Life with Epilepsy

New Neuro-Part 2

I really like my new neuro. He has ordered a sleep deprived EEG for tomorrow, which means I need to stay up all night and then have the test in the morning. Dr. Elsas Is a professor at OSU. He is doing a study about epilepsy and behavior modification so I may have a chance to be a part of that. I filled out all the questions and will know as soon as he gets the MRI back from my old neuro and the results of this EEG. I will keep everyone posted on how it goes.

New Neurologist

Tomorrow I go to OHSU for a neurology consult. I was sent all the stuff telling me that I should expect to be there at least 2 hours. This is not a bad thing. I have to remind myself to let them know that my old neuro wrote me script for a seizure alert dog. Maybe this new doctor will too.

Auras

Ok, today I thought I was going to have a GTC right in the middle of the mall. I started smelling that really weird smell and had to stop for a second. That meant stopping, grabbing some lunch and sitting there. Turns out it was the Cajun place in the food court! I was so happy that I wasn't going to fall down right there. I knew I had taken my morning dose of Tegretol so I shouldn't have been worried, but oh well....

Stress

Well it's been one of those weeks. Between my fiance having seizures and my son's friend having to go to the ER today, I really don't need any more stress. Stress is a seizure trigger and I need to keep away from that. I have to take my medication yet so that I don't have one. I also need to get some more rest. I have been up most of the night watching and taking care of Michael.

Talking About Seizures

Last night I had a discussion about seizures among other things with Michael. He is newly diagnosed with recurrent seizure disorder and was saying how frightening they were for him. I told him that I knew it sounded simple coming from me but that he has to keep reminding himself every day that they are just a part of his life. If he follows the regimen that he has to, like taking his medication, eating balanced diets, taking breaks from the computer and not spending hours at a time on it, working on maintaining a low stress environment, and just basically keeping away from all the normal triggers, he will be fine. That sounds easy coming from someone who has been dealing with seizures for the better part of her adult life. Now if only I could talk myself into following this in another area of my life!

A Long Drive

Today I have a long ride ahead of me....got to go pick up Patrick for a week. It is supposed to be hot out so I better take my meds and some water so that I don't get over heated. I have to refill my script and pick it up on Saturday. Oh well....I really hate having to carry the whole jar of pills with me everywhere I go.

A Seizure Kind Of Day

The heat has been unbearable. It's been a seizure kind of day for the last couple weeks. Excessive heat is a trigger for me so I have one of two options. I can either stay inside (which is good for my agoraphobia) or grin and bear it and try to go outside. Maybe Michael will take me for a drive when he gets home. I hate having to have him chauffeur me around. I wish I could drive again but the frequency of my seizures won't allow me to get my driver's license.

Meds, Meds, Meds

Just took my morning meds. I take 1000 mgs of Tegretol a day to keep from having seizures. Not that it helps any. I still have them. I can't wait till I go to OHSU in September to be evaluated again. On top of the Tegretol, I take meds for agoraphobia, high blood pressure, and pain meds for RA of the cervical spine, (the docs tell me that it is at stage 5 and will never go into remission....but that is another story). I have to keep a sense of humor somehow about this. I have been dealing with this for 30 years but sometimes it gets so darned depressing! The meds either make me sleepy, psychotic, or with so low a libido I am surprised my fiance hasn't dumped me by now........

Another Seizure

Had another seizure today...this is the third one in as many weeks.....ARGHHHHHH I hate this.

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.

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.

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.

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.

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.

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.
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