Back To Square One Folks!!!

[Elaine H]

Hi Julie

I was so glad to hear that someone else understands and sympathises with my plight! It's daft to be so scared I know that, but it doesn't help, the noise doesn't really bother me either, it's just that closeness of the machinary and that frame that keeps you still, I never used to be scared so I can't understand it. I'm hoping that they will let Mark come in and hold my hand, they did once before. That last MRI I had, was the night before my last lot of brain surgery, and that's the first time I've ever actually pleaded to be let out, what a chicken eh?! But the nurse was so sweet, I just kept trying to focus on my mum's face, and her strength, but it can be difficult can't it?

It's next Friday 31st October, 2pm our time, I'm going to try and be strong, I'll let you know how it goes, we go South afterwards to stay with my dad for a few days afterwards, so I have that to look forward to.

I'm still doing ok on the Trileptal, and the dreaded auras seem to have vanished thank God!! I've had a few Complex Partials, but to be honest, I'd rather have them than the auras if I could choose, I'm not usually there when they strike if you know what I mean?! I do have the most incredible dreams at the moment, I always have been a big dreamer, but just lately I've some totally bizzarre dreams, I always tell Mark about them the next day, and as he rarely dreams, Ihe finds it hilarious when I describe some of mine to him! Yesterday I dreamt about birds of prey, and last night, it was fish!!!!! God only knows why! I'll keep taking the tablets!! Ha Ha!!

Let me know how you are doing won't you? I'm at home all day at the moment so I'd be glad to hear from you, Mark is on a two day course until the end of today, then he is off work until November 9th, so I have my gorgeous man all to myself for nearly two weeks, lovely!! I'm a people person, I like my own company sometimes, but I prefer to be in a crowd, having a good laugh, and enjoying life, I hav eto be alone if I'm trying to concentrate or read, I always had to be alone in silence to get stuck into writing my book, it's nearly completed, and I hope you will all be able to read it soon, I've got to find a publisher, and my dad is giving me the software to get it all onto disc, at the moment it's all handwritten, I'll get it finished if it's the last thing I do.

I hope to hear back from you soon mate, and I really do hope all is well, and that you are happy?

Lotsalove

Elaine x

 

[maureen]

Elaine,

Good luck finding something else. It is clearly their loss to lose you!!!

Keep at it.

All the best,

Maureen

 

[seizures4ever]

Hi Elaine,

It's good to hear from you my friend! I will PM you soon because I want to respond to your entire post. I am so glad to hear that those auras have left you alone and allowed you some peace! And for the record, I agree with you: I would rather have a few complex-partials than all of the simple-partials/auras that haunt my day! So I definitely understand where you are coming from. :e:

I will do my best to write you tomorrow. If I get busy though, just know I am happy for you that the Trileptal seems to be helping a bit, and I am keeping you in my thoughts/prayers for that blasted MRI on the 31st!

Enjoy your time with Mark!

Lots of love, Julie

 

[drarvindr]

Dear Elaine,
Could you tell me the title of your book? i'd like to buy it. You've shown an incredible amount of resilience and (surprisingly)patience with these &^@#%&^ who are ignorant enough to keep you from your job because of your epilepsy. When i was in eighth grade my parents wrote a note to my teacher to watch out if i had any seizures and not to make a big deal out of it. She said " Everyone Arvind gets fits sometimes so i want each and every one of you to pay attention and not upset him". It's because of morons like this that the world treats us like we are a disease and not like we have a disease. SUE THEM !!! SUE THEM !!! SUE THEM !!!

 

[alivenwell]

This may be a silly suggestion, but with the thought of having special students who also have epilepsy, is it possible to start your own school for kids with disabilities? What do their parents think about this?! I know that if I had a kid who had epilepsy in a school that did not accept epilepsy, then I'd pull my kid right out of that school. And, then involve their parents in publicity that would expose this issue. There's power in numbers!

In the US, they have MRIs which are not enclosed for claustrophobic people in some medical facilities. I'm not sure if they apply to epilepsy, but it might be worth researching.

 

[brain]

Another "Editorial from Brain" ...

This may be a silly suggestion, but with the thought of having special students who also have epilepsy, is it possible to start your own school for kids with disabilities? What do their parents think about this?! I know that if I had a kid who had epilepsy in a school that did not accept epilepsy, then I'd pull my kid right out of that school. And, then involve their parents in publicity that would expose this issue. There's power in numbers!

