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    Breaking the Ice on Intimacy and Epilepsy

    September 25, 2019 / 2 Comments

    Yep, I’m going there. That awkward, not-often talked about subject coupled with epilepsy. When epilepsy and seizures decide to kill the mood for intimacy in a relationship. Sometimes we might…

    By Tiffany Kairos

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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.

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Today is January 26th. Promoted by @epilepsyallian Today is January 26th. Promoted by @epilepsyalliance! Highlighting the fact that 1 in 26 people will develop epilepsy in their lifetime! 

On this day, we celebrate all of the epilepsy warriors who are so much more than their diagnoses! 🫶🏻

I am 1 in 26! I am a warrior! ☝🏼

Say it with me in the comments! 
I AM 1 IN 26! I AM A WARRIOR! ☝🏼💜
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong #1in26 #1in26day #Iamawarrior
This is suspicious 🤨 Double tap if you’ve f This is suspicious 🤨 

Double tap if you’ve felt that way during a seizure-free/flare-free streak. ♥️

I feel both relieved (no seizures feels like a mini-vacation!) and a teeny bit suspicious during this time period because epilepsy is like that. It’s unpredictable. Seizures can happen at any time and it’s important to always be prepared. 

Last week, I shared with my husband and friends “You ever have a good seizure-free/flare-free streak going on and feel a bit paranoid?”

The very next day, I had a grand mal seizure in the bathroom and wound up inside my shower. 🫣 I mean, wow!

Given the fact that our illnesses are impulsive, a few things we can do to help ourselves is:

⚡️ Know our triggers
⚡️ Avoid what triggers us
⚡️ Tell close family and friends what to do and what to look for
⚡️ Journal symptoms and suspicious activity 

What’s something you’d add to the list above?

Tag a friend who needs to see this and share to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Have you ever felt this? 😵‍💫 Double tap i Have you ever felt this? 😵‍💫

Double tap if you experience one or more of these epilepsy symptoms! ♥️

Seizures can affect people in different ways, depending on which part of the brain is involved. 

In the video, I talked about a few different symptoms. These are also examples of ones I personally experience. 

Others could include:

⚡️ Anxiety
⚡️ Fear
⚡️ Unusual tastes and smells 
⚡️ Collapsing 

Are there others I’ve not mentioned? Drop them in the comment box! ⬇️

When these feelings wash over me, I know that I must jump into action and alert whoever is with me and/or get to a safe space to avoid injury. 

Tag a friend who needs to see this and share to your stories! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
This is not an easy job! 😵‍💫 Epilepsy tak This is not an easy job! 😵‍💫

Epilepsy takes a toll on us physically, mentally and emotionally each day! 

It’s draining and takes effort and willingness to live a fulfilling life despite the challenges and difficulties. 

Double tap if this is the truth!! ♥️

⚡️Surrounding ourselves with people that believe in us and can be our cheerleaders is nourishment. 

⚡️ How we speak to ourselves is important! Words matter. Especially the inner dialogue that we have within ourselves. It’s essential to coping with a chronic illness. 

⚡️ I’ve lived with epilepsy for almost 15 years. Throughout that time period, I’ve learned a lot  and work hard to keep my mindset tuned to a positive channel. 

If you’ve been looking for a community of people who ‘get it’…I’m so glad you’re here! The epilepsy community is a remarkable group of patients and family members that are dedicated to education, healing and growth! 🫶🏻

If you have an epilepsy-related question, don’t hesitate to send me a DM! I can’t wait to meet you. 

Tag a friend and share to your stories! 🤍
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Listen up! 😂 I’ve lived with epilepsy for al Listen up! 😂

I’ve lived with epilepsy for almost 15 years. It waltzed into my life unannounced and with no intentions of leaving. 

This condition hangs around and sometimes disrupts my day with seizures and other symptoms such as:

⚡️ Brain Fog
⚡️ Anxiety
⚡️ Déjà vu
⚡️ Staring off
⚡️ Head pressure/Headaches

Causing me to have to cancel plans or reschedule.

