I am new.

[Chad1889]

My name is chad. My fiance has just been diagnosed with epilepsy and she wanted me to join this forum as a way to cope and talk with other people who are epileptic and their families/friends who help them cope too.

i am not sure what to post at the moment, but i will ask questions when i have them, and will hope this will help me to better understand her condition and how to better myself as her fiance.

I don't like using the word care-giver. It is more like being a person for support, and care in a way, but its not like she needs full time help like feeding and dressing herself. She functions fine.

Thanks in advance for the welcome.

[epileric]

It's great that you'd join to try & understand someone elses medical challenges.

This is a great place to learn from so have a complimentary cup of coffee , get comfortable and check out all the different rooms. I'm sure it'll be extremely informative.

You might want to check out the kitchen, it's where all sorts of topics come up.

[Meetz1064]

Chad!

*grinning*

How ya doing??

It's nice to have ya here! We'll do all we can to make you feel comfortable, and answer any questions that you have. Learning about E does help the "better halves" who take care of E patients to deal with it more comfortably, so feel free to check out all the nooks and crannies, especially the Library and the Kitchen. Oh, and the Padded Room is great for venting when you need to!

Take care!

Meetz

[darcness]

Welcome Chad!!!

I know Rae said you were going to come here, and I'm so glad you did.

My wife has E as well. She just had her second tonic-clonic seizure this January. It was the first one anyone witnessed, but we do know now that she had one a year (almost to the date) previously.

I've been through the whole bit myself with emotions. I got so bad at one point that I had a full blown panic attack and thought I was going to die. It wasn't pretty.

Since then though, I've learned that my wife is still the same girl I fell in love with long ago (we've been dating/together for 10 years total). I realized that E isn't the end of the world and that we would be just fine. CWE here has been a HUGE help with that for sure.

I'll tell you right now that it isn't easy, but with good support you can both make it through this. It sounds like you have a good attitude about it already. Keep that up and keep coming around when you have questions or need a bit of advice. We all need help some times.

[Nakamova]

Hey Chad, welcome!

I hope you feel free to lurk, ask questions, search for info, vent, and share as the mood strikes you. Now that you've joined, you'll have to get Rae to show you the secret handshake....

[Rae1889]

Hello love!
These people are awesome and are definitely the "fab four" I know I have told you in person, *I think* but this site by a guy named Bernard and his lovely wife Stacey. Stacey has E, but Bernard doesnt. I will bug you in the morning and talk to you more. Keep an eye and ear on the people before my post, they are so full of kindness and information!

Also look out for RobinN, Ruth, Cinnabar, and knothing, and Cint! *sorry if I missed anyone guys its late where I am* These people are so awesome! RobinN knows lots about nutrition and neurofeedback, Ruth is a doll, knothing is so funny and has a great view point for a man ** and Cinnabar and Cint are very creative people.

This is my internet family now! and I am going to share them with you!

Lots of love and hugs
Rae xoxo

[BuckeyeFan]

Welcome Chad!

I have E myself. My wife and I went through the challenge thay you and Rae are going through now. We were 19 and 20 when my E hit. As I told Rae, it took me awhile to understand just how much it impacted her as well as me. Talking to others years later and them telling me of the look of fear on her face as they EMS wheeled me out of the house. Thank goodness for neighbors and family that stood by her.

You will have plenty of support here. After 28 years of E, I and the others here have seen just about everything (at least it seems like it).

Good luck to the two of you. You are more then welcome to contact me confidentially if you have questions you do not want to ask in the open forums.

[knothing]

Welcome!!!
Look I agree that the term 'caregiver' is just not correct. I myself always type the same ways as I just did. I don't know if there is a good phrase for it. Maybe we need to find a new term like 'seizure support'. I can tell that after a tonic-clonic the first 48 to 72 hrs are when I need help. I have to take a heavy dose of painkillers just to go pee.....weeeee!
I will tell you the real support is mental. A few examples are if the person you support has small seizure that they are awake for and just include jerking type of movements. You may have to help them get the attitude that they are not the one with the problem it is the world that has the problem. Another example is a tonic-clonic during the time after that it really is tough to mentally get going. Not everyone and not every time is it easy to get going and say "To heck with you E (epilepsy) you can't keep me down because I'm getting back up!!!". It may look easy from the outside but most times it is not. And yes that was an edited version of what I might say.
My wife and I both make errors in dealing with E but we learn and manage through it. I know it is harder on her than me because what choice do I have but to get up? She could always choose to leave but she does not choose that. So she is stronger because she chooses to make this fight hers when clearly it does not have to be.

Sorry to run on like that. Ask what you need to ask an read what you want to read because, like many will say, knowledge is power.........

[josieb]

A very warm welcome to you, Chad!

I am the one with E and like Buckeyefan noted, it took me a long while to realize how much my husband was going through. When we were first dating, my seizures weren't near as frequent or severe, but as the years went on and we got married, everything worsened (for both of us). We dated for over 4 years and have now been married almost 12 years. My seizures have been controlled for just over 2 years now. Even though there were tough times, we made it through them together.

I give you a lot of credit for joining the group and wish both you and Rae the best!
Sincerely, Josie

[Cint]

Hi Chad and Welcome,

It's good to see you have come here in support of Rae. We're all behind you as well.
In my case, I'm the one with E. I started having complex partial and tonic clonic seizures when I was 22 years old and newly married, so I know what a stress it can have on a relationship. My hat's off to you and other guys (like big Bernard) who stand behind your gals in times of emotional duress. Not all guys hang around at times like that.

[seizingbeauty]

Hi Chad,
I gotta say Rae is lucky to have someone willing to help out. I know that for me having my guy try to understand has helped ALOT. He knows how independant I like to be and has never tried to be my "care-giver" but is always there to pick up the pieces when I'm not sure I can. I hope that having this forum helps you guys face this together.

[skillefer]

Hey Chad! Welcome to CWE! Feel free to browse around, ask questions, vent when needed, and chime in. Epilepsy can be really stressful for the families as well as the person having the seizures. You are more than welcome here, and bravo for coming in to find out as much as you can. There's some really good basic info in the thread in my signature. Glad your here.

[Loudmouth]

Welcome, and make yourself athome here. I think emotionally E is worse for the people trying to give support, as when I have a seizure, I only experience the after-effects, But when my daughter has a seizure, I can see first hand what it's like, and it's damn scary. (((((HUGS))))) to welcome you.

[danjor]

Hey welcome! Hope you make yourself at home here. Your wife is pretty awesome! I can imagine you are too!

[Rae1889]

aw thats so cute jordan! I havent heard myself be called his wife by anyone but a few friends! It sounds so cute.

he's been busy, but has actually mentioned this site, and how he wants to check it when he's finished what he want done this weekend.

I told him to take a break, check it, then get back to what he was doing.

[Deb12345]

Welcome Chat to the group. Rae is definitely a great person. I hope you both have a great day. Best Wishes Debbie

[occb]

Huh -- I see you joined a while ago and I missed the momentous occaision.

I'm a supporter too -- I'm with you on the word care-giver. I don't give care, I support when support is asked for

[Chad1889]

thanks.
rae talks about your lots

[Chris515]

Yes Chad welcome to the group! It's great to see you here.

Jen has joined too for the same reasons.

[occb]

My boyfriend gets to hear a lot about Rae (and Cinnabar, and tambam, and horsehead, and Meetz and, well, many, many people here). It's a really great community, and very helpful.

I've learned so much about what my partner experiences, and possible ways to approach health issues from the people here. It's been a great help. Plus, I've made great friends a long the way.