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nothing like doctors gaslighting you 🙃🙃 so thankful for how far God has brought me these last few years. #chiari #chiarimalformation #brainsurgery #brainsurgerysurvivor #chronicillness #chiariawareness #fibromyalgia #potssyndrome #spoonie
nothing like doctors gaslighting you 🙃🙃 so thankful for how far God has brought me these last few years. #chiari #chiarimalformation #brainsurgery #brainsurgerysurvivor #chronicillness #chiariawareness #fibromyalgia #potssyndrome #spoonie
A peak into chiari malformation! Leave a “💜” if you want to hear more about my experiences/lessons with chiari malformation. #chiarimalformation #chiariwarrior #chiariawareness #chiaristrong
A peak into chiari malformation! Leave a “💜” if you want to hear more about my experiences/lessons with chiari malformation. #chiarimalformation #chiariwarrior #chiariawareness #chiaristrong
PART 3 CHIARI MALFORMATION I (CMI) Banyak yang nanya, “Chiari Malformation itu apa dan kaya gimana sih mi? Aku liat kamu baik2 aja” Iya fisik ku 100% baik2 aja, tapi di dalem kepalaku engga. Chiari malformation adalah suatu kondisi ketika jaringan otak meluas ke kanal tulang belakang. Yang lebih dimengerti nya adalah bagian bawah otak kecil (serebelum) aku turun 2.5cm ke saluran tulang belakang leher. Kenapa otak kecilnya bisa turun kebawah? Ini terjadi karena tulang tengkorak belakang yang terlalu kecil, sehingga otak kecil terdorong ke bawah yang menyebabkan tekanan dan penumpukan cairan pada otak kecil (serebelum). Penyebab tadi bisa menimbulkan gejala, gejala yang aku rasain yaitu hilang nya keseimbangan saat berjalan, sakit di leher belakang, masalah pada pengelihatan, pengelihatan kabur, pengelihatan ganda, nistagmus, dan nyeri kepala / migrain kronis. Biasa nya kalo migrain nya kambuh, sembuh nya 2 minggu kemudian, dan yaaa itu terjadi dari tahun 2017 sampe 2023 awal kemarin.. Lanjut part 4??? #chiarimalformation #chiariawareness #chiariwarrior #brainsurgery
PART 3 CHIARI MALFORMATION I (CMI) Banyak yang nanya, “Chiari Malformation itu apa dan kaya gimana sih mi? Aku liat kamu baik2 aja” Iya fisik ku 100% baik2 aja, tapi di dalem kepalaku engga. Chiari malformation adalah suatu kondisi ketika jaringan otak meluas ke kanal tulang belakang. Yang lebih dimengerti nya adalah bagian bawah otak kecil (serebelum) aku turun 2.5cm ke saluran tulang belakang leher. Kenapa otak kecilnya bisa turun kebawah? Ini terjadi karena tulang tengkorak belakang yang terlalu kecil, sehingga otak kecil terdorong ke bawah yang menyebabkan tekanan dan penumpukan cairan pada otak kecil (serebelum). Penyebab tadi bisa menimbulkan gejala, gejala yang aku rasain yaitu hilang nya keseimbangan saat berjalan, sakit di leher belakang, masalah pada pengelihatan, pengelihatan kabur, pengelihatan ganda, nistagmus, dan nyeri kepala / migrain kronis. Biasa nya kalo migrain nya kambuh, sembuh nya 2 minggu kemudian, dan yaaa itu terjadi dari tahun 2017 sampe 2023 awal kemarin.. Lanjut part 4??? #chiarimalformation #chiariawareness #chiariwarrior #brainsurgery
Is Chiari malformation life-threatening? 🧠 Let’s debunk the myths and shed light on the facts! 💡 Despite its complexities, Chiari malformation isn’t always a direct threat to life, but understanding its symptoms, risks, and management is key. Hear from Dr. Veznedaroglu 👨‍⚕️ and explore the truth behind this misunderstood condition. #ChiariAwareness #FactVsMyth #HealthJourney #ChiariAwareness #ChiariWarrior #ChiariJourney #ChiariCommunity #ChiariStrong #ChiariFighter #ChiariSurgery #ChiariSupport #LivingWithChiari #BrainHealth #ChronicIllness #InvisibleIllness #RareDisease #SpoonieLife #Neurology
Is Chiari malformation life-threatening? 🧠 Let’s debunk the myths and shed light on the facts! 💡 Despite its complexities, Chiari malformation isn’t always a direct threat to life, but understanding its symptoms, risks, and management is key. Hear from Dr. Veznedaroglu 👨‍⚕️ and explore the truth behind this misunderstood condition. #ChiariAwareness #FactVsMyth #HealthJourney #ChiariAwareness #ChiariWarrior #ChiariJourney #ChiariCommunity #ChiariStrong #ChiariFighter #ChiariSurgery #ChiariSupport #LivingWithChiari #BrainHealth #ChronicIllness #InvisibleIllness #RareDisease #SpoonieLife #Neurology
