support-help-discussions

RE: RE: support-help-discussions

Submitted by Gretchen on Wed, 2005-05-04 - 10:07

I really am sorry that no one has responded to other threads you've started. I've been on an epilepsy forum board, one or another, for about 6 years and they have saved my emotional bacon and taught me SO much my neuro at that time didn't it's astonishing. The one I was most most involved with? Did have a clique of women who posted on nearly every subject, would only address each other, would inappropriately quote others, and accused my daughter and I of some really vicious things. That was very painful to both of us and I think for all time I'll be a little bit touchy at least to some kinds of personal criticism and I've gotten some here by two people, neither of which were regulars here, and it hurts so I'm aware of this happening to me, and others. Because of all of that? I usually try to respond in some way whenever I see someone has a thread start and is not getting an answer, even if I have no good response to give them. The people here, when I was hurt in two posts? Rallied to my side, stood up for me and that? Felt just tremendous. A clique wasn't formed, friendships here were that are very precious to me but none of these people are "exclusive" but very giving to all. For instance JoAnne? If you've been reading her posts you'd know her life hasn't been a bed of roses at least since I've been reading but she gives and she gives indescriminantly - to many, and all. BUT....--I have no control over my seizures and I simply have days I can't post and sometimes those days can stretch multiply--I can't read all of the threads and after years of reading and posting quite frankly I skip past some threads on topics that I've read, posted about many many times before.--I have had serious (pancreatitus, liver failure) related health problems to the AEDs I take this year, at times have been too ill to post, or too ill to post intelligently. I've had other non epileptic serious health problems this year also, some of which I've shared here. MANY of us have very complicated lives and while we try to reach out to newcomers, often our own lives are in such shambles it is too hard to do.--I also tend to post when I'm post ictal, still do, but I'm trying hard to stop which means if I suspect I might be impaired, I'm not posting which has cut dramatically down in the posts I type on many many days. I started posting here several months ago. A person I'm very close to recommended this site to me but she rarely posts here herself. However I have had overwhelming support from many people and I have to say I think it's probably because, at least in part, because I was a person they felt they wanted to respond to. Which was my responsibility. Do ya kinda get my hint? The primary reason though is because there are truly kind empathetic people here, unselfish people who reach out to many when their own lives are chaotic, not going well often. There are NO exclusive clubs here, believe me or I wouldn't post here.Okay got that out of the way but the thought there are exclusive cliques here touched a little button of mine. I have atonic drops, adult onset. I really think, have also been told by neuro's, my epileptologist too, that one of the worst seizures to have are "drops". Normally there is no warning or aura, you just go down. Normally people fall flat on their faces or heads forward and sometimes backward or crumple in place but don't put our hands out or any other kind of defensive or protective mechanisms and there are a LOT of injuries because of drops. Droppers tend to be far more injury prone than people who have other kinds of seizures. Also Drops, at least I've heard this but this is not necessarily medically accurate but is true for me, can tend to secondize into a tonic-clonic seizure more readily than some other seizure types. I have been sutured, stapled, bruised, contused, had fractures, dislocations and I swear, isn't having epilepsy enough? I wore my hair in a really cute short bob for years. My hair naturally went into that shape without blow drying or hot iron curling too. But that is a hairstyle where your hair is all one length and my head has been totally shaved, partially shaved so often? I now only wear my hair in a very short, layered, "pixie" type do, because I'm bound to be shaved for suturing again and again, and growing my hair back out to this hairstyle is simply easier. I gave up on the "cool do". Without plain flat out hurting and getting injured so much anywhere on our bodies, I chronically have anger that I drop - at all. I swear I ALWAYS hurt or am injured somewhere because of it. I resent it. My adult son is currently "controlled" but he too Drops but in his case at 6-2 and about 225 pounds? When he drops there is a lot to hit the floor, he nearly shakes the house, thus he has really had some wholloping injuries. Just because he's so big, there's more to hit thus he hits much harder than much lighter me. That is such a worry for me, for him.You said you have a calcifying skull fracture? I have had skull fractures also, two, which occurred during the same period of time when I was clustering with drops for 2 days, and you need to take Drops because of their nature even more seriously than other types of sz's because of the potential for head injury. Do you wear a helmet? I know it's hot and itchy in the summer. I know it's nearly an advertisement strobing in bright light stating - I HAVE EPILEPSY and I know it's no fashion statement but I also know I don't want to crack open my noggin one more time - and neither should