i am new here, please read and respond : )

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violarose
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 10/11/2006 3:06 PM (GMT -7)   
is that rude- please respond?  its just you put so much time in posting when you dont know if this is a busy forum or not.       : )
 
i got spinal menigitis 5 years ago. incredible how one night can change your life. but i am healed emotionally now. i have CFS and seizures, bad combination. I hate having seizures.
i had one on monday, 4 grand mals, i have 8 year old twins, going to pick them up from school, . i dont know how many times i have been hawled off to ER in an ambulance. its frustrating because you want to go home. i am agiatated, dont feel good, i guess the worse the seizures the more irritated and stubborn i get.          
i get upset because of misdiagnoses from doctors, - psedo seizures. but i dont have it. i would love it if i did, then i could cause a way to be healed, and drive again, and have my lovely life back.   but no, i get seizures mostly in afternoons, hot plays a role, casionos, noisy places, dont work well for me. being tired,    my dad and caregiver died in aug, with the help of friends i was able to be with my parents the whole time. it ws hard, several seizures from bering up all night with dad, but what am i suppose to do, sorry dad, i have to sleep.
 
i am really grieveing hard for my dad, i am not the same person, he drove me and the girls to school, we had coffee, took me to my doctor appt. i can even say that i am grateful i got sick so i got to be best friend with my dad, i said that before he died.
 
 

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 10/12/2006 8:50 AM (GMT -7)   
Hi Violarose,
 
Welcome to HealingWell!!!
 
I am very sorry to hear about your situation. You clearly loved your dad very much and he sounds like he was a really nice, wam friendly person. There is always someone online in the forum at some point or another as we come from all over the world, so there is always someone to talk to. Myself, I am from the UK but I know there are people in Oz, USA and more.
 
With regards to your seizures, do you have them controlled by meds or are you in the process of seeing a neurologist? I can COMPLETELY relate to being irritable following a seizure. I am one of the worst people to be around after a seizure as I can be very argumentative and very in-sensitive. (Not intentionally of course! LOL)
 
I hope you can piece your life back together and draw strength from what has happened. Given time, the pain of losing someone that close does fade, even though the memories do not. Feel free to email me if you wish.
 
My thoughts are with you and your family during this particularly hard time
 
Darren
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/12/2006 1:19 PM (GMT -7)   
Hey there Violarose... how are you? And no "Please respond" is not rude... :) We're very glad to have ya'! I'm sorry for all that you are going through... You sure do have a lot on your plate... Please let us know how you are...

Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

iowyth
New Member


Date Joined Oct 2006
Total Posts : 10
   Posted 10/15/2006 1:47 AM (GMT -7)   

Hello, I am new here also, and your post was the first I read. I became epileptic after a virus attacked my brain also, but it was many years ago now.... 22.

It's a nasty condition. Sometimes I say "it has eaten up and taken over my life". But then I look and examine and find the small things I enjoy.

Violarose, take what you can from this life. Your dear father has gone but you have children. I can still look at my grown sons and be thankful for the joy I get from them. My condition has led to some frightening times for them over the years, but it's not my fault, and it's not theirs. And I have been a good mother while being epiletpic. And you can also.

I am lucky enough to be able to work at a job I enjoy, but as the medication I take gets stronger and stronger, and as menopause approaches... I wonder how long that can go on. If I lose it, I will have to find something else. We just have to keep being strong and enjoying what we can out of life.

Stay away from bright flashing lights and any situation that may cause a seizure. Examine your life and what causes seizures. Foods? music?  Let anyone around you know of your condition and help them be prepared for a seizure.

Violarose, epilepsy is not an end. It's just a very harsh turn in the road.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/15/2006 9:00 AM (GMT -7)   
Hey iowyth... welcome to Healing Well... We're very glad to have you! What career are you in? Do you think that your employers will fire you because of the epilepsy? Please keep us posted! Talk to you soon

Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

violarose
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 10/15/2006 9:47 AM (GMT -7)   
oh i hope you feel better ((())))  I got spinal menigities from my virus, did yours have  a name?  but they dont know what kind of virus gave me that.     wow 22 years. i keep hoping that it will just go away, its been 5 years. much improved, did you have speech problems and cognitive problems too?

iowyth
New Member


Date Joined Oct 2006
Total Posts : 10
   Posted 10/16/2006 2:25 AM (GMT -7)   
Hi Ducky and Violarose.
No Ducky, My employers will not fire me because of my illness. I am in the top management of a small retail operation (3 stores, 60 employees) They value my contribution and have done a great deal over the years to help me when I have had GM's and Auras. But I am in a job which is mostly an intellectual contribution... and creative. And I'm getting very tired. I don't know how much longer that intellect will keep going at the pace I feel I need to do the job. And... I'm so tired.
Violarose, It was Viral Encephalitis. The lining around my brain swelled, caused a lot of seizures and some damage to my left temporal lobe. I have minor, very minor speech and cognitive problems, but I have learned to overcome them over the years.... or other parts of my brain have maybe taken over.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/16/2006 9:17 AM (GMT -7)   
Well, maybe you can stay with the company but take a less demanding position? Is that an option for you? It is wonderful that they understand and are supportive of your condition.
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 10/25/2006 1:41 AM (GMT -7)   
violarose,

I am so sorry about your father. Has your neuro done an EEG? Stress is a very large trigger for seizures. Did you have seizures before your father became Ill? I hope that you find Heaingwell helpful and supportive. Welcome.
Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Meds:  Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator

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