About

First Name
Tiffany

Last Name
Kairos

State
OH

Job Title
Founder

Twitter Name
@TiffanyKairos

I am a
ePatient

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Fri, Sep 6 7:57am · Finding Gems in the Rubble - Experts by Experience

It
was two weeks before Christmas and just days before both our birthdays. We had
been married only four months, and it would be our very first birthday and holiday celebration together. I had
been thinking about my life as a wife – married life – with children, a yard, flower
beds, maybe even a vegetable garden!

All
of that changed on December 11, 2008. I was driving to the store to pick out
birthday and Christmas presents, when I had a grand mal seizure. Lying in the emergency
room, I learned that I had crashed into a tree when I had the seizure. Days
later, I was diagnosed with epilepsy – I was 22 years old.

Understanding and accepting the unpredictable

It
can be tough to understand a condition that is unpredictable, and sometimes,
uncontrollable. Medication is an excellent deterrent, but there are days when
the seizures find a way around it. I’ve had several medication adjustments and
switches in order to try and find the right combination to tame my seizures. This
is known as the “honeymoon phase” – a phase when one can get away with having
no seizures for a period of time. Soon enough, however, we have to go back to
the drawing board of medications and combinations. I’ve come to accept this
reality, brace myself for whatever may come, and be thankful for another day.

The doctor-patient relationship – a keystone of care

A
healthy and productive relationship between doctor and patient is invaluable – I
was fortunate to have great medical care. I found it exceptionally refreshing
to have a doctor with such a determination to help stop my seizures, who paid great
attention to my questions and concerns, who went beyond our allotted
appointment times to make sure that any unaddressed issues were met. Sure, he
didn’t always say what I wanted to hear, but he gave me honest opinions and
straightforward recommendations. For me, he was more than just my doctor – he
was my advocate.

Family – growing closer together

I
didn’t always have the greatest relationship with my family, rarely keeping in
contact with one another. Following my diagnosis, I began to notice that we
were drawing closer to one another, keeping in touch with one another regularly,
be it phone calls, texts, or even the occasional visit. Today, I find myself
blessed by an incredible spouse who gifted me his love, wisdom, an ear to
listen, and a shoulder to cry on…and with a family who stood by our side every
step along the journey. I see this as one of the biggest blessings to come out
of the diagnosis.

Being part of a community

I
am one of 3.4 million people in the U.S. living with epilepsy. Living with a
chronic illness can make you feel detached and isolated. Throughout the testing,
the seizure streaks, the recovery periods, I would have candid conversations
with friends within the epilepsy community. The community became my extended
family – reaching out during rough patches, providing me with opportunities to
lend a helping hand to others. Now, when speaking with people in the epilepsy community,
I drive home the point that epilepsy may be in my life, but it doesn’t own my
life.

A blessing in disguise

As
I continue to journey through life with epilepsy, I realize that although I never
expected this condition to come into my life, I am thankful for the
opportunities that I have been given – to grow as an advocate, to find a way
forward to seizure freedom, and to create positive changes in the lives of others
who are also on this journey.

Finding
gems in the rubble. That’s how I see it.

Experts by Experience is a collaboration
between  
Inspire and Mayo Clinic Connect, online support
communities for patients and caregivers. By sharing their stories, patients
and caregivers awaken, inform, and strengthen the capacity to partner in
their care. The stories also help clinicians and non-medical professionals in
health care implement patient-informed practices in their interactions and
communications, by uncovering opportunities for quality improvement. The series
showcases the value of shared experiences and features contributors from around
the globe.

About the author: Tiffany Kairos is an epilepsy survivor,
blogger, advocate and founder of
The
Epilepsy Network (TEN) Organization
, an online community, devoted to providing better epilepsy
awareness and education, and offering inspiration to all those affected by
epilepsy.
You can find her
on Twitter at
@TiffanyKairos

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