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.

Friend, I see you.

First, thank you all for reading my blog. I wanted to create a space where I can openly talk about the “hard” things in life and I am working very hard to create that space.

I was inspired to write this entry by one friend in particular and when I decided to write this post- I guess it made me more aware of other friends, and even myself that have also fallen victim to these thoughts.

I hope you see that I am coming from a place of love and want nothing but the best.

Dear Friend,

I know you feel invisible but I wanted you to know that I see you. I see the hard work you put in each and every day because you are me- we are the same.

Each morning, you rise from bed, exhausted. I bet you are wondering if you might steal a quick moment for rest some time in your very busy day before your feet hit the ground.

I bet by the time you pour that first cup of coffee you have abandoned your plan for a moment’s rest in lieu of just going to bed earlier.

We both know that’s not going to happen.

You get the kids ready, it’s difficult because one can’t find their shoes and the other still wont get out of bed. They will just have to buy lunch today- you need to remember to add money to their accounts.

You’re stressed – because you have a meeting with your boss today, who is very much single and childless and therefore not sympathetic. Maybe they will give that promotion you deserve to Jenkins because she’s hungry-af.

Your husband, who has been sleeping gets up, get’s ready for work, grabs breakfast and coffee to go, kisses you on the cheek, hollers goodbye to the kids and is out the door.

Must be nice.

You drop the kid’s off at school, only to realize that child #2 forgot their lunch. You circle back only to run right into Ms. Schwarz, who makes you feel like shit for not every being able to volunteer as classroom mom.

You get to work, late. Jenkin’s eager-ass is already in the meeting and she had time to get donuts, and not just any donut- she stopped and got some bougie donuts that are so insta-worthy you could die.

Fucking. Jenkins.

Friend, I see you.

You finish the meeting, go about your work day which is a non-plus. You then sit in traffic on the way home to pick up the kids. Dinner is going to be a challenge because your husband said he would stop on the way home but now he has to work late and you didn’t have time to grocery shop this weekend.

Nonetheless you manage to find something that the kids will all eat.

Bath time.

Did the oldest have a project due?

Is homework done?

Wait, did I just hear my work email go off on my phone?

Your husband gets home. He’s had a hard day and isn’t very talkative- he complains that the house is messy and goes off to play Xbox with his friends who are waiting on him to join them.

It’s now 9pm and you go take a shower and silently cry.

You cry because you are so tired.

You cry because you are afraid you are a bad mother.

You cry because your husband doesn’t help.

You cry because you work your ass off at work, are entirely capable, and that promotion that should be yours went to Jenkins.

You cry because you feel like a failure.

You cry because you think you are alone in this, that no one else is as bad at this as you are.

Friend, I see you.

I AM YOU.

You are not a failure.

YOU are not a failure

YOU ARE NOT A FAILURE!

Friend, I see you .

I see the caring, wonderful woman that you are.

I see a person who puts the needs of their family above their own.

I see a person who works so hard to do such a good job at work to be able to be that second stream of income for their family.

I see you push your dreams aside for the development of your husband’s and children’s dreams.

Friend, I believe in you and I want you to know that you are not a failure.

I wish you could see your position in the world the way that I see it.

I wish that you could forgive yourself and let go of that fucking mommy guilt.

You are doing the best you that you can and your “best” is good enough.

You are good enough.

Please, please, please know that.

Friend, what I want you to understand is that it is okay to have a messy house, it is okay to not volunteer for the class mom bullshit, it is okay to let Jenkins get that promotion (you and I both know she will fuck it up anyway).

The failure you feel, is self-imposed. I know it is hard to hear, it was hard for me too. Remove the pressure you put on yourself. Quit focusing on the moments in the day where your feel like a failure and look at the moments when you were so clearly crushing it.

Examples: You helped your daughter with her with homework- did you know that she has struggled to learn that topic until you sat down with her? That is a win.

Or what about your ability to MacGyver the shit out of dinner- did you know that your kitchen skills are inspiring your son to be a chef?

Mommy guilt is a self-imposed prison.

Friend, I see you…

Can you see me?