Epilepsy is something that I didn’t choose, it’s outside of my control, and I’m bringing awareness to it. 

Double tap if you raise awareness of your chronic illness! ♥️

Warriors, if you could confront your illness what one power message would you give it?

I’ll start: Epilepsy, you may be IN my life but you don’t OWN my life! ✊🏼🔥

Tag a friend who needs to see this and share to your stories!
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Learning seizure first aid can be the difference i Learning seizure first aid can be the difference in saving someone’s life. 

Keep in mind that not all seizures look the same but if met with such a situation, you want to know what to do. 

Swipe through these important tips! ☝🏼

Help keep awareness going!
Tag a friend and share to your stories 🫶🏻
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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 #TiffanyTalksEpilepsy
Spill the tea Doctor!! ☕️ Double tap if this Spill the tea Doctor!! ☕️

Double tap if this is you too!

When it comes to getting tests results back, I’m on it quick.

Whether it be:

👩🏻‍⚕️ In-Person
👩🏻‍⚕️ Virtual visit
👩🏻‍⚕️ MyChart

Not gonna lie, I can be a bit impatient sometimes because I don’t want to struggle with potential fears or doubts that might try to weasel their way in. Plus, I want to get started on my homework of better understanding my condition and explore options of managing my epilepsy. 

When it comes to test results, it’s a good idea to always:

⚡️ Come prepared with a list of questions
⚡️ Bring a notepad with you
⚡️ Bring a trusted family member or friend 

Are you a question asker or an answer getter? Do you look for explanations on your own or turn to others?

It’s good to be BOTH, really! Because you’re being proactive in your healthcare. 

You’re owning your health. This means you and your doctor are partners and are collaborating to come up with a treatment plan that best fits you.

Tag a friend who needs to see this! And don’t forget to share to your stories! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
You don't have to apologize for feeling unwell or You don't have to apologize for feeling unwell or expressing emotions, cancelling plans or having a difference of opinion. 👏🏼

Double tap if this is you too and don't forget to share to stories! 🫶🏼
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy #tiffanytalksepilepsy #spooniestrong
Hi there new friends! 🙂 I’m seeing so many n Hi there new friends! 🙂

I’m seeing so many new faces here, so what better time to reintroduce myself!!

Rather than the norm, I’ll unpack a few fun facts about me!! 😃

PS: 🙃I am so happy you’re here! 

🪔I’m Tiffany, named after the decorative stained glass lamps called “Tiffany Lamps”
🌳I’m 37 & live with my husband and 2 FurBabies in Ohio (I’d like to think of it as a warm and welcoming state) 
⚡️I was diagnosed with epilepsy in 2008 and like many others doctors don’t know the cause of my seizures
💻 I created a blog and online community to tell my story and further the awareness of epilepsy having NO idea that it would guide me to where I am today! I’ve now been at this for over a decade and I enjoy every second of it! 
📚I’m an unapologetic bookworm. I love to read! One of my most favorite things! 
🎨 I’m an artist - I create string art, wood art and origami. It’s rewarding and relaxing 
🏋🏻‍♂️ I love health and fitness! Since my diagnosis, I’ve made it a top priority in my life - Creating a home gym and working out 5 days a week
🍃 Nature has my heart and I feel great solace when I’m hiking or watching a spectacular sunset.
🎶 I love. love. love music and not a day goes by where I’m not playing it, singing it, dancing to it or all of it. I’m an 80’s girl at heart but also particularly fond of classical and jazz. Also, I married a musician which is pretty cool tbh! 
✈️ I’m a globetrotter. I love to travel. Have been out of the country twice and really neat places right here in the US of A! I can’t wait to do more!!
🍝 I love Italian food even though I’m mostly Romanian!
🌅 Sunset is my favorite time of day!
🥸 I’m a big goofball! I make silly faces and pull pranks! I love to laugh until I cry tears and fall out of chairs. 

Voila! There we go! There’s a peek into my world. Do we have any of these in common? Which one out of this list was a personal fav? 😺

Now it’s your turn! Tell me something about YOU! ⬇️
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong
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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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