In the US, they have MRIs which are not enclosed for claustrophobic people in some medical facilities. I'm not sure if they apply to epilepsy, but it might be worth researching.

That's the WHOLE STIGMA ... It's a GLOBAL problem!
I can speak that for a fact, because I work with many
Organizations and Agencies - not just in US & CAN
but also overseas in various places, that's why I have
Head Storms there - while I did have more sites (Inter-
national) on there, but due to International Regulations
and their Countries - they had to be removed. (BLAH!)

However, in the light of all perspective, the STIGMA
still remains - no matter WHERE you are! *sigh*
Some areas are far worse than others and some areas
are far more advanced than others; and here's the
loopy-end of it, it's wild and a fact:

"You can have one Country that's so advanced in
everything and yet be so behind at the same time
where it's so lopsided and backwards and yet it's
not really accomplishing anything or anyone!"

I mean - come to think of it, what good is it or of
benefit would it be if one advances so much in the
progression but does not put it into application?
People are going to still suffer. Then why all the efforts
into the research, having been approved, and yet,
it all come to naught, because no one is going to
profit from it? It's there, but no one can touch it.

Bewildering, perplexing, and mind-boggling. Both
backwards and forwards at the same time. What
goes on over elsewhere is in the same application
pretty much here-wise. There needs to be a balance
within and without. The Neuroscience is actually an
International Event / Team effort - with findings,
conclusions, studies, and all the ramifications within
and without, and with meetings "Epilepsia" - alongside
with ILAE (International League Against Epilepsy),
wherewith - it's marvelous that they've drummed up
all these things, but for what profit and margin?

Where's the innovation in application in motion? Until
Neuroscience gets it all together and not be so lopsided
and becomes more into the balancing act and become
more realistic-minded, only then shall one see the dire
massive explosive progression of Neuroscience in the
neurology field of Medical Science! Meanwhile, we wait.

 

[stilldancing_98]

Would you like to be the kid when another kid asks, What school do you go to? I am a parent of a child with epilepsy, I have epilepsy. Normalcy is the best thing for him.

 

[Elaine H]

Hi Drarvindr

Good to hear from you, and thanks for your support and encouragement! I will get this book finished and published if it's the last thing I do, I get the software from my dad this weekend, and then all I have to do is get it all typed up and get the photos sorted out. I've had a lot of support and encouragement over the book from various people over the last 9 years, that's when I started writing it, I'm calling it "Fit For Life" and I will certainly let you know when it's published. I've got so many factual books here from when I was doing my two university courses in Epilepsy, but I thought it would be good to write an account of how it has affected me, and all the things that I've done to raise awareness and try and educate people, having lost I think it's 7 jobs over the last 22 years because of people's complete stupidity and ignorance, I just really wanted to try and help, and if by reading this book I can help others to not go through all this rubbish that I have endured, then it will have been worth it! I'll keep you posted, and thanks again for your kind words and support, I hope you are finding this wonderful website as much of a help as I am!

Best Wishes


Elaine x

 

[Elaine H]

Hi All

Well, I'm still sitting at home, but, there has been a development, and I had a call from the school this morning, they want to come to see me at home, this coming Friday 7th November at 11.30 am, for a "little chat" they have also advised that I have someone with me, hmmmmm, not sure why, but I guess something significant to this charade is to be said to me. As yet, I have had no medical, been given no date for a medical, so I am still totally in the dark as to what is going on! Anyway, Mark is off work at the moment, so he will be here, and I will let you guys know what they have to say to me, either I get my job back, or they try and get rid of me, and I will find a solicitor, and do what I can to get justice, what I will remember through it all, is that I am an "ambassador" for all the folk with epilepsy, and I'll do my best to keep my cool and my dignity, I have done so far, but I am so determined to keep my proverbial "pecker" up, and not give in to them.

I hope everyone is ok? I had a slight altercation in the kitchen last night, I walked into our lounge with a cup of tea, and a cup of coffee, went into "wobbly mode" and started throwing the drinks everywhere, Mark took me back into the kitchen, sat me down, and I then proceeded to pee myself, lovely eh????!!!! True love!!! Anyway, he looked after me of course, but how embarrasing!!??

