I met Tiffany at Healthevoices. She has such a kind soul and shes if beautiful inside and out. Here is her story about journey with epilepsy.
How has your life changed since being diagnosed with epilepsy?
I have learned to value my health much more. Eating better, exercising, eliminating anything that doesn’t bring wellness into my life. I reflect on all that I’m grateful for, all of my blessings each day.
How long did it take you to get diagnosed?
I experienced my first seizure at the age of 16. My second seizure happened at the age of 22. 6 years later, I was officially diagnosed with epilepsy.
Do you take medication? Do they have side effects?
Yes, I do take medication. They do have side effects, although being on medication for almost 11 years now, I’ve grown used to the minimal side effects.
How has it affected your mental health?
I experience seizures almost on a daily basis. Upwards of 10-20 smaller ones a day. It can sometimes be frustrating and stressful…I’ve experienced bouts of depression all in which are not uncommon but regardless I don’t let it keep me down and I keep moving forward with optimism.
When was your surgery?
My SEEG Procedure was last November.
How did it go?
The procedure went well! We got the results that we were looking for, located where the seizures were coming from, but unfortunately, I am not a candidate for brain surgery.
What advice would you give to parents of children with epilepsy?
Well, I’m not a parent but the best advice that I could give would be to lovingly fill them up with the knowledge of their condition. Guide them to feel empowered and not embarrassed or ashamed. Encourage them that they can still accomplish goals.
How has it affected your romantic life?
It has strengthened my husband and I’s marriage following my diagnosis. In the beginning, I told him that I understood if he wanted to leave but instead, he vowed to take care of me and our love grew much stronger since.
What is refractory epilepsy?
Refractory Epilepsy means that medicine isn’t bringing your seizures under control.
What was it like donating your hair?
It was a very rewarding experience. It was a decision that I had made years back before I made the decision to do the SEEG procedure. Donating my hair at that point made it even more rewarding. I felt so happy that I could help someone who was on their journey.
Have you had any frightening experiences?
Yes, there have been a few times where I have ended up in the ICU due to my seizures.
What advice do you have for people witnessing a seizure?
We need you. I know it might be frightening to witness, but call 911. Turn us on our side, time the seizure, move objects around us out of the way, place something soft under our head and stay with us until the seizure subsides and help arrives.
What are your triggers?
Sleep deprivation, stress, caffeine, menstrual cycle (Catamenial Epilepsy), anxiety, red dye, alcohol
What lifts you up?
First and foremost, my relationship with God, my best friend, and soulmate Chris, and taking the time and opportunity to help others on their journey with epilepsy.
Did you have to give up some of your independence?
Yes, there were a few things that I had to and chose to set aside for the betterment of my health. I chose to no longer drive though I have the ability to, I would rather not to protect others and myself. I can no longer work outside the home due to consistent seizures.
How was it giving up some of your independence?
At the beginning of my diagnosis, it was very frustrating and heartbreaking. It’s not easy to set aside tasks that you can complete on your own and have to ask for assistance but over time, I settled into the new way of living and my family and husband were/are so loving when it comes to helping in any way that I need.
Why did you become an advocate?
I became an advocate because I wanted to help all who are affected by the very same condition. All who are on the very same journey. Who may feel as I did and do? To help their journeys be a whole lot easier and fill them with hope and faith. There’s so much that the public has yet to understand about epilepsy and stigmas still surrounding the condition and I want to help pull away from the shadows and shatter the stigma. I want to help raise funds for a cure.
How can people find you?
I can be found on social media platforms: Twitter and Instagram!
Twitter : TiffanyKairos
Website : http://tiffanykairos.com/