Outside.

I’ve sat in my chair and just stared outside.
I hadn’t been outside in weeks. I was too sick. I couldn’t even leave my hospital room at some points

I would watch people walk fast to get to work on time, I would watch people talk and eat and just live.
I longed to go outside where these people lived.. How were they living, so easy?
And I wondered.. How do they not notice what’s happening in the 9 story building right beside them. It’s all you know. How could they not?

How could they not know what was happening in between my 4 walls? And the halls around me? How could they not hear the screams that I could hear every time I closed my eyes?
How could they not hear the loud piercing beeping noises that sounded more like music to me and each monitor and IV pole had there own beat. How?
How come everyone else was outside just going on with life while it seemed like on the inside everyone’s life was slow motion?
I could sit at my window for hours.
Watching snowflakes fall, rain drip, sun shine, the bright moon, and the way the stars sparkled, I would watch the sun set, the colors were so beautiful despite how ugly the world could be.
Still no matter what the weather was, what was happening around me, these people still all had no clue.
No clue a 16 year old girl was staring out her window watching them live, while just a week before she was so sick unable to even sit up.
No clue that 4 stories of a children’s hospital were filled with kids staring, wishing, pleading to live just like them.
Finally I went outside.
And I let out a huge sigh of relief just as I was wheeled out into the sunshine..
You don’t realize that outside is so breathtakingly beautiful until you go months of being confined to the same 4 walls.
You learn to love the warmness of the sun on your face, the breeze of the wind in your hair, the smell, the crunch of leaves, the coldness of winter, the smell of rain, the colors of the sky that makes you thank god you’re alive.

1/19/98

For the last two and a half years of my life, everything about me has been based off of numbers, percentages and statistics. 1/19/98, 16 years old, Female, Transverse Myelitis, complete paraplegic, that’s how I’m remembered, or at least in the medical world..

The statistic of – 1/3 with Transverse Myelitis recover practically, 1/3 completely recover, and the remaining 1/3 show no recovery at all.
That’s what I would get told if I asked if I’d ever walk again.

My parents, doctors, physical therapists, the nurses and neurologists, or really anyone for that matter, would all have this look, that they didn’t know if I’d ever walk again..
At 14 years old, I just wanted reassurance but they unfortunately couldn’t give it to me.

Or the statement that still chokes me up every single time.
– “Generally, people who experience a rapid onset of signs and symptoms have a worse prognosis than those with relatively slower onset.”
My onset was in 5 minutes..

1 minute I was hurting, 1 minute I was in a ball shaking thinking “I’m pretty certain I am dying” 1 minute I was walking and the next I wasn’t. The thing I spent my first 3 years of my life working to master, was gone. Just like that.
I couldn’t move my legs, I couldn’t feel them, and I couldn’t walk.
And that was the last time I could, the last time I could stand without thought, the last time I could feel my hand against my thighs, the last time I could dance freely, the last time I could just simply jump out of bed, it was the last time I was innocent, the last time I had no worry.

February 2nd, 2012.. 7:15 AM was the last time I thought I was untouchable.
Who really remembers what they ate, what they said to their family, what they watched on TV, how they smelled, what they wore and what they thought of from over 2 years ago?

I remember it all too well, the look my twin brother gave me, I remember he was just as confused as I was.
I remember him sitting next to me on the freezing bathroom floor holding me up. I couldn’t sit up anymore. How could that have happened to me?
All I remember thinking was I had to keep my eyes open, and if I closed them, it could have been the end.
And I didn’t want it to end. I was only 14 years old!!
I hadn’t really lived yet, I hadn’t loved and I hadn’t even graduated the 8th grade.
I remember my dad frantically running away from me to call my mom. I will always remember the crack in his voice, as he told my mom that I couldn’t walk.
I remember the car ride so very well, I looked at myself in the mirror and I don’t really remember what I thought.
I wish I could of told myself “hold on, it’s gonna be a rough ride”
I also, remember my dad running through the house trying to find his keys, I remember him running down the stairs and jumping into his truck and going as fast as he possibly could go, to get me to the hospital.

