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seizures4ever

seizures4ever

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Hi. I am new to this site, although epilepsy is not new to me. I'm 29 years old (well technically, I'm 32...but I'm having a difficult time accepting that I'm in my thirties). ;) I'm married and have a two year old son.

I am diagnosed with so many "disabilities" that it is not worth mentioning; Life is a day-to-day challenge...as it is for everyone.

My tonic-clonic seizures are under control, but I have many many partials each day. Sometimes I seize for hours at a time. :cry:

Currently, my short term and working memory are deteriorating. The doctors think it is the sheer number of seizures I have and have had over my life. It is hard. I write better than I speak. I can barely keep up with conversation and being on the telephone is especially hard. And so I write, and write, and write.
It is no wonder why so many people with epilepsy have hypergraphia!

We attempt to communicate and live our lives in the best way we know how: drawing, writing, poetry, some form of outward expression because the inside is often total chaos.

I have my Master of Arts in Professional Counseling. I listen well to others, but I need a place where others are willing to listen to me.

I have a good sense of humor...so if my posts are very negative, you all know I am having a very bad day.

Today, my praise is: only having two poopy diapers to clean; Today my prayer is: to remember tomorrow that I joined this site! :rolleyes:

Hey everybody! -Julie
 
HI Julie - Welcome to CWE!

I hope you find all the wonderful reasons I did when I joined this forum.
My daughters memory is improving with neurofeedback therapy.

Do I take it you have one or two little ones underfoot?
 
Welcome!!!

I am in a similar situation to you, sort of...I have older children now (3 of them!). If you would like to chat, feel free to pm me. I will reply to them every time i remember to check my inbox...or that there is one to check...
 
Welcome to CWE

You've found a wonderful place to be..........

And, yes, we all have our issues with memory.....trust me on that. My memory is nothing but a joke at times.

I don't envy you the poopy diapers! My kids are well past that, they're in college now..........but, I imagine in the next few years they'll be presenting me with grandkids whose diapers I'll eventually have to change........YIPPEE!!!:roflmao::roflmao:

Settle in and make yourself at home. I'm sure Buckeye will be around soon with some coffee. He hasn't brought me my steak yet......:bigsmile: Running joke, sorry.

Welcome to the family. :bigsmile:
 
welcome to the site. i am just now getting comfortable. if you like to write please look up and join the creative writing page that is available through the social groups link. i did and it is a wonderful place to be able to share with others that are in the same boat and can understand.
 
:hello: Julie!

I'm finished with poopie diapers, thank goodness my
son's heading to 24 and I'm 46! I had to be reminded
how old I was today! :embarrassed: Because I actually
forgot how old I was! And I told them to heck with it,
I'm forever 21! :D As far as I'm concerned with women,
once you hit 21, you're stuck there!

;)

Welcome to CWE! And no worries, I was born with this so
as with me and my memory, it's like a Yo-Yo, a Roller Coaster.
In fact, I have a computer calendar that has to tell me stuff
or otherwise I'd forget! One of the first things I do is turn my
computer on and the calendar comes popping up. Forget about
the post-it notes, I'll forget where I put it!

:embarrassed:

As organized as I am, I forget! But I have good days and bad
days and in between days and who knows what days, and some
times I feel like picking on all the boys in here at CWE days!

:evil2: :roflmao:

Make yourself a home here in CWE!

 
Hi all. Well crud, I gotta go. My hubby is calling me (probably to change a poopy diaper)! ;) I'll drop back in tomorrow and read everyone's messages.
Thank you for welcoming me :)
 
Hi Julie,

Glad you joined the group. It is really great! O.k..you are funny..I can tell. Nice to know you joke about your age too. I actually did forget once when a Dr. asked me, and my husband corrected me! I am actually 41 and we have 2 teenage children. I have had seizures for a number of yrs..but only diagnosed this past fall. So I am still learning. Glad you're here!

Michelle
(Atlanta)
 
Hi Julie,
Welcome to CWE. I take it you are the official poopy diaper changer at your house? Me too, though I'm trying to convince my youngest (2 yrs) to use the big boy potty. His favorite thing to say when he has a dirty diaper is "Sadie pooped my diaper"--Sadie is the dog. :) My other kids (also boys) are 12 and 7. I'm 27 and holding...not ever going to be 29. My hubby turned 33 twice. On his 32nd b-day, he announced he was 33 and I corrected him. He didn't believe me and we got into an argument. Finally I called his mother and had her tell him how old he was.:roflmao: I'm supposed to be the one with memory problems...

