today i had a petite mal at a store. i always have somebody around me w/ i am out- since I cant drive. well my girls start kindergarten on monday http://www.healthboards.com/ubb/frown.gif so i will be volunteering in their classroom http://www.healthboards.com/ubb/smile.gif and what if I have a seizure???? espicially a grand mal? i want to cry at the thought of that. I dont like the girls teacher http://www.healthboards.com/ubb/frown.gif and I am afraid I am going to encounter my first prejuduce about being sick. i am at my wits end of having to be 'sick' in the first place already.

i have silent migrains because i have seizures now(my eye vision is fuzzy) comes and goes

and i dont like petite mals because i cant move, cant speak but i can hear the people talk to me, but i cant respond. i feel like my body is betraying me. i feel like an idiot. i just hate this!

we are having money problems and i cant even go out and get a job to help out because I am 'sick' - i have no problem working, i subsituted teaching w/ the girls were 2 because we needed money. i pray disability works out.

i get seizures w/ i wear my body out, if i do too much during the day, if i get over heated, if i am running here and there, i feel like my body betrays me, i am 31 and sometimes i think getting one of those scout carts(sp?) motorized chairs would help me save my energy w/ there is an organized event and there would be alot of walking to do.

and this is all because i got viral spinal menegities really really bad in october.

Good morning Viola

So, hate to hear you are having a bad time of things. I don't have the issues of E and the feeling like I can't control my body, but there are days that I feel that mine is wearing me down as well.

Four years ago I got a Kidney infection that lead to a blood infection, I was in the hospital for 3 days and had to return to work the morning after I was discharged because the rent was due and I didn't have sick leave and I was a single momma. Well to make a long story short the blood infection lowered my immune system since I didn't stay down for the 2 weeks that I was told to and I still have trouble with getting down physically. I'm 39 and there are days that I feel 70.

Some of the things that I've found that help are all triggers of E. Get enough rest, sleep and just down time, eat right - fresh fruits and veggies, work out. Taking care of these things work most of the time. If you're not, give them a try.

As far as seizing in the class room. You would be there for the kids not the teacher if you really think about it, but be open with her before you ever get to the class room. Do you have an aura, are there days that you know are going to be harder then others? If so explain that you may not be there sometimes and it could be short notice. If you have no warning, see about getting a video about E to show to the class, explain in simple terms what it is and how you got it. Even little kids understand being sick.

Don't know if any of that helps, but - know you are in my thoughts and prayers. (((Hugs)))

Lisa

This may sound blunt, but I have lived this to be the best advice. Your body has not let you down. You have a new reality, seizures, and all of the baggage that comes with it. It's not fun, but you will have live with the new reality. There will always be others, sometimes family, friends, and strangers, who can't deal with it, or who's actions are inapproprate. You can't change that. You will have to change yourself, feel and learn to deal with the 'baggage'.

there- that better-??? MY opinions are gone...

[This message has been edited by neuronz-on-the-fritz (edited 08-25-2003).]

i am kind of shocked by neurons reply. i came to the board needing support and hugs, not a vicious reply. i can list all of the 'bad' things that have happened to me. I am a survivor, but i think that i need to vent to. call it therapy. I was really scared and feeling very alone w/ i posted. i had nobody really to talk to. they can sympathize, but they are not in my shoes.

Viola,

You are very correct in thinking that you can come to this board for support. I am here and there are many others who will be more than happy to help you thru what is happening. I know what you mean, as strong as you are and as well as you are dealing with this sometimes you just need a soft shoulder to cry on. That is normal and a perfectly acceptable feeling. My friends call me "The Rock" because of everything that happens in my life in just one day yet I am still happy and positive. I too need a break and to vent. When I do I find that I can better deal with the problems at hand. Venting doesn't mean you are giving up or are weak, it just means your plate is full and you need to empty some of the things on there that you don't need.

Go ahead sweetheat and vent until your hearts content. You will be better after....Trust Me!!