I remember it being silent. You could hear a pin drop.
I remember very clearly, my dad telling the lady in the emergency room, “she can’t walk, she can’t move her legs anymore! Do something!”
I remember throwing up, I remember being calm from spinal shock I believe.
I still kept telling myself that I really had to keep my eyes open, and every single time I’d almost fall asleep I’d wake myself right back up again.

And from that day on, I became a number, a date, a barcode, a statistic, and a percentage.

I know that I seem kind of unlucky.
I know I’m looked at as a “sad story”
I know I’m looked at the unlucky one who didn’t get a recovery like she wanted.
I’m looked at as someone who doesn’t get a break, who is different, who goes by her own books.

And that’s why I know I’m not a number, a barcode, I’m not. I’m a person. I’m not a disease, disorder, a syndrome or whatever you want to call it.

I’m not my birth date, I’m not my age, I’m not my weight, or the color of my hair. I’m all the books I read, all the words I speak, I am my smile, I am the small dimple in my left cheek, I’m the sweetness in my laughter and I’m the songs I sing so loudly and proudly, I’m the places I’ve been to and the one I call home, I’m  all the things I believe in, I’m the people I love, I’m the pictures in my room, and I am the future I dream of.
I’m not Transverse Myelitis.
I only have Transverse Myelitis, but it doesn’t have me..
I am not what you see, I’m not my scars, I’m not a wheelchair, I’m not a diagnosis, I’m Alex and I’m not part of a 1/3rd, I’m not just a name in a computer, I’m not just a patient, I’m not just a student, I’m not just another sad story.

I’m Alex and my story isn’t sad, it’s beautiful.

Dreaming.

I go to sleep excited, every night in hopes maybe I’ll dream that I’m dancing, running, jumping, skipping, laughing, on a beach perhaps.

Sand between my toes, cool water on my arms, warm sun on my back, slight breeze on my legs.
No worries, just the sound of the waves crashing against the shore.

When people say you don’t realize what you have until it’s gone, I never knew what that truly meant. But now I really really do.
You live your life thinking it will go one way.
You plan and you prepare.
Because really, who thinks anything bad happens to THEM? Bad things only happen to other people, on TV, on the news, in the newspaper, but never to you.
But then all of a sudden.. YOU are the “other people” you are the story on TV. Your story is on the news, and you’re in the paper.. Then you realize bad things do happen.. everyday, to anyone, it doesn’t matter who you may be, how old you are, what you look like, if you are rich or poor, or how smart you are. It really doesn’t matter.
I knew people got sick, I knew people were in wheelchairs, I knew. But why would I ever be one of them?

I was always safe, I wore my seat belt, my helmet, I looked both ways when I crossed the street, I was always the careful one in my family. I was the healthiest, I was the innocent, carefree, “in her own world” kinda girl.

I was untouchable.

So I thought..

I was walking one day, then the next I wasn’t. It’s that simple.

I went from hurting thinking it was the flu to being paralyzed within minutes.
When that happens.. What do you do? How are you supposed to live? How are you supposed to have kids? Live alone? How are you supposed to live without your legs? How do you get by when half of you is always missing? This isn’t how my life was supposed to go, I was untouchable, right?

If I could live my life over, I wouldn’t change that I was so unaware, I wouldn’t change that I was innocent, I would not change a single thing. No one can take away the dances I’ve already had.

But now since I AM aware, I can only make everyone else aware too.

So here’s the only advice I really have for you,
Dance, dance until your legs hurt.
Run, run for those who can’t.
Love, love with every ounce of your being.
Laugh, laugh so hard you can’t breathe, laugh until you cry.
Don’t be too serious, I mean..No one gets out alive anyways.
Go on vacations, you can always make money, you can’t always make memories.
Don’t forget.. Kindness is free.
No matter how you feel, get up. Dress up. Show up. And never give up.

NOTHING EVER happens how you imagine it will.
And whatever is good for your soul? Do that.
Even if it is just dreaming.

Dear, Transverse Myelitis

Before I had Transverse Myelitis..

I never EVER heard of it, now I can’t EVER unhear it.

It is plastered in my brain forever.

An only 18 letter word ripped a 14 year old girl from her perfect life and threw her into a crazy one, ripped her apart, took away her legs, her freedom, her 8th grade school year, changed her whole life as she once knew it.

