scoliosisstory Love this 🏻 Having Extremely bad back pain tonight... I mean I hurt SO much.. I just want relief. I went to pain management today, he upped my dosages and told me to 'Keep Hangin On' .. I'm exhausted, I hurt, I can't sleep, I can't breathe, my back is killing me. My meds aren't working, I'm done. #scoliosis #scoliosisstory #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicillness #painmanagement #extremepain #exhausted #ouch 1w
  •   zassusince1984 I know you are tired to hear but you can do this sweetheart. Remember you are strong. You can do it! You aren't someone who gives up! You are a fighter! You are young and strong and will come out as a beautiful, strong and wise woman. And we all will help you through this. We are by your side and we have your back! Be sure you are strong enough! And always remember you are not alone. We all care for you and send you strength, love and prayers. Go maddie go!!!! 1w

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scoliosisstory Another Day, Another Doctor... Went to my family doctor today, my incision on my head is draining/bleeding and he's worried one of the internal dissolvable stitches didn't dissolve and might be trying to make its way out of my head, so we may have to go back in and clear it all up.. We also discussed how I am doing mentally, (which isn't good), and we actually had a really, really good talk.. I'm blessed to have this doctor, he is amazing. ️ I hope you all are doing well, you can always DM me if you have questions, or need a friend.. #scoliosis #scoliosisstory #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicillness #spoonie #doctor #mentalhealth #chiaridecompression #incision #surgery #stitches 2w

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scoliosisstory On this day April 19th, 4 years ago, little 13 year old me, I had my very first surgery, my very first Spinal Fusion.. It was by far the hardest, most painful, most mentally scarring, back surgery I have gone through, probably because it was my first.. But here's to making it a whole 4 years.. I never knew then, that I would need 3 more back surgeries, and a brain surgery.. I never knew where my life was going to go from that point.. It definitely isn't easy, it's filled with pain.. I have no idea what my future holds, if ill ever be pain free or if I'll live in this nauseating, breathtaking, shaking pain the rest of my life.. But I am where I am, and I know God has a plan for me.. I couldn't have made it this far without my amazing momma who always puts me first and always makes sure I'm okay.. Or my best friend who always makes sure I know I'm loved, who helps me through everything life has to throw at me, helps me navigate through my many emotions.. Happy 4 year surgeversary to me.. #scoliosisstory #scoliosis #klippelfeilsyndrome #chronicillness #chronicpain #chiarimalformation #surgeversary #spinalfusion #scoliosissurgery #scoliosisawareness 2w
  •   staciejustin Oh honey, I am so sorry. Your so young to be fused all the way to the SI joints. I have a few friends fused this low. They have alot of pain too. I pray for advancements that can ease your pain. You are a true warrior. Sending you love and strength. 2w
  •   kimball95 Your fusion is as low as mine!!!!! I'm back I on Friday for my second op xxxxx 2w
  •   kat.abdallah Also I'm sending you so much love 2w
  •   scoliosisstory @kat.abdallah It is not related to the spine. It's a different condition.. And thank you so much for the love and support, it means a lot! ️ // @kimball95 I hope your second op goes smoothly!! Thinking and praying for you!! #scolisisters // @staciejustin Thank you so much for always supporting me, the fusion is painful.. I appreciate your kind words more than you'll ever know.. 1w

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scoliosisstory Hey guys it's Bre, @no_fear_just_faith posting for Madi. She is not doing well tonight...in a lot of pain, shaking, confused, just not doing good at all but trying to avoid the ER🏼 If you could keep her in your prayers or send good vibes her way I know she would really really appreciate it️ Madi made this edit for me but I think it's perfect for her tonight️ Hang in there babe, I'll be here every step of the way👭 I love you. #bestfriend #chronicillness #sisters #scoliosis #klippelfeilsyndrome #chronicpainwarrior #spinalfusion #bebrave #nevergiveup #iloveyou 2w
  •   marieke75rn Praying for her 2w
  •   scoliosisstory @marieke75rn @thehustlersambition @shoshini Thank You all So much for the prayers and support, it means the world to me! 1w
  •   scoliosisstory @no_fear_just_faith I LOVE you with my WHOLE heart!! Thank you for always helping me 1w
  •   shoshini Have you ever tried Rolfing? I am in the early stage of working with a Rolfer. She has helped eliminate a lot of my pain this pass week. Just wondering. Life is long and short, hang in there, we are happy you were born and to see you . May things start to makes sense and you find ease. 1w