God Bless you dear,
KittyMom

------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

By the way, I am appauled at what was said. I know people have different ways of looking at things but when someone is crying out for help....Help Them! Don't always give them what you would need to get thru, give them what THEY need to get thru. Know who you are talking to.

i didnt mean to use the word 'vicious' that is too strong of a word. i understand that staying strong and being positive is the best way to handle this new way of life, but u know, sometimes i just have to vent, whine, feel sorry for myself, worry. i too was rejected by my birth mom w/ i found her in my early 20's. and i had to learn to handle those raw emotions, it took time. it took time to heal, go thru the emotions, and now i am fine. I think i need to go thru the same rollercoaster emotions dealing with seizures. sometimes i am plain scared silly, espicially after a several episodes where i dont have control of my body- it does feel like i am fighting w/ my body. i am really proud of what a trooper i have been dealing with being so sick, w/ i look back i wonder how i got thru all those really tough months. how grateful i had my family taking care of me, those horrible seizures wrecked my body to the point of being so weak that i needed somebody w/ me all the time to help me move. i fought so hard, because i wanted to be back. how can anybody understand but this board, how hard u have to push yourself, dont let yourself get deep into depresion, having the courage to say- i am tired, i cant do this anymore, i need to rest. ect.

Hi violarose,
I have had T.L.E. all my life and as I have already said,I wasn't diagnosed until 44 yrs old.About work,I studied for 4 years for engineering,in that time I found it hard to do the exams etc.I was alway's last out.Towards the end of my time in work,most of my workmates understood and just made sure I was safe and they got on with the job at hand.So what I am saying is,in work situations you will get both kinds the understanding and the moron.But I was good at my job and my boss didn't want me to leave, but I had to because it wasn't safe for me there.So dont let anyone grind you down,you have to believe in yourself.I know you are feeling down,and you will be, what with money problems and everything,and I have been through this,but it's swings and roundabouts,and you will bounce back.I also have more medical problems,autoimune thyroiditis,damaged spine tinnitus,and a few more minor ailments,but I'm still here.I hope everthing works out for you.Take care.
Garry

Viola,

I was just trying to help and give some advice. Didn't mean to make it worse.

kitty mom, i loved your advice, it was great!!!!! (())(()

I didn't say that venting is weak, or wrong... just that you have what you need within yourself to make your situation better.... if people don't want various views, let me know- I've got other places I can be. Everybody deals with crap in their own way- no right or wrong.... if you read my post as criticism, maybe read it again knowing it didn't come from that when I wrote it.... or just blow it off.... doesn't matter to me.... message boards are wonderful- if you like something, use it.... if you don't, DON'T...

Hi,
I just wanted to say that everyone has had bad things happen in life and no we dont have to list everyone of them on here. And yes we can overcome these things and its how we choose to deal with it BUT sometimes a body and mind can only take so much. After dealing with many many things my whole life, this one last thing was the "straw that broke the camels back" so to speak. How much is someone supposed to take? Some people do deal with things differently, but God made us all unique and different and if we cant handle some of it the way that others can than by all means vent and get the support that you DESERVE. I come on here because most people around me here dont understand because they dont have E or depression from situations or if they do then they are within themselves and cant help or encourage me. You know when people are doing good they get a pat on the back and it helps them keep doing good, but God forbid if a little slip happens and then instead of encouraging and saying that their feelings are understood they get the "back on your feet and move on" lecture. Sometimes we need to feel the sadness to remember the good points in life, and when we are down we need empathy and hugs and to be told that its ok to feel this way. Feeling just are. You cant say they are wrong or right... they just are. And when someone is having a bad moment a hug goes a long way, whether its physical or "online". So to all of you who feel down and need to vent...heres a hug. I feel that way alot and get the "tough love" so to speak from here. I just want to be held sometimes and have someone to take the burden from me if only for a few minutes. I am a tough person as many of you are but enough with the "deal with it" stuff. Everyone deserves to vent and get it out...thats what these boards are for. Some ways help some but not all. I hope this doesnt come out as angry sounding, im not angry but please realize that if it works for you it may not work for others and we should all understand that. Take care ALL of you.
God Bless,
Tigre

Good Lord, did nobody see that I SAID that I wasn't writing from a point of criticism, but from one of knowing violarose has the inner strength to deal with this???? That is NOT the same as blowing off the pain.