Meddling

I wrote a blog post not too long ago saying that we need to talk about hard things.

This will be a hard post for me. I don’t want to write this post because my emotions are still raw from this and I am still trying to forgive the people in my family who, through their own willful ignorance and total disregard for my feelings have broken my heart.

My husband and I were blessed with our daughter in the fall of 2005. When she was a year old we started to try for baby #2. However, after more than a decade of infertility we were not so fortunate.

While on vacation for Christmas of 2016, I told my husband that I really felt that we were meant to have another baby and I asked him to give fertility treatments one last try. I told him I felt that we were meant to have more babies and, to my surprise, he didn’t need any convincing.

When we got back from our vacation, we immediately called our doctors to start the process. Everything seemed to line up, my husband did need to see a specialist with a 6 month wait list but I happened to call and there was a cancellation and he could be seen the next day. Further, the doctor was able to diagnose my husband’s issues quickly and he was in for a minor surgery the following week.

During that time, my doctor ran all the tests and I had a quick procedure as well and we were all set.

Please understand that I truly felt in my soul that we were going to FINALLY have another baby- actually, I thought we were going to have twins if I am being honest.

We started looking for a bigger home and when we would walk through new homes I would say to him, “this isn’t the house for our family- I can’t picture the twins here.”

Then we walked into what turned out to be our current home and I knew- I KNEW that this this was the home for my husband, daughter, and the future twins we were going to have.

Everything felt perfect.

Fertility treatment was rough on me. After 6 months, my doctor thought I might need another procedure and then my husband blindsided me by saying that he no longer wanted to continue with the process.

Just like that, it was over. My hope was gone. I couldn’t get pregnant if my husband wasn’t willing to participate anymore.

To say I was devastated would be an understatement. I was heartbroken. Worse yet, the person who broke my heart was the person I love most on the planet.

I grieved.

I grieved the loss of the twins I was so sure we were going to have.

I still miss them.

It took me a very long time to move past that. A. Very. Long. Time. I also had to forgive my husband because I blamed him for my heartbreak.

After 2 years I could finally look at a baby and not feel a deep sense of loss.

Then comes the phone call that ripped my heart wide open. There are a set of newborn twins in my family and they now need a foster family and possible adoption.

These twins are located in another state, their mother very much loves them and I very much love their mother- my sister.

I cannot, for the life of me, figure out why they are calling me for this as I am 800 miles away and there is a lot of family much closer than I am. In fact, I had spoken to the social worker previously and was told that I wouldn’t ever be an option unless my sister’s kids were placed for adoption which wouldn’t happen. The social worker and I did talk about being a good resource for my sister and I said I would do what I could to help her from 800 miles away and I even made a trip there to help my sister last month.

Confused, I asked the case worker and the attorney, “Why me? What has changed form our last conversations?” Their responses both were, “Because we interviewed multiple family members and they all said to give the twins to you. No one in your family here is willing to help and they are all positive you will.”

That’s when a door that was closed so tightly (for my own mental health) was busted right open.

Now, before you get all excited that my wishes came true. Due to my daughter’s illness and medical bills we cannot bring in two newborn babies into our home. I have agonized over this, please don’t judge my decision.

But this hurts me. I feel this sadness in my bones. Do you know what it feels like to say no to something you have prayed for so hard for so many years? Do you know how devastating it is to not be able to help your family? When I say I have agonized, I have. I have tried to figure out some way to help these babies- even though they are not mine and there is strong possibility that their mother, my sister, will get them back and I would just be a placeholder. I have prayed to be able to hold a baby longer than just the five minutes I get when I meet one of my friends’ babies. I have prayed for midnight feedings and for spit-up on my shirt. I have prayed so hard.

My heart is raw and exposed.

I am so angry at the family members who, without a thought or care for anyone other than themselves, said “give the twins to Trina.” They did it without thinking. I don’t care if their intent wasn’t to hurt me, they did. They assumed I would just do it. They never thought about how much it would hurt me to take in two babies, or worse yet, not be able to take in two babies after I have spent more than 10 years doing everything possible to have another baby of my own.