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scoliosisstory I wish this was a real thing... I think doctors, family, etc would be way more understanding If they could feel what I feel, and just live in my body even just for a day.. I'm tired of pain.. I'm miserable, all the time.. But I'm not giving up yet.. I hope you are all doing well, I appreciate all of the love and support more than you'll ever know .. #scoliosis #scoliosisstory #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicillness #spoonie #pain #toomuchpain 3w

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scoliosisstory Creating tonight.. Something I haven't done in a long time.. I'm doing a Minecraft painting for a very sweet little boy!
I've had to lay down every 10 minutes (because of pain)but it'll be worth it in the end! My pain has been the same today.. Uncontrollable and horrible .. But we got a disc of all of my scans from the hospital, now we can call Mayo clinic on Monday and schedule an appointment 🏻 I hope you're all doing okay, I love you all and appreciate your support #scoliosisstory #scoliosis #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicillness #spoonie #painting #art #minecraft
4w

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scoliosisstory I LOVE LOVE LOVE this... My best friend is my very biggest blessing, I could not do this life without her.. I'm having such a hard time and sometimes I just cry thinking about how lucky I am to have her around... I love you B! ️👭 I'm having so much pain today.. I can't get it controlled.. I'm sick of this #scoliosisstory #scoliosis #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicillness #spoonie #spoonielife #spooniebestfriend #bestfriend #loveher #sothankful #soblessed 4w

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scoliosisstory >>My Shirt says<< {{Good Things Are On The Horizon️ (please let it be true🏻) }}Another MRI done tonight (it was actually really painful, because I was already in pain and laying on that hard table just hurt so much..) Mayo needs new scans, then hopefully we can schedule my appointment, and get some answers... That's all I want is healing and answers.. So much pain.. 🏻 .. #scoliosisstory #scoliosis #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicillness #chronicpainwarrior #spoonielife #spooniestrong #spoonie #scans #mayoclinic #pheonixarizona 4w

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scoliosisstory My pain is out of control, unbearable. I'm sad. I feel alone. I want a doctor to see how much I'm hurting. It is ok to be sad. It is ok for me to rest, I am not worthless or useless. My body is hurt, it comes first. My symptoms are real, my pain is real. It is okay for me to take medication. I am good, even though I am hurt. 🛌 #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicpain #chronicillness #uncontrollablepain #spoonie #fighter #iamenough 4w
  •   sapereirajoana You are beautiful! This is not your fault! Listen to your body and rest. Trust me. You are amazing! Lots and lots and lots of loooveee ♡♡♡ 4w
  •   journey2fusion Hang in there, we're here for you! 4w
  •   aprilrosepetals You're not alone, many of us suffer and Drs are too stupid to know what to do 😕 all us chiarians get it and are here 3w
  •   la_andrea123 Best of luck to you, God bless you <3 2w

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scoliosisstory So I know I haven't been very active.. I apologize for that.. I just wanted to update you all on what's been happening.. I'm constantly in extreme pain.. Saturday & Sunday the pain was out of control. Tuesday it was unbearable and I had to go to the ER. I was screaming from the pain and crying the loudest I ever have. They gave me 2 doses dilaudid, a muscle relaxer and an anxiety med.. It helped control the pain for a bit but the pain was back within a few hours. Wednesday I went to pain management and my doctor switched up my meds. I'm not using the fentanyl patches anymore but he put me on 2 Oxymorphone and 4 oxycodone a day until I can get to mayo clinic .. It's overwhelming, my emotions are everywhere, but I'm holding on.. Thank you all for always supporting me.. And thank you to @no_fear_just_faith for helping me write this cause of my brain fog couldn't do life without her ️.. #scoliosis #scoliosisstory #chiarimalformation #klippelfeilsyndrome #chronicpain #ER #emergencyroom #pain #awfulpain #chronicillness #fighter #spoonie 1mon