I needed - reminder of this today so here is a repost. Original caption: Being chronically ill means I will (most likely) never have the physical appearance I always dreamed of as a transman. The physical appearance that we see everywhere and is deemed to be a perfect masculine specimen.  Muscles 💪🏾 lean muscles, bulky muscles, muscles coming off of muscles! It’s what we are told we need to be seen as to be masculine! This is reinforced heavily by social media.  When I first came out, social media was a place I could find like-minded people. I could follow their stories and see that my future could be bright. The problem was, and still is, the majority of the time the only thing we have in common is that we were trans masculine.  Today I’m (nearly) 5 years into my journey and I still struggle to find people who mirror even 10% of my experiences. That’s why I’ve decided to be the guy. The guy I needed so desperately to see when I was younger. The guy who is unapologetically themselves, warts and all. Not everyone can attain the cis/het movie standard of “beauty” and it’s sad I felt I had to for so long. Being me is just dandy. It’s ok to be chronically ill. It’s ok to have disabilities  It’s ok if you are Neurodiverse It’s ok if you don’t have muscles!!  It’s ok it’s ok it’s ok.  I see you. You are valid.  I’m sorry if you weren’t told sooner 💙  #transgender #transman #transisbeautiful #nonbinary #chronicillness #invisibleillness #autism #adhd #asd #thatguy #chiarimalformation #chiariawareness #lgbt #beyou #queer #tpoc #poc #reels
I needed - reminder of this today so here is a repost. Original caption: Being chronically ill means I will (most likely) never have the physical appearance I always dreamed of as a transman. The physical appearance that we see everywhere and is deemed to be a perfect masculine specimen.  Muscles 💪🏾 lean muscles, bulky muscles, muscles coming off of muscles! It’s what we are told we need to be seen as to be masculine! This is reinforced heavily by social media.  When I first came out, social media was a place I could find like-minded people. I could follow their stories and see that my future could be bright. The problem was, and still is, the majority of the time the only thing we have in common is that we were trans masculine.  Today I’m (nearly) 5 years into my journey and I still struggle to find people who mirror even 10% of my experiences. That’s why I’ve decided to be the guy. The guy I needed so desperately to see when I was younger. The guy who is unapologetically themselves, warts and all. Not everyone can attain the cis/het movie standard of “beauty” and it’s sad I felt I had to for so long. Being me is just dandy. It’s ok to be chronically ill. It’s ok to have disabilities  It’s ok if you are Neurodiverse It’s ok if you don’t have muscles!!  It’s ok it’s ok it’s ok.  I see you. You are valid.  I’m sorry if you weren’t told sooner 💙  #transgender #transman #transisbeautiful #nonbinary #chronicillness #invisibleillness #autism #adhd #asd #thatguy #chiarimalformation #chiariawareness #lgbt #beyou #queer #tpoc #poc #reels
Nothing can stop a warrior when you know you have so much to conquer! #chiari #chiariawareness #chiarimalformation #awarenessmonth #brain #braindisease #brainsurgery #conquer #warrior #purple #hope #zipperhead #battlescars #entrepreneur #success #strength #faith #grateful #gratitude #miracle #support #love
Nothing can stop a warrior when you know you have so much to conquer! #chiari #chiariawareness #chiarimalformation #awarenessmonth #brain #braindisease #brainsurgery #conquer #warrior #purple #hope #zipperhead #battlescars #entrepreneur #success #strength #faith #grateful #gratitude #miracle #support #love
This sounds really serious but I promise you I’m good. It’s a thing where you just learn to live with it. I want to put this out there to hopefully connect with others who have navigated this because I want to learn more as well as document this God story. Diagnosis are just more information and honestly this one has got me discouraged. Untill this reminder yesterday. I will say that this has made me funnier. The jokes have been flowing. Because if you don’t laugh all you have is a headache 😂🫠❤️ #chiari #chiarimalformation #chiarimalformationawareness #chiariawareness #chronicpain
