She is so insightful. 

Through her research Brene discovered that vulnerability is the most accurate measurement of courage. It is only when we embrace our own vulnerability- through uncertainty, risk, and emotional exposure that we are actually being our true authentic and courageous selves. 

So, the whole point of this training today is to show you the value behind vulnerability and to encourage you to “do it scared.” 

I hear this all the time from my team, “Trina, I want to do more things like go live on Facebook buuuut I am scared that I will say something wrong and people will make fun of me or I will say something stupid and discredit myself.”

My response is to say, “I totally get that, but do it anyway. Do it scared.” I don’t say that to be mean, I say that because I truly believe that in order to succeed we need to put our true selves out there. And I don’t mean that if we don’t ask we won’t receive. What I mean is, in order to be truly authentic to the people we are talking to we have to do things that put us in a vulnerable position and what better way than a Facebook live? Right?! Get’s the blood pumping, that’s for sure.

Or I hear, “Trina, I can’t reach out to people and talk to them. What if they tell me to bugger off?” My response, again, “do it scared.” And if they tell you to bugger off, then you don’t need that kind of person in your life. Click “unfriend” and move on. 

Do it scared.

Do. It. Scared. 

Y’all, Facebook lives ARE scary. As someone with severe anxiety and as someone with a neuromuscular disease that makes me both fidget and stutter, a recording is definitely the easy way out. BUT what kind of example would I be setting in a training on doing something scared and being vulnerable if I couldn’t do a training live on the air for all to see?

Side note: I am a firm believer that leaders lead through example, I will never tell someone on my team to do something that I wouldn’t do myself so there I was, Live on Facebook, battling a head cold (turned out to be pneumonia), and training a few hundred people.  

Recently, a friend of mine posted a video about her five biggest fears and her 5 steps to combat those fears. I was in awe of her. Talk about vulnerability. I mean, she laid it all out on the table. Later that night, she and I were talking and she said that she had the most engagement she had ever had on Facebook after doing that live video. It truly doesn’t surprise me because I ALWAYS have a lot of engagement after I post a video or go live. Why is that? Because it is more authentically me- it is just me talking, and I may mess up, misspeak, fidget, or stutter but on social media, it is the next best thing to me being in the room with you and talking to you directly. It isn’t tailored to be social media perfect, or as I call it, “Socially Acceptable.” 

I mentioned earlier, I run the blog UnSocially Acceptable. In my blog, I talk about the “hard things.” Things we don’t talk about on social media because they can’t be wrapped up in a pretty little post with a fun filter. I talk about things like my autoimmune diseases, having a special needs child, my miscarriages, my broken heart about an adoption that fell through, my anxiety, and my depression. I put all of that out there for the world to judge and hate me for it. 

I can tell you with 100% certainty that I have EXTREME anxiety after I post a blog because I am so afraid of the keyboard warriors and their hateful comments like, “God hates you, that’s why he gave you a special needs child and made you infertile.” People can be mean and they can be downright horrible to people who are exercising vulnerability on the internet. 

Each time I post a blog, I hesitate over the “stop commenting” button before I hit “publish.” It would be so easy to stop those comments. But then, I think about the reason why I created my blog and the people who read it. I want to help people. I was once alone in my thoughts and grief and I found myself wishing for someone to understand what I was going through, so I created my blog so that if anyone walks through a similar season of life as what I experienced, they would know that they are not alone. They would see that they belong. So, as much as it rips my soul apart, I write these blog entries and post them for that person, whoever they are. 

I post it scared. 

Scared of the backlash.

But I post it.

Because just like you with Green Compass, I feel like I have something to offer people. For my blog, I have my life story to offer. For Green Compass, I have, you have, we have a quality product that everyone could benefit from.

So many members of my team struggle with reaching out or posting because they are scared of the backlash and judgment. I want to encourage them and you all to lean into that curve and do it scared. Reach out to people. Just do it. Scripts are great for some but you can just be yourself too. I promise you that after each attempt it gets easier and easier. 

