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#rareillnesses

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Migraines and #ehlersdanlossyndrome with no medications for either because Medicaid sucks is terrible, and no one should ever have to go through life like this. My heart goes out to anyone else who goes through this. Tomorrow is #rarediseaseawarenessday. Please think of those who you may know who have #rareillnesses. I'm betting there are some you're not aware of in your life right now. Those of you who have a #raredisease, fight on! You are my brothers and sisters in battle!

"Growing Up With A Deadline"

Kamila kisses her daughter, Sammie, who suffers from Batten's Disease. Sammie has a life expectancy of 8-12 years old. "At this point I just want her to be comfortable and happy," says Kamila.
Story and photos by Maria Edible @maria_edible
#Battens #BattensDisease #RareIllnesses

Experiencing a lot of pain... Sort of at a stand still right now until I have an appointment with my new surgeon... Last night was rough, fell asleep at 3am, woke up every hour, then woke up at 6am... My back pain is horrible, my headache is horrible.. Plus, I'm getting... Normal people sick 😱 I hope you all are doing well! ❀️ #scoliosisstory #scoliosis #klippelfeilsyndrome #chiari #malformation #sickkid #chronicpain #chronicillness #iamrare #rareillnesses {I painted this canvas with acrylicsπŸ’•}

TLC premieres new series: "Two in a million" about individuals finding eachother whom share rare conditions or diseases. This weeks boys Giovanni & Owen share the rare condition Schwartz Jampel Syndrome, which permanently & painfully contracts their muscles. The two share hardships, triumphs and strike up a rare friendship. #Twoinamillion #TwoinamillionTLC #TLC #rareillnesses #rarediseases #schwartzjampelsyndrome #friendship #triumph #pain #understanding #love #hardships #premiere

Let food be thy medicine and medicine be thy food.
-Hippocrates-

Today I was able to sit up long enough to paint this butterfly with the IIH ribbon #iih #pseudotumorcerebri #intracranialhypertension #invisibleillnesses #iihawareness #rareillnesses #timetorelax

Tho i am fighting the πŸ‘Ί evil 😷 type 1 brittle diabetes demons, the gastroparesis, dumping demons, starvation reaper and their army of death πŸ‘Ή i shall fear no evil πŸ’€ Fake it till you make it πŸ€— dangerous life or death constantly in my body that already thinks its dead, and a threat to itself, ya my body fights itself every breath i take, every step, move i make (thinks of song, stuck in head now. lol) i am literally supposed to be dead. I use no doctors, God is my only healer, i use no daily rx or otc drugs (on the odd occassion of severe levels i cant fight, or emergency basis only) Easter day is my 7th year ALIVE again and off doctors and ALL 37 deadly Rx πŸ‘‰πŸ‘‰ harmadrugs πŸ’ŠπŸ‘ˆ (they killed me, no, really, i died) Easter Day 2010 i died and had a glorious visit from Gods spirit, it was life changing, i called it my revelation!! So, no matter what, two things, God loves me, and Cannabis cures!! I am so blessed, grateful, thankful and still amazed at all your works father God. Thank you for my life, Mike, our babies, their babies, our parents, siblings, cousins, friends, dogs, cats, animals, our farm, etc. Even my tribulations, thank you for it all. Please help me to serve you best Lord. Please protect and care for all of my lived ones today, thank you for my health, and my knowledge, my life, me myself and i, for my dog Sanchez, for the sulight to power my tv, for all you have given us and prepared for us, help us become even closer and please you more. Keep my love safe on the tracks and the highway please, i love you God!! Amen
#youdoyourbestandgodwilldotherest #alrightalrightalright #dazedandconfusedmovie #chillinginthecabin #mylifeisawonderfultrip #chronicandterminalillnessesfighter #survivornotvictim #fightlikeagirl #peace #staytuff #type1brittlediabetes #gastroparesis #dumpingsyndrome #autoimmunediseases #rareillnesses #tubieforlife #fightingdeathdemonsdaily #neuropathypain #highandlowbloodsugarshourly #nobodyunderstands #itsucksbeingthiswayandnotbeingableanymore #justsaying #truthisstillimdyingcausedoctorsandgovrxdrugsthatkill #nowilivewithoumostmyvitalorgansandimstarvingtodeathfromitall #mentallyandphysicallyprettybroken #alivwithourlordandcannabis

