Something To Think About Guys!!

[Elaine H]

I may have mentioned recently on CWE, my recent altercation with my hairdryer, I just wanted to give you something to think about.
I am possibly facing reconstructive surgery on my right hand and fingers, but have an infection in the wounds, so will have to wait and see.
I have been thinking about that day a lot recently, and the fact that one minute I sat there drying my hair, and the next I knew, I was downstairs, in the kitchen, making toast before I looked down at my hand and suddenly thought, wow, that looks bad, then, the pain kicked in, then, the realisation as to what had happened, and the panic that ensued. How terrifying is that, to have absolutely no idea whatsoever, no warning,to feel no pain, to sit there, fingers wrapped tightly around the end of a scorching hot dryer for God only knows how long?!!
What I wanted to point out here too, is that one of the drugs that I am on Trileptal/Oxcarbazepine, which I take specifically for Simple Partials/auras, has completely stopped all of my terrifying SP/auras, great, but, I now don't have a clue when I am in "wobbly mode" so I am stuck now between a rock and a hard place eh? I have always said that the auras were the most terrifying part of having epilepsy for me, I could highly recommend this drug for anyone out there that has, like myself, bad auras and SP's, it has been a phenomenal anti-convulsant, Trileptal/Oxcarbazepine. I have not really had side effects with it, and I take it with Keppra, again, luckily no real side effects.
All I really wanted to say here, was, when you dry your hair ladies, and gents I guess, think about it, how you are sitting, what skin you have exposed, is there anyone in the house with you, are you feeling wobbly, it has happened to me now, three times, with scars on my right calf, right breast, and now, my right hand, food for thought maybe, I just wouldn't want any one of you, to go through the most excruciating pain that I went through, I cannot begin to describe it, and would rather have brain surgery for a third time!! I've been advised to make sure Mark is around when I dry my hair now, and to be honest, I am terrified whenever I dry my hair, I've thrown the old dryer out, and now have a newer model, I pray to God that it doesn't happen again, maybe I should get my head shaved, and I am thinking of investing in a dryer that automatically switches off when dropped, there are some out there that are designed for us guys with epilepsy.
Hope 2010 going ok for you all, I am working hard on the book, and have a few things lined up for National Epilepsy Week here in the UK, lets all keep positive, and keep waving that proverbial flag, most of all, as I told Jamie my latest friend to be diagnosed with epilepsy, hold your head up, and do not be ashamed to simply be... a person with epilepsy, it's no big deal!!! :clap:

Lotsalove

Lainey xxxxxxxx

 

[Meetz1064]

Aww, man

Elaine, it really sucks a hill o'beans about what happened to your hand. Perhaps, though, your meds ARE NOT working well enough? Perhaps your levels are not within the therapeutic range? Maybe you should have them checked, and possibly have them increased or talk about switching meds........

Just throwing an idea out there....

 

[Cint]

Elaine H;86319

How terrifying is that, to have absolutely no idea whatsoever, no warning,to feel no pain, to sit there, fingers wrapped tightly around the end of a scorching hot dryer for God only knows how long?!!

All I really wanted to say here, was, when you dry your hair ladies, and gents I guess, think about it, how you are sitting, what skin you have exposed, is there anyone in the house with you, are you feeling wobbly, it has happened to me now, three times, with scars on my right calf, right breast, and now, my right hand, food for thought maybe, I just wouldn't want any one of you, to go through the most excruciating pain that I went through, I cannot begin to describe it, and would rather have brain surgery for a third time!! I've been advised to make sure Mark is around when I dry my hair now, and to be honest, I am terrified whenever I dry my hair, I've thrown the old dryer out, and now have a newer model, I pray to God that it doesn't happen again, maybe I should get my head shaved, and I am thinking of investing in a dryer that automatically switches off when dropped, there are some out there that are designed for us guys with epilepsy.

Elaine,
I am sorry to hear about your ordeal with the hair dryer, but also want to point out something else. Is Mark around when you bathe/shower, cook, use other appliances, etc? The reason I am asking is because this type of seizure can happen while doing these type of things. I know because I had a seizure in the bathroom and fell into the tub with hot water scorching my arm and back, severe enough-- 1st and 2nd degree burns. I had to have skin grafts and 3 reconstructive surgeries. Now I live with an arm and it's ugly burn scars and when exposed to the public in the spring and summer and people ask "what happened?" It took me years to tell the truth, that I have epilepsy and fell in the shower. But it has become much easier over the years.

 

[Nakamova]

Elaine, I'm so sorry about your hand. I hope the infection heals quickly. Unfortunately, probably a lot of us here at CWE have "battle scars", both visible and invisible. Your advice about the hairdryer is good, but it can be tough to safety-proof everything in the house. You can do all that and still slip in the tub!

 

[Elaine H]

Safety in The House

Hi Guys

I would never have a bath without there being someone in the house, after all, you can drown in 2" of water, don't worry, after 25 years with this I am rarely caught out, and although it was bad enough, I have only burnt myself three times in 25 years, but of course, there are only certain limits we can go to without living very sheltered lives and I am not gonna let this bloody condition get the better of me!! I have the neighbours tel no's, I'm only alone two nights a week, I try never to put myself at risk and don't do very much cooking when Mark is on his two nights, don't think I don't always assess the potential dangers that I face every day, I am terrified of electricity, always have been, and the thought of drowning is horrendous!!
Meetz, you said about my AED's, well, I so wish that after 25 years they could get the combination right, but no, I'm in the best hands I could be in the UK with my professor, and I am more than aware that TLE is the most difficult to control, I will just have to try and take more care of myself, I guess we could all take a bit better care in our everyday lives, but there are very rarely any occasions, when I don't stop what I'm doing and think, hey, c'mon Lainey, you so cannot do that alone, or go there alone, I feel as though I go a bit OTT sometimes, but we can never be too careful eh guys?
Hope you are all ok, lets make 2010 a great one eh? and if I get the job at my doctor's surgery, well, I'll be in the best place huh? I have also just spent the entire day working on my book, and it's getting there, I am so passionate about what I write, all I want to do before I die, is help others out there who face living with epilepsy and if I can do that it'll all have been worthwhile,every bump burn and bruise, and believe you me, I so mean that!!!

lol

Lainey xxxxxxx

 

[Cint]

Well, I had brain surgery, too and the VNS and still had seizures, but was alone quite a bit because my ex was a pilot. Now I live on my own, with friends checking in once in awhile, so it can be done. Why do you feel as though you cannot do some things alone? How are planning on working if you feel that way?

 

[stilldancing_98]

Maybe I need to take a trip. I have an exboyfriend out there whos comming out here to see me this summer. hmmmmmm, maybe he can bring me back for a little vacation? Ill find out.Now! Take care......I am going to pray for you!Teresa

 

[Rae1889]

as I told Jamie my latest friend to be diagnosed with epilepsy, hold your head up, and do not be ashamed to simply be... a person with epilepsy, it's no big deal!!!

Exactly. No big deal at all. its tough to learn, but its true. and once someone understands (with any illness or anything) that it is no big deal, it really is no big deal. Love life, and live happy. and dont let anything stop you.:e:

 

[knothing]

I have also just spent the entire day working on my book, and it's getting there, I am so passionate about what I write, all I want to do before I die, is help others out there who face living with epilepsy and if I can do that it'll all have been worthwhile,every bump burn and bruise, and believe you me, I so mean that!!!

You sound so motivated and inspired I am truly impressed. Really I am.