When we are vulnerable we tap into authenticity and that authenticity is what reaches your audience and builds trust. We all know that people buy from those they know, like, and trust. Also, there is something so freeing about being vulnerable. 

What I mean is that through your vulnerability you release your fears and allow yourself to simply just be you- no pretenses. 

Of course, I don’t mean that you need to go out and just confess your innermost secrets or start a blog. Just try adding in small things like when you are out in public, say Starbucks, rather than sit off in the corner, sit at the community table. I do this all the time, now, I didn’t always until I started to be more deliberate with putting myself out there more. I walk up to the table, I simply say, “Hi, do you mind if I sit here?” No, great, thanks. My name is Trina- nice to meet you.” 

Now, I know some of y’all are like, “Whhhhaaaatttt? I can’t do that.” I know that this sounds crazy. I know some of y’all are even thinking, “Oh Trina’s from Texas, everyone is friendly in Texas.” Which it is true but I do this wherever I go, people are generally not rude. Try this and make new friends, even if they are just your friend for a fleeting moment. This is great practice and if you do happen to get a rude person – hey – you won’t ever see that person again anyway. 

Learn to talk to people. Have a conversation. If you can find a natural way to lead with the business take that opportunity to do so. It should be very easy to find a segue to Green Compass. If the person is engaging with you, the question, “what do you do?” will likely come up! Going back to my opening statement, don’t belittle your chosen occupation. That’s what this is, your chosen occupation, you chose to advocate for Green Compass. You need to own this. Do not be afraid of their response. Proudly say, “I have my own CBD business and I advocate for responsible cannabis use.” You can choose to say more or you can allow your new friend to press and ask you questions because odds are you just piqued their interest. What’s more, you didn’t belittle yourself or your business and you were vulnerable. Your vulnerability to actually say what you do has now authentically attracted the attention of a new person. 

In order to form a real connection with someone we have to be vulnerable. Unfortunately, for us, there are no guarantees on vulnerability. We can be so very vulnerable and still not be successful and you need to know that- this is still okay. It happens but do not become numb to your vulnerability. When we are numb we have suffering, we are unhappy and we become stagnant. You know, culturally, we are taught that vulnerability is actually a negative emotion and a weakness. It would surprise you to learn that when we are vulnerable, when we embrace vulnerability, we give birth to joy, gratitude, happiness, creativity, innovation and so many more positive emotions. This was proven in Dr. Brown’s research. Do you think the Wright brothers didn’t exercise vulnerability when they declared that they were going to create a flying contraption?

So how do you embrace vulnerability? 

First, take your armor off. 

This sounds totally counter intuitive to any business book that you ever read that told you to “fake it until you make it.” In some ways that is still true but when trying to form a connection with your market this is not the approach you should take.

Take your armor off.

You will hear people say, “put your big girl or boy pants on and handle your business.” This armor protects us from being vulnerable, from showing the world who we really are. Take that armor off and build up your relationships.

Please don’t confuse this metaphorical-psychological armor for dressing for the position. It is totally cool to wear something that gives you confidence, I like to wear cheetah/leopard print but I don’t let it dictate my personality, who I am, or how I relate to others. We are in network marketing- this is all about making connections, how can you do so when you have a wall of in-authenticity between you and your target audience? Being a badass isn’t about wearing armor it is about owning who you truly are. That is the ultimate in badass-ery. 

Second, you need to learn that you are worthy of love, belonging, and connection.

Live whole-heartedly. Treat yourself with the same compassion you would give to someone else. Whoa, now this is a tough one to do.

Remember earlier when I said that I put my life stories on the internet for all to “judge and hate me for it?” I said that on purpose. I wanted to show that I don’t give myself the same compassion and grace that I would give others.

I am sure that those of you who caught it thought, “Wow, really? People hate her for her blogs- she’s writing them from a place of love and caring and wants to help. Who would hate her for that?.” And, you my observant friend, are 100% correct.

So why did I say it? I said it because I wanted to illustrate that we do not give ourselves the same compassion we give to others. I am my toughest critic. No one can say anything to me that I haven’t already said to myself. It is the same reason why I used to belittle myself when I was introducing myself to someone new, I am just a mom, wife, student, legal analyst, skin care sales rep… whatever.

