Angie, My husband and I were talking about the time that you are referring to as to when people thought that epilepsy was a curse as you mentioned. I am so sorry that you ever had to go through that treatment from anyone or feel like that. I would only say that I felt that way when I was diagnosed at age 12. Which at the time I lived in a very rural small town that I was still worried about what everyone thought and my seizure at that time was at school so I was worried about what everyone thought. I actually even found through the years that my classmates forgot about it because my seizures were small and I didn't have any more at school after that. But by the time that I was in high school I decided to do a speech about epilepsy. I hated speeches but that was the best grade I ever got on a speech. My small town got an introduction to epilepsy between me and a guy in my brother's class that had grand mal seizures and he had a lot more than myself. He had surgery done on his brain and the poor guy at 18 also had a stroke as well around the time of his surgery. I felt so bad for him because he took a lot of ridicule from people in the school. When he and I were in the same school he would come and sit at our lunch table with me and the girls in my class. I would talk to him, and the girls in my class thought I had a crush on him, they didn't understand how much he was going through, truthfully at the time I didn't understand it very well myself, I just knew it was something he didn't choose for himself and deserved the same treatment and friendship that we all need.
I get so wound up about how people treat others. This is in a lot of situations in life. I could go on for days I should probably stop here though. I hope you have a great day!
Candi One of the seizures that I had was brought on by fever and I had also missed my dose the night before it. (This was about 8 years ago). I had my seizure when taking a cool bath to cool down from the fever. I was in the tub laying down when I felt a really warm feeling come over me (which is my signal that a seizure is coming on) I didn't act on the signal because I thought it was just from being sick and in the tub. I did sit up. I was home alone and came out of my seizure to find the water in the tub drained out and when I woke up I was laying on the bottom of the tub looking at the bottom side of the faucet (it was not on thank goodness). I got up and then also noticed my back hurt which was because it was scraped several times and when I looked back at the tub I noticed the faucet was about half way out of the wall bent down. It was definitely one of my most emotional times of coming out of a seizure because of everything I realized that could have happened. I don't share this to scare anyone but really to make us all realize how important it is to take your meds as prescribed because you have no idea when you might get sick and with epilepsy or any other health issues when your body is overturned or if a fever comes on your medicine is Essential to make sure you get better quicker and without hurting yourself. I hope that anyone reading this even if you don't respond take your health very seriously. We are not invincible. Take charge of your life and Don't be afraid to put yourself first when you need to. JenView Thread
Angie, When I was a baby I had convulsions that weren't diagnosed as epilepsy until I was 12 when they started to see the first seizures. I have never met the family I am referring to so I don't know the names of the children. I have found out that there is a baby around 1 that has had seizure activities as well but I guess the little girl who is currently having problems that I expressed above is actually 7. My husband is friends with the relative so I am only getting bits and pieces of info but trying to reassure my husband's friend of anything that can help. The father of the two little girls has crohns disease as well. I am not sure if that makes any difference in the girl's treatment. I did give my husband the site here to pass on. I know that health issues affect us all in different ways. I know my family has always been behind me which has helped me and now my in laws are the same as my family. I would say the most frustrating times was the first two weeks of this medicine change and when I was first diagnosed at 12. In both situations I have probably prayed more than any other time in my life. The outcome from all of that praying gets me through the tough situation and I get reminded of how strong I can be. I hope that all people that are facing the process of seizures have a person to turn to. Try not to worry about the sometimes negative opinions of the society around you. It is becoming a better known health concern the more we talk about it. Enough ramblings for now. Have a good day!
Angie, I am so glad it is going to work out for you to help at the school, hopefully it will bring a sense of a homey feeling like you were used to before.
I don't know how it seems to work out in one way or another that whether it be here at support groups or with people that just know that you have seizures but I can certainly say I feel a sense of responsibility and pride to be able to help people going through what we here have experienced through our lives. I have been pretty comfortable for years now telling people that I have epilepsy because I would rather have people know and be able to help if needed and also have them not be completely taken off guard if something should happen. Well all this is leading to what I have experienced since a friend of our family has a relative, female child, that has recently been diagnosed with epilepsy in the last year. I am trying to get more info on what the age and meds are for the little girl but lately she has been running high fevers (last one was 104) and she also tells her parents when she is trying to sleep it feels like spiders are crawling on her legs. I imagine from a child view this is restless leg syndrome (which I have only experienced as an adult but not often). My mother said I ran a few high fevers when I was a child but my highest was 102.4. I will try to piece together some more info to help and suggest that the parents talk to their doctors and also come here. I know the diary is something I have started now but I am guessing that would be a good suggestion for the family as well. Anything else at this point that any one else suggests. I have to pay it forward if possible because we all know how helpless not knowing feels.
