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  • No-Fail Ways To Remember To Take Your Medication

    July 4, 2022 / No Comments

    We’ve all forgotten to take our medicine at some time in the past! It’s human to forget a dose or take it late, so don’t panic if it happens. When…

    By Tiffany Kairos
  • Here’s Why Epilepsy Needs Better Representation

    July 2, 2022 / 2 Comments

    Seizures can be scary. They’re not fun to have and they’re not fun to watch. But does that mean we should be silent? I feel compelled to talk about something…

    By Tiffany Kairos
  • 5 Mistakes I’ve Made With Epilepsy

    March 15, 2022 / 2 Comments

    Learning to live with a chronic illness can be challenging. There is no shortage of new things to learn and juggle. Mistakes are bound to happen and I’ve made plenty…

    By Tiffany Kairos
  • 5 Ways to Battle Back Isolation While Living With Epilepsy

    January 18, 2022 / No Comments

    What those with an outside perspective might not understand is how epilepsy can affect your mental health. Many people believe that living with epilepsy is just experiencing the physical aspect…

    By Tiffany Kairos
  • 7 Ways to Support a Friend with Epilepsy

    December 8, 2021 / 1 Comment

    Throughout our lives, we are likely to have a friend who is diagnosed with a chronic illness. Sometimes we know exactly what to do, other times we’re clueless. There are…

    By Tiffany Kairos
  • 5 Things Everyone Should Understand About Epilepsy

    November 10, 2021 / 2 Comments

    Epilepsy is widely misunderstood due to lack of awareness. There are so many aspects to the condition that most are unaware of. Have a look at 5 things everyone should…

    By Tiffany Kairos
  • 8 Best Apps To Help Tackle Epilepsy

    October 31, 2021 / 1 Comment

    Living with epilepsy is more than just knowing your seizure triggers, current medication, and dosage. Apps designed to manage epilepsy can help you to take a practical approach to your…

    By Tiffany Kairos
  • Doctor and patient

    Things to Consider When Choosing a Doctor

    August 11, 2021 / 1 Comment

    Being diagnosed with a chronic illness is one of the hardest things that can happen to us in our lifetime. I was 22 when epilepsy unexpectedly barged through the doors…

    By Tiffany Kairos
  • Tourist traveling

    5 Helpful Tips for Traveling with Epilepsy

    June 29, 2021 / No Comments

    Ready to hit the open road or hop on the plane to head to that tropical island or that world-renowned national park? Not until you’ve secured everything revolving around your…

    By Tiffany Kairos
  • Person feeling guilty

    7 Things Not to Feel Guilty About Living with Epilepsy

    April 14, 2021 / 4 Comments

    Becoming diagnosed with epilepsy is a life-altering event. Epilepsy does not care about your age, or the time within your life. This condition can happen to anyone. Some are introduced…

    By Tiffany Kairos
  • Group of people talking

    5 Things Those Living With Epilepsy Want You to Know

    March 19, 2021 / No Comments

    Epilepsy can intrude into anyone’s life, at any time. Millions of men, women and children battle this selfish and at times difficult condition every single day. All of us diagnosed…

    By Tiffany Kairos
  • Speech bubble

    6 People You Meet Along Your Journey with Epilepsy

    December 8, 2020 / No Comments

    You’ve been diagnosed with epilepsy. A life-changing experience. Epilepsy doesn’t always show its cards and it can go unnoticed by family, friends and the public. With epilepsy being a part…

    By Tiffany Kairos
  • Gifts

    The Ultimate Gift Guide – Gift Ideas for Someone with Epilepsy

    November 20, 2020 / No Comments

    Epilepsy is hard to explain, let alone understand. It can be a real head scratcher to come up with an ideal gift for someone living with epilepsy, especially if you…

    By Tiffany Kairos
  • Woman with red hair

    Things to Never Do When Someone Tells You They Have Epilepsy

    November 6, 2020 / 1 Comment

    I remember the very first time that someone spoke the words, “Everything will be okay!” speaking about my epilepsy. Fire engulfed my stomach. When a family member spoke this to…

    By Tiffany Kairos
  • brain fog

    Understanding Brain Fog And Epilepsy

    August 31, 2020 / 2 Comments

    Speaking candidly, alongside seizures, brain fog is one of the most difficult – and sometimes exhausting – parts of living with epilepsy. What does brain fog feel like? Brain fog…

    By Tiffany Kairos
  • Mental health

    How to Protect Your Mental Health While Living with Epilepsy

    February 15, 2020 / No Comments

    What Is Mental Health? Mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate…

    By Tiffany Kairos
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About Me

Tiffany Kairos

Hi there! I'm a blogger, advocate, content creator and co-founder of the The Epilepsy Network (TEN). Within this blog I talk about my experience with epilepsy, along with provide inspiration and motivation to epilepsy warriors and caregivers!

