My connection to Epilepsy is that I am someone living with epilepsy since 1995.
My journey began, March 27, 1995. I was a young 29 year old, single mom to a 2 year old little boy. I was in college. I started having gran mal seizures with no explanation or reasons. Many months of ER visits, hospital stays, staples in my head, stitches in my face, MRI’s and others test, i was diagnosed with Epilepsy. Figuring out the right medication was the next struggle. All the while, raising my son, staying in college and working. I look back and I’m not sure how I did it. But it prepared me for the next 21 years to stay strong and try my best to stay positive. Not easy to do. Many tears, many 911 calls. My 2 year old learned how to dial 911 and push the chair to the door and look through the peep hole. Cody became my 1st hero. Fast forward to today, I have 2 more wonderful sons. Someone did want to marry me, and my Epilepsy. It does stick to you, no matter what anyone says, it’s part of you. And I’m OK with that.
My typical day is like anyone elses. I work at a police department in Illinois and love it. Only difference with me, is I take epilepsy medication. I see my neurologist every 90 days, and get regular MRI’s and EEG’s. I visit with my oldest son on the phone, who is now stationed overseas. He did such a great job protecting me, he’s now protecting our country. My husband and I play with our great dane when the weather is good, and our contemplating where we should move when the youngest is done with HS.
My support system is something I’m blessed to have. My husband is always checking my prescriptions, he picks them up, makes sure I’m taking on time in case I forget. My youngest son is his back up, checking to be sure too. I have terrific friends who will check on me when they know if I’ve had an “off” day. I’ll always be eternally grateful for my husband, sons and friends. My biggest support system.
I would like others to know that I’m still the same Denise prior to Epilepsy. Somethings have changed absolutely, but. …still me. My bucket list has changed now, I cry about different types of things and I worry about situations I never had to, but. ..still me.
What would make a huge difference for me is, making drugs that are proven to work, easier to get. Every single person diagnosed gets a wrist monitor covered by insurance. Definitely more research for SUDEP. No one will ever know the fear of going to sleep, kissing your husband, kids and dog good night and lie in bed waiting to fall asleep and wonder…..am I going to see the sun peak through the blinds in the morning to wake me? My 50th birthday is February 3rd, and I should be able to enjoy knowing that will happen. I will have grandchildren one day, I should be able to hold them. More research for SUDEP. SUDEP destroys the living too.