Now what???????

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Tamarah

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I feel like my life is falling apart. I am no longer able to work as an RN, as I have for the past 15 years. Which is putting my family in a financial crisis. I also feel so helpless, I don't want to go anywhere public, because I don't wast to seize while I am out.
I also have suck a loss of independence, I can't drive, bathe alone, swim. And I am so tired of falling during a seizure and cracking my head, again.
And worse of ill I feel like my doesn't deserve this, and one of my daughters witnessed one of my bad seizures, and she is scared to death that I am dying....
Encouraging words??? :e:
 
enjoy the fact you are alive considering your alternatives, and of course :-) you are never alone.

try you best to explain to your kid what is going on, and maybe she can be there a little for you to.
 
I do feel very blessed to still be here for my sweet children. And it is nice to hear others like me speaking of their struggles. And I have spoken with my daughter. But she is 12' and has lost all 3 of the great grand parents in the last 8 weeks...... So it's been tough!!!!
 
Yes,having epilepsy can turn your world upsides down.But having a good doc and nuero can make all the difference.Once they get your medication right,with any luck your seizures will decrease in freqency and severity.

And as has been said above,your daughter might be there for you a little more once you have explained it to her more.It is a difficult situation you are in.But always remember everyone at CWE is there for each other.Just please don't let epilepsy get the better off you,you are stronger than that.

All the best!
 
Hello and welcome! Wow, from reading your bio it does sound like your world has been turned upside down, to put it mildly. Having your family scared of seeing your seizures is a hard thing to deal with. I think that in some ways it can be harder on them than on us. One thing you have going for you is that being in the medical field you aren't scared of hospitals and you're used to dealing with doctors and other medical professionals. I know that the medical world can be intimidating for a lot of people. (I have some first hand knowledge of that, because I was a medical social worker for about 15 years, and my sister and one of my daughters are RNs). In spite your knowledge, though, the upheaval and loss of control in your life is very scary, no question. I know, believe me.
What is the chance of getting off of or reducing some of the meds that you're on? The combined potential adverse effects of those can't be a good thing. Again, though, that is nothing you don't know, and balancing seizure meds is a real trial-and-error thing. One thing that I think is important for the well-being of your family and friends (and yourself, of course) is to learn all you can about what is going on with you so that you can feel comfortable talking about it and answering their questions. The more matter-of-fact you can be about all this, the more comfortable others will be, and the situation will seem, and be, less out-of-control.
Anyhow, we are all here for you, so use this place to help you. You'll get through this!
 
Tamarah said:
I also feel so helpless, I don't want to go anywhere public, because I don't wast to seize while I am out.
I also have suck a loss of independence, I can't drive, bathe alone, swim. And I am so tired of falling during a seizure and cracking my head, again.
And worse of ill I feel like my doesn't deserve this, and one of my daughters witnessed one of my bad seizures, and she is scared to death that I am dying....
Encouraging words??? :e:
Click to expand...

Hi Tamarah and welcome....

.... to our unfortunate little world. No, no one on this earth deserves this awful brain disorder. Yes, having E is something that does take time to get used to, but it does get better and you plus your kids will endure. With you having a medical background will be of great benefit for you. And none of us want to have a seizure in public, but we cannot let E take a grip on our lives, either.

I've had E since I was 22 years old and suffered 2nd and 3rd degree burns on my way out of the shower. I had my first TC seizure that morning. So I've been in and out of hospitals and have had injuries. I also have two grown children who witnessed many CPs and TCs. They witnessed their mom being taken away in an ambulance because of a bad TC. And at one time, they thought their momma was dying, too. Plus, my hubby at the time was a pilot, so we were on our own a lot. But now both my kids are grown and both made it thru college. My son graduated magnu cum laude and went on to Law school. And after me trying many meds, having brain surgery and now the VNS, I still have seizures. As of now, I do not drive, I live alone now, but I take public transportation and I am not afraid to shower. I just have to be cautious.

Educate your children about E, what to do if/when they see their mom seize. Let them know it will get better. Is there a local Epilepsy Foundation group you could join? They would have books for kids about E.

Here is a great resource for more info:
http://www.epilepsy.com/epilepsy/resource_library

Hang in there and keep us posted.
 
Know one should swim alone.I take showers.I've never driven but I was independent and I still am and I've had sz's 50 yrs.Have you thought about wearing a helmet if your having a lot of seizures and falling?

Have you talked to your doc about trying another med since this one isn't working?
Know one deserves to have seizures but it can happen to anyone.

You have know reason be embarrassed you can't control your sz's. That's life I know and if someone cant handle your sz's they have the problem. You need to get info from your doctor about your sz's to explain them to your daughter.
 
Welcome Tamarah. You're right that epilepsy has a way of changing your entire world, and how you, and your family must make changes to adapt. My son was 2 when I first started having seizures, and for years after my first surgery, he still asked if my seizures would come back. Finally the question dissipated, because the surgery had worked, until May 2012, when my son was 13. It crushed us both. I do wish you the best along your journey, but we're all here with you. Keep us posted!
 
Welcome Tamarah,
Like everyone above mentioned, you need to educate yourself and your family about this illness. YOU do have an advantage of being in the medical field, but perhaps we're wrong. Sometimes the more you know the more scary it is.
Hope that they can find the right meds for you and IT WILL GET BETTER!
M
 
Hi Tamarah,

I'm a single mom fairly recently diagnosed with epilepsy - with having started seizures about 8 years ago, maybe a little longer. My kids have seen me have seizures and be taken by ambulance unconscious from my home. I have complex partial seizures. It scared them a lot, and they only now talk about it.

However, I am now 6 months seizure free after having had to take leave from work, not drive, feeling desperate and afraid of losing my house, my job permanently, my kids... I can drive again, work, my kids are supportive and doing well (they are now 15 and 18 and drive themselves and do almost all of the household driving now). Things can get better sometimes. The right meds, alternative treatments (even de-stressing, meditation, supplements, sleep schedule, eating schedule all helped me), support.

Know you're not alone, and many good thoughts and prayers are coming your way.
 
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