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scoliosisstory 3 hours of sleep But at least I have my boys by my side {literally} ️ They are the best company to have in the middle of the night when my body won't let me sleep .. I hope you all have a wonderful Easter weekend {if you don't celebrate Easter, I hope you have a wonderful weekend as well ️} I love you all and I couldn't thank you enough for all of your support and love.. #scoliosis #scoliosisstory #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicillness #easter #dogs #therapyanimals #blacklab 1mon
  •   zassusince1984 We love you too sweetheart and adore your strength. Keep on fighting. I hope you can enjoy your Easter weekend a little bit. I hope you got a nice surprise to Easter. 🦄 1mon

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scoliosisstory I love this quote so much.. ️ Yesterday, I got up, got dressed, took my dogs out.. I made sure to take all my meds and I was going to do homework... I ended up crying and screaming from 3pm - 11pm when my best friend got out of class and could calm me down.. because my pain, was so intense.. I couldn't breathe, I couldn't move.. I had taken everything I had, a Percocet, muscle relaxer, anything that I could take, I took.. But none of it touched this pain... And this morning I woke up.. (I did the Easter shopping this year for my dad because he's having a tough time) got dressed and went to the store.. I put together 7 Easter baskets, I was sweating profusely in the store, about to pass out from pain.. But I did it.. ️ I have herniated discs, pinched nerves, and not one doctor will do a thing to help me.. I wanted to thank my best friend for always being there for me.. I wanted to thank you guys for offering so much support and love.. I couldn't do it without you! Trying my hardest to hold onto hope at this point in my life #scoliosisstory #scoliosis #chronicillness #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicpainwarrior #spoonie #butyoudontlooksick #migraines #backpain #herniateddisc #hope #fear 1mon
  •   michellepress Research "The Pilates center" in Boulder, Colorado. I'm pretty sure they would be able to help you. 1mon
  •   staciejustin @scoliosisstory my friend also says, fear is not from God. Love that. 1mon
  •   laurasteiss My doctors don't want to do much for me either because of my CRPS :( 1mon
  •   kiwiholly Love this quote!! 1mon

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scoliosisstory I woke up like this 🏻 just woke up and I'm feeling awful... Terrible back pain, headache.. Needless to say I don't want to be up right now.. But I literally slept the whole day yesterday and I need to do some homework.. Gonna take my dogs on a short walk 🏻 Then go to the store and get a big 44oz Coke.. It's seriously my weakness + my brain surgeon told me I could have as much as I want so I'm sticking with that I hope you all have a great day! Love you #scoliosisstory #scoliosis #chronicpain #chiarimalformation #klippelfeilsyndrome #toomuchpain #struggling #coke #cocacola #dogwalk #butyoudontlooksick #chronicillness 1mon

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scoliosisstory I miss my best friend so much it hurts... Guys, long distance best friendships/sisterhoods are NOT easy... I've been really struggling with everything going on (having no surgeon, being in extreme pain, no solution to any of it..) and all I want to do is be with my best friend.. Living 800 miles apart I can't just call and say "comin over, I need a hug" .. Or "can we go for a drive, life is hard" .. I can text, call, whatever, but it's just not the same... I'm having a hard time and I just need a hug and to watch Netflix with my best friend.. We never plan big trips.. The first time I went I sat at her work and did homework at her apartment.. The last time, I slept in a hospital chair next to her bed.. It doesn't matter what we do, as long as we're together... I'm struggling and I just need my best friend... {counting the contents of my piggy bank}
#scoliosisstory #scoliosis #chronicpainwarrior #chiarimalformation #klippelfeilsyndrome #bestfriend #longdistancesucks #chronicpain #struggling #life
1mon
  •   zassusince1984 Oh honey. I'm sure your besti can't wait to give you your hug! I would love to give you one too. So I send you big love vibes over the ocean the hole way down to you. And it will carry strong feelings, love, hope, happiness and all the good things here on earth on its way to you. Just thing how much people send you this love and help you go through this. You can't see it but you can feel it. Try to focus on all this good. The breeze outside. The warm feelings your dogs give you. The love Bree sends you and all this. Sit down and feel it. I bet you will feel a little better after it. Remember we love you. Even without knowing. But you share all this with us and that means to feel with you. Through your share it will be more easy to let go. And to know you are loved far and wide. A BIG HUG IS ON ITS WAY TO YOU. 1mon
  •   clareinstone aw hope ur ok hun big hugs x 1mon
  •   scoliosisstory @zassusince1984 Thank you so much for always supporting me and sending so much love.. ️ || @clareinstone Thank you so much! Hugs!! 1mon
  •   scoliosisstory @no_fear_just_faith I love you so much.. We'll see eachother soon.. It's just so hard 1mon

