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.

A Positive TESTimony

Anthony, 31, is a single father of two from Richmond, Texas. He was born with a clubbed foot and during his life he had numerous surgeries and years of physical therapy to correct the foot. In May 2016, at the age of 28, Anthony and his doctors decided that if he was going to have any quality of life that it was time to amputate his leg.

The other day I sat down with Anthony to discuss his life since the amputation and how CBD has helped heal him, both physically and mentally, since the surgery.

Anthony, what type of amputation did you have? Ertl, it is a below the knee operation where the surgeon takes a piece of bone and creates a bone bridge between the tibia and fibula.

With this Ertl amputation do you think you are better off in comparison to other amputees? How so? By far. It allows me to be more weight bearing, which in return allows more impact with almost no pain.

Source: Taylor, Benjamin C. and Attila Poka. “Osteomyoplastic Transtibial Amputation: The Ertl Technique.” The Journal of the American Academy of Orthopaedic Surgeons 24 4 (2016): 259-65 .

We have all heard of phantom limb syndrome, when the body still remembers the feel of the amputated body part, but what we don’t really hear about are the phantom pains associated with the syndrome. The Mayo Clinic notes that the pain can be described as, “shooting, stabbing, cramping, pins and needles, crushing, throbbing, or burning.” Can you please describe what a phantom pain feels like for you? There’s 2 types of phantom episodes. One is “phantom sensation” where I pretty much always feel my foot. The other is “phantom pain” and this is the one everyone associates as a generic term. The pains I have experienced so far have been minor electrical zaps/nail thru the toe feelings that are intense, but not constant, foot being crushed in a vice grip, feels like my foot is being slowly ripped off, broken bones (sometimes several at a time) or just that itch you can’t scratch that will drive you mad. It all really depends really.

What did your doctors prescribe to treat phantom pains? Narcotics and Gabapentin.

But you didn’t like the prescriptions because they didn’t grant you true relief, how so? Did you find anything to bring you relief? I had this surgery to free my life, I didn’t want to spend the rest of my life tied down on pills. They never actually helped. In fact, they made my whole situation worse. Finally one day I decided I wanted to do it on my own, not knowing what I was in store for. I lost total control of all my phantom pains and actually started to lose my shit. That’s when I decided to try cannabis.

You started treating with cannabis and found relief? How did cannabis help? Yes. I took one dose of cannabis and was instantly better. When I say better, I mean I was 100% better.

Other than what you just said, did you notice any other changes within yourself that you attribute to your use of cannabis? Since that day I have never taken a single prescription pill for anything. Every single doctor I speak with has been floored that I don’t even take Tylenol for my leg. I have noticed a complete difference in my life.

Recently you switched to CBD. Why did you make the switch? I made the switch because I saw what a difference it was making in my sister’s life. I watched my sister change overnight from someone who wasn’t able to get out of bed most days because she was so sick from her autoimmune disease to someone who barely seemed sick at all. She’s still fighting a battle but her quality of life is so much better. After seeing that, I had to see what it would do for me.

Have you noticed any other positive changes through your use of CBD? My body feels so much cleaner without putting that poison [prescriptions] into it anymore. I wake up everyday before the sun comes up fully energized and ready for the day.

If you had one thing to tell others who are like you, amputee’s battling phantom pains, what would you say? I would say to throw out the poison and actually get your life back.

What brand of CBD do you use and why? Green Compass Global, like my prosthetics, its all about the quality.

You can buy Green Compass Global CBD HERE.