Hi everyone! I know that it's been a while since I've written in the New Creature Fashion blog, but today I felt like I would tell you something that is very important to me. This month is National Epilepsy Awareness Month, and I am a person with a voice concerning this issue because Epilepsy runs in my family. Not only do I have it but unfortunately my children have it now. If you have not read in my Family Career Woman blog to see my journey please do when you get a chance.
Anyway...I have created an epilepsy bracelet for myself and my daughter. I currently have no idea where her's is but I'm sure I'll come across it. I've lived with epilepsy all of my life since the time I was 9 months old, and it wasn't until I was about 24 years old that I accepted it and I began to read all the facts about it.
This year for #NEAM2017 I just wanted to share the campaign that stands out to me as well as explain what it means. The first one they have is #AimForZero it's a campaign that helps people set goals for how they will aim for having Zero seizures. Every year 1 in every 150 people who have uncontrolled seizures dies from Sudden Unexpected Death from Epilepsy or SUDEP. I have a some family members who died from seizures.
The way that you can determine if someone dies of SUDEP is if there are no other underlying causes around why they died. Someone dying from a tumor or brain damage that may have caused seizures is not the same as someone dying from uncontrolled seizures. The #AimForZero campaign is to simply bring as much awareness as possible to Epilepsy and SUDEP to decrease the amount of seizures and death.
This campaign is particularly important to me because it has 4 action steps that you can take in order to reduce the risk of seizures or #AimForZero. Those steps are:
- Take Medication as Prescribed
- Get Enough Sleep
- Limit Alcohol
- Strive to Stop Seizures
The first step may seem self explanatory to you, however I know many people who have skipped a dose of medication for various reasons. I know about substance abuse and seizures, I also can say that I've missed a ton of sleep before-especially when I was in college, and jobs that are physically strenuous actually increase my chances of a seizure, and I lose a lot of sleep.
Personally I just went through a season of not having my medication some days because of horrible insurance coverage. I ended up in the hospital several times, and there was an incident at Grady Hospital here in Atlanta GA where I was there for a dose after I had run out, and I ended up waiting too long in the waiting room. I had a seizure while I was waiting there and when I woke up I was being discharged and I still had a ton of drugs in my system. When I'd asked about whether I was given my phenobarbital the nurse told me that I had a pseudo seizure because my CAT scans came back negative and she called the security to come escort me out of the building. When I arrived at home, my husband came with my prescription (which he paid for out of pocket and he looked at my discharge papers. Instead of "Epileptic Seizure" being put on the discharge work I was diagnosed with "shaking". I had let them know that I had epilepsy upon coming in the door, and not only that but I've had treatment before at Grady Hospital for having epilepsy. I was actually transferred from the children's hospital because I had taken my son to the Childrens hospital for his congestion, and I ended up having a seizure myself. In all my years (all 26 of them), I have never experienced negligence on that level. I called with a complaint and all they did is ask me what I wanted them to do about it...Well for starters give your employees a real education about epilepsy. Don't let a novice take on a task as great as epilepsy. In other words Grady has to step up their game. I understand that they are a hospital that deals with a lot of drug addicted mentally ill people, but I'm a woman with Epilepsy. My request for Phenobarbital was not to satisfy an addiction it was to treat a Seizure disorder that I've had since I was a child, and if they had looked back in my records they would have noticed that this is true. All this to say that Striving to Stop Seizures doesn't always come easy, and there's no wonder that people die of it in high amounts. It's already very disturbing to know that 1 in 150 people die of SUDEP, but the thing that makes me the most frightened is knowing I could've been the next victim because of ignorance, and negligence. This is why I'm such a strong advocate for Epilepsy Awareness. I don't want anyone else to experience the level of pain that I have all my life, especially not my children. I'm so happy that they go to The Children's Hospital where they do get the treatment they need, and I hope they never have to got through the things I did as a child or even as an adult. It is very disturbing to know that I was at a hospital where I could have been helped but wasn't. I felt so unsafe and very hurt, and neither have I returned there for treatment because I don't believe they'd ever be able to handle a situation like mine. I've also had a ton of people confirm this theory. One EMT that came and picked me and my daughter up said that EMT training is not something they can afford so they only get to train for 6 weeks. Other people have told me that they can't afford training for several other things as well, so when I use the word "ignorance" I actually mean it in its true definition.
