#tetheredspinalcord

MOST RECENT

2 months post op check✅ My neurosurgeon Dr. Danielpour is a superhero , so blessed to have him in my life 💙🤗🔝@cedarssinai #friendsforlife #neurosurgery #drmoisedanielpour #myhero #tetheredspinalcord #doctor #surgeon

“They see me rollin’...they hatin’...patrollin’, they tryin’ to catch me ridin' dirty!” #spinalsurgery #spinalcordinjury #spinalcordinjuryrecovery #tetheredcord #tetheredspinalcord #neurosurgery #homebasedcare #recoverymode

3 months post-fusion. I get to start taking my neck brace off more and work on moving again. Seeing as I’ve been in a brace over a year, there’s still a bunch to do. Short post but I’ll try to update a bit more. Medicaid is dragging its feet with getting my aide help going again, but it should be set by August 15th. Other than that, this was a crazy week and I’m exhausted. Love you all!!! 💜💜💜

What will I do with my days when I don't have to go for every other day dressing changes! Another course of antibiotics as the wounds infected 🤨 But new book..yay 😀 Couldn't resist this after seeing the film trailer! #themeg #stevealten #chester #3monthspostop #spinabifida #tetheredspinalcord #tetheredspinalcordsyndrome #booksofinstagram #booksbooksbooks #bookstagram #whatimreading

Ice cream tonight @friendlys Maybe she will gain some weight before they weigh her tomorrow! She had to have the hat! 😂 Never be ashamed of your scars, you survived the trauma, God has healed you. #extracalories #friendlys #vanilla #smilesforsmiles #chdsurvivor #tetheredspinalcord #spinabifidaocculta #surgery #strongertogether #resilient #nevergiveup #icandoit #icecream #love #joy #Blessings #godisgood #scarstellstories #scarsarebeautiful #heartscar #openheart

Crisis mode continues -
Crisis mode continues, as does my absence from social media. Everyone wants to know if my MCAS is better after the fusion. I was hoping it might be, because even though I still react to everything, I haven’t needed epi in over a month. That’s at least partly because I’m on steroids and also because I rarely go out, especially on consecutive days. This gives my mast cells a chance to quiet down between outings. As it turns out, if I go out a few days in a row I’m right back to where I was.
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I was on my way to see the spinal surgeon here because my back scar has been puffing up and apparently there are pockets of fluid under it - could be a bad sign. Someone was smoking 5 ft from me at the station, and I had to ask someone else using my phone speech program (I lose my voice with reactions) to ask the person to move. The damage had already been done though. -
I got on the train and a perfume that was particularly bad hit my nose. I thought I was going to make it to where I had to get off to transfer. A few minutes before, I started feeling out of it and then started having breathing issues. When I couldn’t find my radial pulse (low blood pressure, <90) I used the first epi. I was feeling better and got off to transfer. As I was waiting symptoms started coming back and I used a second. I got on the last train and I could tell I was reacting to something on that train. -
The third epi helped but was taking its time. I still was having breathing trouble, so I asked the driver to call for an ambulance and got off the train. By the time the medics got there I was finally coming out for good. I still wasn’t completely better, so I let them take me to UCH. I had the ER let the spinal center know I wasn’t going to make it (the ER and spine center are very close), so that crisis continues, plus I’m dealing with an ER visit now. Still working on aide help too. Having a disability is a full-time job and then some.

I feel that I am in great shape I am very proud of myself and happy with my size now and I am still growing.
I am blessed, that my lower back is committed to keep me up and walking around. Being Born disabled hasn’t been easy and still over coming many trials, to be better..
And I am getting stronger, I have gained weight and I am weighing at 153lbs. And continuing....
#gym #workout #iworkout #excersise #physicaltherapy #pooltherapy #tetheredspinalcord #miamichildren #nickolaschildrenshospital #beproudofyourself #beproudofwhoyouare

Always be proud of yourself and don’t forget who and what you are..
I am very Proud of myself, how about you??
I was Born with a Tethered Spinal Cord. When I was a new born baby Doctors Believed that I would never walk or ever have a normal life.
I don’t know what is normal, the term doesn’t exist to me. I am very Special and Very blessed that everyday, I can do anything still.
I can get up, stand up, an be myself and not ever live a wheelchair life.
Only Two Doctors at Miami Children’s Hospital believe that they can fix me. And they truly have.
But unfortunately, I do have terrible nerve pain and my back will never be 100% and be Normal.
It is Rare, delicate, and Very special and one day I could be in a wheelchair again. But to prevent this from happening I must have mussels in my back to support me. I do my own physical Therapy, with pool therapy and I am happy with myself and shape. And I am still growing.
I take GNC supplements to help and they are helping and I have gain 25lbs pounds and Weighing at 153lbs now. I don’t even noticed where the 25 pounds 😂 went to..
Probably my butt😂😂😂😂😂
#gym #excercise #physicaltherapy #bornwithararecondition #tetheredspinalcord #miamichildren #nickolaschildrenshospital #proudofmyself #behappyaboutyourself #bodybuilding #gnc #dietsupplement #iworkout #veryblessed #borndisabled #

