Inability to live a normal life — lost, scared

Posted by davidinvegas @davidinvegas, Dec 20, 2018

I have always had a hard time living what I would deam a normal life. I probably don't need to break it all down. My epilepsy has never been fully under control. 32 years or so. The number of seizes isn't the problem, although 1 is to many. About 2 a month, very severe. A lot of injurys over the years. Mostly head injuries. Getting to be a real problem on my mental outlooks. I have had a lot of changes in my life over the past 6yrs. Rainging from divorce too mom passing away, selling her house. Me moving and not being able depend on anyone. Taking care of business is feeling farther and farther away. Afraid, embarrassed and just plain lost. Getting work is proving to be tough mentaly and physically. Leaving it at lost, scared, can't see any kind of light in my personal tunnel.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

@jakedduck1

@davidinvegas
Do you have a rescue med?
Who gives it to you? Do you have a roommate?
How long do your seizures last? How long are you in a post ictal state? Just curious, I know a couple people who had Post-Ictal bless, where you are extremely happy after the Ictal phase. Did that ever happen to you? I never did, I was always to miserable after.
I must have liked 20 questions as a kid, lol.
Later buddy,
Jake

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I had a roommate years ago with epilepsy. He applied for ssi disability and was denied so appealed. Got up to court before supreme Court and they said there is a rule in ssi disability that states uncontrolled seizures is an automatic win. Do realize disability is contingent on having worked enough to qualify for it and then is 40 per cent of what you previously made. There is supplemental security income which can add to the regular ssi if you have very low ssi. Some states have help for disabled. Hope this info helps you in making a decision on whether or not to keep on with disability request.

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Thanks for those good suggestions, @johnhans. I hope that @davidinvegas will look into SS disability benefits.

@davidinvegas have you talked with an attorney or a Disability Advocate regarding applying for disability benefits? They can often assist you with this process. While they do take a fee after the disability is awarded you would still have some financial help as you seek employment. Also, does your state offer any vocational counseling for people with disabilities? If you have a credible disability you can often be trained to do jobs that would fit your physical abilities and/or limitations.

I would encourage you to continue to search for avenues of financial assistance as well as job training.

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Hi, this blog makes me get a good feeling. I've never had any kind of support like this. No one I know understands what I go threw physically and as of late mentally. I'm working with a lawer right now. Of course I've been informed that it's going to take 2 years to get in front of a ajudicater. I'm going to start some free training courses that will fit my needs and get me a job. I don't know if I should just assume I'm not going to get disability. 7 to 8 years of trying.

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@jakedduck1

@davidinvegas
Do you have a rescue med?
Who gives it to you? Do you have a roommate?
How long do your seizures last? How long are you in a post ictal state? Just curious, I know a couple people who had Post-Ictal bless, where you are extremely happy after the Ictal phase. Did that ever happen to you? I never did, I was always to miserable after.
I must have liked 20 questions as a kid, lol.
Later buddy,
Jake

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Sorry for no talk. No rescue meds. Insurance won't cover. As of late they last for long periods of time. It always takes a trip to hospital and when I get home it's a longer period of time to recover. It's funny that everytime I go into hospital it's assumed I'm on drugs. Very annoying. Transport units are rood, so says my roommate. I'm not comfortable living on my own yet so I do have roommate. Trying hard, learning from you all. Thank you.

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@davidinvegas, I was just looking at my notifications from Mayo Connect and saw that you posted. Just wanted to add my continued support to you as you work through all the issues that you are having. I've been struggling with some of my own things over the past couple of weeks, and it's nice to hear of others who are making their ways through challenges. 🙂

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@davidinvegas
Good morning,
It’s been awhile since we talked. Sorry to hear about the 2 year wait time for Disability. That surprises me since you have regular uncontrolled seizures that require medical intervention to stop. I’m perplexed why your doctor doesn’t believe you need a rescue medication that would hopefully stop the seizures so you could avoid going to the hospital. You said “Insurance won’t cover” but it seems the doc could get a pre-authorization to get it covered. Seems these insurance companies have the attitude, if you live fine, if you die fine just make sure it costs us little if anything. The longer a seizure lasts the higher the potential of it continuing is. I hope your training courses are going well.
I really admire you for all you’ve been through and what you’ve accomplished, your doing good. Keep up the good work!!!
All my best,
Jake

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@davidinvegas

Hi, this blog makes me get a good feeling. I've never had any kind of support like this. No one I know understands what I go threw physically and as of late mentally. I'm working with a lawer right now. Of course I've been informed that it's going to take 2 years to get in front of a ajudicater. I'm going to start some free training courses that will fit my needs and get me a job. I don't know if I should just assume I'm not going to get disability. 7 to 8 years of trying.

