#ihateepilepsy

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Sometimes when your favorite superhero needs a lil cheering up or motivation to know he’s still got his super powers you give in and give him a special treat early! JJ sure loves his superhero’s but what most don’t know is his obsession over “billions” -villains! He loves the bad guys!! We passed by hot topic awhile back and he spied a #venom mask and really wanted it, told him to wait it out.. today the hubby n me decided to give him some motivation to get out of bed.. there’s some days that are just really hard as a parent to a child with epilepsy/autism. Some days really wear on your soul and spirit... some days are just soo tough you wonder how you will make it thru to tomorrow.. it’s not always easy being strong.. tomorrow we see his Neurologist and there’s gonna be a few changes in regards to medications. This can go either really well or really bad. Either way I’m prepared. Having a child with special needs is a rollercoaster of emotions... one minute you can take on the world and the next all hell breaks loose and your defeated and discouraged. Today a lot of people reached out to me, I can’t thank you enough. All of you! I mean that, When JJ isn’t doing well I crawl into this dark place and it’s not always easy to get out of it.. so from the bottom of my heart thank u for keeping me strong and for helping me keep my faith! <3 #jjstrong #mysuperhero #lennoxgastautsyndrome #epilepsywarrior #ihateepilepsy
I shared my blog yesterday, and this morning I felt a spiritual attack in a physical way occurred. However, I have no fear on my path as long as I know I have prayed for God to lead me. Littlehouseinthehill.com #followhim #jesussaves #nottodaysatan #ihateepilepsy
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I SURVIVED ANOTHER SEIZURE! (yesterday) 🔸️Body is soar 🔸️headache is lighter that yesterday by now 🔸️still trying to recap the event like every single time 😑....I cant never help it 🔸️ I feel embarrassed for my coworkers that saw me having a seizure 🔸️I feel bad my brother had to leave work earlier to pick me up . . . This fillings are the same feelings I always have after a seizure...but still wanted to share . . Have to be thenksful I'm alive, I survived, and that this time happened around people i know and where prepared to react 🙏(i had them mentally prepared) . . 🐶notice how Gordo didnt leave my side after I got home, he knew something was wrong, gave me 1000 sloppy kisses. Went on top of me another 1000 times lol! My crazy uncontrollable dog that doesn't know how to show affection calmly 😂 He will learn with time to me gentle! #featureseizurealertdog #seizurelife #EPILEPSYSUCKS #epilepsyawarness #teamxime #epilepsy #ihateepilepsy #ihatebeingepileptic #ihaveseizures
She's just too much I asked her mami you need love she shakes her head yes so I gave her a big hug and kisses and she got so happy , there are most days that no matter what i do i feel so sad because her dementia rolls her eyes at me gives me dirty looks and ignores me and wont eat or drink , But the moment I give her mad love hugs and kisses she feels happy eats drinks and talks , so here I am with her giving her love ❤❤🙏🙏 #positivevibes #schoolflow #pride #happydays #love #blessed #fitmom #justus3 #30day #Ihatedementia #ihateepilepsy #instalife #strongwoman #fitness #laughter #world #familyfirst #thankful #fitfam #faith #patience #believeinyourself #dreamer #poet #myworld #addictedtomusic #animallover #singlemom #addictedtomykids #mymom
I reminded my mom that I love her very much and that because she is growing older does not mean I love her less it means I love her more and more each day my heart grows fonder i love my queen #positivevibes #longdays #pride #happy #love #blessed #fitmom #justme #30day #selfiequeen #instalife #strongwoman #fitness #laughter #world #bronx #thankful #fitfam #faith #patience #believeinyourself #dreamer #poet #myworld #addictedtomusic #ihateepilepsy #animallover #singlemom #mykidsrmylife #Ihatedementia
So tonight was better then this afternoon, she ate and had her dessert and Gatorade gave her the meds and now relaxi g enjoying the stories together, I hate dementia I hate epilepsy I love my Queen ❤🙏 #writer #strong #poet #God #poetry #dark #lost #blessed #toxicpoet #ny #bx #writingflow #poetryismylife #darkpoet #humansofjoy #addictedtomusic #life   #happy #familyfirst #getfit #insagood #ihateepilepsy #darksoul #fitfam #love #mykidsrmylife #ihatedementia #thelordsday