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scoliosisstory Please Read️ This is one of those posts where I am going to be raw and completely honest... I didn't want to write this post: I didn't know what to say or how to explain.. I'm not doing well. At my appointment with my new surgeon he informed me that there is nothing surgically that can be done to help me. So I have to manage my pain and symptoms the rest of my life. I'm sad, I'm lost, I'm upset... But mostly I'm scared.. How can I be in this much pain and there is nothing that can be done to "fix" it? Why do I have to hurt this much with absolutely no relief..? I hate this. My head pounds starting every morning when I wake up, and it doesn't stop. My back hurts and aches and is fatigued and painful all the time... My body is hurt, and nothing can help... I will be on medicine and in pain management probably the rest of my life, and that scares me.. I appreciate all of the support each of you offers me here on Instagram.. I am more grateful than you will ever know... I am going through a hard time right now, I'm trying to adjust, I've cried everyday since my appointment.. I'm not doing well, but I will get through this eventually... ️ >If you have any questions you can always comment or DM me.. < #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicpain #chronicillness #painful #upset #spoonie #chronicwarrior #chronicpainwarrior #update 2mon
  •   scoliosisstory @sapereirajoana Thank you so much for ALWAYS supporting me through everything... I hope you also can find distractions from pain.. You are absolutely amazing, we can get through this 2mon
  •   scoliosisstory @zassusince1984 thank you so much for always supporting me! ️ I'm doing a little better.. Still in a lot of pain and still upset but I'll be okay.. 2mon
  •   scoliosisstory @mmorales706 thank you.. No I haven't tried that.. What is it? 2mon
  •   mmorales706 My daughter has scoliosis and had surgery too. About a 6 months after surgery she always had pain and has tried everything from A -Z anyway her dr referred us to nova spine. Here they started with some epideral shots which only worked for 3 hours without pain so now they will do this nerve ablation on her whole back which they burn the nerves and if everything goes well she should be pain free up to a year. This is the last option she has so we are praying it does work for her. Is having it done in May. I dont know if this is something that could also help you 2mon

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scoliosisstory Day 3 of wisdom teeth recovery .. I only had the bottom 2 pulled because the top 2 weren't even close to being grown in... They had to cut my mouth to get them out.. So I'm pretty sore .. Plus my face has been getting bigger and bigger.. #chipmunk🐿 I'm in a lot of pain... My face, ears, headache, back, etc.. My appt with my new surgeon is on Tuesday!! Oh goodness. I really hope he knows how to help me.. I'm in so much pain and so miserable... Thank you all for always supporting me, love each of you ! #scoliosisstory #scoliosis #chiarimalformation #klippelfeilsyndrome #chronicpain #chronicillness #wisdomteeth #chipmunkcheeks #ouch 2mon