I #AimForZero by knowing my Triggers, and I have a whole list of them from the common cold all the way to stress on the physical body, or the mental. Having Self-Awareness is my greatest weapon, and I use it to keep mine and even the kids seizures at bay. At the slightest sign of a cold I'm taking medication and administering it to my children. My sons seizures are so unique that any form of illness will cause him to have cluster seizures right behind each other. In the past he'd seize, fall asleep after (the postictal phase) and then he'd wake up just to have another one 5-10 minutes after he's been awake. Now that he has his own emergency medication I can give him the medication when he has one instead of seeing 5 plus seizures in a 24 hour span. People who have 15 seizures in a year are more likely to die of SUDEP. So this campaign is important to me on many levels; it's important to me and my kids, and then it's also important that I ensure others have knowledge about this so no one will be in the dark about how to help someone with epilepsy. Situations like the one I've had at Grady should never happen to anyone and I'm going to make it my business to start speaking out about it as much as possible.
My fight is literally my daughter and my sons fight. That's not something I could have ever wished for because it's already very tough dealing with my own seizures but now it is a different thing dealing with kids who have them as well. I understand my children, and I understand my mom as well. I understand what it's like to not want to let go because they can get sick, but because I lived with epilepsy I understand how it is necessary for them to thrive and be taught that they are not incapable because they have seizures.
My fight is literally my daughter and my sons fight. That's not something I could have ever wished for because it's already very tough dealing with my own seizures but now it is a different thing dealing with kids who have them as well. I understand my children, and I understand my mom as well. I understand what it's like to not want to let go because they can get sick, but because I lived with epilepsy I understand how it is necessary for them to thrive and be taught that they are not incapable because they have seizures.
Kana Wear LLC is my platform. If I have to make a ton of purple stuff just so people can get the point that I'm serious about this then so be it. When I was a little girl I had a medical bracelet that I stopped wearing because I felt like it drew too much attention to having seizures. Now I've created my own bracelet. I want people to ask me questions, and I want to give them answers so they'll know what to do in a circumstance where they meet someone just like me.
If you don't take anything else from this post know that people with epilepsy (though weak for a moment) are strong people. They repeatedly face circumstance after circumstance yet they never give up. I've faced discrimination, negligence, ignorance...the list is really too long, and includes external and internal factors. If we don't constantly communicate about what happens to us you continue to advocate ignorance and that's not what I'm about. You destroy ignorance by raising awareness, and most people who hear the word "seizures" freeze up and think it's impossible for this person to work or live in the best way possible. True enough we have limitations but there is nothing too big for God, and for those who believe to overcome. Seizures may affect how we learn, but it doesn't mean we are incapable of learning, it may make us have to go slower but it doesn't mean it won't be done efficiently. I can really go on all day about being way more than a conqueror through Jesus Christ, but you get the picture. Once again Kana Wear LLC is my platform and I'm going to keep using it to bring awareness to the situation. This platform may seem small right now, but it's still one worth standing on, and I will continue to do so as long as I'm alive. So if you can please fight with me. Help me to raise as much awareness as possible and help schools, employers, and even friends and family understand that this is not a joke. Please fight with us! Support the movement for National Epilepsy Awareness Month! #NEAM2017
If you don't take anything else from this post know that people with epilepsy (though weak for a moment) are strong people. They repeatedly face circumstance after circumstance yet they never give up. I've faced discrimination, negligence, ignorance...the list is really too long, and includes external and internal factors. If we don't constantly communicate about what happens to us you continue to advocate ignorance and that's not what I'm about. You destroy ignorance by raising awareness, and most people who hear the word "seizures" freeze up and think it's impossible for this person to work or live in the best way possible. True enough we have limitations but there is nothing too big for God, and for those who believe to overcome. Seizures may affect how we learn, but it doesn't mean we are incapable of learning, it may make us have to go slower but it doesn't mean it won't be done efficiently. I can really go on all day about being way more than a conqueror through Jesus Christ, but you get the picture. Once again Kana Wear LLC is my platform and I'm going to keep using it to bring awareness to the situation. This platform may seem small right now, but it's still one worth standing on, and I will continue to do so as long as I'm alive. So if you can please fight with me. Help me to raise as much awareness as possible and help schools, employers, and even friends and family understand that this is not a joke. Please fight with us! Support the movement for National Epilepsy Awareness Month! #NEAM2017
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