This sounds really serious but I promise you I’m good. It’s a thing where you just learn to live with it. I want to put this out there to hopefully connect with others who have navigated this because I want to learn more as well as document this God story. Diagnosis are just more information and honestly this one has got me discouraged. Untill this reminder yesterday. I will say that this has made me funnier. The jokes have been flowing. Because if you don’t laugh all you have is a headache 😂🫠❤️ #chiari #chiarimalformation #chiarimalformationawareness #chiariawareness #chronicpain
I could set a world record with the amount of appointments I have every month🥴 Chronic illness often comes with lots of doctor appointments whether that be with specialists, for testing, or different types of therapy (PT, OT, etc.). So if your calendar is filled with appointments this month, I see you. I know it can be hard constantly having to juggle appointments and manage your health, so here’s some tips I have for handling it all: 🦓Use a digital calendar (I personally use the apple one) that can give you reminders and sync across devices to help you keep track of them all 🦓Like I did in this video, I also like to have a paper version I can see every day and reference when I’m calling to schedule follow ups 🦓And finally schedule your appointments at the time of day when your symptoms are the most manageable, which personally for me is in the morning. I know this isn’t always possible with the chaos that is our medical system, but it never hurts to ask! For more chronic illness tips & tricks like these ones, make sure to follow along with my journey! I would love to have you as part of our little zebra community🫶 #ehlersdanlossyndrome #ehlerdanlossyndromeawareness #edser #edsawareness #potsawareness #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #mcasawareness #tetheredcordsyndrome #tetheredcord #chiarimalformation #chiariawareness #chronicillness #chronicpain #spoonie #zebrastrong
I could set a world record with the amount of appointments I have every month🥴 Chronic illness often comes with lots of doctor appointments whether that be with specialists, for testing, or different types of therapy (PT, OT, etc.). So if your calendar is filled with appointments this month, I see you. I know it can be hard constantly having to juggle appointments and manage your health, so here’s some tips I have for handling it all: 🦓Use a digital calendar (I personally use the apple one) that can give you reminders and sync across devices to help you keep track of them all 🦓Like I did in this video, I also like to have a paper version I can see every day and reference when I’m calling to schedule follow ups 🦓And finally schedule your appointments at the time of day when your symptoms are the most manageable, which personally for me is in the morning. I know this isn’t always possible with the chaos that is our medical system, but it never hurts to ask! For more chronic illness tips & tricks like these ones, make sure to follow along with my journey! I would love to have you as part of our little zebra community🫶 #ehlersdanlossyndrome #ehlerdanlossyndromeawareness #edser #edsawareness #potsawareness #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #mcasawareness #tetheredcordsyndrome #tetheredcord #chiarimalformation #chiariawareness #chronicillness #chronicpain #spoonie #zebrastrong
39 miles to go! We’re getting so close to the 100-mile mark for Chiari Malformation awareness. Thank you so much to my friends, family, and everyone who has supported me along this journey – your encouragement means the world! 💜 For those who don’t know, Chiari Malformation is a condition where brain tissue extends into the spinal canal, often leading to severe headaches, neck pain, balance problems, and even difficulty swallowing or speaking. Long-term, it can result in nerve damage, chronic pain, and issues with coordination. This walk is more than just a personal goal – it’s a mission to raise awareness and support for all those affected by Chiari. Let’s keep pushing toward the finish line together! #ChiariWarrior #ChiariAwareness #ChiariMalformation #ConquerChiari #WalkForChiari #ChiariCommunity #ChiariStrong #ChiariSucks #ChronicIllnessAwareness #ChiariLife #ChiariSupport #EndChiari #ChiariProject #InvisibleIllness #BrainDisorders #ChiariSisters #ChiariAndMe #PurpleForChiari #ChiariChallenge #FightLikeAWarrior #ChronicPainAwareness #WeAreChiari #TogetherWeFight #HopeForChiari #ChiariAwarenessMonth #ChiariWalk #ChiariCure #BrainHealth #SupportChiari