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There’s no predicting when a seizure will strike There’s no predicting when a seizure will strike. You can feel completely fine one minute, next thing you know you’ve got a splitting headache from an unexpected visitor. 🥴

That’s the reality of life with epilepsy. 

I live with a form of epilepsy called Refractory Epilepsy which means it is TOUGH to manage with medication. Try domesticating a dragon. 

I might not experience a seizure every day or a tidal wave amount but predicting would be a waste of time. 

The only thing I know to do is heed warnings and prepare for any situation. 

Who else has a tough time managing their seizures? 
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
Truth Bomb 💣 You only see me when I’m well Truth Bomb 💣 

You only see me when I’m well enough to be seen.

Warriors, would you agree with this declaration? 

People who are unaware of the magnitude of what I endure living with epilepsy don’t see that on bad days I feel like I’d ran a marathon. I’m exhausted! Sometimes I can get the rug pulled out from underneath me with a tonic clonic, be bombarded with symptoms or just need an mental/emotional timeout.

The good days are golden days to spend with family and friends. Genuine smiles and laughter. Styled hair and favorite outfits. 

People who question the authenticity of my chronic illness don’t see the other side of the coin. Unless they’re willing to listen, look and learn. 

People see us when our chronic illness has given us a short break. There’s more to us than meets the eye however.

So what helps the most is BELIEVE us. 
Even though you can’t see it, we’re in a war we didn’t sign up for. 

What’s one thing you do when your chronic illness cuts you some slack? 🤍

I’ll go first - Movie night!! 🍿🍫
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
We’ve all forgotten to take our medicine at some We’ve all forgotten to take our medicine at some time! We’re human. 🤷🏻‍♀️

When we have a lot on our plates…career, kids and other obligations, our focus can accidentally get side tracked. 

Brain fog can even trip us up!

Thankfully technology has made reminding us a heck of a lot easier. 

For the busy bees, those who endure brain fog, and just enjoy having that extra layer of security there are great FREE apps available and some wow-factor hacks!

A few helpful methods 👇🏼

⋒ The Smartphone app is most commonly used
⋒ The Epsy App
⋒ Taking your medicine on time everyday 

Read the FULL article (Link in BIO!)

Warriors, what helps YOU remember to take your meds? 🧠✨

Let’s chit-chat! 🤍

Tag a friend (or two) who could use this info & save this for yourself to revisit! 🫶🏻 
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #northeastohio  #ohio #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Dr.Google gets a bad rep sometimes! 🤓 It's oft Dr.Google gets a bad rep sometimes! 🤓

It's often suggested NOT to Google your chronic illness. That there’s more harm than good to come from doing so.

Doctors and those in our lives will warn that turning to “Dr. Google” for better understanding could lead to mis-diagnosis and unnecessary concern.

When I was diagnosed with epilepsy, I was given two sheets of paper and a thin introductory pamphlet. Not so helpful. 

What was helpful was being my own advocate and doing my homework. Sponging up everything I could about my condition.

The caveat: Only visiting reputable organizations and websites such as… 👩🏻‍⚕️
⋒ @clevelandclinic 
⋒ @mayoclinic 
⋒ @healthline 
⋒ @webmd 
⋒ @healthgrades 

Yes, we do have to do our research wisely. Not every website has accurate information but reputable sites can provide the information you need to better understand your illness, what you can do to tackle symptoms and perhaps reveal a mission-field designed for you such as:
⋒ Blogging
⋒ Vlogging
⋒ Public speaking etc…

Do you Google your chronic illness? Has it helped you a little or a lot? 🤍

Warriors remember if you turn to Dr. Google only visit reputable organizations and websites! Pay attention to which Google Dr. you visit.

Tag a friend (or two) who aught to see this & save this for yourself to revisit! 🫶🏻 
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #northeastohio  #ohio #reelgrowth #epilepsyadvocate #reels #newreels #newreel
With summer underway, getting out and enjoying tim With summer underway, getting out and enjoying time in the sun with family and friends is something everyone wants to take advantage of! 😎☀️

While getting out and enjoying life is certainly important, it’s also important to consider some of the potential risks that can come from being out in the heat when you have epilepsy.

By taking steps to make you more comfortable, seizures could potentially be prevented.