If only 'huggers' are supposed to post, there needs to be something stated before joining.... if you CHOOSE to look at anything but warm fuzzies as negative, that's up to you- but that's NOT how I was thinking when I wrote what I did- and I deleted it as best I could..... don't want the natives getting their undies in a wad just because someone doesn't get all mushy. Message boards are open for opinions and comments..... if you want canned responses, there needs to be a script. Not fair to post something, then get all bent out of shape because it isn't what you want someone to say.... I won't read minds, or change who I am just to express an OPINION- not the law of the land, not being crammed down anyone's throat.... this is a MESSAGE board- absolutely voluntary.... Yeah, I'm pissed now- the responses to what I posted were not read how I wrote them- but PLEASE, don't send hugs... http://www.healthboards.com/ubb/smile.gif seems it's ok to tear me up while accusing me of the same.... how many standards are working here? Double? Triple?

Or is everyone just having a funky day, and none of this is really worth the powder to blow it up with???

Hope y'all are doing alright- and violarose, I did NOT intend for my post to be taken that you're weak, or should blow off your feelings.... I hope things do work out well for you, and that you don't have to deal with seizures at your kids' school. AND, you are strong enough to deal with this.

neuronz-on-the-fritz,

I know that people often 'self-talk' to themselves in their head when they are having a hard time. My guess is that the advice you gave is advice you have given yourself when times were tough. I think you posted with good intentions and I can tell that you feel misunderstood.

Perhaps I am misunderstanding you as well. I don't know. But I find for myself that my own self-talk ranges from gentle to more like a pep-talk depending on my feelings and circumstances. I can't do well with just one or the other. Sometimes I prefer one over the other but in the long haul, I find I need both. Which I will offer a person will depend on how I am relating to them and what I would say to myself under the same circumstances. My guess is that is what you did when you posted.

Well, enough - I am repeating myself. Take care.

[This message has been edited by rainonwindow (edited 08-26-2003).]

I just wanted to clarify something..after reading my own response earlier i realized that maybe something i said may have been misunderstood. When i said "this is the straw that broke the camels back" i meant the accident i recently had and how i was dealing with it, not the response that neuron gave. I hope i didnt offend people or more specifically you neuron. You are right, we are entitled to our own oppinion and sometimes i wish i had the strength that it seems you have by accepting things and dealing with it instead of letting it take you down. Alot of what i said could have been coming from the PTSD and depression and was, what you said, maybe what i would have wanted to hear myself. The hugs were sent to the ones who needed one and once again i did not mean to offend. Im sorry if it was me who "pissed" you off because like you said in your own post, that was not what was intended and i did mean it with the best intentions at heart. I didnt mean everything that i was saying to single you out as the one who was saying it. I was referring to the ones that i have encountered personally who seem to think that "move on" was the only advice to give. Message boards are great and they have helped me see how others cope with problems as well and in turn have helped me. So to those that i offended, im truly sorry...for those who understood what i meant ..thanks.
Take care of ALL of you.

Dear Violarose
about having seizures in front of people you don't like. I used to work for a big government department, and I was having a very hard time with one of the other section heads, who was a woman older than me and very straight-laced. Anyway, one day I started to have partial seizures in the office so I decided to go out to my car in the car park for a whiole in case a GM wass on the way (it was). anyway I was in the elevator, feeling terrified, and it got to the botom, and just as the door started to open I had an atonic seizure, or drop attack. I lost consciousness for a split second and fell forwards out the elevator door. I was awake again before I hit the floor, but it was too late. My hands formed into fists and I reached as I fell. This woman was just getting in, and as I fell I 'punched' her in the crotch, in front of a lot of people. the next day I was famous. As for my career, it was history. Now, you have to admit, that's funny.
God bless
Peter