you. Would you please consider wearing a helmet. I have tried several kinds and finally went to ones specifically designed for epileptics. Then I bought 3, had 2 built into Western hats that I wear when I go out which makes me feel more socially acceptable. I also had big vents put in them because I do have a hard time being compliant in wearing helmets when it's hot. The bigger vents have helped with this.My son's history? He had epilepsy from early infancy. BTW epilepsy in all the 7 family members I have is considered, and obviously, inherited generalized epilepsy plus I have TLE's because of my head injury. My son's epilepsy's course throughout his life, up to the age of 19 was one of going out of control during growth spurts which occurred roughly twice a year until he hit early adolescence when he shot up like a weed and for 2 years was totally uncontrolled. When he was 19? His seizures just stopped. Eventually he could quit taking AEDs. Six years later was when I had my head injury, I was seriously ill, had multiple serious complications, multiple surgeries and the stress of that? Caused his seizures to return but by that time he was a married man, a father, and held a very difficult job, probably too difficult for his maturational level still he did an excellent job, but the stress of it when he started sz'ing again was no favor to the sz's and he struggled for 2 years to again try to gain control of his sz's, finally has but I think he holds on by a very thin thread. I don't know if there's any medical basis for this but I keep thinking that the longer he can go without sz'ing the better chance he has of never sz'ing again, but then maybe that's a mother's wishful heart too. He was a shining star at his large company until he started sz'ing. The weird discrimination he got was - none of his higher ups would discuss it with him. He was open about his medical history. Wanted to be open about what was currently happening to him, what he was medically doing about it and no one supervising him, and he had multiple layers of bosses, would listen to him, refused to discuss it. I had never thought of that kind of discrimnation in the work place but it was very frightening for him because a silent message was being sent to him very "loudly" but you can't talk and explain things to people who won't talk back! He held that job for a number of years but a few months ago this company, under new management, required him to install pirated software, he refused to do so, and realized he'd be fired so he resigned, is now at a new company. He can stay controlled apparently now but he has to be VERY watchful about his triggers and to the letter compliant about dosage times of his AEDs, he absolutely can not skip one dose, absolutely has to avoid loss of sleep and stress or he is going to have break through sz's, quite readily. He had to find that out the hard way but he nearly lost his life twice last year, from his severe asthma. Instead lost 2/5's of his lungs and several ribs and his mortality as now a devoted father of two became very real to him, and he finally started studying his triggers and became compliant to the letter, and has remained for the most part controlled since then. And that's his history. So, yes, he sz'd for 19 years, stopped for 6, started again most likely from severe stress he was loosing his mother (me) but is now controlled.Myself? I'm in my 50's. Found out after I was diagnosed 6+ years ago I was actually treated for epilepsy when I was 7 but my mother never told me that, went to her grave with that knowledge. My entire life I felt like I was nuts. Felt like I had to hide things about myself. Someone else printed this too, I was nearly relieved when I was diagnosed, at least I knew I wasn't crazy. These 6+ years later I still have that lingering feeling although epilepsy frankly trashed my former life. I am now rebuilding a new life. I was initially controlled for 5 months. I lost that control. I've had miserable, severe side effects from over 11 other AEDs. The two I take now don't control my seizures all that well obviously but without them I'm sure frankly I'd be dead. I'm intractable therefore because if for no other reason? I'm intolerant to most of the AEDs. There are two official reasons to be intractable and intolerance to AEDs is one of them. I went through two years of total misery being on one AED trial or another. Trying Lamictal for instance 4 times, with each time the side effects which were totally intolerable, dangerous even, growing worse with each attempt. I hope that answers then some of your questions.I was a "professional" also. I was a Registered Nurse of many years and had just reached that point in my life where all my years of experience had netted me into the high bucks category but after applying to over 30 hospitals, nursing homes, home health agencies and many other places? I can't get hired and I'm just now facing even if I was, I probably couldn't do the job. No nurse can function if they're actively sz'ing. That's just a fact. I also have an advanced practice nurse degree that was murderously hard to obtain. I know now that I have learning disabilities, probably because of epilepsy, which was also "good news" for me to find out why in the world I sought so much education and it seemed so much harder for me than anyone else! I was just shocked stupid when I found out I had significant learning disabilities. Then proud of myself I simply worked a lot harder than others, employed a lot of tutors, used every resource I could and got multiple higher level college degrees. But that stress also was no