Candi I am glad to hear that your friend has decided to get his diabetes under control. Life is definitely more enjoyable when your health is adjusted to be as comfortable as one can make it. I have family members mostly through in laws that struggle with diabetes and it certainly is hard to adjust food for some of us it is just a thing we take for granted that we can do what we want.
I was outside more this weekend or doing things pretty consistently so I have found myself being more tired especially in the the early afternoon and late evening. I had time to relax and get a little bit closer to the normal weekend schedule. Do you find yourself ever having trouble with the heat outside? (Which it sounds like you get plenty of high temps where you are).
I played a little volleyball in high school. I wasn't always the best at it but I had a lot of fun. I hope you get the chance to set up that net weather permitting of course. Relive the glory days.
I am excited to find out about the Facebook group. The more knowledge and support the better.
I am hoping that your weekend continued to be just as good as you explained that it had so far.
hello ladies, The short term disability got approved yesterday afternoon. So that is a relief. I am having a relaxing weekend so far. I went to see my step daughter's volleyball game this morning. She is just about to turn 8 years old so it is more like a practice at this point since next season will be the first time that they keep score.
I hung out with my mother in law, step daughter, father in law, and my nephew for a while and now that my husband is home we are planning on getting out in the fresh air for a while this evening to go to a park outside and listen to a cover band for a little while. We'll see how long we last with the way we all feel.
Yeah my sister in law knows about the site and I think she is getting her internet back this week so then she might be able to come in and contribute more. Angie I hope that your appointment goes well on Monday. Have a good weekend. Talk to you both soon.View Thread
Final update I got from the insurance company for my disability through my work for short term is that everything was submitted correctly and I am approved for the time that my doctor and I have agreed upon. I am really relieved and now just am hoping to get my reimbursement for what they took out of my last paycheck (basically I couldn't get part of my pay until the claim wad completely approved). Have a great weekend ladies. View Thread
Candi and Angie, I have been fortunate so far with my work the only stresser I have left is to get the final word on the short term disability claim I have in. I have been calling people through my human resources and co-workers and my doctor's office but it is such a hurry up and wait process that it's a stressful thing to think about when like a lot of the country my family lives paycheck to paycheck.
Angie I hope that the volunteer work through the school works out for you, I have no doubt that you would be a great assett to the school.
My sister in law is going to come over and hang out with me for a while today and she will be taking me out in "the real world" to the book store. I look forward to when she comes on her days off. She has done jobs where she has been basically an at home care for people with disabilities that can't be alone. One of her clients had epilepsy so she is familiar with different aspects of it and has went to school for other medical office skills.
I am always looking forward to the news of your daily lives and supporting advice. I hope you both enjoy your Friday and your weekend.
Candi congrats on the additional year for either you or your daughter. I completely agree that epilepsy does make us stronger. Both of you strong, smart women I have been able to speak with are living proof of that and I have been told I am strong person (not physically unfortunately) but mentally through different times in my life. Don't get me wrong like anyone else I need a shoulder to cry on every once in a while, but I think that each hard situation that anyone encounters in life they come out stronger.
I certainly also don't mean to offend either of you if you have been forced to medical restrictions when it comes to working. I just have always wanted to find a way to volunteer more and still be able to support my family. I completely empathize with both of you if you would be happier working 40 hours. There is a certain stubbornness I have that has kept me working up until the point that a co-worker of mine that knows me pretty well said that I was expecting to much of myself to soon with the medicine changes I was going through. I have learned a lot about myself through this and have been reminded several times to ask for help before the problem becomes larger than it needs to be.
I also have noticed how much I babble. My family is made up of some chatty cathys anyway so I can say part of it is hereditary but I have tried to remind myself to always say thank you for listening to my constant babbling.
Thank you for the hugs for my family. I have been keeping a log of food and feelings since I started talking to both of you. I also have a weight log because I am a weight watcher. which I missed a week when I wasn't feeling up to it and the following week the lady looked at me like I had 2 heads when I got on the scale and was down 13 pounds. but this week I went back up 0.8 which I had figured would happen, I just want to stay at my original goal weight wise but it isn't my biggest worry right now. I am ready to take on the rest of this journey through med changes. I know I am strong enough to go through the rest because I think I am almost through the worst part of it. of course I know it is a day by day adventure.
I admire and am completely envious of the fact that you can do the volunteering you do. I would love to be able to do more volunteer work instead of a 40 hour a week stressful job (not that the volunteering can't take a toll on you because you do have a lot of info from people like me being thrown at you but the way everything ends up for me I have to work to pay bills for my family along with my husband. Keep up the good work.