I would cry in the bathroom each time my cycle started. I wanted this so badly and here I am turning it away…

This blog post isn’t over, I just can’t continue writing it.

Life’s Lemons that Insurance Doesn’t Cover, Still a Blessing

It has been a while since I have wanted to sit at my computer and write. I have so many topics running through my head and I can’t really commit to any one. Sometimes the topics sit at the front of my brain begging to be written and yet I silence them.

I have chosen not to write.

In the last 5 weeks, I have had my world turned upside down. It has been hard blow after hard blow.

My daughter developed catamenial epilepsy and between 2 ER visits, a 2-day hospital stay, and multiple doctor visits- insurance doesn’t want to pay because they fail to see how it was a “medical necessity” to stay in the hospital.

I can’t even understand that.

My daughter was admitted by an emergency room doctor who worked with a pediatric neurologist and the insurance said it wasn’t a medical necessity? I don’t get it. But our fucked up medical system isn’t what I want to write about.

After my daughter’s hospital stay, my transmission on my 4 year old car went out (only 81k miles). The day after I got my car back, someone rear-ended me.

Seriously, what the fuck?

I cannot make this stuff up.

If this would have happened to me a few years ago, the old me would not be able to cope. I would be crying wondering why all the bad things are happening to me.

I don’t know when it happened exactly. When I became a person who chooses to look to the positive or to find the lesson learned in the hard times but I am glad I have changed. I am glad that I have learned that despite all the bad things I have many blessings in my life.

When life goes sideways I try to remember all the things I am thankful for. This is not some new piece of advice- I am not reinventing the wheel with some helpful trick to overcome all the bullshit that happens in life but this is what I do and it works. I seriously sit down and list out all the things I have to be thankful for. There is something truly eye opening and humbling when I see how blessed I really am written down in bullet form.

Okay, so bills may be late while we work on a new budget to fit in a new $4.5k transmission rebuild, a $22k 2-day hospital stay, and a $4k 4-hour emergency room visit. At least my daughter is on a treatment plan and I am able to get approval on a small loan to pay off my transmission repairs- some people would be without a car permanently.

Blessings, like beauty, are to the eye of the beholder. Some people count blessings as all the things they have around them, or by the house they live in and the car they drive… and if people feel that those are blessings who am I to judge? However, to me, blessings are the people in my life, my husband, our daughter, my brother and his kids, and I am blessed beyond measure with my circle of friends and family or “framily” as I like to call them.

These are the the people who will read my blogs entries and find the typos for me, the people who will offer to watch my dogs while I am in the hospital, the people who I can call because I am stuck in traffic and I need my daughter picked up by a certain time- who will not only go and pick her up but take her to dinner so she stays on schedule.

The world is full of good and wonderful people and I am BLESSED to know so many of those people.

A few years ago, I was asked the question, “If you died today what would be said about you at your funeral?” I wasn’t entirely sure, some people would say I was a good person but there were definitely people who would say I was a horrible person. I know I am never going to win over the entire population of the world but I for sure know that I want to be remembered as a person who truly cared and a person who helped make her small corner of the world a better place.

Life is hard, it will knock you down if you let it. It would be so easy to let that just happen. But getting up each day and fighting and working hard towards a better life is so much more fulfilling.

To my blessings- my framily. Thank you for all that you do for me and mine and I hope that you all know that I would be there for you as well.

Thanks for reading, Trina

Seizure the Day

We had a very eventful 4th of July holiday. At the risk of sounding cliche, it was, at first, a day just like any other day. Holidays are usually very low-key in my household because my husband usually has to work as was the case this day too.

I took our daughter to the neighborhood pool where we spent two hours of the afternoon there and then we went home to wash up and cook dinner.

Just after dinner we sat down to watch Houston’s Freedom Over Texas event on TV. My daughter asked for a dessert so I went into the kitchen to prepare it. A few minutes later my daughter made a weird noise. With my back to her, I asked her what it was. No response. I let a few seconds go by and she made another weird noise. I, again, asked her what was going on. No response. I finally said to her, “Hey you need to answer me, what’s going on?” I turned around, and started walking to the couch and that’s when I realized she was having a seizure.