I'll let you know how I get on this Friday, and love to you all!!

Cheers

Elaine xxxxxxx

 

[brain]

Awww Elaine!



I hope things turn out for the betterment
for you and quickly!

(((((( hugs ))))))

 

[stilldancing_98]

I will be sending positive power to you. Receive it! I know it sounds stupid , but its kinda like positive power from the universe. Don't forget to breathe when or if you start to lose your cool. And log everything. Love, Teresa

 

[seizures4ever]

Oh goodness Elaine,

You are truly a strong, inspiring person. I agree with Teresa, log everything. As we say in the South "CYA" (cover your A$$) at that meeting...it will give you plenty of "ammunition" should you need it to battle these people for justice. :e:

I'm sorry to hear about your "multiple insult" seizure (a term I've coined for mine when I do more than one action that I am embarrassed about). We are both extremely lucky to have such great/understanding men in our lives, but it is still a bit of a blow to the old ego/self-esteem to do these things (at least for me). :agree:

Personally, my seizure "specialty" is spilling cereal (and then sitting in it). I'm not sure why I sit in the cereal every single time I spill it. onder: I have a long-standing history of sitting on the couch, on my floor, in my kitchen chair, and on my kitchen countertop in bowl after bowl of cereal. And just so you know you're not alone, I too, suffer from incontinence from time to time during my seizures. I'm sending you (((Hugs))).

I hope your meeting goes well. Please update us soon!
Stay safe my friend. -Julie :e:

 

[Meetz1064]

You know

I wish you luck too, Elaine.

And, if I were you, I would have a tape recorder handy that day......

 

[seizures4ever]

I wish you luck too, Elaine.

And, if I were you, I would have a tape recorder handy that day......

I was thinking that too Meetz! :agree: or possibly even a camcorder sitting on a mantle or something. Another idea, you may also want to get a signature...stating something like "this is what I understood you to mean" sign HERE if this is correct. Just a thought...

 

[Sandee]

Elaine,

How wonderful you have written a book. I sure hope we will be able to purchase a copy in the states when you are published! You have such a positive outlook despite every thing that has been thrown your way. You rock, girl!

I don't understand why England feels that epilepsy is so taboo. It's a fact of life. Some very famous people have suffered from epilepsy, Cardinal Richelieu, Margaux Hemingway, Socrates, Moliere, Joan of Arc, Vincent Van Gogh, Alfred Nobel, Lord Byron and Pope Pius IX to name a few. Look at what they achieved with their lives. The website I found this information is http://www.epilepsiemuseum.de/alt/body_prominenteen.html. Epilepsy is not a disease. It is a conditition.

Dear Elaine, I hope that they soon find the right meds for you. How fortunate you are to have Mark to help you through all this. Please know I think of you daily and include you in my prayers.

Lots of love and super big hugs,
Sandy

 

[Elaine H]

Hi Julie

Great to hear from you my friend!! I don't think I'm particularly strong, I think you just have to get on with it don't you? I tell you what though, if these two women are coming up to tell me they don't want me there and "thanks but no thanks" then I am gonna take them for every bloody penny I can, I know I am in the right with the Disability Discrimination Act 1995!! I told them all about my epilepsy at the interview, and there is no way on this planet that they are gonna say I didn't! I'm giving them the benefit of the doubt, and waiting to see if they are maybe gonna turn up with the proverbial olive branch and apologise, and ask me to come back, but we'll have to see, I will let everyone know what they have to say, it's just the way that they advised me to have someone here with me, too right, Mark will be here with me, I wish mum was here to hear what they've got to say, although mum was never frightened to say what she thought, it may be that things will turn out ok, and I'll get my job back.

I hope all is well with you mate? I know I had that bad wobbler the other night, how romantic, peeing on the kitchen floor!!?? Good old Mark, if anyone knows how to look after me he does, and being a paramedic is pretty useful too!!

I've almost completed my book, I've just got to get it all typed up onto a CD and send it out to some publishers, I saw my professor last week, and he wants me to e.mail it to him, so that he can write a little piece for me to add to it, I am so excited about getting it published, I am also awaiting the results of my two courses in epilepsy care and management, God if I pass them I shall be over the moon!! So I am trying to remain upbeat and positive, things can only get better eh?!

