Epilepsy Community

Hi Haylen,

Well it's now late afternoon here in Vegas. This is usually the hottest time of the day here in the valley.

I'm doing great. The weather has me up and out early. You know, out the door about 6am and home by 9a. Heat is no good for us with medical concerns.

The new pic I posted is 10 years old, the day after the grids were placed. Nice head wear, huh? That's Dana,clarinet2, beside me. We make a great couple.

No seizures for the new year plus no medication changes.

Thanks for checking on us.

love,
angie

Doing good so far, Haylen & family. Heat is gettin to me, too, Angie. 104 here yesterday. Thank Goodness Cool Front is moving in today & will be better for a few days. Yep early morns are our only chance of beating the heat.

Love Candi

hi Candi,

theee weather here in Hi is in the 90s and very humid right now.

the time here is 3 hrs earlier thsn that of San Diago.

it is 6 02 here which wuld make it 9 02 where the west coast is.

the time zone here is maritime. do not ask me where that came from 'cause I do not nkow.

I alsohad a sz abooout an hr ago, so please exuse the mistakes.

Well I have to get me kid readdddy for school and will talk later.

hula_dancer

Good morning hula and Candi,

Yes, we might have rain today!!!!! Hope it moves your way, Candi.

Miss Hula, sorry about the bad start for this morning. Carry on as you usual do. Take it easy today. You know the rest

Maybe maritime came because of the naval stations that were there during those wars. Or maybe time is measured differently because of the water. Who knows. Who cares. I'm simply throwing out possibilities.

Anyway, with the grey sky, it's a good morning for a walk. Everyone have a good day.

angie

Hi Angie,

Yes, them clouds are over us, too. Weathermen keep changing the Day to expect rain. Today, tomorrow, late tomorrow nite. But, 80% Chance. I figure it will be as usual, nite time rain & muggy days. Feels good for now. RELIEF from the Heat!

Awww, Nancy, that's a rough way to start your day. Hopefully it's the only one you have today. I wish you a speedy Recovery. I Don't mind your typing 'mistakes'. I got used to it & learned to read & comprehend your words, most times, Long Ago.

HUGS!

Good to hear from all of you - I was hoping IamStarlight would check in but it looks like she wants to delete her account

saxofone1 - I LOVE LOVE that photo! Thanks so much for sharing!

Haylen

Hi Haylen! sorry im late to reply, i was hoping iam starlight would reply to. i have no idea who she is (well i havent been around) but i know if she deletes her account she'll regret it (or at least its a bad idea) i know from experience and how you guys have treated me, so i left her a message.....haylen, i know everybody's all bright and shiny and talking about the weather, and im so sorry for all the things ive done and the fact that i havent been there for support of anyone that i am selfish and am only here when i need support, but you guys are all i have and i need you now. i promise to make it up to you and come around more often and read other posts and put my 2 cents in.....ok i have a long story i keep trying to post a dicussion but i keep hittingg some button which deletes it. i dont know how to make this longg story short. i'll try to make it mostly about epilepsy. 1 week ago i had status epilepticus adn almost died. it lasted supposedly 25 min and my heart went haywire. i dont belive them though. i was in icu for a week then moved to the cardiac unit. first they told me my heart problem was from my seizure , then they told me it was from my antipsychotic meds, then they told me i was born with it and inherited it from my father. they couldnt agree. they ended up putting an internal defibrilater in my chest, and sent me home quick after that. i am still in shock and think nothing is wrong with me and think they did this for nothing. now i cant go through metal detectors or mri's, but im off the subject. ive been off my antipsychotic since all this, heart stuff. i may sound fine now but it comes in waves. i went to my psychiatrist yesterday and she said with my condition (mental) i HAD to be on these meds, but every one of them are bad for the prolonged qt synndrome. she saw that i was decompensating mentally and sent me straight to the psych ward, where my doctor there(psychiatrist) was so rude he tried to say i must have caused my seizure, i must have stopped taking my meds which i most certainly DID NOT why the heck would i want to have a seizure, i was good for a long time! anyway i got mad at him acusing me i said some bad language, he kicked me out of his office and then i left ama. and i lost my job, for being out sick too much with epilepsy and bipolar episodes, which i mostly had notes for and could have gotten notes for every time, the doctor said not to worry about it. that job i LOVED and i am devastated. were they pretending to be nice to me and all along they wanted me gone? now they have an excuse? is this legal? I'm gettting myself worked up, i need to stop now.. thank you for listening, i just needed to vent

Hi Kitty,

It is Good to see you again. Whether you reply to others' is up to you. Rite now, it sounds like You could use a friend or 2. You certainly been keeping the DRs Busy, if nothing else.

