feelings of terror with seizures

Re: Re: Re: Re: Re: feelings of terror with seizures

Submitted by gretchen1 on Wed, 2006-04-26 - 04:09

You're welcome Andy. Your comments were very nice. I was so lucky right after I was diagnosed. I'm an RN and a degreed midwife and honestly? Medicine is so specialized now that it's impossible to know much about any field in nursing unless you work in it and in 28 years I did not ever one time work in neurology. In fact a lot of hospitals don't even have neurology departments. So I joined an E forum 7 years ago or so with some people who seemed to just not be able to give enough to me. I was very obviously trying and trying to grasp epilepsy, and was having a very hard time doing so. Those people who gave so much to me I'm still friends with. That giving when I needed it so much has made me want to give to others. I feel obligated in a nice way too. I think many of us feel that way tho. You know the ONE thing I have learned over and over again and it still astounds me and I'd love an explanation but I've long given that up is this. Why does there seem to be so much apathy, incompetence, and lack of professionalism with neurologists and ER staffs? And this is absolutely not just my biased impression. I have gone through so many horrible, yet solidly proven things that can be evidenced that are not just despicable, some are illegal. Right now I am still trying to decide if we're going to sue a hospital for very very obvious sexual assault from a male medical student that we now have 3 depositions from 3 nurses who WATCHED this assault when I was having a sz! Now he's claiming I didn't have a seizure - hinting I was a willing participant with this goof. I mean GOOD GRIEF! I can't decide if I just want that experience out of my life or I want to go after him with a razer. THEN when he figured out I was coming out of my sz, figured out what he was doing and started crying and getting combative? He kicked me out of that ER, still sz'ing and alone, and it was dark! A good samaritan in the parking lot helped me get help. Isn't that outrageous? I worry to death for my E children and g-children. Primarily I've worked with oncologists and OB/GYN's and I always saw disparities in some but this much. I can't believe the experiences I've had and the amount of them. It becomes laughable. Like that stupid Valium offer you had? Ya think that GP didn't have a REAL firm grasp about E? This is THE truth. It happened two years ago. I had to be seen in a clinic. Every single dang time I walked in and up to the receptionist's desk? I seized. Like clock work. Finally we figured out they had recessed lighting and as I walked under it, it caused a strobe effect. I'm very photosensitive and down I'd go. It's all we could come up with. Anyway the dork I was seeing told me one day that from thence forth when I came for my monthly appt I had to call him from the parking lot, state I was there and he'd come out and SEE ME IN THE PARKING LOT. The reason being his receptionist had complained that every time I came in and only dropped, it gave her nightmares for several nights. CAN YOU BELIEVE THAT? I was so insulted I started crying. I so wish now I could go back and give him what for. I saw him ONCE in the parking lot. I absolutely refused to be treated like that again. Right now? I'm in a very good physician position, at last, on all fronts. It almost feels frightening - ya know? Some of the "oldsters" here know this, it's not a secret but since you and I just met I want to tell you that in the first year I was diagnosed, in all of our ignorance, we didn't realize that clustering seizures can become very dangerous and I tend to cluster. Or maybe it's that my husband didn't know what to do about them. Who knows, I don't assign blame, we knew almost nothing and my epilepsy was nothing like my son's and we thought, epilepsy is epilepsy, right? I clustered with drops for 2 solid days and received several skull fractures from whacking and whacking my head repeatedly. I had not only skull fractures but serious brain bleeds and my heart stopped twice. I wound up with three surgeries in a month. I lost a terrific amount of function and no one knew how much I'd ever regain. I had the most terrific therapists in the hospital and for months at home. My gosh my epileptologist was not only a great doctor, he's such a great human being I still see him and my whole family feels very close to him. I was in the hospital a month, then transferred to a hospital closer to my home for some period of time I don't remember. My husband lost a lot of work and to be real honest? He'd just had open heart surgery. We had no income but a lot of outgo and people on that forum quietly conspired and sent us some money just so we could eat. I will never forget their ability to give, when they probably needed nearly as much as we did. I've never seen such generosity. When I eventually started posting again? I was still having some severe problems speaking and writing. My sentences could only be about 2-3 words long at their longest but not one time did anyone say one thing. Sometimes things I typed didn't make any sense or I'd have these gigantic temper tantrums and not one time did one person ever blow up back, they were always kind realizing I was still healing and that was part of it. People would always answer me, gave me that dignity. Two of my children almost never left my side and I had several crises when in the hospital. They had