Rise Above Epilepsy

  • Home
  • About Me
  • Epilepsy
  • Media
  • Contact
  • Home
  • About Me
  • Epilepsy
  • Media
  • Contact

  • 10 Essentials to Pack for a Hospital Stay

    September 26, 2022 / No Comments

    If I don’t come prepared then I can prepare to be extremely bored during my hospital stay. If you or your loved one has an overnight or lengthy hospital stay,…

    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

Search for Topics

SUBSCRIBE

Subscribe and be notified as soon as a new article is posted!

We don’t spam! Read our privacy policy for more info.

Check your inbox or spam folder to confirm your subscription.

About Me

Tiffany Kairos

Hi there! I'm an epilepsy patient advocate, blogger, content creator and the founder of The Epilepsy Network (TEN). Within this blog I talk about my experience with epilepsy, also providing tips, encouragement and motivation to live your best life while navigating epilepsy.

Facebook

Instagram

Which are YOU? 😊 Do you still drive or have yo Which are YOU? 😊 Do you still drive or have you made the decision not to do so any longer? I loved playing Tom Petty and Def Leppard. An 80’s girl. 😉 Tell me about a song you love listening to when on a trip! ⬇️ . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #raiseawarenessofepilepsy#tiffanytalksepilepsy
Tired of having seizure setbacks? I GET IT! 🥹 Tired of having seizure setbacks? I GET IT! 🥹 As someone who has a type of epilepsy that is difficult to manage, it can be tough when you come a long way only for a seizure to pop up out nowhere and have to start back over again. It can feel all sorts of things. Frustrating, disappointing, devastating. 🥺 You might even feel like throwing in the towel and giving up the fight. But I’m here to tell you that it is okay to feel these feelings and that you will rise again. We live with a condition that is unpredictable and uncontrollable. When a seizure happens, it’s not our fault. So if that thought ever sneaks in, brush it off. 🧹 As difficult as epilepsy is, QUIT is not in our vocabulary. We don’t know the meaning of such a word. There might be setbacks, but we always come back stronger than ever! 🙌🏼❤️‍🔥 . . #epilepsy #epilepsyawareness #chronicillnessadvocate #chronicillnessawarenes #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
I’ve been told this a handful of times throughou I’ve been told this a handful of times throughout the course of my 15 years of living with epilepsy. 🙈 Here’s the thing: I’m homebound. Sometimes all day. Sometimes multiple times a day. But it’s not what it sounds like. Sure, I enjoy my time to read, write and relax but it’s not a luxury. I’m not “living the life.” I’m not spending my 24 hours playing video games, binge watching shows and eating pizza. I’m fighting off cluster seizures, filling up pill containers for the week, resting after a bad seizure, and wrestling with insurance companies. I am wishing I could the one doing a grocery run, visit a clothing store, the salon or even just go for a joyride but I can’t because I don’t drive due to the fact that I run the risk of having a seizure. Some say “Why not just get an Uber?” Sure! I could but that gets costly over time. Family and friends aren’t always available but I can’t express enough how much I appreciate their help…and sometimes I just want to do things on my own. I want Tiffy Time. People might wish to be in my position, but once they know the real story, they might think twice. I very much miss being able to go out whenever I wanted/needed but now I have to find alternative means of transportation to avoid injury or myself and others. Sometimes it’s nice to be home and do the things I enjoy so very much and other times, I feel STUCK. But I don’t let that feeling steal away my joy. I invest my time making sure this household is running efficiently and taking care of my family. Whenever those feelings come poking, know you aren’t alone, warriors! Know there’s always joy and wins to be found even if you’re at home quite a lot. 🤍 . . #chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
I don’t miss the person I was before epilepsy en I don’t miss the person I was before epilepsy entered the picture. I’m glad that we’ve separated because I wouldn’t be the woman that I am today. ♥️ The person that was before carried dreams, hopes and aspirations but no real intention on pursuing them because she was timid and frightened to step out of her comfort zone. Frightened of the future and the perception of others. Lived by “What if…?” The person I was had no respect for her health and well-being. Living carefree. The “You only live once so why not?” mindset. A dangerous place to be. When epilepsy entered my life, it opened my eyes wide to just how fragile and fleeting life is. It gave me pause to reflect on the choices I was making. Being diagnosed with a chronic illness is a life-changer. It presents you with a fork in the road. Continue recklessly or responsibly. I wanted to live. And not simply float through life alive but LIVE and accomplish all the things my heart held inside. Committed and aligned, I progressed into the woman I was destined to be. I grew respect for myself, confidence, and courage despite swatting away relentless seizures. If you can imagine it, you CAN achieve it. If you can dream it, you CAN become it. 🙌🏼 There IS a light at the end of the tunnel. YOU GOT THIS! Sending all my love to you chronic warriors! 🫶🏻 . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #raiseawarenessofepilepsy#tiffanytalksepilepsy #photoshoot #photography