I called for my brother to help me but something was “off” about this seizure and I told my brother to call 911. EMS was at my house in less than 2 minutes (no exaggeration). My daughter was in and out of consciousness and was now complaining of a bad headache and vomiting. We thought it was best to take her to the hospital as she, at the very least, could use fluids after all the vomiting she went through.

Annnnnd here’s the backstory:

When my daughter was born, literally during the birthing process, there was some sort of accident and she was left with a Subarachnoid Hemorrhage (SAH). This caused my newborn to have Grand Mal (now called tonic-clonic) seizures. My daughter, on her second day of life, had already had a Spinal Tap, X-ray, MRI, CAT Scan, EEG, and so many more tests.

The doctors had no idea the extent of the damage her brain sustained and it was going to be one of those “wait and see” things for development.

We were also told that she will be subject to seizures the rest of her life.

We monitored for years with her neurologist and there were no seizures, so we were released from their care.

We thought we dodged a bullet.

There was one time when she was in kinder that she had a small seizure but after a battery of tests and monitoring they determined that it was an isolated incident and that the seizures weren’t back.

Over the last few months, I have noticed my daughter in what I thought might be a postictal state – but as quickly as I noticed it she would come out of it and brush me off. I thought it was misplaced worry.

The event on the 4th of July made me realize our seizure-free honeymoon is over.

This seizure was bad, not tonic-clonic bad, but her postictal state lasted nearly 3 hours, we are told the average is 30-60 minutes. They told us she would be exhausted and she’s been resting since we got home from the hospital right at midnight on the 4th/5th.

The freedoms she once enjoyed, like having her bedroom upstairs, bathing by herself, playing on her phone or tablet, swimming and so much more were taken away from her just like that (she understands it is for her own safety). She’s a bit bored since she can’t really engage with electronics and so I am trying to find “fun” things for a 13-year old to do.

We have since spoken with her PCP and she has an appointment on Monday. We are also looking for a new pediatric neurologist to discuss testing, treatment, and any options we may have.

I have had so many people reach out to me regarding her and lots of people have brought up CBD as a possible cause of the seizure. She does take an all organic, hemp-derived extract, CBD Isolate that comes with a Certificate of Analysis (COA), she gets 250MG one time a day before bed. She had not had any the day of the seizure. We did tell the emergency room physician that she takes CBD daily and that she had not had any, the doctor said that their was no correlation with her seizure and her use of CBD and we needn’t discontinue her daily dose.

We give her CBD because of the brain damage she had sustained from her SAH. CBD can be neuro-regenerative and she has made amazing strides with her developmental delays since starting CBD.

In no way do I think that the CBD takes contributed to the seizure, in fact, CBD is actually used to control seizures and that, in a lot of ways, is the main reason for CBD’s initial rise in popularity. Her seizures at birth and resulting brain damage from the SAH are the reasons I began my investigation into cannabis for medicinal use.

SHE IS THE REASON I BELIEVE IN THIS.

Thank you for reading, Trina

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.

Sources:
https://www.mayoclinic.org/diseases-conditions/phantom-pain/symptoms-causes/syc-20376272

Let’s talk about hard things!

It is going to take me a minute to get to my point so hang in there, there’s gonna be period talk first but not like gross-gross period talk.

I have ALWAYS been one to discuss my flow because I feel like it is something that SHOULD be discussed – it is natural. I mean, half of the world experiences a menstrual cycle at some point. However, what we don’t realize is that so many women are NOT experiencing “normal” cycles. Also, with my medical history, more people have investigated my uterus than I can actually count so any “shame” I would have about it flew out the window years ago.

I have had PROBLEMS ever since Aunt Flo first made her initial stop to visit me back when I was 11.

Side note, I started my flow on my grandmother’s watch and that alone was the worst thing ever.

I used to miss school all the time because my period was a monster but back then the doctors were quick to dismiss my issues as “dramatics.” I will never forget the 3rd doctor I was taken to see and she said to me, “Honey, you need to suck it up. We all have pain. You are costing your parents money.” I remember being so deflated because I could not accept that this amount of pain and the basically never ending cycle was what I was going to experience the rest of my reproductive life. Thankfully my mom took up the battle for me- she wasn’t going to stop until we had REAL answers.

