I received the pamplets today. Thank You. That's alot to go through.I started my AM doze of Zonegran today.It really seems to have knocked me out. But I am not crying today. Last night I had a seizure and when I came around my leg was wedged underneath the couch. I was stuck for a while. My husband finally found me. My arm was bruised but my leg hurt but not a mark on it. So today I took some positive steps in my life. I called my lawyer about my S.S.D. told him it has been 19 months and that alot has changed in my medical condition and treatment. I have to bring in the papers showing that I am going some where else per my Neurolgist.All the meds I am on and Who I am seeing and what test they are going to do.I would much rather be working but that is not an option at this point in my life. We are broke till the third of the month so I called the community food bank.We got plenty of food. I have to be careful when planning meals because my husband is a Diabetic and a food bank does not cater to special needs diets but they gave us a turkey and a bigger amount of meat alotment. I was even able to get a B'day cake for my husband. I talked to one of my very best friends last night. We were talking about life in general. Some how the subject came up about going out to lunch. She said she would not feel comfortable going out with me alone. I told her she was not an idiot and to get some imformation on Epilepsy.Then I said when she was more knowledgable to call me. I am just plain sick of people being so dumb. Family and close friends should love and care about you enough that they ask you or ask some one that knows. I know my seizures have been very unpredictable but give me a break. When you love some one and they have a disabililty like Epilepsy I certainly would find out all I could.Life is to short to waste it so I am now thinking with the glass half full and not half empty. I got Epilepsy. I even went one step further and asked my ex-husbands aunt for an application at the apartments she lives at. They go by your income.Like you pay for rent a quarter of what your monthly income is. If your income goes up so does your rent if it goes down again so does your rent.I never wanted to do this because it is my exhusband that caused my seizures and I did not want to be that close to his family.But know one can hurt me anymore and that aunt was always very good to me. Well maybe I should write a book instead of bothering you all so much. But the book would not understand me. You are all a Great bunch of people on this forum. Just by listening you help so much. Oh just one more thing my husband and I are going to a support group next Tuesday At theEPI> Clinic I am now going to. I think it will help us a lot. Just to meet people with some of the same things we are going through. Mary
I received the pamplets today. Thank You. That's alot to go through.I started my AM doze of Zonegran today.It really seems to have knocked me out. But I am not crying today. Last night I had a seizure and when I came around my leg was wedged underneath the couch. I was stuck for a while. My husband finally found me. My arm was bruised but my leg hurt but not a mark on it. So today I took some positive steps in my life. I called my lawyer about my S.S.D. told him it has been 19 months and that alot has changed in my medical condition and treatment. I have to bring in the papers showing that I am going some where else per my Neurolgist.All the meds I am on and Who I am seeing and what test they are going to do.I would much rather be working but that is not an option at this point in my life. We are broke till the third of the month so I called the community food bank.We got plenty of food. I have to be careful when planning meals because my husband is a Diabetic and a food bank does not cater to special needs diets but they gave us a turkey and a bigger amount of meat alotment. I was even able to get a B'day cake for my husband. I talked to one of my very best friends last night. We were talking about life in general. Some how the subject came up about going out to lunch. She said she would not feel comfortable going out with me alone. I told her she was not an idiot and to get some imformation on Epilepsy.Then I said when she was more knowledgable to call me. I am just plain sick of people being so dumb. Family and close friends should love and care about you enough that they ask you or ask some one that knows. I know my seizures have been very unpredictable but give me a break. When you love some one and they have a disabililty like Epilepsy I certainly would find out all I could.Life is to short to waste it so I am now thinking with the glass half full and not half empty. I got Epilepsy. I even went one step further and asked my ex-husbands aunt for an application at the apartments she lives at. They go by your income.Like you pay for rent a quarter of what your monthly income is. If your income goes up so does your rent if it goes down again so does your rent.I never wanted to do this because it is my exhusband that caused my seizures and I did not want to be that close to his family.But know one can hurt me anymore and that aunt was always very good to me. Well maybe I should write a book instead of bothering you all so much. But the book would not understand me. You are all a Great bunch of people on this forum. Just by listening you help so much. Oh just one more thing my husband and I are going to a support group next Tuesday At theEPI> Clinic I am now going to. I think it will help us a lot. Just to meet people with some of the same things we are going through. Mary
Mary, I am so sorry you were hurt during last night's seizure. I am glad you took some steps to help yourself. Hoping you can get some help with SSD. Good the food bank was able to help you as well!
I hope the medication adjustment happens soon for you! Hang in there. Feel free to talk here anytime!
You were right to tell that friend to get educated. It hurts to be told people are "uncomfortable" with you since you have a disorder over which you have no control. You are not contagious, you did not choose this, you need support.
Hang in there!
I hope the medication adjustment happens soon for you! Hang in there. Feel free to talk here anytime!
You were right to tell that friend to get educated. It hurts to be told people are "uncomfortable" with you since you have a disorder over which you have no control. You are not contagious, you did not choose this, you need support.
Hang in there!
kayakmom said...
Mary, I am so sorry you were hurt during last night's seizure. I am glad you took some steps to help yourself. Hoping you can get some help with SSD. Good the food bank was able to help you as well!
I hope the medication adjustment happens soon for you! Hang in there. Feel free to talk here anytime!
You were right to tell that friend to get educated. It hurts to be told people are "uncomfortable" with you since you have a disorder over which you have no control. You are not contagious, you did not choose this, you need support.
Hang in there!
Mary, I am so sorry you were hurt during last night's seizure. I am glad you took some steps to help yourself. Hoping you can get some help with SSD. Good the food bank was able to help you as well!
I hope the medication adjustment happens soon for you! Hang in there. Feel free to talk here anytime!