I've had epilepsy since 2001 (in retrospect, I probably had many partials prior to that point). I'm doing good now, no seizure activity in over a year--I wish I had written the date of the last one down, so I'd know for sure. Oh well, I'd probably lost the paper I wrote it on by now anyway, like the shopping lists I always forget in my car when I get to the store.

Glad to have you here.
Morgan
 
Hi Julie! Welcome to CWE. :) I've found this place to be fantastic. :) So feel free to chime in, vent, ask questions, whatever...:)
 
Hi Julie, welcome to the forum. :hello:

I hope you will find what you are looking for here (and maybe even a few things you didn't expect). :bigsmile:
 
Hi everyone! Thank you for the huge welcome! Wow...I feel special (she says blushing) ;)

My son (who is two) did not sleep well last night. He has restless sleep, often with night terrors. He also talks in his sleep...I mean he REALLY TALKS in his sleep...carries on complete conversations with whomever he is dreaming about. He's usually "talking" to Barney or our cats! :)

Today was our trip to the allergist. We found out my son is allergic to cats, dogs, and dust mites (so basically I need to burn my house down). ;) I had the worst case of vertigo during the doctor's visit and then a seizure (I'm not surprised since I "slept" with a two year old clung to my head all night long)! I wrote EVERYTHING down because I knew I wouldn't remember it after we left the office.

And so, here I am, on the internet looking for info. on allergies. My hubby called me a "cat killer" when I told him the cats had to go outside. He repented immediately...which was a wise decision on his part...I think he could tell by the look in my eyes that he had stepped in crap with that statement!

Well friends, I'm off to research allergies. I'll be back soon! -Julie
 
Julie - My middle son was / is allergic to cats and dust mites. I redid his whole room. Cats came in, but not allowed in his room. He also has vitiligo which is an auto immune issue. Then I learned more about the immune system. When it is functioning properly the body can handle allergens. When it is not, you see the results.

I have another son, that is high functioning aspergers (a form of autism) and I am thinking most of his problems are due to an unhealthy instestinal system, toxins, and ... maybe vaccinations.

My third child is my daughter who has seizures. I am sure that they are caused by intestinal issues. Chronic constipation her whole life, ezcema, allergies, brought on by... perhaps vaccinations, since she stopped trying to talk after her shots and regressed again after her boosters.

I am attacking all of this through nutritional changes. No gluten, casein, corn, and soy. No additives, or HFCS. My eldest sees immediate changes with how his stomach feels. Rebecca's seizures are less when she adheres to the healthy choices. My middle one... isn't following the leader just yet.

I hope your research proves there are ways to heal.
 
Hi Julie! I feel your pain. I have a 6 year old that walks in his sleep. Caught him twice before he peed in the corner. As for the allergies...my 3 are allergic to cats, and the 6 year old is allergic to nuts and eggs (also has exzema). The other 2 have hay fever. As for me, only a mild hay fever that I developed after moving to socal. :)
 
:cheers:

The coffee finally got done. Here's a cup just for you Julie. Have a seat when that little one lets you and put your feet up for awhile. Glad to have another 'good sense of humor' on board.

Several recent posts about hypergraphia got me looking it up. It sounds like it has definite links to epilepsy. Some sites even defined it as a symptom of epilepsy and bi-polar versus a stand alone disorder. Several linked it to the temporal lobe.

Hope to see you stop by often.

:cheers:


Meetz - I thought you were bringing the steak. Medium-rare please!
 
Wow Robin! You have your hands full! As a side note, I'm also on a gluten free diet.
Not too difficult once you get used to it, but it can be expensive until you learn how to shop. I made my first-ever purchase on-line a few years back...and it was rice flour! How boring is that? ;)

Buckeye, I've done some research on hypergraphia over the years. There are many different ideas and theories put out there by researchers. Fascinating stuff.

O.k...what is the deal with steak...I like steak...I like steak jokes...when do I get to find out the secret to the running steak joke?

-Julie (the human pooper-scooper) :)
 
Yes very expensive. I have read that if you are organized and can get a prescription from your doctor that you can deduct the items on your taxes... .at least the difference. I am not that organized... yet. There is still hope.

I do not find rice flour boring at all.
What I find boring is having to read the labels that keep getting smaller and smaller, and trying to decipher what is written. I have come to understand that fresher is better.
 
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