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scoliosisstory Rare disease awareness day.. I love days when people who have diseases, have the opportunity to raise awareness and talk about what their daily life is like with a disease.. I have a few rare diseases... Congenital Severe Scoliosis - is when your back is crooked.. Ive worn 7 different back braces, been in physical therapy for years, I've had 4 spinal fusions... I also have Klippel - Feil syndrome aka (short neck syndrome), it is when the vertebrae in your neck are naturally fused at birth... And lastly Chiari Malformation - is when your skull is too small for your brain.. I had brain surgery called Chiari Decompression - they take out a piece of your skull to make room for your brain and spinal fluid.. I suffer from chronic pain, I have chronic migraines from #chiari.. I have had 5 surgeries, 15+ cortisone injections In my hip bones, countless needles, xrays, tests, and ER visits... I go to pain management weekly, and I take serious narcotics for pain, see doctors more than most family.. And am getting ready for more surgery.. Rare diseases are not rare.. It would be amazing if more people educated themselves when they hear about an illness.. It would be amazing if everybody knew what we were talking about when we brought up our rare diseases.. Talk, aware, communicate, educate... 🤕 2mon
  •   makanda_tubie This is an excellent post. 2mon
  •   janett_salos Hi!!! Where are you from? 4w
  •   la_andrea123 I am just looking at your posts, you are so strong and one day everything will get alot better 2w
  •   thewagnersix I'm having 2 surgeries in one day in July. 4-5 discs removed and replaced with xlif then flipped over for my 14-15 level spinal fusion. My curves are 83,67,58 and I also have a severe kyphotic curve as well. I am not looking forward to surgery and I feel bad my 4 kids have to go through this with me. 6d

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scoliosisstory Fentanyl pain patch... You can barely see it, it looks like a put a piece of tape there... But I promise it's there... Pain management gave me this until I can see the new surgeon.. Side effects are nausea and dizziness... I've never had a pain patch so I was wondering if any of you have had them and what happened, what you did/didn't like about them...? I felt horrible before I put the patch on so I don't know what is from the patch and what was already there... But been having tons of pain, headaches,
Neck pain, back pain, nerve pain... I've just been a mess and I can't get my pain controlled.. I hope you all are doing well... I love you! #fentanylpatch #fentanyl #painpatch #painmanagement #appointments #support #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #rarediseases #pain #ouch #meds
2mon
  •   scoliosisstory @ninsl01 I hope they work for you with not too many side effects... ️ // @verzachtend Thank you so much, it means a lot to me ️ I'm glad they helped control your pain at least a little. // @sharonawilliams Thank you So much ️ that sounds awful, so sorry you had so many side effects! 2mon
  •   ninsl01 Thanks! 2mon
  •   sapereirajoana I also can't get my pain controlled. I've never tried Fentanyl. Does it work for you, sweetie? 2mon
  •   saaarrxosoto I just got on these. It's dramatically helped the pain. But it still is painful but ATLEAST I can get out of bed for a little while ..... I am having surgery on April 6th tho so I'm really scared to have it on and worry with the anesthesia and stuff like that ;( 2mon

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scoliosisstory So sorry I've been MIA for like a week... As I mentioned in my previous post my dogs had surgery, and holy cow it's been a lot of work taking care of them.. But they are healing ️ /// I have a few things coming up.. 🗓Tomorrow I have a Pain Management appt, just for a med refill..
On the 3rd I'm getting my wisdom teeth pulled..
On the 8th I have an appointment with a NEW SURGEON!! 🏼️He looked over all my scans and wants to see me in his office.. Hoping and praying he can help me ️ // This week has been rough to say the least as far as pain.. It has been out of control, I can't stand or sit up for very long... My meds aren't working and I actually threw up from the pain the other day... It has been extremely hard, hoping for some relief soon. // I hope you are all doing okay, love you all and appreciate all of the support
2mon

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scoliosisstory New hair... ️ just some highlights .. Makes me feel confident.. I am beyond grateful for the support I receive here on Instagram.. I love each everyone of you and the love you show me... This week has been rough on me with unbearable pain, meds aren't working well.. But I appreciate all of the words of encouragement .. Both of my dogs are having surgery tomorrow to be fixed, I am going to be spending the next few days taking extra good care of them.. And
My Great Grandmother, passed away peacefully in her sleep last night... I'll miss her dearly but I know she is in a better place with my grandpa ️ 😇This week has been tough .. But I'm trying my best to push through .. Love you all #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicillness #chronicpain #newhair #haircolor #support #love #thankyou
3mon

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