SCOLIOSIS LIFE

MY JOURNEY THROUGH SCOLIOSIS

[scolilife]

My personal pain scale

1: I have no pain and I am able to do everything with ease

2: My pain is there and I am aware of it but I can continue on with everything

3: My pain is very noticeable and I start to show physical signs of being in pain

4: My pain is severe and I am no longer able to continue doing what I was doing. Usually means sitting or lying down until it passes

5: My pain is very severe and I have now started crying. I have taken medication 

6: The pain is so intense I can no longer speak because my entire body is focused on the pain

7: My pain is so intense I have started to scream. This requires additional stronger medication

8: I have now taken extreme measures requiring medical assistance

There is nothing else after this. I have chosen to stop at 8 because my pain is unique. When asking me about my pain levels, please only refer to this chart because this is how I measure MY pain. THIS is how I cope and how I have learnt to adapt, listen, and take care of my body. Respect my unique health and help provide care that is unique to me.  

[scolilife]

for years, i felt like i was drowning. drowning in appointments, in pills, and in my sorrow. it was as if every time i tried to swim ashore, something was holding me back, preventing me from saving myself. was it the pain? was it the fear of pain? 

but something changed. somehow, i was able to cut the cord and swim ashore. to experience just a short moment of freedom and safety. of normalcy. but that was just the problem, it was short. it was a short piece of heaven. but before i knew it, i was drowning again. the pain returned with a fury. the sleepless nights. the familiar sound of the pills shaking in the container as i hastily fiddled with the lid. the quiet moans as i tried to find comfort in the agony that had once again swallowed my body. 

but one thing is different, i am no longer afraid. i am no longer ashamed or forced awake by my nighmares. I have chronic pain. sometimes the pain is consuming, and sometimes its so light that my mind can finally drift to focus on more important things in my life. but my pain is still there, and it will always be there. but rather than fearing it, i have learnt to embrace it. to expect it. to prepare for it. but most importantly, to learn to live with it. pain will be there whether i want it to be or not, but fearing it and thinking of all the negativity will only make it harder. 

for probably the first time in my personal chronic pain journey, i am finally at peace. i am ready to live my life the way i have wanted to for so long. to travel. to say yes. to enjoy the moment and deal with the consequences later. 

I have chronic pain and i am living. 

[cherrycheezy-deactivated2020052]

Who on here has scoliosis? I had the rod surgery done when I was 12 and it’s always been a burden on my life. Anyone can relate to this feel?

[scolilife]

I'm here if you want to talk. I often suffer from my own inner demons when i comes to my surgery

[cherrycheezy-deactivated2020052]

Who on here has scoliosis? I had the rod surgery done when I was 12 and it’s always been a burden on my life. Anyone can relate to this feel?

[gqa1]

Reblog In 5 seconds for good luck

[scolilife]

Today was one of my worst health days. The fatigue and headaches left me curled up in bed all day, too exhausted to even move, I could barely focus on watching tv. I couldn't even eat lunch, which is saying something because I never skip meals even if its health related. But despite feeling “not like myself” and crying on the phone to my mom for an hour, I am still second guessing myself. Am I exhausted because of my health or am I lazy? Was I really tired because I feel a little bit better now? What kind of society tries to install this idea that if i am not healthy, I must be faking it. So here i am, trying to sit up at my desk because I dont want to spend my 5th consecutive hour in bed, questioning my own sanity and my own health. This is unacceptable and I need to change how I look at my health. 

[scolilife]

@ the people who feel personally victimized when i tell them working out has not solved my chronic pain

[meangirlnurse]

i think sometimes trauma survivors fall into this place where it’s very hard to believe that anything that happened to you was that bad. and the only proof you have that it was that bad is that you’re suffering. and so healing can be really scary and difficult because it means giving up the only tangible evidence you have that you were traumatized in the first place 

[personality-glitch]

someone gets it

[scolilife]