Today is National Coffee Day and I have an experie Today is National Coffee Day and I have an experience to share! ☕️ This is why we need more epilepsy awareness. 🤌🏼 . . #epilepsy #epilepsyawareness #chronicillnessadvocate #chronicillnessawarenes #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Oops! My bad! 🙈😅 Since being diagnosed with Oops! My bad! 🙈😅 Since being diagnosed with epilepsy, I’ve had to nail down my triggers and set boundaries in order to avoid triggering a seizure. Some of my boundaries are: 🙅🏻‍♀️ No alcohol 🙅🏻‍♀️ Limited caffeine 🙅🏻‍♀️ No staying up late 🙅🏻‍♀️ Avoid stressful situations I have in the past stepped over my own boundaries when I’m feeling good or a seizure-free streak is happening. Letting that “Just this once” temptation slip in. But doing this has cost me. Breaking my own rules has led to having a seizure and all I can do is kick myself in the pants for not doing the right thing. 🥴 Bottom line is, epilepsy is not something to toy with. It’s serious. Boundaries are there to keep us safe from harm or worse! Of course there are things we might have to say NO to or adjust but weigh the pros and cons. Plus, there are always plenty of awesome alternatives to things we might not be able to do. 👍🏼 I’m always tempted by myself and others to do certain things that go against my boundaries but I’d rather say no than have a seizure and wind up miserable on the couch or in the hospital. Also, always know that it is OKAY to say no. It doesn’t make you mean, rude or lame. It makes you responsible. 👏🏼 . . #epilepsy #epilepsyawareness #chronicillnessadvocate #chronicillnessawarenes #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
I’ve forgotten to take my meds before🙈😅 W I’ve forgotten to take my meds before🙈😅 We all have 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 we have a lot on our plates…career, kids and other obligations, our focus can accidentally get side tracked. Even brain fog can trip us up! 😶‍🌫️ A few medication reminders: ⏰ Smartphone alarm app ⏰ Epsy app ⏰ Medisafe app A few extra tips that help me are, I place my pill case in a clear unmissable spot such as my work desk. With my pill container being bright neon colored, it makes it extra easy to see and remember. 👍🏼 Also, my husband has his alarm synced with mine. Should I get side tracked or forget, he reminds me which I’m super thankful for. 🩷 Have you ever missed a dose of medication? Do you have a favorite method of remembering? Let’s talk about it in the comments! ⬇️ . . #epilepsy #epilepsyawareness #chronicillnessadvocate #chronicillnessawarenes #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
A metaphorical look at life with epilepsy 👀😹 A metaphorical look at life with epilepsy 👀😹 If anyone has mad dodgeball skills let me know! 🤣 Life is tough, but so are we! 😉❤️‍🔥 . . #epilepsy #epilepsyawareness #chronicillnessadvocate #chronicillnessawarenes #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel #dodgeball #justinlong
Has anyone ever told you that “You don’t look Has anyone ever told you that “You don’t look sick!” 👀 How did this make you feel and what was your response? This is something comes up on occasion with me. This got to me in two ways…. On one hand, perhaps it was some kind of a compliment? 🤷🏻‍♀️ On the other hand, was the legitimacy of my illness being put into question? 🤔 Thing is, epilepsy is more or less an invisible illness. It can’t be seen unless a person is actively having a seizure. I can still function like a healthy individual…just with a few adjustments. I have my pj days but on other days, I love rocking a good outfit and doing fun things within reason. What matters most is that I am BELIEVED when I say that I have epilepsy. Don’t let my appearance confuse you. I may not “look” sick but in reality, I have an illness that I battle every day called epilepsy. FYI epilepsy picked the wrong girl to fight. 😉🔥 . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #raiseawarenessofepilepsy#tiffanytalksepilepsy
Follow on Instagram

Twitter

Tweets by @TiffanyKairos

Recent Posts

  • How To Care For An Epilepsy Caregiver
  • 5 Seizure Triggers and How to Avoid Them
  • The Power of Epilepsy Support Groups

Trending Tags

Advocate (11) Awareness (17) brain fog (1) Condition (29) Coronavirus (1) Diagnosis (22) Epilepsy (40) Family (17) fitness (1) Friend (12) Gifts (1) God (11) Independence (1) Intimacy (1) Life (26) Love (8) Marriage (3) Medication (5) Mental Health (1) Motherhood (1) Seizure (23) Symptoms (3) Trigger (2)

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.

Facebook Twitter Instagram YouTube TikTok Pinterest LinkedIn
2023 © Rise Above Epilepsy