My human brother had a seizure last night I’ve been by his side since. I’m learning to lick his face after to help him start breathing again. #humanlove #companion #petsuport #petlove #doglove #loyal #disability #epilepsy #ihateepilepsy #seizuressuck #dog #dogsofinstagram #dogstagram #pup #puppiesofinstagram #pomchi #australia #nsw #newcastlesu
Sun-kissed blonde hair. #jealous #hairgoals
Today IM 1 MONTH SEIZURE FREE!!!!!!! I'm so happy! I had a terrible past few weeks this month after that seizure. Last night was the first night I actually had an entire night (7hrs) sleep without waking up once!!!! It feels good to be able to sleep and dont have migraine, didnt hear any noises in my head during the night and yea IM 1 MONTH SEIZURE FREE!!! Lets this countdown starts again, for a forever life seizure free! 😁🙌🏼💜 #teamxime #1monthseizurefree #ihateepilepsy
Luca has a tough start to the day 😢 with a nasty seizure. #ihateepilepsy #notfair #imjustadog #ilovemygsp #ilovemydog
Going through some old pictures on my phone and found this one from 4 months ago. He can't sleep like this anymore 😢 his hands and arms get so stiff he doesn't really stay comfortable with his hand on his face. He used to try eat his hands and now he can't do that anymore. I can still remember the exact seizure and day that I feel wiped out that ability. Then he has to try learn how to do it all over again. It's been three months and he still hasn't been able to bring his hands up to his face and his mouth doesn't do anything anymore but we try every day to build some skills and we'll keep trying. Alhamdellah #epilepsy #epilepsyawareness #seizures #arxgene #genetic #mutation #arxgene #blessed #makedua #love #tonicclonicseizures #ihateepilepsy #myworld #rare #babyboy #love #mybabyboy #infantilespasms #myclonicseizures #myclonic #myclonicjerks #allahummabarik #solucky
Doesn’t he look so ok?He wasn’t tho he ended up back in hospital again this day 😢 #IHateEpilepsy
⚠️WARNING⚠️ HE IS HAVING A SEIZURE THAT LAST ONLY A FEW SECONDS ONE OF MANY HE HAS THROUGHOUT A GOOD DAY. SHORT ONES ARE BETTER THAN LONG ONES. THIS IS EPILEPSY Yasin trying to enjoy some music and relaxing time after a feed but always gets disrupted by this rare cruel condition, with no cure and hardly any research, all we can do is hold our breath and wait. We have at this point exhausted every option. The doctors have no answers or proper treatment, their is little to no knowledge about this epileptic disease. I'm sorry for posting a horrible video of my beautiful baby Yasin but this is what we live with. No one wants to believe that their are babies having seizures and they're suffering and no one can help them. But if we spread awareness about this then maybe one day there will be a solution, maybe not for Yasin but maybe another baby will have a better chance. Why are rare conditions not important enough? How much more can he take? • • • • • #tubie #epilepsy #epilepsyawareness #awareness #palliativecare #baby #myboy #love #family #lifewithepilepsy #seizures #tonicclonicseizures #arxgene #genetic #mutation #spreadawareness #share #ourstory #instababies #keto #lasthope #tubefeeding #ihateepilepsy #help #allah #makedua #jeansforgenesau #jeansforgenes #ketogenicdiet
One week ago today at this time I was picking my baby boy up from the ICU after he had over 30 seizures in less than 24 hours. I was scared we were going to have to say goodbye to my ❤️. One week later he’s sound on my lap and I couldn’t be happier. I have my boy back and let all pray he stays healthy and no more seizures. #ihateepilepsy It’s been an awful week for all of us and will stay positive. Hug ur fur babies! #grateful #myboy #love #frenchie #frenchbulldog #frenchiesofinstagram #ilovehim #myrock
New Milestone! Three months, seizure free!!! #strong #ihateepilepsy #iamherbiggestfan #epilepsywarrior #epilepsydoesnthaveme
Eye is finally open #ihateepilepsy #ihatemedicine
Emily made is 6 months & 6 days without a seizure. Got a text from Dad saying she just had a seizure at the park. 😭 Picture because it's my new favorite picture of her. #IHateEpilepsy #pcdh19epilepsy #epilepsyworrior
Why cant they figure it out... Why cant the seizures be controlled... He has breakthroughs and all they do is increase medicine... I hate watching my child go through this.. Not living a normal life.. He doesn't sleep in his new bed I got him, he sleeps in my room because the worry of him having a seizure in his sleep and choking is locked into my head... I wish and pray everyday that I can take this awful syndrome from him.. I wish everyday he would wake up and not have them anymore.. Alot of whys... A Lot of what ifs.. Ill stand by his side no.mstter what happens 💜💜💜 #ihateepilepsy #epilepsysucks #doosesyndrome