She inspires me. She is seven years old. She is strong and resilient. She shows love, and gives smiles to everyone. All people are equal in her eyes. She keeps fighting with every diagnosis she is given. She never gives up. She delivers heart totes and smiles to children after heart surgery. She is my hero.
#nevergiveup #strength #resilient #love #joy #smiles #sharethelove #chdwarrior #herniasurgery #blessed #Tetheredspinalcord #icandoit #livefightwin #zipperclub #congenitalheartdefect #littlethings #bravelittlewarrior
#godisgreat #shining

After weeks and weeks of every other day dressings and being nearly healed my wound had decided to break down so I'm back to square one 😥😢 So painful to lean back on so back to lying down and no driving again for me! Had a pancake to cheer myself up 😂 #feelingsorryformyself #postop #tetheredspinalcord #tetheredspinalcordsyndrome #soclosesofar

THE camp for children with special needs!! CAMP VICTORY is a place for meeting other children and families with similar medical conditions. Here, our children are able to have a camp experience in a safe environment while doing all of the fun camp things that they never thought possible.🙌🏼 CAMP VICTORY has one week dedicated to each type of medical condition with special events held throughout the year. 🗣Our personal testimony:
Camp Spifida ( held one week every summer at Camp Victory) has been pivotal is Jess life! Prior to attending Camp Spifida Jess was very insistent that she was the only kid with her medical condition. We could not convince her otherwise and that “normal” was what she made it.
Well known now at Camp Spifida, Jess has many healthy and lasting friendships, regularly communicates with “kids like her” ( something she desperately wanted and needed ), and has gained tremendous confidence that life IS navigable with chronic medical conditions! ❤️This is Jess 8th and final year at Camp Spifida. 💻If you have, or know of, a child with chronic medical conditions, please take a close look at Camp Victory located in Millville, PA. Children attend from all over the US. The medical staff is top notch and children are in excellent care.
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#blogger #campspifida #chronicpain #tetheredspinalcord #spinabifida #volunteer #specialneeds #disabled #inspire #kidscamp #campvictory

Love this piece and tip from @the.mountain.view.cottage 😍🙌🏻 #repost
・・・
I love Chippy furniture and I cannot lie!! What I don’t love is Chippy furniture that keeps chipping 5 years after I painted it👎🏻!! I finally found the best top coat ever for fixing this problem I shared the whole process of sealing this piece and my new favorite furniture project in my bio link! Also quick update on Tristan’s appt! His appt went really well and he is cleared to resume regular activities. Unfortunately he has some extensive testing to still undergo and will start that in August. Several more scans of his spine were ordered at his appt. These tests will tell us if he has additional issues with his spinal cord and give us a some more information on damage caused by his tethered cord. He is in great spirits! Enjoying his first few days back to school this week and totally back to his happy self telling me all about his favorite dinosaurs and peokemon like it’s his job to know everything about both topics! I sure love him soo much! And I’m glad that his circumstances rarely ever get him down! We will keep on pushing forward! #spinalsurgery #baddaysdontlastforever #farmhousestyle #cottage #furniture #furnituremakeover #paintedfurniture #milkpaint #ourattitudeisourchoice #tetheredcord #tetheredspinalcord

I love Chippy furniture and I cannot lie!! What I don’t love is Chippy furniture that keeps chipping 5 years after I painted it👎🏻!! I finally found the best top coat ever for fixing this problem I shared the whole process of sealing this piece and my new favorite furniture project in my bio link! Also quick update on Tristan’s appt! His appt went really well and he is cleared to resume regular activities. Unfortunately he has some extensive testing to still undergo and will start that in August. Several more scans of his spine were ordered at his appt. These tests will tell us if he has additional issues with his spinal cord and give us a some more information on damage caused by his tethered cord. He is in great spirits! Enjoying his first few days back to school this week and totally back to his happy self telling me all about his favorite dinosaurs and peokemon like it’s his job to know everything about both topics! I sure love him soo much! And I’m glad that his circumstances rarely ever get him down! We will keep on pushing forward! #spinalsurgery #baddaysdontlastforever #farmhousestyle #cottage #furniture #furnituremakeover #paintedfurniture #milkpaint #ourattitudeisourchoice #tetheredcord #tetheredspinalcord

This was an angry and hurt doodle I did with old #copicmarkers when I was struggling a lot with my pain the other day. I'm still in pain, but feeling so thankful to be surrounded by such supportive people. Community is the best gift that anyone can have. 💙❤️💙 (I promise I'll post something nice for the next piece!)
[A messy sketch self portrait of Jay with an angry but determined expression and tears of blood. Text around him reads "I breathe. I break. I breathe again." There is an open, screaming mouth on his neck.] #ventart #chronicillness #chronicpain #spoonie #legpain #smallfiberneuropathy #ehlersdanlossyndrome #edspain #tetheredspinalcord #fibromyalgia #jdynspoons #undiagnosed #chronicartist #disabledartist #gore #bodyhorror #twblood

Myanna now has ten scars on her little body. I tell her she's beautiful. I tell her the stories. She tells people her stories. She knows they are there because wonderful surgeons saved her life.
Love your body.

#beproud #scarsmeanisurvived #scarsarebeautiful #love #scarstellstories #chdsurvivor #scarstoyourbeautiful #spinabifidaocculta #Tetheredspinalcord #herniasurgery #superhero #loveourdifferences #autism
#Sobrave #zipperclub
#resilient #bravelittlewarrior
#godisgood #blessed #survivor

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