Just a 18 letter word that dictated my future, dictated my hopes and dreams.

An 18 letter word has changed thousands of people.

I don’t want anyone to feel the pain I’ve felt, the pain my family has felt. I don’t want anyone to know how it feels to not be able to walk, to look at your legs and they don’t even feel like your own and they just don’t work no matter how hard you try, they just don’t. You can stare at them for hours, but they won’t move. No matter what you do.

This 18 letter word has changed my lifestyle, my abilities, who I talk to, who I love, who I trust, how I think, how I feel and who I am.

This disease has made me become who I always have wanted to be, but never really knew how to become.

I didn’t know what I wanted to do with my life, I didn’t know how I was going to help people but I knew I wanted to, I didn’t know how I was going to change the way people think, but I knew I HAD to.

I had so many thoughts and ideas but used to be SO AFRAID of what everyone thought. Terrified and self conscious.

I was afraid they’d not agree with my thoughts, I was so so very afraid. So, I didn’t ever, not even once speak up.

This 18 letter word taught me how to speak up, even if I was afraid, even if everyone laughed, even if no one agreed with me.

Transverse Myelitis, taught me that even if you’re scared, you have to do it anyway. You’ll regret not doing it and you may never have another chance to do so.

This 18 letter word has made me KNOW I want to work in the medical field, with children.

Now I know that I have a voice and before, I just never knew I did.

This stupid 18 letter word isn’t who I am, or what I am. Not one bit.

It’s a tiny part of me, this 18 letter word has made me become me, and even though I truly do hate TM with a burning passion..

I do have to thank it for teaching me so much, for showing me- my thoughts matter, teaching me to always live each day as if I’d never have another, showing me what’s important, showing me that it really doesn’t matter what everyone thinks, it only matters what YOU think of yourself, and if YOU love YOU, nothing else matters.

So..

Dear Transverse Myelitis,

Thank you. Without you, I wouldn’t know who I am. Thank you for the lessons, thank you for showing me that walking isn’t everything, thank you for showing me my real friends, thank you for making me brave, thank you for giving me the people that I’ve needed all along, thank you for keeping my life interesting, thank you for knocking me down but letting me get back up again, and finally, thank you for being so horrible.

Because you taught me that there is so much good in the bad, nasty and horrible, you just gotta find it.

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I’m 16. Not a super hero.

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People often tell me “I’m wise beyond my years”
I never really knew what they meant.

I mean I was a completely normal innocent teenage girl who was in school one day then I was scooped up & put into a hospital full of adults, full of adult things the next day.

But what people don’t know, is that I know how to talk to doctors, I know how to talk to parents, I know how to act in front of different people.
But if you put me in a room full of other 16 year olds, I would be just like them.

People forget that..

They forget that I’m just a 16 year old girl.

People often times expect me to act a certain way or be a certain way..
They expect me to be strong all the time, brave all the time.
I’m not, I cry just like everyone else.
I’m not brave all the time, or strong all the time either.
I’m human.. Not this super hero..
I cry, I scream, I fall apart.
I have days where I really feel like I just need to cry..

I’m just like every other teenage girl. I like makeup, magazines, I like shopping, I love to have fun, I’m a little boy crazy sometimes….

I’m not an adult like people portray me as.
I’m 16.

I know how to act adult like though, I know how to talk to adults. I’ve been around very adult things and I’ve heard and seen things that make me able to talk like an adult.
And I’m mature because I’ve had to be, I know a lot of adult things & I know things most teenagers do not.
I’m more like an adult in the way I look at problems and situations, I’ve found myself when other teenagers haven’t yet.

I just don’t want anyone to ever ever think I’m strong all the time or I never cry or I’m “so perfect” because I’m not.
I cry. I fight with my brothers. I’m not perfect whatsoever. I sometimes block people out if I’m sad,
I cry when I’m mad. I don’t handle everything perfectly and I am not all sunshiney all the time. I roll my eyes, I shrug my shoulders, I act like a teenager. Because I am one.

I don’t want anyone to treat me differently because I’m “wise beyond my years”
What I mean by this is, I don’t want to be talked to like I’m an adult. I’m a kid. Just a kid. I may be different than some teenagers, but I like to be treated as I am.. A 16 year old girl.