Update: Talked to my neurologist he increased my medication, and told me to be careful driving. He understands I’m under a lot of stress since I’m moving and starting a new job 🙏🏻❤️ thank you everyone for reaching out • • • Had my first major seizure since my diagnosis a week ago, and having my medication increased a month ago (before I knew I have seizures but my neurologist said I had a seizure in his office). It happened when I was driving. Thank god my brain was coherent enough to drive safely but I have no memory of me driving for about 30 seconds to a minute. I ended up on a street a couple blocks away from my house. When I came to I was disoriented. When I finally got home I realized it was one of my absence seizures. I feel helpless. I had no warning. What if someone got hurt? What if I got hurt? Will they take my license? How will I get to work? Will I lose my job? Should I tell my doctor? I want today to be over. I wish today didn’t happen. I’m scared it will happen again on a road I don’t drive everyday. I’m scared I’ll hurt someone. I wish I didn’t have seizures. #ihatethis #ihateepilepsy #epilepsy #absenceseizure #absentseizures #seizure #chronicillness #invisibleillness #fibromyalgia #osteoarthritis #spondylosis #scared
Chelsea is home and resting peacefully! She’s a trooper!!💜💕🎉#weloveyoucbear #feelbettersoon #sweetgirl #ihateepilepsy
Just because I haven’t dropped to floor shaking, doesn’t mean I haven’t had a seizure, there are loads of types of epilepsy, not just flashy lights n drop to the floor n shake, epilepsy needs more awareness💜💜 #epilepsyawareness #epilepsy #epilepsywarrior #ihateepilepsy #epilepsysucks #epilepsyfighter #epilepsysupport #epilepsywarriors #epilepsyproblems
Finally my 3 years is up!!!!!! Being monitored by DMV & my neurologist for 3 yrs from epilepsy I am clear to drive without having to contact DMV every two months along with all the Neuro visits 😄 So glad that's over !! Been doing good seizure wise so I am very pleased 😍 #imfree #ballandchain #freeatlast #epilepsysucks #epilepsy #seizuredisorder #grandmalseizure #ihateepilepsy #dmv #termination #nj #terminated #byefelicia #bestmailever #camehometothis #epilepsyjourney #divisionofmotorvehicles #jersey #newjersey #instalike #instagood #instagram
Hi everyone, if you could please send loving positive thoughts and prayers for Cbear. She’s not doing well and we are hoping and praying she pulls through today!! 😓🐶💕🙏🏼❤️ #ihateepilepsy #weloveyoucbear
Today, less than 3 months until I turn 27, it hit me; I have now outlived my big brother. He passed away about 3 and half months before his 27th birthday. I thought back to my childhood, running around my dad’s house with him; I didn’t know that I’d never get to see him be a father. A lot of my day revolves around being the ref or the peacemaker between my kids. That was Hec. In my own house, I was dubbed the peacemaker but Hector was on a whole other level. It’s not just that he couldn’t stand the fighting; he didn’t understand it. He couldn’t understand why people fought. It’s like God made him without that ability. Now that I’m an adult I realize the quality I thought annoying as a child was such a blessing. And not just to me but to anyone who knew him. I was thinking today, wow I wish he was here to not only stop the fighting between my two but to show them how ridiculous it is. I feel like I would be taught something too. Today, my heart hurts extra. I miss him always but especially days like this when I wish I could talk to him or hug him or make him laugh or learn from him. The last time I saw him was the day after I found out I was pregnant with my 1st. I wish I had told him in person that day. I was too scared to because I didn’t think he could keep it quiet (he so couldn’t 😂) Seizures, epilepsy, I hate you. Hector, I love you more than you know❤️
I was just going through my pictures from yesterday and realised that I actually caught the start of one of Olivia’s absence in picture 💔 The blank look on her face and the sudden pause in what she was doing. She was totally fine once it passed, but those seconds always feel like an eternity, trying to snap her out of it and wondering if she will go into a full blown seizure until she starts to respond again 💔 #ihateepilepsy #epilepsysucks #epilepsywarrior #mygirl #myinspiration #childhoodepilepsy
