Am I disabled? Now what.

@dannoyes I can relate. I went many years seizure free, only to suffer I seizure at work that nearly permanently took me out. This is now 5 years ago. I filed for disability, and got it, because, there was no was I could safely get to work, yet alone stop having seizures. I decided that until I could get them under control for about 2 years, then I would try and go back to work. That is my goal. However, according to what they consider a disability, seizures are considered a disability, and I know for some people it is hard to consider themself in that category, its like we are put in this category that we dont necessarily want to define us, but, I look at it like, if I have to give myself the space and time to get to a better place, out of safety, respect for my body, I will do that. We as seizure patients endure alot, mental, physical, emotional, spiritual and I think the best thing for us is to cut ourselves some slack, to not be critical of oneself. Sometimes it is hard enough to function without having the pressures of all the other things that happen in life and we put upon ourselves. Sometimes we are our own most critical source. I find this to be very negative to the spirit. I think if we take day by day, and look at the things that we are doing, and moving towards rather than looking at the things we’re not doing. With health, hope, happiness, I pray we will all be there one day. I never give up in that fact.

This is profound and much appreciated. Today was one of those days when it got especially hard. A quick nap and I was back to the land of the living. Thank you sooooo much for sharing!

@terrydalecasino
I had an ASTROCYTOMA GRADE I BRAIN 🧠 TUMOR PNEUMOENCEPHLOGRAM VENTRICULARGRAM ANGIOGRAM AND RIGHT SIDE POSTERIOR TEMPORAL PARIETAL OCCIPITAL LOBE CRANIOTOMY when I was just (11) old in 1970.
Then in 1974 I developed Petit Mal TEMPRE LOBE PSYCHOMOTOR COMPLEX PARTIAL SEIZURES. My father got me into the Millwrights but because of my seizures it was too hazardous.
So I applied for DISABILITY and got denied. So I worked as a full service gas station attendant for 23 1/2 years.
Then I reapplied for disability and got denied again.
But I fought for my disability all the way to the last "APPEAL" you can make and that is to sue THE PEOPLE OF THE UNITED STATES OF AMERICA and that is what I did.
BUT MOST IMPORTANT OF ALL; DO NOT LOOK AT YOUR MEDICAL RECORDS AS MEDICAL RECORDS. LOOK AT THEM AS "EVIDENCE" to your seizure condition.
Don't get "FRUSTRATED" because of all the denials.
A lot of people try to scam the Social Security Administration simply because they don't want to work not because they really can't work like you or I. Companies look at people like you and I as a
"LIABILITY" rather than an asset.
The main thing you have to prove is that doctors have to say that you
"CANNOT" performe
"SGA"! "SUBSTANTIAL
GAINFUL ACTIVITY"?
That is what they are looking for mainly.
I got very "EXTREMELY"
FRUSTRATED until I learned it is a process to keep all the deadbeats off the system and allow through "EVIDENCE" that you really can't work "PERIOD"!
GOOD LUCK 🤞🤞🙏🙏🤞🤞!
FEEL FREE TO private message me on Connect anytime.
I hope this helps you put things more in "PERSPECTIVE"!
Message me with any questions.

Of course from a legal perspective I’m disabled. But I am not consistently impaired by epilepsy. I find the unpredictability of seizures hard to handle. It’s not like, if I don’t follow the diet instructions, my blood sugar will be high and bad things will happen. Or if I don’t take my med’s, my blood pressure will be too high and bad things can happen. It’s like, I can do everything just right, and yes, a seizure. That’s what makes having epilepsy so difficult for me.

You nailed it. I was thinking about the same thing today, and our ultimate challenge is not thinking about it too much. Like, if we think about it too much, we become hypervigilant to our seizures, which leads to other problems like stress and anxiety which leads to more seizures which leads to greater hypervigilance, which leads to more stress, and on and on it goes. There are times that I might consider that having another chronic condition might not be as bad because then you have more known variables. In contrast to our situation, we have to consider our symptoms daily because we have to stay safe. That is why I feel you need to be a "rock star" to live with our chronic condition, because we also have to master our fear on top of our symptoms.

Climate changes can be a seizure precipitant and I admire you writing a scientific paper. You raise a good question. Am I disabled? I can drive. But I have had extensive therapy to understand my limits and vulnerabilities. I have been seizure free over 11 years. I have no problems accepting my disability and limits. The problem I havd had issues with is other people not understanding this and boundary violations. I am currently getting help with this again. Boundaries are about me. Me staying safe and changing me. My counselor reminds me have no expectations. She is referring to me having expectations of others situations I do not control.

Disability is an opinion and not a fact. Your level of disability is determined on how you view yourself. A seizure is an episode, it comes and goes, there's no reason to worry about what, when, where and how bad other than giving consideration to how it might negatively impact others. Seizures do not control me. I decide what I can and cannot do.

The possibility of a seizure does limit me from doing some of the things I enjoy. I'm not attending my granddaughter's graduation because my having a seizure would ruin the ceremony and that hurts. I will join my family afterwards for a dinner celebration.

There are two ways of dealing with that (1) lay around all day in self-pity or (2) consider myself fortunate to be able to celebrate her graduation with my family after the ceremony. I'm fortunate, it was my decision not to go.
I can get in and out of the car and walk under my own power, there's no reason to be concerned with who gets to drive. There are people who are bedridden and unable to leave their homes.

I work hard to put a positive spin on my situation and most of the days I can. Then there are the times when things hit me like a freight train. That's a discussion for another day.

I am not a victim. I have been seizure free over 11 + years. My paternal grandfather had a head injury had epilepsy and after I examined his death certificate he possibly died from SUDEP. I have agency over my life. I decide who and what is safe and healthy for me. I am not perfect but more than able to carry out treatment plans recommended by my doctors. I will say your post is rather offensive to me. I have no more to offer here.

I will add one more thing. There are laws in each state regarding driving with epilepsy and seizures. If someone violates those laws there are consequences. And yes I drive legally by adhering to those laws.

By the way I have a real ID. My dose of lamotrigine was decreased and changed to lamotrigine ER generic 100mg daily. I live in NM. AZ is about 30 minutes away. My neurologist is in AZ. On May 1 I could legally drive in AZ again and I did. On Aug 1 I can legally drive again in NM. You decide. Seizure freedom or.....?