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Kaisa Lee 🤗

@chronic_lee

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Chronically chILL ✨
hEDS, Chiari, HAE, MASH, ME/CFS, hyper POTS, MCAS, Endo, MALS/NCS/MTS, Dercum’s, Mold/CIRS
❤️‍🩹 Relying on faith 🙏🏻

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I’m Always Looking Back with a Desire for the PAST because of Soo much LOSS, just like Lot….. I sometimes Forget that God has Something Much Better for ME In the Future ♥️ I have no Doubt That He Will Replace what has been taken away by Three-Fold!
God has a Beautiful plan for me Much Better than I could even Imagine. And I know the Same to be true of Many of you Amazing women out There. So have Faith, keep walking, D0 NOT Give Up and Look Forward to A Glorious Future💫@kendraschronicallykicknit #walkwithfaith #chronicwarrior #edsawareness #tetheredcordsyndrome #craniocervicalfusion #Eaglessyndrome #thinkcelestial #mastcells #rarediseasesurvivor #autoimmunedisease #kendrastribe

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PLEASE SHARE 🙏♥️ Ok so I have a Huge UPDATE! I am supposed to be having a BIG Surgery in Rhode Island on Tuesday and just found out my Medical flight was denied!
I am freaking out and have had 4 hours of sleep after a Very Painful 😣Stressful Day Yesterday so i can barely move! To Explain the Surgery in easy terms My Spinal cord, lipomas, Nerves, and scar tissues are all Intertwined together. Not Allowing my spinal cord to move freely in the cerebral spinal fluid causing Horrific Symptoms that I’ll get to in another post. So because the NeuroSurgeon will be separating ALL of those without paralyzing me, I need the VERY BEST Soecialist! I need your Prayers🙏♥️ that the info I get to them today will change their minds because a commercial flight would kill me in the situation I’m in! My Body is having horrific symptoms from Head to toes literally😩I Don’t know how I’m living through this and the longer i wait the worse things can get ANd may Not be able to be Reversed😢(Also if we do have to go commercial just to get there if anyone has extra flight miles that they could donate please PM me♥️I feel soo stupid asking but I don’t know what else to do) ThankYOU🙏♥️🙏♥️
#prayers #tetheredcord #tc #eds #pots #rarepatientvoice #shareyourstripes #disability #wantmylifeback #themighty #warrior #livestronger #mca #dysautonomiaawareness #lipomas #oxygen #StayingAlive #positivity #kendrastribe

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The last 7 years years has brought us together, torn us apart, and glued us together again. #chronicillness #westernmedicine #potssyndrome #chiarimalformation #mastcellactivationsyndrome #mentalhealthawareness #physicianburnout #inmemoryof #agentorange #diabetes #memorialday #vietnamveterans

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My Beautiful Friend Alyssa needs prayers to Fix her Tethered Cord For Good💫 #tetheredcordsyndrome #chronicallyill #rarediseasesurvivor #friendsforever #lifeisgood #survivors #connectivetissue #ed #awareness #togetherstronger #pots #mastcell #cirs #cci #ccf #rarediseasepatient #blogger #newyork #myhero #@five_for_fighting @fiveforfightingpod

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Dedicated to a modern day Joan of Arc who’s on a different, but very similar crusade. Perhaps almost as tortuous and just as misunderstood.

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We shared Kaisa’s story when she had her Chiari Decompression just 2 years ago & I was so happy to see her beautiful smile & read her encouraging testimony pop up on Instagram as she recently celebrated her 2 year zipperversary. She has been generous to give us permission to share this good report with you all. Thank you @chronic_lee for being such a voice of hope to our community. May you continue to go from strength to strength.

“Today is my 2 year Chiari brain surgery #zipperversary! 🧠 Although I still have some big hurdles in this crazy health journey, I’m so grateful for life 2.0 thanks to God and a specialized, compassionate, incredibly talented Rhode Island neurosurgeon (and a whole lot of research)!

Swipe to see my zipper scar today compared with surgery day (for those who can stomach that sort of thing). 😜

I walked back to the surgery room that night (surgery was pushed to 8pm) by myself totally at peace thanks to my trust in the Lord and Dr K as well as the MANY prayers carrying me. The faith of so many combined with my own COMPLETELY drowned out the fear…it was incredible to experience. 🙏🏻💜

While I will ALWAYS have symptoms from this congenital disorder, I’m grateful for the relief I have gained. It took 15 months for me to heal and feel the effects but it was worth it! Every little of progress towards getting my body back is worth celebrating. 🙏🏻🎉

#chiarimalformation #chiari #chiariwarrior #chiariawareness #chiaristrong #chiaridecompression #chiarisurvivor #brainsurgery #brainsurgerysurvivor

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•STORIES OF HOPE•

• @aplotinthetwist sharing her beautiful testimony FRESH out of surgery! She felt “immediate” relief. Such an encouragement to anyone facing surgery, and all of us!

“Feeling enormous gratitude this morning for answered prayers. A Chiari decompression brain surgery is such a gamble & can go so many ways. Thanks to the literally hundreds of prayers going up in for my benefit I have had miracles happen. Prayer is so powerful, especially when combined! Thank you all so much. My heart is overflowing for a loving Father in Heaven & Savior who has carried me & guided me (& doctors) through so much of this & I know will continue to do so.

My Neurosurgeon said surgery couldn’t have gone better. When she opened things up the blockage was very obvious (things the MRI hadn’t revealed) & she knew just what to do to get things flowing again. She was even able to watch the herniated cerebellar tonsils rescind back into my brain. When I woke up from anaesthesia I immediately felt a clarity and lightness in my head that I haven’t felt in years (if ever!). I still have pain from the muscles spasming & incision but it was obvious she fixed a problem & I’m so excited not to feel the weight, pressure, & severe brain fog to the level it was! I am even astounding the nurses in how well I’m doing (not even nauseous). Trying to take it slowly still as I’m sure setbacks will happen but I’m just so grateful for the Lords help, choosing this amazing Neurosurgeon & for all of the wonderful friends that have helped sustain me and my family!”

•Thank you @aplotinthetwist for sharing your wonderful surgical outcome with us. We wish you all the best on your healing journey brave friend xo

#chiarimalformation #chiariwarrior #chiaridecompression

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Someone looks hungry!! lol So grateful for caring neighbors! Kaisa, it was so great to meet you and your boys!! I look forward to when we can relax restrictions somewhat and have a real visit!

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Such a thoughtful gesture.. How did she know lilacs were my favorite?? lol I’ll def be asking for a start/cutting to plant in my yard!! Thanks so much Kaisa, so sweet of you!!

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