Main » July 2004

July 29, 2004

Triggers and support groups

I have an online support group that I go to and either vent or just touch base with others who have epilepsy. It is called Seizures Disorders R Us and it is owned by a dear friend named Jude that I met on the old UW boards. When that board was shut down, Jude started a new one.

Ok now to tell about what triggers seizures in me. There are a lot of things like flashing lights, excessive heat or cold and staying in front of the computer too long. The last one really bites because I am a graphic artist/web page designer so I can't work anymore. I was working in front of the computer a couple of weeks ago and just surfing a bit when I had a GTC (generalized tonic-clonic) or grand mal seizure. I hate when that happens.

Posted by Rose S. at 4:36 PM

July 25, 2004

Another Day

This past week has been so hot here in Oregon. Excessive heat is one of many triggers for me, which growing up in Chicago you would think I would be used to. But it was terrible. Luckily I have an air conditioner in my bedroom so I was able to go in there and read. My son is here from Washington for the next week and if it cools down, we may be able to take a ride someplace.

Posted by Rose S. at 9:48 AM

July 24, 2004

Having A Seizure Alert Dog

I mentioned before that I have a black lab/border collie mix that is my seizure alert dog. Her name is Little Girl and I have had her for about 14 years. She was abused when we initially got her and was pretty much afraid of everything and everybody, except for my son. Eventually though, she bonded with me too.

Here is a bit about alert dogs. They cannot be trained to alert and they have to bond with the handler, as the person they are alerting for is called. The best dogs for this task are border collies, labrador retrievers, and other non-hyper dogs. They are classed by the Americans With Disabilities Act as service animals and must be allowed anywhere any other service animal is allowed to go. Once I was given a hard time about taking her into a park where dogs were not allowed, by a ranger, until I showed him a copy of the ADA  stating that she was allowed to be with me and also a letter from my doctor and a prescription written by him showing that I am required to have her with me at all times. That is another thing about having epilepsy. People tend to think there is nothing wrong with me and I get told time and time again, "But you look so normal". Oh well just another detail to cope with.

Back to Little Girl. She didn't start alerting right away. It wasn't 'til about 5 years ago that she started to alert. She will run in circles and make a kind of yapping noise, running to a person and back to me until she finds someone to follow her.  If there is no one home, I will regain consciousness with her at my side and she will not leave me until I am up and moving. Then she will make sure I am laying down and resting. Little Girl lays at my side or at my feet just to be sure I am OK. When someone gets home, she runs to them and tugs at their pant leg, bringing them to where I am at. I am pretty lucky to have a dog like her. Every person with Epilepsy should have a seizure alert dog.

Posted by Rose S. at 9:43 AM | Comments (1)

July 22, 2004

Trying to work

I tried working full time but when I put down that I have seizures no one would hire me. So I started a custom beaded jewelry and web design business. Bad thing is that with arthritis in my hands I can only do the bead work sporadically and well....staying in front of the computer is a seizure trigger for me so I can't do web page design. I am on disability, but even that depresses me, so I have to find something to while away the hours.  I have taken up doing paint by numbers now and also copper etching. It helps some. That and spending time with my son, my fiance Michael who loves me unconditionally and his two boys. I also have a black lab/border collie mix that is my seizure alert dog.

Posted by Rose S. at 7:16 AM

My Son

I know I may be bouncing around here and that things may not be in chronological order but that is the way my mind works sometimes. When I have a certain thought I have to write it down or I will forget it, so I just do it.

I have the most precious son in the world. His name is Patrick and he is sixteen years old. Ever since he was five, he has held my head when I had a seizure and as he got older, protected me from people who decided they wanted to be cruel to me because of my epilepsy.  He is my Shining Star, my light in my darkest hours and my bestest buddy in the whole wide world. Patrick is not a teenage boy but a young man with hopes and dreams and goals for his future, the type of son any Mother would be proud to call her own..and the best part is that he doesn't have epilepsy.


Posted by Rose S. at 12:52 AM

Learning to Cope

I guess the hardest thing is learning to cope with any condition,  especially one that tends to have negative stereotypes, like epilepsy. As soon as my friends found out I was diagnosed, I was called stupid or retarded, when in fact my I.Q. was higher than most of theirs! Kids can be awfully cruel. And it doesn't get much easier as an adult. I have been called more names than I care to count in the last 30 years since I was diagnosed.

I used to cry every time I heard the word "dumb" or "retarded" or when people would run from me thinking I was contagious just because I have a seizure disorder. But after giving it a lot of thought I wrote a poem that describes how I feel about myself and my conditions:

I Am Not The Sum Of My Conditions

I am not Epilepsy, RA or Clinical Depression. I am a woman, mom, friend, wife-to-be, and published  poet.
My illnesses are not me, nor am I them. They are a part of who I am, The part that makes me different from others.
I make myself who I am, Only I can define the person I have become.
Feeling sorry for myself is a cop out, An excuse for my imperfections. For if I was "Normal" what then would my excuse be For all my basic human flaws?

I try to look at the positive, Not the negative side of my person, Even after a  seizure, or RA flare up so bad I can't stand the pain,  or a bout of depression so deep I end up hugging a "stuffy" Curled up in the closet crying.
It is then that I rememberThat I am Rose Not  Epilepsy, RA or Clinical Depression, And that I am not the sum of my conditions.

Posted by Rose S. at 12:24 AM

July 21, 2004

In The Beginning

I guess I should start this by telling you how it all began for me....the epilepsy. It was a July day in my hometown of Chicago. I was seventeen years old, a bright happy teenager without a care in the world. I was standing out back of the three story brownstone I lived in with my mom, two sisters and brother. All of a sudden I found myself in the E.R. of Billings Memorial Hospital on The U of C Hyde Park Campus. My mom, who is an R.N., told me I just had a grand mal seizure. There was an inch long gash on my chin which required five stitches and a bump the size of a lemon on my forehead. Apparently I had collapsed while smoking a cigarette with my friends.

The doctors told me that my seizures were what is called temporal lobe seizures and were of unknown origin.
Next....Life, Relationships and Kids

Posted by Rose S. at 11:10 AM | Comments (1)