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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, I’m Tiffany Kairos. I am an epilepsy blogger, advocate and co-founder of the The Epilepsy Network (TEN). Within this blog you will find my journey with epilepsy, along with inspiration and motivation for living with this condition.

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When you live with a chronic illness it can feel w When you live with a chronic illness it can feel wrong to put yourself first. It can sometimes make you feel guilty. But the reality is our health is one of the most important components of our lives, so prioritizing what we need is super important! Living with epilepsy, I’ve come to realize that the decisions I make matter and can either help or hurt so I’ve got to choose wisely. Regardless of what others might think or say, good or bad, it’s not worth gambling on our health to avoid upsetting someone. Warriors, if you’ve been struggling with some guilt lately today is the day to RELEASE IT. 🧡 Remember we are ALLOWED to say what we need to say, do what we need to do, and feel how we feel WITHOUT guilt! 💛 I am with you. This community is with you now and always. . . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
Our voices have power! They have the power to spar Our voices have power! They have the power to spark conversation and create change! Epilepsy has been stigmatized for over 4,000 years and is still in existence to this very day. Some people are regarded as “being possessed”… “unintelligent”…or even “emotionally unstable”. It took time for me to build the courage to talk about my epilepsy with family and friends. I didn’t want to be thought less of or treated any different. I hid a lot of my emotions or symptoms. How does this help us? It doesn’t. In fact, quite the opposite because if we don’t talk about it, any misconceptions in the air are still there. We’re still hurting while they’re still assuming incorrectly. Of course, others could never fully grasp what it is we go through but telling our story…and educating nullifies stigmas on the spot. It may be uncomfortable at first but the more and more you use your voice, the less power our illness has over us. And as an added bonus, we may very well be inspiring someone in some way on their journey. 💛 Where are you at right now? Are you currently comfortably talking about your journey? Still working up the courage? No matter where you are, just know that I am sooo proud of you and I believe in you! So does this entire chronic illness community right here! You’ve got countless supporters in your corner! 🧡 . . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
Candidly speaking - I used to feel self conscious Candidly speaking - I used to feel self conscious about my appearance. Most of it stemmed back to my childhood bullying days when the children would mock me about my hair, skin tone and clothing. Fast forward after my diagnosis, I was timid about what others might think of my appearance. Beginning new medications would either cause me to significantly gain weight or lose weight. I would have sleepless nights from crying…revealing baggy eyes. Years later, I prepared for SEEG surgery and had to shave my head. I was a tiny bit self conscious because I’d never lost all of my hair before. But I grew to absolutely love it! And with the support of family and friends my self consciousness stood rock solid.❤️ Warriors, I want you to know that you are BEAUTIFUL, you are a true beauty just the way you are! I want you to look at yourself in the mirror and tell yourself, "I am beautiful" or "I love myself." 💛 . . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
To figure out if you have epilepsy and what type y To figure out if you have epilepsy and what type you have, your doctor will do some or all of these tests: 🧠EEG. This is the most common test. Your doctor places sensors on your scalp that record electrical activity in your brain. If they see changes in your normal brain wave pattern, that’s a symptom. 🧠Computerized tomography (CT) scan. It uses X-rays to create images of your brain. This can help your doctor rule out other seizure causes, like tumors, bleeding, and cysts. 🧠 Blood tests. They also help discount other reasons for seizures, like genetic conditions or infections. 🧠MRI. It lets your doctor see the structure of your brain. It can show damaged tissue that leads to seizures. For the test, you’ll lie on a table inside the MRI machine, which is like a tunnel. The scanner takes pictures of the inside of your head. 🧠 Functional MRI (fMRI). This type of MRI shows which part of your brain uses more oxygen when you speak, move, or do certain tasks. That helps your doctor avoid those areas if they need to operate on your brain. 🧠 PET scans use a small amount of low-dose radioactive material that's injected into a vein to help visualize metabolic activity of the brain and detect abnormalities. 🧠SPECT. This two-part test helps your doctor figure out where seizures start in your brain. 🧠 Neuropsychological tests. The doctor will test your speech, thinking, and memory skills to see if those areas of your brain have been affected by seizures. Epilepsy can be difficult to diagnose and misdiagnosis is common. 🤦🏻‍♀️This is why these tests are so helpful assuring you get an accurate diagnosis. 🤓 Mention these to your doctor if you’re seeking out a diagnosis. 💛 Have YOU had any of these tests performed? I’ve undergone them all and THEN some! 😅 Tell me about your experience! 🤍 . . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #purplestrong #spooniestrong #furtherawareness
Candidly speaking, sometimes I get frustrated with Candidly speaking, sometimes I get frustrated with my seizures. Depending on when they occur in the middle of what I’m doing, what I’m about to do or planning. There’s never any telling when one will arrive. They show up anytime. Do you get frustrated sometimes? You aren’t alone. We all feel this way sometimes! But what I’ve come to learn and make it a continual mission is that not getting frustrated takes practice, patience and perseverance. Choosing to overcome epilepsy with an optimistic outlook is the best path to take. Sometimes we might fall to get to that path but that’s ok! Get back up, dust off and be on your way. Warriors, when a seizure (or even a flare-up) appears speak out loud or internally, “You have no power over me. Do what you must do and I will continue to do what I want to do. This is my life.” 💛 . . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
#epilepsy #epilepsyawareness #fearlesslyfightingep #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
Having a chronic illness doesn't make you any less Having a chronic illness doesn't make you any less lovable or worthy. You've got your whole life ahead of you, and you just have to wait to see what empowering opportunities lie in store. . . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness #art #portrait #selfportrait
When I learned that I would not be able to conceiv When I learned that I would not be able to conceive children because of my frequent unpredictable seizures and the amount of medication I was assigned, my heart was broken. It took time to grieve. In that timespan, I learned and grew so much as a human being and as a woman. I found solace in knowing that every woman’s journey is unique. Some have a much different calling but can still be a motherly figure in other ways. In one hand, epilepsy revealed my calling to be an epilepsy advocate. In the other, I became a very proud Fur-Mom to two beautiful kitties - Indie and Tommi! When anyone asks if I have children, I say YES. Yes I do. Maybe not like you, but it’s true. They are the lights of my life. Are you a Fur-Mom? Tell me about your sweetheart! 🐶🐱 . . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness #mothersday #happymothersday #furmom
Guilty. I’d resorted to using this phrase to sav Guilty. I’d resorted to using this phrase to save myself from having to avoid receiving pity from others if I weren’t feeling my best physically/emotionally or unsolicited advice on how to “cure” my epilepsy. So many living with chronic illness have used the phrase ‘I’m fine’ before too. It was exhausting to try to press down any painful feelings that were tangled up within me or put on a smile and muster up laughter while my head throbbed from just having had a seizure or a passing aura. I’m the type of person who is more concerned about others before myself. I’ve always been that way. I never wanted to stir up trouble or disrupt a good moment. But the reality of it is, we live with a chronic illness. Seizures and flare ups that will come knocking whenever and wherever they please. We work tirelessly each and every day, battling back symptoms and to manage our health. Most healthy humans don’t see or understand this. Trying to hide who we are and how we’re feeling is raising the difficulty level of the battle that we’re in. I gave up the ‘I’m fine’ phrases for the actual truth and a kind request not to worry, or feel sorry. If I need to lie down or go, I go. I don’t push forward miserably and I expect others to respect that. Warriors, exchange your ‘I’m fine” responses today. You’ll feel so much better. As a matter of fact, you’ll feel empowered. Take control of your life. Show your chronic illness who is in charge. . . . #epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness
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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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