39 miles to go! We’re getting so close to the 100-mile mark for Chiari Malformation awareness. Thank you so much to my friends, family, and everyone who has supported me along this journey – your encouragement means the world! 💜 For those who don’t know, Chiari Malformation is a condition where brain tissue extends into the spinal canal, often leading to severe headaches, neck pain, balance problems, and even difficulty swallowing or speaking. Long-term, it can result in nerve damage, chronic pain, and issues with coordination. This walk is more than just a personal goal – it’s a mission to raise awareness and support for all those affected by Chiari. Let’s keep pushing toward the finish line together! #ChiariWarrior #ChiariAwareness #ChiariMalformation #ConquerChiari #WalkForChiari #ChiariCommunity #ChiariStrong #ChiariSucks #ChronicIllnessAwareness #ChiariLife #ChiariSupport #EndChiari #ChiariProject #InvisibleIllness #BrainDisorders #ChiariSisters #ChiariAndMe #PurpleForChiari #ChiariChallenge #FightLikeAWarrior #ChronicPainAwareness #WeAreChiari #TogetherWeFight #HopeForChiari #ChiariAwarenessMonth #ChiariWalk #ChiariCure #BrainHealth #SupportChiari
☕️ Coffee Chronicles™ | September is Chiari Malformation Awareness Month. 💜 I was diagnosed with Chiari malformation in 2003. Five brain surgeries later, I’m still here and still learning what it means to live with a neurological condition that people often can’t see. Not every disability looks like what you think disability should look like. 💜 Drop a purple heart in the comments to show your support for Chiari Malformation Awareness Month. Share this to help spread awareness. Follow for more ☕️ Coffee Chronicles™ Real life. Real thoughts. Coffee required. #chiarimalformation #chiariawareness #InvisibleDisability #chronicillness #coffeechronicles
☕️ Coffee Chronicles™ | September is Chiari Malformation Awareness Month. 💜 I was diagnosed with Chiari malformation in 2003. Five brain surgeries later, I’m still here and still learning what it means to live with a neurological condition that people often can’t see. Not every disability looks like what you think disability should look like. 💜 Drop a purple heart in the comments to show your support for Chiari Malformation Awareness Month. Share this to help spread awareness. Follow for more ☕️ Coffee Chronicles™ Real life. Real thoughts. Coffee required. #chiarimalformation #chiariawareness #InvisibleDisability #chronicillness #coffeechronicles
I am so grateful 💯🫶🏾🙏🏿 #iamgrateful #blessed #chiarimalformation #chiariwarrior #chiaristrong #chiariawareness #scoliosis #recovery #healing #goodjobnaeem
I am so grateful 💯🫶🏾🙏🏿 #iamgrateful #blessed #chiarimalformation #chiariwarrior #chiaristrong #chiariawareness #scoliosis #recovery #healing #goodjobnaeem
Hi 360° Family! 💜 Join us on Saturday, September 27th at 9AM for a special cause! We’ll be walking alongside Tiffany and Sydney Salas at their 3rd Annual Chiari Awareness Walk at Pompano Beach Airpark. Let’s show up, walk together, and support raising awareness for Chiari! 👟✨ 📍 Location: Pompano Beach Airpark – Jacobs Aviation 📅 Date: Saturday, September 27th, 2025 ⏰ Registration starts at 9AM The walk is family-friendly (½ mile & 1 mile routes), so everyone can join in! Contact Us for more information 🙏 #ChiariAwareness #WalkForACause #CommunityStrong #ChiariAwarenessWalk #SupportAndAwareness #360Family
Hi 360° Family! 💜 Join us on Saturday, September 27th at 9AM for a special cause! We’ll be walking alongside Tiffany and Sydney Salas at their 3rd Annual Chiari Awareness Walk at Pompano Beach Airpark. Let’s show up, walk together, and support raising awareness for Chiari! 👟✨ 📍 Location: Pompano Beach Airpark – Jacobs Aviation 📅 Date: Saturday, September 27th, 2025 ⏰ Registration starts at 9AM The walk is family-friendly (½ mile & 1 mile routes), so everyone can join in! Contact Us for more information 🙏 #ChiariAwareness #WalkForACause #CommunityStrong #ChiariAwarenessWalk #SupportAndAwareness #360Family
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