We need to give ourselves the same compassion we give others. I promise that when you are mindful of this line of thinking you will be happier and you will be truly authentic, and with that you will move mountains.

I say that with total certainty because I have been practicing this myself and I have seen it work. It takes a conscious effort- you have to choose to be vulnerable. You have to choose to put yourself out there. You have to choose to be the real you. 

When I agreed to do this training I went through a whole range of emotions. How can I do a training? No one wants to hear from me. I am never going to be as successful as my teammates. You’re a failure- others have been with the company in less time and are making more money than you and double, and even triple promoting in a month. How dare you do a training?

Those were my emotions talking.

I have learned that there is a time and place for my emotions because I don’t know if you know this but emotions aren’t logical and they like to create narratives in my brain to justify their irrationality. Then Logic finally showed up and was like, “Whoa, Emotions, slow your roll, she has value to offer. She has the education, the world experience, don’t forget, Emotions, in her day job, she is the number one sales manager for her company – she is very qualified. Most importantly she has the heart and she is willing to put it all on the line to help people- let her talk.

Going back to Brene Brown, she has a whole collection of books but Dare to Lead, Daring Greatly, Braving the Wilderness, Rising Strong, The Gifts of Imperfection, I thought it was Just Me are all great and she still has quite a few more. Also, her TED talk on “The Power of Vulnerability” is one of the top five TED talks of all time, please check her out, you will learn so much from her research.

Supermom

I have something Dark within me.

I try my best to ignore the Darkness. I tell the Darkness it has no place in my life and I remind myself of all the light I have within me. Most days that is enough to keep the Darkness from enveloping my soul.

I have battled this Darkness for 20 years and right now my resolve is wavering.

A few years ago, I made a promise to myself that I would no longer fight this battle in silence and I started writing about it and posting it to my social media. To this day, I have kept that promise.

You see, I feel that when I publicly address my depression, I give my depression no room to hide. I force my depression out into the light where it has to answer for itself. I take away it’s power over me.

So, unlike most everyone else with a mental illness, I battle mine out loud.

One by-product of battling out loud is that I am frequently called things like “brave” or “Supermom” for choosing to speak when so many remain quiet. However, I really don’t like it. I don’t feel brave or like Supermom and I am doing this for my own selfish reasons.

I am not brave.

I am scared that the Darkness is right about me.

I am scared that I belong in the Darkness.

That I deserve the Darkness.

I am coming up on the 1 year anniversary of my life turning to shit, starting with my health, then a few hard financial blows, then my daughter developing a seizure disorder, followed up by some more hard financial blows. Currently, I am writing this from my office wrapped up in a big blanket, hot tea to the left of me as I am sick with pneumonia. What next?!

But as I sit here, and try to divine what to say, I struggle.

I am drawn to the Darkness.

I feel the pull of the void, but I won’t answer.

The Darkness grows restless inside me.

This “Supermom” feels like she is locked in a room of Kryptonite.

This false warrior is not brave at all.

My composure and my delicate grasp on my depression are falling apart. I feel like I am broken in a 100 different ways but I haven’t shattered yet… but the slightest bit of pressure will cause a collapse…

I have openly talked about my use of cannabis/CBD to treat my auto-immune disease as well as my anxiety. I definitely believe in the healing powers of cannabis. However, in this case, I waiver. I am not sure if I can get myself out of this on my own (like I have done in the past) and I don’t think there will be enough CBD to help either.

While at the doctor for my pneumonia check up, my doctor brought up that I had gained weight and that my smile didn’t touch my eyes. I told her about my life stressors and she brought up going back on Wellbutrin, an antidepressant I am very familiar with.

I accepted the prescription but I have not filled it.

Filling it would be me admitting to myself that I am not okay…

Like I am now…

I am not okay.

I have always said that I am my own worst enemy and admitting that I am not alright to you is one thing, admitting that to myself is entirely different.

I need to give myself the Grace I would give others but I am not there yet.