I hope you can keep in touch, it is always so lovely to hear from you, I know how great it is that we all understand each other and what we experience with our wobblers, I hope to hear from you again soon, and take care!! You are so right about us having good men to look after us, I don't know what I'd do without Mark!!!

Lotsalove

Elaine xx

 

[Elaine H]

Hi Sandee

You are an absolute darling!! Thank you so much for your encouragement and kind words, they mean so much to me!! I have one of the chapters in the book all about ancient cures and remedies for epilepsy, and a list of some of the famous folk that had the condition, a few others include, Aristotle, Charles Dickens, Julias Caesar, Edward Lear, Richard Burton, Max Clifford, and many many more. We did a lot of research for the book, and some of the ancient cures and myths and legends involved with "The Scared Disease" as it was known are hilarious.

I hope that they can find the right combination of meds too, although I am so pleased to say that the Trileptal has really helped to stop my auras/Simple Partials thank God!! I've always said that I could deal with just having Complex Partials as I'm not usually around during them if you know what I mean?! But the auras terrify me! Anyway, I got my MRI done and out of the way last Friday, I hate those things, but they let Mark come in with me and stand behind me pulling faces in the mirror, it went pretty quickly, and I was out and on my way down to see my dad on the south coast before I knew it!

I think we just have to keep strong and positive, I owe it to my dear dear mum to fight this all the way, I am so determined to drive again one day, and to find that elusive ideal job!! I'll keep you posted as to what these women have to say to me on Friday morning, I'm just glad that Mark will be here with me, I'm not known to have the longest fuse, and having Scottish blood, I have been known to lose my rag, I just want to represent all folk with epilepsy when they come round, so I must try and keep calm, I'll e.mail you all straight away once they've been and gone!

Thanks again for your kind words, and I hope all is well with you too? I'll keep my proverbial chin up and be in touch soon.

Lotsalove

Elaine x

 

[stilldancing_98]

I want the book:woot:I want the book!:woot:I want the book!:banana:

 

[Elaine H]

Hi All

Well, I had a visit from two women from the school I was working at, they had rang me and asked if they could come to the house, they also advised that I had someone with me! This made me suspicious! My partner was there with me, obviously I was intrigued to see what they had to say.

They had got their medical insurers to talk to my doctor, and I was allowed to read a copy of the letter that was sent to them. It basically just stated the facts, I have epilepsy, it isn't controlled and basically, they advised that I would be a risk being left in charge of kids with "special needs" when I may need them myself! I have to say here, that although I felt like a freak of nature, the children's welfare has to be of paramount importance here, so I can quite understand that it could be risky, leaving little ole' me in charge, when I could go wonky myself! As angry and peed off as I was, I can quite understand where their main concerns lay!

I did say though, that I saw myself as somewhat of an "ambassador" of people with epilepsy, and I would so hate for someone in the future with the same problems, to go for an interview, and they be put off because of me, they totally understood this, I was so pleased that they got where I was coming from.

I have to say, that they maybe will review the way they do things, I had my interview, told them all about my wobblers, and was offered the job about three hours later, pending references being taken, a medical, and full CRB check, no probs I thought, I didn't think that six weeks later, I'd be in this position. They have agreed to pay me up until Dec 7th, and have assured me that if I can get well, and get written proof of seizure control, they would take me back on, and that in the short time I was there, I did a great job, and the kids loved me! Thanks guys!!

I have so wanted my mum this last few days, I always miss her of course, but it's things like this where mum would have dealt with it, being a Jock, she didn't mince her words!!! I am dedicating the book "Fit For Life" to my darling mum! what an incredible lady she was!

Anyway guys, that's the last chapter in this farce! I have applied for three more jobs, so lets keep it all crossed, and maybe one day, people will see the person, and not the condition!!!!!!!????????? WATCH THIS SPACE??!!!!!!


Lotsalove
Elaine xxxxxxxxxxxx

 

[brain]

Elaine,

Let's hope that things will change for the betterment!
At least they were generous enough to make sure you
were being paid for all this time missed and will continue
to be paid. While it wasn't all the news you wanted to
hear but at least they're giving you a shot ...

No more "E's" for you - ship them off to Arctic Ocean!