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Hi @davidinvegas

You are certainly being proactive. This is so important! You are your own best advocate!

It might be a good idea to keep working with the lawyer for the disability. When it is finally approved (when it comes before the adjudicator) you will probably get a very nice lump sum going back to when you first applied.

I'm also glad to hear of the training classes. If you are comfortable sharing more: what type of training are you receiving?

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@jakedduck1

@davidinvegas
Good morning,
It’s been awhile since we talked. Sorry to hear about the 2 year wait time for Disability. That surprises me since you have regular uncontrolled seizures that require medical intervention to stop. I’m perplexed why your doctor doesn’t believe you need a rescue medication that would hopefully stop the seizures so you could avoid going to the hospital. You said “Insurance won’t cover” but it seems the doc could get a pre-authorization to get it covered. Seems these insurance companies have the attitude, if you live fine, if you die fine just make sure it costs us little if anything. The longer a seizure lasts the higher the potential of it continuing is. I hope your training courses are going well.
I really admire you for all you’ve been through and what you’ve accomplished, your doing good. Keep up the good work!!!
All my best,
Jake

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Good morning. My stupid anxiety is just getting hard to handle again. I know it's just in my head but it's my HEAD! I've always wondered what affect these meds have on me metaly and physically. I'm. On 5 meds. I just don't know what feeling normal is. Is it just me or do these meds affect me, how and how much. Went threw a job service from the state that will train and place me in a job that fits my situation.
Just stuck in my head that I know I'm going to have a problem again. Just a matter of when and where. Trying not to lock myself away and worry. Best I can do is keep going one day at a time. Dreams, meds cause lots of them? Don't remember dreaming so much. Woke up this morning and I don't even want to repeat what my thought was. Going out to theripest tomarrow. Just need to find out what feeling normal is. Don't like that word, to broad of meaning. Only one I can think of though.

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@davidinvegas

Good morning. My stupid anxiety is just getting hard to handle again. I know it's just in my head but it's my HEAD! I've always wondered what affect these meds have on me metaly and physically. I'm. On 5 meds. I just don't know what feeling normal is. Is it just me or do these meds affect me, how and how much. Went threw a job service from the state that will train and place me in a job that fits my situation.
Just stuck in my head that I know I'm going to have a problem again. Just a matter of when and where. Trying not to lock myself away and worry. Best I can do is keep going one day at a time. Dreams, meds cause lots of them? Don't remember dreaming so much. Woke up this morning and I don't even want to repeat what my thought was. Going out to theripest tomarrow. Just need to find out what feeling normal is. Don't like that word, to broad of meaning. Only one I can think of though.

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You bring up an important point, @davidinvegas. Sometimes it is difficult to determine what feelings are normal and what feelings come about as a result of health disorders and medications.
Does anyone else want to discuss this?

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@davidinvegas
I agree with @hopeful33250, an excellent point. I’ll take a stab at it but remember I’m abnormally normal. By the way, I don’t like that word either.
Always be yourself David, you are perfectly normal my friend and never think your not and NEVER let anyone tell you otherwise.
Don’t try and fit into someone else’s idea of what they perceive normal to be. My belief is there’s only a perceived normal. You don’t want to lose your individuality. Who’s to say what normal is anyway. Personally I think the so called “Normal” is highly over rated. I’m definitely not normal. I refere to myself as uniquely abnormal and I’m fine with. Not so sure a psychiatrist would be okay with it though but I don’t care. Who wants to be just like everyone else? Create your own normal.
Your doing a fantastic time job coping with what life threw at you. We who have Epilepsy have a different normal anyway. My normal was to have seizures everyday. Now my normal is not to have them. Last one was 6 years ago, YEAH!!!!!
I’d be curious what your counselor has to say about that.
Wishing you all the best,
Jake

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