My blog through this nightmare

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I tried to read it, but the black background and white letters seem to be triggering something. Weird.
 
Thanks for posting. It is hard visually for me also, so I wasn't able to get far into it. :(
 
I will go in and change it tomorrow. Seizure today and ativan I can barely stay awake. Night!

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All changed to a white background and very basic. Its interesting- the previous was always easiest for me to process so I just went with it. I also find reading Kindle black with white most calming to my brain. Odd how we all handle it different. I don't read my blog- so Thank You for the feedback. I appreciate all of you, your words and experience as I enter this journey. Please let me know any comments. Blogging is a very public and healing journey for me - strengthened by those comments and intelligence.

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Sarah,
I found the black on white combination very easy to read. I can't deal with black backgrounds, it's very difficult for me to discern the words, and have always wondered why people use them. So I find it interesting that you find them the easiest to deal with.

I am amazed at all you have been through, how epileptic seizures affect you. I have had none of that. I have only had grand mal seizures so I was out of it during the whole seizure episode and only when I came too did I "just know" that I had a seizure. If I did have partials I didn't recognize them as such nor where they of any long duration. I've been seizure free for a long time but still deal with the side effects of Dilantin and an epileptic brain.

But nothing like what you are experiencing.

I do not know what course your epilepsy will take but I do know you are very strong person. That emanates from your posts. I believe your strength will get you through this, will guide you to finding a way to deal with your epilepsy. You will have to let go of some of what you were doing but there is always so much more, I know you will find a way to rebuild your life around your epilepsy. You will find your way of coping. And that will tame the epilepsy monster for you.

For now, all I can say to you is the same thing I say to myself ... Live each moment! :rock: :flowers:
 
Dolores I can't thank you enough for taking the time to look over my blog. I always pray it will someday help someone else going through the same or similar. You can't imagine how I wish I would pass out. I have prayed for it during really bad seizures. I know I am unusual but hoping by sharing here someone will say that I am them 5 years ago AND......

My doctors have always called them grand mals so I didn't know I wasn't like everyone else (except being conscious) until a few weeks ago when my son looked seizures up on youtube and found NOTHING like me.

Thanks again!

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SassySarah said:
My doctors have always called them grand mals so I didn't know I wasn't like everyone else (except being conscious) until a few weeks ago when my son looked seizures up on youtube and found NOTHING like me.
Click to expand...

Have the doctors done a VEEG on you?
 
Yes they have. During my 6 week hospital stay there was plenty of time. I was at a teaching hospital and a group of doctors and residents stood in my room more than a few times arguing not the movement being tonic clonic but how I could be conscious- even made one go eight hours to see if I would lose consciousness. I instead went into cardiac arrest. I however never saw a epileplogist until the last few days. He is still my dr and for some reason never got the video until recently

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SassySarah said:
http://themanhattanstorm.blogspot.com/2012/08/freak-weirdo-monster-epileptic-whats.html?m=1


This blog is in response to a rough week, primarily with family.

My seizures as many of you know are out of control. Today or tomorrow unless a miracle occurs and keppra xr suddenly begins working I will be going into the hospital indefinitely to get my seizures under control. I am so out of kt and confused my amazing hubby has been dealing with the dr multiple times each day.

Having seizures so violent I have asked,like last time, that someone stay with me around the clock. There were numerous times (always have auras) where I would begin seizing push the call button and between 5-20 patients they would show.

I was told if my hubby or friends hadn't been with me restraints would have been required to avoid injury. This was last August.

This August here I am, my mom has been bragging that she has 100s of sick leave hours and is here to help - we just never ask. We never ask because it always is a nightmare.

Monday my husband let them know I am looking at hospitalization of an undetermined length near their home, we have a child with a badly broken ankle, issues at work, if they could help this time, it would make a world of difference.
The response we will stop by when we can after work felt like a bomb an already sensitive subject. My sister told me the hospital can't let you break your ankles twisting them or kicking them, they can't let you punch or claw yourself they can't let you twist your back in half (none of my family has intentionally seen my seizures). If the hospital does we'll sue them. I was left physically speechless and lost by the conversations. The thought of restraints when my caring husband, son or friend usually carefully place pillows, sock my hands and/or hold them and wipe cool towels even ice pain areas immediately is care and love. Restraints sound painful, hateful, scary and mean. If it was cancer they would be there, if I was having surgery and scared to be alone they would be there. I have tested the later. I can understand being alone with visits if my situation was different. I feel as I explained like I have become a monster no one wants ti witness what really happens.....

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Click to expand...



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I recently joined this site and I am forever greatful! It is so nice of you to share your blog... it is nice to know someone is out there going through the same thought process.... when I tell people I gave epilepsy, its like I am a monster with a bad illness, its upsetting! Thank you for sharing!
 
i feel the same,,,my family and the arse i married treated me like that due to epilepsey,anything else people would not bat an eye...it is indeed very upsetting
 
Looks really good, much easier on the eyes, great job!
 
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