My teenage years were pretty awful and I was so depressed and in a lot of pain. I was taking birth control that was so strong I had morning sickness. My classmates made me feel like I was a misfit for missing so much school due to being “sick” (because back then you couldn’t tell people that you had a period from Hell as that would be inappropriate to discuss). And, so, for years my parents had me on all the “typical” antidepressants such as, Paxil, Zoloft, and Effexor to help me “adjust” to my fate.

My 20’s were spent trying to get control of my now surgically diagnosed Endometriosis and PCOS. I was blessed to have one child and then suffered miscarriage after miscarriage and underwent unsuccessful fertility treatment twice.

Looking back now I feel like EVERYTHING is related in one way or another. I believe my Endometriosis, PCOS, Infertility, Miscarriages and Autoimmune Disease are all connected. In fact, we know Endometriosis and Autoimmune Diseases are both based in inflammation. However, that is a post for another day.

My Endometriosis is largely “under control” in comparison to how it used to be. I have had many scrapings, D&C’s, and ablations and I have just learned to deal with the pain. I have found some relief when using CBD both topically and orally as opposed to abusing Advil and Tramadol. My PCOS is always going to be a struggle – especially with weight.

My periods, on the other hand, are still fucking awful and I will paint no picture to the contrary. In fact, the only picture one could invoke would be a crime scene. You know, I use to get so mad at the inspirational messages on my pads, “Have a happy period.” Have a happy period?! TF are you talking about pad? I am bleeding like someone severed my femoral artery while my uterus has my soul in a death grip during a lightening storm inside my body and I still have to do everything I am supposed to do in a day. Fuck you and your “happy” periods, just let me be in my misery. I would almost rather have my pad tell me a fun fact like a Snapple cap or give me a a tip on how to get blood out of my good undies because my period showed up early (btw, hydrogen peroxide works great).

You see, a period like the above is NOT NORMAL but to someone who has Endometriosis- I just hit the nail on the head!

And here it is, the point behind this post!

We need to talk about hard things.

Ladies People, don’t take things at face value. If you feel something is wrong seek clarity and if you feel like a diagnosis is wrong, get a second test done or see a new doctor. For the most part, I believe that doctors do genuinely want to help most of the time BUT a lot of them rely on text books and if you don’t fit a text book (i.e., an 11 year old girl with severe endometriosis or a 34 year old female that shows symptoms for a very rare autoimmune disease that doesn’t typically hit until the late 50’s) the doctors are going to be baffled because a lot of doctors have to operate within the guidelines of their license and the medical boards that they answer to.

I don’t do these posts because I like the attention. In fact, I often want to sign off of the internet for days until the posts blow over because it is hard to put it all out there. I don’t think it will ever get easier for me. But I will tell you this, the more I post about the hard things the more people come to me and say, “This is me too- because of your posts I saw a doctor and I am feeling so much better now” or “I have RA and wanted to take less of my medications and my doctor approved your CBD and I am feeling SO MUCH BETTER.”

Why not be real with each other? And now I am about to sound like the hippie I am, be real with each other and through that truth we can help each other. I can tell you I read and relate to the real posts on social media way more than I do the perfectly edited IG picture of someone sitting on a windowsill pretending to read Wurthering Heights.

Don’t get me wrong, I love a good photo but I love real talk and being authentic. That’s why this blog is called UnSocially Acceptable because I want to talk about the things that are largely considered to be unacceptable in a social gathering or on social media… natural things that should be talked about so we can all know that we are not alone. So many people struggle. I struggle every day and I would love to hear that someone relates to me, there truly is strength in numbers. I really do believe that.

Y’all, the internet was invented for 2 reasons:

  • 1- to share hilarious and adorable animal videos; and,
  • 2- to connect with others.

It is my goal to make my connections mean something. As I get older I find that the most valuable commodity is time and I want everyone I know and love and all the people I will eventually know and love to have it in spades.

Thank you for reading, Trina