Well, i just had my two year post op appointment at my hospital, an appointment that should be my last. But like everything else along my journey, it left me with more questions and decisions.  My surgeon, upon asking multiple questions about my pain, feels that it is either due to a completely separate condition (which I strongly believe in) or a result from my hardware. It is definitely not from the surgery itself, a conclusion that my family and i suspected for some time now.  That being said, he believes it is best if i start looking into hardware removal. While it is a much easier than spinal fusion, it is no easy surgery and would require some time off, amongst many other complicated choices and decisions. There is only a 50% chance that it will solve my pain, leaving me to decide if major surgery is even worth it.  Another option would be to be referred to an adult orthopaedic surgeon, which could take 3 years, in hopes that they will do the surgery and providing me with a lot of time to see if the pain goes away or is explained by something else. This is much more appealing to me and it would be nice to continue to be followed.  If anyone has any experience in pain and spinal fusion, more specifically, with hardware removal, PLEASE MESSAGE ME. I am so lost right now

[whatsuprubberduck]

Friend: Hey, at least it’s not cancer.

Me:

[stephaknee]

DITTO.

[fapitalism-deactivated20120910]

[raisemysonbootlicker]

This is the money Patrick. Reblog so money will come your way

[gvldenhour]

“I’m getting back in line.”

[sniggadoodles]

OKAY but i just reblogged this last night and guess what i got today from my workplace’s self-audit!

THANK YOU PATRICK FOR FREE MONEY

[musinvenusian]

BLESS ME PATRICK

[lily-d247]

PATRICK I HAVE NEVER STRAYED YOU KNOW HOW MUCH I LOVED YOU

[ghara2]

@billshitposts

[billshitposts-deactivated201608]

*rolls sleeves* aight dude lets get me some money

[merakid-0]

Can i just *Gets in line*…there

[rosaymami]

Can I just.. Scuse me .

[gonebutnotforgottenlmao-deactiv]

come on patrick lets do this

[weallcaretolittle]

Patrick ma Negus

[scolilife]

Well tomorrow I have a balance test to determine if I really have vertigo. Please wish me luck/message me with what actually goes on in a balance test because I am a little nervous

[holding-you-down]

My joints can’t even hold themselves together what makes you think I can hold my life together

[scolilife]

I was just diagnosed with scoliosis and I'm 21. The only reason it was found is because I'm in so much pain. I have an appointment Monday with an chiropractor on Monday, and I'm really scared. Do you have any advice?

Try your best not to worry yourself. Yes, you have scoliosis but you will still be able to do many of the things you love, and then some! 

Though a chiropractor is great, i wold also recommend making an appointment with an orthopaedic surgeon. The surgeon will be able to get you an accurate x-ray of your spine to determine how serve it is and if you need treatment. 

I think the best thing is to just keep yourself occupied and talk to close family and friends about how you're feeling. They may be able to help you feel more calm

[hypermobilebecca]

I hate that chronic illnesses come with other chronic illnesses it’s like a buy one get one deal from hell

[chronicyoga]

First MRI done! I was a bit nervous, but it wasn’t too bad. I can’t wait to really see what’s going on with my spine!

Is anyone else fascinated with diagnostic imaging and seeing inside your body?!

[scolilife]

YES! i always request to see my images at appointments and I am very fascinated about learning HOW my conditions came to be, especially when they are genetic. I also love watching the phlebotomists draw blood because i am fascinated with the procedure. I also think it has become my coping mechanism. But im glad i am not the only one who is so interested

[disabledmeansicantfuckingdoit]

There Is a Girl In My Class

There is a girl in my class. I knew that I recognized her, but I couldn’t place her. True, I had seen her at a table in the library, sitting with a group of other disabled students. I vaguely remember wondering if there was a club, and if I could join. But that wasn’t how I knew her. There was an interaction, easing its way into my brain.

As I sat next to her on the bus, I remembered.

She stood for me once, on the bus. It had been stuffed full, and I had my cane. I squeezed my way onto the bus, near the entrance. “Federal law requires these seats be made available to individuals with disabilities,” read the sign. The bus began to move, and I lost my balance. I didn’t fall, the bus was too crowded. But I was bounced between riders like a ball in a game of keep-away.

And she stood. She had a visible palsy, and it restricted the use of one of her hands, but she grasped the handlebar and said, “you can have my seat”.

I thanked her and sat, unsure of what else to do. She got off a few stops later.

“Hi,” I said haltingly, “I’m in your class. And, uh, you stood up for me on the bus, once. So thanks for that.”

“Well,” she said simply, “no one ever stands for me.”

No one cares for our needs but us. So it’s very much in our best interest to look out for one another. Thanks again, Ashna. Thanks for understanding.