favor to my health. There are 4 areas in nursing, or at least were when I got my advanced degree, for advanced nursing degrees. Two are for PA's or physician assistants. One is called for administration. My degree, the 4th, is in midwifery. Specifically home deliveries. I've delivered over 1000 babies. Can you imagine then for me the investment I put into education? The years and years of experience I have? The huge amount of babies I've delivered or assisted in delivery? And now I can't use any of that? That one thing, that loss? Was and still is the hardest element for me to accept about my epilepsy. I loved my work. I needed the socialization I got from it. My self esteem was held aloft by what I did, and not so much who I was. That was a big loss for me, but as I've traveled along I've realized I shouldn't have defined myself by what I did, but more who I was.I could work limited hours in nursing now doing very select types of nursing but no one so far will give me that chance and I know I'm asking for a lot. Trying to name my own hours, having any employer realize there will be days I wouldn't be able to work when scheduled and then sculpting my own job because I'd need such specific accommodations and no one is willing to do that when there are enough healthy non-epileptic nurses around, and midwifes, to hire. What's the answer? I don't think there are any good answers. I lost a lot of physical possessions. I'm now on Disability and I imagine I will be for the rest of my life. I don't ever expect to gain control again. My goal is to reduce my sz's. Still I will always pine to work in a profession I always loved, was proud of. So I lost a lot of my identity, sense of self too. The loss of my income was very hard on my marriage. I also, I hate to ad mit, developed an attitude, a chip on my shoulder, a feeling of "specialness" as if I had it worse than others and know now, that's not true. Whatever anyone's particular situation is? That, for them, is the very worst. I had no hold on what is "the worst". It's always very individual, to the individual. Just recently after some years of really hard depression about just this loss do I feel I'm coming to grips with it - moving on. I have done some self employment type things. Not making a lot of money, certainly not working nursing either, but gratifying things, and things I NEVER thought I'd do to make any money. These experiences broadened me though. Also helped me developed a new self image, more confidence in myself because I've realized, I'm not going to let heavy seizing, rule my entire life. It's a large component of my life. It's no longer ALL of my life. Now? Some of these things I tried I think I could make a fairly decent income doing if I can maneuver myself into the where withall to implement two of them, and get a small business loan to get me started. One is running a kennel for dogs. I've been a dog handler all of my life but never thought I'd use that skill to make a needed income. I hold puppy training classes occasionally now. I am hired on a private basis for problem dogs. I also grew up on a farm. I found out with my epilepsy I couldn't drink cow's milk, started drinking goat's milk which was expensive so someone donated to me a Nubian goat, who put out far more milk than I needed. So? I started selling goat's milk, then I learned how to make goat's milk butter and sold that too. That was from just one goat so the income was not much but I have milked cows since I was a little girl, am proficient at it, and I would like to have a small herd of Nubian goats and find a market for their milk and butter. Maybe that's a pipe dream for me. But there is some realism attached to it. The point I'm making is epilepsy did change my life and I fought it tooth and nail. When I realized I was more than just a nurse, I could do and be other things too? My emotional life started improving. I no longer feel like my future are endless years of lonliness and seizures. My suggestion to you is to have very good communication with your employer. If your case load is too heavy that is going to create stress, possibly insomnia resulting in loss of sleep and those are two of the biggest triggers TO seize for many, most. I would start now sculpting accommodations to your employ at least on a temorary basis, to reduce your case load, and prioritize your sz's, over your job, before your system is so taxed you get in the situation I got myself into - now I can't stop sz'ing, because I think I simply worked way way too many hours, was extremely exhausted when I was controlled plus I took an antibiotic that notoriously cancels out my primary AED, which I didn't know at the time, yet everyone did seem to know but me and my nutty internist who gave that antibiotic to me out of his sample closet, so no pharmacist caught the error either. I worked 20 12+ hour night shifts in a hospital in a row. I can't tell you the exhaustion I felt. And that wasn't worth it. I started sz'ing again and now I can't stop. I often think about that 20 night seige and the gigantic paycheck I got because of it, how tickled we were, the extra's we bought, but then the REAL price I paid for it was, I lost control. But I was called in by others, felt I couldn't leave others in a lurch, and wound up hanging myself. That huge paycheck doesn't look huge now. My priorities were screwed up.I would do anything to go back and do what I'm suggesting to you. You've identified your problems. I'd get the communication going, be proactive for yourself, find your health priorities now, and hope that it positively effects your Drops.Good luck.Gretchen