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Today I was able to sit up long enough to paint this butterfly with the IIH ribbon #iih #pseudotumorcerebri #intracranialhypertension #invisibleillnesses #iihawareness #rareillnesses #timetorelax

Tho i am fighting the πŸ‘Ί evil 😷 type 1 brittle diabetes demons, the gastroparesis, dumping demons, starvation reaper and their army of death πŸ‘Ή i shall fear no evil πŸ’€ Fake it till you make it πŸ€— dangerous life or death constantly in my body that already thinks its dead, and a threat to itself, ya my body fights itself every breath i take, every step, move i make (thinks of song, stuck in head now. lol) i am literally supposed to be dead. I use no doctors, God is my only healer, i use no daily rx or otc drugs (on the odd occassion of severe levels i cant fight, or emergency basis only) Easter day is my 7th year ALIVE again and off doctors and ALL 37 deadly Rx πŸ‘‰πŸ‘‰ harmadrugs πŸ’ŠπŸ‘ˆ (they killed me, no, really, i died) Easter Day 2010 i died and had a glorious visit from Gods spirit, it was life changing, i called it my revelation!! So, no matter what, two things, God loves me, and Cannabis cures!! I am so blessed, grateful, thankful and still amazed at all your works father God. Thank you for my life, Mike, our babies, their babies, our parents, siblings, cousins, friends, dogs, cats, animals, our farm, etc. Even my tribulations, thank you for it all. Please help me to serve you best Lord. Please protect and care for all of my lived ones today, thank you for my health, and my knowledge, my life, me myself and i, for my dog Sanchez, for the sulight to power my tv, for all you have given us and prepared for us, help us become even closer and please you more. Keep my love safe on the tracks and the highway please, i love you God!! Amen
#youdoyourbestandgodwilldotherest #alrightalrightalright #dazedandconfusedmovie #chillinginthecabin #mylifeisawonderfultrip #chronicandterminalillnessesfighter #survivornotvictim #fightlikeagirl #peace #staytuff #type1brittlediabetes #gastroparesis #dumpingsyndrome #autoimmunediseases #rareillnesses #tubieforlife #fightingdeathdemonsdaily #neuropathypain #highandlowbloodsugarshourly #nobodyunderstands #itsucksbeingthiswayandnotbeingableanymore #justsaying #truthisstillimdyingcausedoctorsandgovrxdrugsthatkill #nowilivewithoumostmyvitalorgansandimstarvingtodeathfromitall #mentallyandphysicallyprettybroken #alivwithourlordandcannabis

This may look like an odd picture, lol and it is 😊 but it's also SUPER meaningful! I'm leaving my house and actually going into public for the first time since February 21st. It's been a month. Depression, you WILL NOT WIN! πŸ’₯

I am overwhelmed by the love and care I have received from my last post. To know one is not alone during times of deep emotional pain, lifts you up, renews your spirit, and lets you know you still have a little fight left in you. Thank you to those of you who have reached out to me πŸ’• Today is a new day. My heart is still heavy, my eyes burn from crying, but I will try and start this day with peace in my heart and positive energy in my soul. Xo, me

Today has been a day full of tears, second guessing myself, my choices, my past and future, questioning the reason for life and my purpose here on earth...I'm still crying as I write this now. I am struggling...hard. But what I have to remind myself is I've struggled before, worse even, and I somehow managed to breakthrough to the other side. I will hold on to that hope. Whether it be my depression, anxiety, ptsd, OCD, lupus, fibro, pots, etc etc etc it's a constant fight and battle in my body and brain. I want much more in life than this, and I'm not ready to give up the fight yet. I survived today. Tomorrow is a new, fresh day.

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