I feel like death. I had seizure auras all day yesterday, had a minor one last night. Had a horrific migraine along with vomiting and my entire body is hurting so bad. I hate it. I hate it so much. ☹☹☹ #epilepsyawareness #ihateepilepsy #seizuressuck
You know I know that hate is a strong word but today, today I HATE epilepsy. I hate that in just a moment my beautiful little girl who filled our morning and our whole church with smiles and bursts of contagious laughter was snatched away to a exhausted, limp, empty shell of my beautiful girl. It's not fair, it's just not. I pray that epilepsy would just leave her alone, just stop stealing my girl one small piece at a time. No child should ever have to go through this, and no parent should ever have to feel so helpless watching their child suffer. I try everyday to focus on the joy, love and life she brings with her in every moment, but today I HATE EPILEPSY. #seizuressuck #ihateepilepsy #leaveheralone #itsnotfair #mygirl #epilepsywarrior #epilepsyhero #seizuremom #epilepsymom #aicardistrong #aicardisyndrome #aicardi #shesjustakid #prayers #nokidshouldhavetosuffer #prayforhealing #cureepilepsy #intractibleepilepsy #stop #stopstealinghersmile #shesstillmyjoy
#fuckepilepsy My daughter Kennedy has had epilepsy since she was 3 . On Feb 27th she was admitted to hospital with uncontrolled seizures. While there we found she has blockage in her heart. We have to wait for insurance to send us to children hospital in LA for further treatment. She is at home with her brother myself an new furbaby. She is fighter . Keep her in your prayers . #epilepsy #ihateepilepsy #seizures #lovemykids #prayers #nevergiveup
Had a long appointment with another neurologist who works with my current neurologist. So that would be my 14th neurologist(I think) since 1999. Strangely enough, she was interested in listening to my 10 minute version of my epilepsy story then she followed it up with a long conversation about my life as an epileptic. Anyway, they decided to up my dosage on lamotrigine(lamictal) for this year and next year to reduce the levetiracetem(keppra) in 2019. Ya, takes that long for my body to adjust to just a small increase of 50mg. She also wanted me to take an anti-depressant and see a psychiatrist. I’m quite skeptical about taking an anti-depressant drug so I said no to that, and we are actually going backwards to my plan which was to get my dosage down to the bare minimum because I’m sick of taking so many pills everyday. Anyway I’m also seeing my epilepsy specialist and will arrange for an EEG and MRI scan. #Epilepsy #EpilepsySucks #EpilepsyAwareness #DepressionAwareness #Stigma #IHateEpilepsy #EpilepsyRuinedMyLife
#MicahsMom #EpilepsySucks #epilepsyawareness #ihateEpilepsy #IrockPurple #findACure One day we were a normal family and one night it all changed. I don't understand the process but I definitely trust God's plan. It won't always be like this💜
Beyond tired cant sleep caz I won't sleep to nite seizures drain any energy u have and poof its gone basically a walking zombie #seizuressuck #purplewarrior #ihateepilepsy
When you've downed a coffee and pray that you didn't mix up the decaf and the caffeinated one with your daughter. #coffeeproblems #coffee #caffeine #ihateepilepsy #epilepsy #epilepsymonitoringunit #epilepsyawareness #epilepsywarrior #epilepsysucks #brain #tangledwires #youneverstopcaringaboutyourchildren
Her face is priceless! She’s comfortable taking 3 steps with no support. #ihateepilepsy #hydrocephalus #learning #walk #macedonia #kayleestrong 🌸
So had my make up done for New Years Eve ready for a meal and cocktails with my baby but then before I even get my shoes on to take selfies EPILEPSY strikes 😭😑😡. This time I had no triggers I don’t even remember feeling odd, so I fell as I went into my seizure. During my seizure I bite my tongue so badly blood went over my face which I began to choke on and then went into another seizure busting my lip and splitting my nail bed 😪. Thank god I had my boyfriend and Nan by my side , this is the worst seizure I have had yet and couldn’t walk afterwards where my muscles hurt. Did not expect 2017 to end this way #epilepsy #epilepsywarrior #epilepsyawareness #epilepsysupport #epilepsyfighter #epilepsylife #seizures #seizuressuck #bustedlip #newyearseve #ihateepilepsy #epilepsyaction #epilepsyproblems
