i've never done the messageboard thing before but tonight i just really need someone to hear me. someone who knows how much seizures (and life) can suck.
i go to a private college and since having a series of more severe seizures last month (which have since subsided) i've been suspended and banned from the dorms until the college can directly communicate with a doctor they choose who, of course, has a schedule which makes making an appointment a nightmare. i love school and it's a brutal thing to loose--even if it (hopefully) is only temporary.
also, for now, without the dorms I have no place to live and sleep in my car and just run the heat every few hours. i can't drive so i just sit in the parking lot and walk to walmart for the bathroom and to buy food and to the library for some distraction from life.
then my parents insisted to me, my fiance, and his parents, that i am not ready to get married. why? because i am clearly not strong enough, mentally stable enough, or selfless enough to get married. the proof of this being that my seizures continue and they believe that my E is only psychological and a sign of weakness if not a hoax. i've dated this guy for six years. we've been engaged for 3 months and now it's all over.
i'm in a fog.
my friends (understandably) feel weird about visiting me in a car and they've run out of chit-chat and thus have given up on me. i've lost them too.
i quit my job a few months ago at the request of the school's deans as they felt i wouldn't be able to cope with both school and work. money wise it's stressful but more importantly i just miss working.
i know in time everything always works itself out but this is all pretty low. if nothing else, i figured you guys would at least understand how my dr recently changing my meds how it has made me feel "weird" every day as i adjust.
thanks for readng.
Your post struck a nerve! I am so sorry and wish I could help. What I can do is tell you my experience and offer what I learned and would do if it happened again. I have epilepsy too. I also went to a private school and would never choose another. They do not have the same regulations that Public, State supported schools have and therefore are not as fair and do ot have to be. I wouldn't give them my time much less money. Once this crisis is over, check into a State supported school you like. Seizures is no reason to stop ones education nor hinder you from doing what you want with your life as you see fit. Also after this crisis is past, I strongly suggest that you find an Epileptologist at a Comprehensive Epilepsy Center to treat your seizures properly and one that offer you the newer treatments out there so that you may enjoy the best quality of life you can. Are you still on your parents insurance? I hope so. The "weird" feelings you mentioned tells me you may be having Simple Partial seizures and my first seizures were that type. I had surgery for my seizureees 6 years ago now. When I read your post as I said, it brought back a lot of stuff for me. You seem to be very caught in that system maze with others taking control of your life and leaving you at their mercy. Take back your life. Do not wait. I am not sure what services are out there, but it will be up to you to find them. Can you move in with family or friend for a while until you can get to the proper doc and check into a different school? My first college experience was that I started a new med 7 days before I started college, and I slept all through it to. Finally flunked out later. That was phenobarb, and I was going to be a Math major. It changed the course of my life! I went to another school and find the state supported schools to offer a great education. Now many years later, I start college again in two days to hopefully complete what I started waay back then. I did not have the information available that you do nor did I know of any other treatment We have made great strides since then in treatments available. I know you have to be devastated and feel that your world has come to an end, but it hasn't. This is a major bump in the road that is directing you to a different path. Those on your path up til now may not be part of it from here on, but that is ok. You will learn who is on your side and who isn't. Allow only those on your side to join you on our path. Never give up on your dreams. Wish I could help more. Phoebe
Last edited by moderator2; 01-09-2005 at 04:12 PM.
May I speek something to you? You have many things in mind, many spreading thoughts. To sleep in car is foolish, with danger. You can move into home of fiance? Why he let you stay in car. Why do friends visit you in car and not make you home.? where to be your family? I too have many thins wrong in life. I want the future time to be peacefull to me. I must be peacefull with all now. You too, pleas. MOther, father, sisters, brothers, friends. Why you not at peace? PHoebe said Major bump. I think she right but you still have road. go to where? and who you want on road. finace and friends who make you stay in car? She right. go family to help you. Make new life. new friends. you can choose. ziou
Please get in touch with your family. Find an epileptologist, as Phoebe suggested. Does the school know they put you out on the street? You should not have been banned if you can't get an appointment through no fault of your own. Ziou had good advice, please be careful. Let us know how it goes.
Debbie
Yes please be careful out there it sounds as if you've met a lot of doctor's like I've met in my life that truely want you to believe that your nuts instead of sane. It's common for us to be treated this way. I've been seeing neurologists since I was 5 years old and have had every medical professional of just about every sort tell me I was crazy and it was all in my head. Unfortunantly like me it sounds as if your parents are as easily fooled by a bunch of doctors who aren't willing to spend the time to figure out whats wrong with you. On a side note if they tell you you have something other than epilepsy always check your label to see if it can cause seizures and then don't take it if it does. I have found plenty of doc's who were willing to make me worse wish i could find one who would make me better. I'm 25 so 20 years no meds and the shakes the whole time gotta love the AMA and FDA they are our worst enemies btw... Hope ya can find the answers you're looking for and they are right about finding better treatment it's out there the problem is usualy only in about one spot per state from what i've seen maybe somestates are better than others. Like I said in another posting, least they don't burn us at the steak anymore.
IOWAN I really feel for you. It all kind of sucks but please remember "this too shall pass..." I would try disabled student services on campus they have compassion that it seems someone on that campus is lacking. If that fails I'd go public to the students. I'd put a big sign on my car, you'll have more friends than you can shake a stick at. I'm talking flyers, banners and protest. I get the students to help! I'd get the radio stations, the campus paper and the local tv news to do a story then something should happen. That's the American way. Revolt E Power.
Don't get mad get even!
Keep us posted! stay safe! and stay sane! and stay strong!
well, i really appreciated your feedback. being alone is the hardest thing--so thanks. anyway, yes, ya'll had good advice, but, yes, i'd already considered all that and, no, for a variety of reasons, none of it could've worked. when the weather got really bad i did go to the shelter--it was harder than being in my car.
but, indeed, "this too shall pass"! and it has. i finally got my dr appointment and he wrote the school the letter they wanted. so, i'm back in the dorms which is good since we got another foot of snow last night!
it's still a bit of a nightmare--to make up the time missed last semester (which was the school's fault!??!!) i have to do literally twice the work that was originally required and even so i'm guarenteed a grade no higher than a "c". until now i've gotten straight "A"s. it's just so hard and frustrating! my fiance is still gone and my family's still angry and confused. but, at least i'm warm!!! and in May i'll have my diploma. just keep jumping through their hoops...
thanks again. see ya around. ever upwards.