In addition remember to:

⋒ Wear lightweight and light colored clothing
⋒ Wear sunglasses to protect your eyes (3% of people with epilepsy are photosensitive)
⋒ Wear a medical ID bracelet 

What other summer seizure safety tips would you add to the list? 🌴🤍

Tag a friend (or two) who could benefit from this & save for yourself! 🫶🏻 
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #northeastohio  #ohio #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Hmm…I didn’t know there was an age requirement Hmm…I didn’t know there was an age requirement on when you could get sick! 🤔

That’s because there isn’t. Chronic illness can happen at any age. 

I was in my early 20’s when I was diagnosed with epilepsy. No reason or explanation. 

I’ve been told I’m too young multiple times but this is because of lack of education. Which is the fuel that ignites me to provide them awareness. 💛

At what age or age range were you officially diagnosed with your chronic illness? 

Warriors, no matter the age you were handed your diagnosis know with certainty that you are seen, heard and most importantly believed. 

If anyone questions the authenticity of your illness based on your age, remember that they’re in need of understanding. So help them. Teach them if they’re willing to listen. 

Tag/share with someone who needs to see this! And save for yourself to reflect on! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #northeastohio  #ohio #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Those who have Refractory/Intractable Epilepsy kno Those who have Refractory/Intractable Epilepsy know that it’s difficult to manage your seizures. 🫠

That’s me. I’ve been on countless medications, have had short-lived successes and returned to battle. 

But when we can make it a whole 24 hours having not had a single seizure, what a relief it is! A “Braincation”. 🧠🌴

Do you have Refractory/Intractable Epilepsy? Are your seizures difficult to manage?

How do you cope? My greatest coping mechanism is support!

Nothing compares to the chronic illness community. People who ‘get it’. Who understand your experiences firsthand and will always be in your corner.

Warriors, if you’ve made it 24 hours without a single seizure or flare up, congratulations! And I am cheering you on for many more days free from symptoms!

You can count on my support endlessly! 💛

Tag a friend (or two) who could could relate & save this for yourself to revisit! 🫶🏻 
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
For some, it actually and unfortunately takes SEEI For some, it actually and unfortunately takes SEEING to begin BELIEVING. 

Several times I’ve had my epilepsy called into question because I have good days which allows me to take part in activities I might not otherwise be able to because I’m struggling with a cluster of seizures or recovering from a seizure. 

For some family members and friends, it took them actually witnessing me have a seizure in their presence or news of me being in the hospital for them to understand that I was telling the truth! 

No I wasn’t over exaggerating, no I wasn’t being over dramatic and I most certainly wasn’t faking. 

Have you ever had your chronic illness called into question or been called a fake?

What was your response? 

Warriors, know you are seen, heard and validated! I stand with you and so does this community! 💛

Featured is one of my favorite survival kit items - @releafpack which is a lifesaver for after I have a seizure. The migraines are unbearable but this perfectly weighted, no condensation, ice pack soothes the pain away so fast! 

I won’t stop bragging ‘til all my warriors has one in their survival kit!! 

Pick one out and don’t forget to use my code to save yourself 15% off!! (TIFFANY15) 🧊❄️

Tag + share with someone who needs to see this! And save for yourself to reflect on! 🤍
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #northeastohio  #ohio #reelgrowth #epilepsyadvocate #reels #newreels #newreel
“What day is it?” “Who’s the President?” “What day is it?”
“Who’s the President?”
“Do you know where you are?”

Erm..umm…😵‍💫🥴

These are basic questions that someone (usually paramedics) would ask us after we’d just experienced a seizure. 

For most of us living with epilepsy, we can barely form a complete coherent sentence because our brains have just been scrambled and we need a few moments to regain composure.

Has this happened to you my epilepsy warriors? Asked questions straight out of a seizure? 

What typically helps me are hand gestures. A thumbs up or pointing at my mouth indicating that I need a sip of water. 

What helps you communicate during that time period when you’re not really able to talk? 🤍

It’s good to check on our awareness but keep in mind, we might not be able to communicate straight away so if that’s the case:

 ⋒ Ask yes or no questions so we can nod or turn our head 
⋒ Suggest other methods like hand gestures. 
⋒ Suggest hand squeezes 

Tag a friend (or two) who could might find this helpful & save this for yourself to revisit! 🫶🏻 
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #northeastohio  #ohio #reelgrowth #epilepsyadvocate #reels #newreels #newreel
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Disclaimer

This blog is not here to replace medical advice from trained professionals.

Please seek medical advice.

This blog serves to offer my personal experience with epilepsy, what has worked for me, encouragement and support.

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