“You may not be able to control every situation and it’s outcome, but you can control your attitude and how you deal with it.” - my 2017 motto was basically this. Watching my son struggle with epilepsy this past year has been heart wrenching. Not being able to control it myself or have any answers has so difficult. One thing I was able to control was my attitude. Sure there was lots, and I mean lots, of tears, but I have to be positive. Not only for me to get through the day, but for Ryan. He needed to see me strong for him. Epilepsy isn’t going to kick our butt this year, we are going to kick it’s butt! @lularoe #lularoesarah #lularoeirma #kickass #kickepilepsysbutt #ihateepilepsy #mysonissostrong #strongmomma #wahm #sahm #epilepsy #epilepsyawareness #epilepsysucks #epilepsywarrior #epilepsylife #stripes #fashion #feathers #featherleggings #minthair #turquoisehair #overtonepastelteal @overtonecolor #bossbabe #ootd
I've seized the shit out of this day, so far I'm 8 seizures in, 1 giant lump on the back of my head, bent glasses, a carpet burn on my face and a bruised forehead... However, that aside this isn't a sad post, it just is what it is. #epilepsy #epilepsyawareness #epilepsywarrior #epilepsyfamily #momswithepilepsy #seizuressuck #seizure #epilepsysucks #ihateepilepsy #purple #awareness #seizetheday #fuckepilepsy #weneedacure #clusterseizures #fml #wtf #health #chronicillness #invisibleillness
What is life when you know it will end? How can you stand to love every second knowing it’s borrowed time.. i can’t believe we are where we are. I don’t want to imagine a world without these babies.. lord knows I’m not ready to live in that world.. it’s a rough night and i just really really really don’t want this to be their reality . I hate epilepsy and it must hate me if it wants to claim the lives of the 2 most precious, most innocent children I’ve ever met. #ihateepilepsy #kcnt1 #mmpsi
#Repost @tj_tellem (@get_repost ) ・・・ Tj had 12 seizures in 15 mins but manages to bounce back to a happy kid. His brain is exhausted but how can he sleep when it it’s constantly firing off. Seizures are hard to watch but we gonna keep praying this too shall past. Tomorrow he has a appt let see what changes I recorded 15 mins to show the doctor ...#Epilepsygang #LGSSucks #ihateepilepsy #survivor #warriorfor christ #Godgotthis
Tj had 12 seizures in 15 mins but manages to bounce back to a happy kid. His brain is exhausted but how can he sleep when it it’s constantly firing off. Seizures are hard to watch but we gonna keep praying this too shall past. Tomorrow he has a appt let see what changes I recorded 15 mins to show the doctor ...#Epilepsygang #LGSSucks #ihateepilepsy #survivor #warriorfor christ #Godgotthis
Not how I planned on starting my day ... Woke up to Richard by my side and me laying on our bedroom floor. Last thing I remember was my alarm going off (an hour earlier) so we assume I got up to wake Richard and O up (he was in his room last night again 😒 a whole other story). My head hurts where I banged it and I’ve got a migraine. My wrist is hurting and my right hand side is in sheer agony. Now lying in bed feeling sorry for myself and guilty for giving the boys a scare. I’m physically and emotionally drained of energy and feel like I’ve had a month long flu I ache so much. Oscar was the one who found me and went running back into his room where Richard was getting clothes for him shouting ‘mummy gone! Nee Naw!’ What child should have such responsibility at 2!! He is such a clever, caring little boy and I’m so proud of how much he knows already. Even though I wish he didn’t have to, I know he will always be there to help me and know what to do. 😍 😭😭😭😭 Epilepsy you’re cold hearted and ruin so many lives, of those who suffer and their friends and families. . . . . . . . #epilepsy #epilepsysucks #epilepsywarrior #seizurequeen #seizuressuck #ihateepilepsy #pregnantwithepilepsy #epilepsymama #soproud #knowinghowtolookaftermummy #knowingwhattodo #cleverboy
It's been a bad day for Tim today #poorlyboy # stopped breathing whilst having a seizure #Ihateepilepsy #
Every 4:00 someone is diagnosed with Epilepsy in the U.S. #epilepsyawareness #ihateepilepsy #i ❤️mydaughter
Do you ....cuz I always will !! Don't let epilepsy get in the way of your dream/dreams !! #GREAT #IHATEEPILEPSY #ENDEPILEPSY #💜💜💜💜#🌟🌟🌟🌟🌟#DREAMS #LUVQUOTE #😉😉😉😉ISUPPORTEPILEPSY#DOYOUSUPPORTEPILEPSY #👏👏👏👏
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