So, First, Heart problem. Kitty, same thing happened to my Sis. So, it is possible. And like you, DRS couldn't agree on what caused what. But, she did learn she was Diabetic, too, during her stay. Which, of course, in Doc's book, was a 'cause' of seizure &/or heart problems, too. She Still refused seizure meds, but, took their advice about the diabetes & heart. Shots & all. Then found out from another DR Yrs later, that she only needed Diet to control Diabetes. Boy, was she Pissed. I think I've told you all this B4. Anyway, 5 yrs ago, she went thru Major Depression w/ suicidal thoughts Every Day! Woke her Up! She confessed to her Homeopathic MD about her seizures & now, between Diet & progesterone ( yep, Hormonal seizures aka Catamenial seizures) she is seizure free.

Did your psych put you back on Drugs you need? I ask, becuz a friend of mine went off her Klonopin cold turkey, even though warned by me of the consequences. W/in a week she was having Delusions & calling the cops on her Neighbors. Finally she realized she was hearing voices in her head & another friend convinced her to take at least Half a pill & then another half. Took a week, but, she seems to be doing better according to my friend. But, she won't talk to me. Guess she's afraid of what I will say. Like "I told You so!" Which I wouldn't do.

Your Job?? Yes, that was discrimination! Contact your State Epilepsy Foundation for 'Legal aid'. Your DR Should be Involved since he wrote your 'excuses'.

Your Psych? Start searching for Another one. You Know you will need one in the Future, so, mite as well start shopping around for one you Like. If possible, file a complaint against the Rude Doc! Talk to the Medical Board that hired him.

Welcome back Kitty. You Know we Care! I, for one, am Very Glad you chose to stay w/ us! Thank You for your words to Iam. I wish she would reply & let us know what the problem is. I encouraged her to 'visit' us, from another site. She needed info/support concerning surgery & the board/forum she was on had No One to Help. She hasn't been back there either. Oh well, I should be used to people coming & going by now. But, I do wonder/worry about a Lot of them.

I hope you have a Good day. Hope the Vent Helped a Little/a Lot!. Hope my reply helped, too. Lots of Love & Hugs. Visit Anytime & let us Know how you are doing.

Hi Haylen,

that was some morning when Dana and I took that pic. I was waiting for Frankenstein to bring me flowers.

I too hope starbright stays with us. I have enjoyed this site so much. It has been a therapy for me to be able to share with others, without starting at day-1, my experiences and to help them with their personal concerns. In this site, we are already connected because of our commonalities and concerns.

Kitty, I am sorry about the discomforts that you are currently experiencing. It is good to hear from you. I, like Candi, often wonder how someone who hasn't been around is doing. A daily participation is possilbe for some of us, but it isn't a requirement. Simply drop an update(even on a disc that you haven't participated in to let us know how things are going. Maybe a 'checking in" like Halyen does.

Anyway, kitty, did your read the 'don't quit" post that I shared with everyone. I think it is in the disc that starbright first started. I can't remember the title so if you can't find it let me know and I will post it again. It has helped me through many unpleasant times. "Don't Quit" has been my pledge since the 80s.

Hang in there, kitty. RANT at us when you need to. We understand.

Everyone have a good day,
angie

Ditto what Candi said and welcome back! We are here for you if you need to vent, need support, info - whatever !

Please do check with an employment attorney - it doesn't sound legal to be fired for being sick. Have you explored disability?

H

Hi Haylen,

I am okay, just not posting much right now. I have been trying to keep busy in my garden, and of course with my church. I hope Starlight changes her mind. She could just lurk for awhile maybe. Sometimes members disappear, and no one knows what happened, if they are okay or what.

I have been keeping busy weeding and planting in my garden, and clearing brush so we can get more fence up for my horse. I consider her my 'therapy' horse, she is very sweet.

take care and God bless all of you,

Hooty

Hi hooty,

It's good news to know that you're doing fine.

My therapy isn't a horse but my daily walks that I take in the mornings. The walks average about 3 miles. Sometimes I have walked 5. When the heat is extreme I simply get on my stepper and mentally place myself on one of the beaches along the California coast. Or around the UCB campus. Fun spots.

Good luck with your gardening. Have a good weekend.

angie

Hi Candi,
good news! i still have my job (for now) not guaranteed for the future, but im gonna take it as it comes, i am ecstatic about that. i cant go back for quite a while and i will def have notes so hopefully that will help my case. the problem is, ive been out so many times, ive had drs notes sometimes and sometimes not, but i COULD HAVE gotten them if they had asked. well anyway, nice to know i have friends here. in the hospital they only took me off my saphris which is an anti psychotic that widenens the qt interval. all antipsychotics do. i never stopped my klonopin or any of my other seizure meds. but with my condition, all psychiatrists believe (and from my past history i need to be on a theraputic dose of an antipsychotic) to maintain my mental health. those meds also lower the seizure threshold. but i have made my choice i have chosen physical health over mental health. and i had my stint in the psych ward which only made me start smoking cigarettes (i HAVE GOT TO STOP RIGHT AWAY) i am a member of the bipolar forum here but the epilepsy forum is the best one, like i tried to tell starlight, but i understand she wasnt getting her answers here. i am just so frustrated. thanks again for listening. im sure i repeated myself a million times

thanks angie, no i didnt read your dont quit disk, i wouldnt even know where to find it but thanks and thanks for being there, you guys have been the best