You were right to tell that friend to get educated. It hurts to be told people are "uncomfortable" with you since you have a disorder over which you have no control. You are not contagious, you did not choose this, you need support.
Hang in there!
It's too bad that you had to go through this. Obviously we need to keep speading EP info. and educate the public.
Re disability, I know how you must feel because I am on disability (not my choice) It was recommended by my employer of 30 years.
I want to work, I don't want to be labelled by the public as being a lazy bum.
I worked for the Canadian Government and I see first hand how ppl with no disabilities are trying to take advantage and "milk" the system and that makes it more difficult for actual disabled people to receive benefits and I don't want to be labelled as one of them. That's why I wanted to keep working til' age 65 and then collect a full pension.
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Randy,
It is not that simple for me to educate my family and close friends when they say I scare them. Deep down I know they mean well but it can hurt. And yes I wish so much that I could work. I did Direct Care for the Elderly. I really miss that. I received alot of pamplets today about epilepsy that I am going to go through and give to my sisters and very close friends. I have one dear friend who's son was in an accident when he was 3 years old.He is 19 now and is severely brain damaged.He has all kinds of seizures .Two times i have been with his mom and had seizures. One was going down a flight of cement steps. The other was in her van. that time was pretty bad. I had to go to ER you would think that having a son in the condintion she does she would be use to it. Well now if I am at her house and want to smoke I have to have someone go outside with me. She wont take me to church any more. It is now her private time at church. She is educated about seizures. Man the ones that aren't are a real bugger. I think they just don't know what to do if you have one. It just is so frustrating. But I feel my inne strength building up in me. And I will handle this and more if need be. Mary
It is not that simple for me to educate my family and close friends when they say I scare them. Deep down I know they mean well but it can hurt. And yes I wish so much that I could work. I did Direct Care for the Elderly. I really miss that. I received alot of pamplets today about epilepsy that I am going to go through and give to my sisters and very close friends. I have one dear friend who's son was in an accident when he was 3 years old.He is 19 now and is severely brain damaged.He has all kinds of seizures .Two times i have been with his mom and had seizures. One was going down a flight of cement steps. The other was in her van. that time was pretty bad. I had to go to ER you would think that having a son in the condintion she does she would be use to it. Well now if I am at her house and want to smoke I have to have someone go outside with me. She wont take me to church any more. It is now her private time at church. She is educated about seizures. Man the ones that aren't are a real bugger. I think they just don't know what to do if you have one. It just is so frustrating. But I feel my inne strength building up in me. And I will handle this and more if need be. Mary
((((((((MARY)))))))))
Sorry for all of this stuff you are going threw. Hope things get better soon. Tracy
Sorry for all of this stuff you are going threw. Hope things get better soon. Tracy
Tracy you are just to nice. I hope you are ok. You take care of your self.Thank You for always taking a minute and letting me know your thinking of me.
Mary
When we have to deal with hard stuff it is good to know that out there people really care.
Randy you are really nice to. Having Epilepsy is hard and for being a man you never tell me to quite whinning. Thank You for your encouragement.
Mary
Mary
When we have to deal with hard stuff it is good to know that out there people really care.
Randy you are really nice to. Having Epilepsy is hard and for being a man you never tell me to quite whinning. Thank You for your encouragement.
Mary
anytime, I am glad that you feel comfort from my posts. I am glad you are having a good day (I saw your other thread)!! :)
I feel so sorry for you. But i know were you are coming from.i had my own antique shop,when i started haveing seizure,s a yr ago new car ,motorcycle,house and pool life was great.than it happen i started getting seizures not knowing it,was told that i could not drive no more so i had to sell my motorcycle,my new car sit,s in the driveway,but we are making the payment,s every month .my house is in forecloser,no one in there right mind will give me a job because i,m marked haveing seizure,s no longer do i have ins.my boy friend is working 3 job,s to pay the bill,s and my med,s and my dr.'' can you belive 3 job,s.i apply for ssi benefits got turn down apply for medicade turn me down.all because having seizure,s is not a disability how they can say that i will never understand i told social security be in my body for one day and than tell me it is not a disability,falling on your knee cap,s and not able to walk,and have e -vace called to take you to the hospial no ins 27,000.00 later both leg,s in braces for 6 week,s 2 day,s later falling again back in the hospital both hand,s in braces for the next,s 6 week,s and the best was not even knowing how it happen.if i did,t have seizure,s i would have my antique shop that was my life long dream my home, motorcycle.car i had it all now it is gone.i,m so depress so i here were you are coming from.when you need the help it is not there for the people that really need it.and on top of all of this haveing to deal with cancer on my face for the pass year [img]/community/emoticons/confused.gif[/img] five surgery,s .and the person that was saying there are people out there getting help that should,nt that is so true.i,m sorry for venting but i just need someone to talk too.thank you..........
Post Edited By Moderator (djdaz_1985) : 8/12/2008 6:36:07 AM (GMT-6)
Try 2bhappy; i am new on the page, and i was reading what you have reply on. I think what you write is really good .like i said i have only been dealing with this for a year i,m a new fish in the water i have a few ? I take dilantian 100mg five times a day my dr is doing my dilantian level every month.don,t understand why i need my level ck all the time.and what is a good level to be at.i have been experinceing alot of heart burn after taking my dilantian for a few week's do you know why this would be happening is it a side effect.what can i do for it.thank you for your time.
Reason for edit:
Have just changed the case of this post (and the previous one) from BLOCK CAPS to Sentence case. Darren
Reason for edit:
Have just changed the case of this post (and the previous one) from BLOCK CAPS to Sentence case. Darren
Post Edited By Moderator (djdaz_1985) : 8/12/2008 6:35:48 AM (GMT-6)