few people to turn to. I don't know how but somehow some members started writing emails to them at first tentatively, soon daily. My daughter Robin is still fast friends with one of these generous women. My son,Tony, had not had a seizure for 6 years but the stress of my injury started him up again and he's still having some problems. That became known. He had many women and men writing to him, telling him he HAD to prioritize himself for me. Not letting him off the hook but so lovingly. He still writes back and forth with another man, 7 years later. In my lifetime, I have not ever met people who gave what was needed, weren't asked to do so, and not only had concern for me, but my family who they didn't know. It made me realize that though I think this is a horrid thing to have? It does create in most of us a terrific empathy that I have not seen in any other area of my life. I have had a recovery no one believed I'd ever have. I didn't do it alone though. That experience has left me with a lifetime empathy for people newly diagnosed or having problems, not because of what happened to me, but what was extended to me. Really, I mean that. I hope sometimes I do return some of that generosity to others. I still can't believe my beginning total ignorance of everything having to do with E. Now just about the point I think okay NOW I've got it? I learn something else and I think, how in the heck didn't I ever trip onto that! All I could offer you were my experiences and thoughts. You're obviously quite inteligent or I would have been afraid to be as open as I was. I'm sure you'll use anything I wrote as adding more information to the soup and make your own good evaluations. Really? I do amazingly okay. I am very hard headed (pun not intended)which is at times an attribute, other times a detriment to others. I do sz a lot and I have some impairment but somehow? I just keep on trucking. I always think - what's the alternative? I know there is a reason why I don't live in fear all the time of busting my head open again but whatever it is? It's just out of my reach of understanding it.I know it has something to do with all that was given to me and my family emotionally and you see I didn't know any of that until several months later. I owe people I think, to be the best I can be. I don't always get there. I do always try. A little thought to give to you. All of my life I was rush rush hurry hurry. The saying I didn't take time to smell the roses was true. Except I thought I didn't have time to smell them. But I always felt this emptiness that life was passing me by or I was passing it too fast, wasting it, and I couldn't get it corrected. It got worse as my many children became teens. I was really bugged about it but still it grew worse. I was making a giant salary frankly. I think I can say that because believe me, that is a distant memory lol. But it didn't mean anything to me. It came too easily maybe. I don't know. But then - I got this. I'm a first generation emigrant. My parents had typical emigrant fears. Homelessness, not having jobs, being hungry, government oppression, so many things. Every single night my mother sat with us or my aunt who partially raised me and said our prayers with us. Every night two things were included: Thank God for your good health and pray God allows you to get an education. Those two things made a huge impression on me. I became afraid of having bad health. Sometimes when I'd get off work from a hospital, I'd get outside and think, thank God I'm walking out healthy. I was ridiculously tenacious in getting an education after high school. I think I got degrees more out of fear, than desire. As a result of that? All of my life when I'd feel frightened of losses I'd think the ONE thing that can not be taken away from me ever is my education, work experience and then I got epilepsy this badly and - good by education, work experience - all of it in ONE day. ONE seizure. From that point I had a very hard struggle that stuttered and stopped for a long time but I think I'm finally there. That is I truly live each day, one day at a time. I hear people worry about tomorrow, next week, next year and honestly? I don't. It took a lot of work on my part to get there but now? I stop and I smell the flowers. Things I had and thought nothing of? I cherish now. I've always been a passionate person but now my passion is more directed, more real and sometimes I know a little over the top for some. But not for me. Plus I'm no longer afraid to show it, and my ethnc beginnings frowned upon showing much emotion. I threw that out. At times tho all this passion I have about so many things I think makes me an inappropriate forum participant. Nastily I guess I do think that is not my problem, but the ones who have a reaction to such open emotions. I'm no longer ever going to be what others expect or want me to be. Epilepsy freed me of that. I'm no longer bitter I lost a career I loved and worked hard for. I am sad. I now realize I have wonderful memories, many of them, I can reflect on and ain't I lucky? A lot of kind people helped me with that too because I complained bitterly about feeling so "empty and robbed". A woman wrote me the lyrics to the Rodgers and Hammerstein song "When You Walk Through a Storm". There is a lot of wisdom and direction in those hyrics if they are used. And THAT is what epilepsy has given to me. I still think tho, this is one darn hard way to get here! Nice "talking" to you. Gretchen