One time I was having a melt down and someone made a remark something like this.. “After all she’s been through… She’s crying over this!?”

I can cry when I think I need to! I sometimes actually cry over really dumb things…what human doesn’t cry!!!? 

I usually cry over things that are small.. But when it comes to bigger things I don’t cry.
I don’t want to be looked at as a super hero.
I’m a regular person who just deals with this life I have.. That’s all, really..

I can’t make Transverse Myelitis to away, I can’t make my legs work, I can’t make my adrenal glands work, I can’t make my back healthy, I can’t stop these things from happening..

 I can’t make this all go away..As much as I’d love to, I can’t.. All I CAN do is just keep living my life as I am. 

I’m the same Alex I’ve always been.. The weird, quirky, “won’t stop moving”, loud, dramatic, laughy girl.. I’m still me.

I’m just like you..
I just get around a little different, this doesn’t make me a super hero.

I have no other choice but to just keep moving along and keep dealing with all the things I’m given. It’s that simple.
I’m 16. Not a super hero.

 

 

Update!

I know I’ve neglected my blog..
So here’s I am! I’m back.

My surgery didn’t go the way it should’ve.. But.. As Kim (pt) says “why did we think this would be easy.. I mean you ARE you..” I don’t exactly do things as expected.

SO the actual surgery went fine. I needed a blood transfusion but that’s normal. I woke up SO SWOLLEN. I had to have 4 liters of fluids.
I woke up in agony. (This may be dramatic!)
I woke up in tears and to have 3 nurses measuring cuts on my face that were dripping blood. Fun? And I was so confused haha.
I was in so much pain that I was hyperventilating (making my heart rate & blood pressure go up.) the I got very calm once they let my family come in to see me.. I was on a lot of medications so I kept forgetting to breathe.
But finally after 5 hours I was stable to go to a floor.

I had so many lines, drains, leads and wires..

Then I did great! But I couldn’t eat. I was too nauseous. So I got a piccline for TPN (IV nutrition) & lipids (IV fat)

Then a few days later my back started draining. It was draining because I wasn’t getting proper nutrition for a week. So my surgeon, put a small wound vac on at my bed side (I was awake..)

Then on January 19th it was Matt and I’s 16th birthday 😀

And on January 20th I went BACK into the OR for my back to be reopened & get my back cleaned and then a HUGE wound vac got put in. Keep in mind my back was open but was held together with the wound vac. So it drained a lot into a drain thing.

It’s like a vacuum.
Then I needed 2 blood transfusions. My hemoglobin was very low.
I was so pale.
Then 4 days after I got my wound vac out. I had just a drain.
After my wound vac was out, I was doing good. My wound “infection” was good.
I got my piccline out as well & started eating well!
I had blood sugar problems but I was good..
THEN. On February 9th
I began having fevers. I was put in isolation, which I do not like.
I was short of breath and in a lot of pain. I got a CT scan with contrast.
It showed 2 pockets of fluid around my spine & my lungs looked fuzzy.

I am a very hard IV access so I got another piccline put in.

 I got SO MANY X-rays of my piccline and my chest!
So I was on every IV antibiotic ever. And we found out I have some type of an adrenal gland problem. I don’t produce the steroids my body needs. So I have a possible Addison’s disease diagnosis.
And the fluid pockets were a “hard ware infection.”
I was really really sick.
Isolation sucks..
But then after I had my infection, I was really weak.
When I started PT again, they tried helping me sit up but I needed 2 people to get me up. I was using all my arms to hold myself up. And I just felt heavy & tired.

Kim (pt) walked in my room and was like “only you..” hahaha.

But I had to get strong again. Which took 3 weeks. And now I’m home.
I was in the hospital for 2 months.

I’m slowly getting back to me again. Even though I have the Addison’s disease lingering.. I have to just keep going.

It’s a lot. I’m not going to lie to you. I’m not gonna sugar coat it.

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The running dream.

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(Pictures of me before TM.)

“If you can’t run with your legs, run with your heart”

This is my favorite quote.
A specially  for today.
I had a dream last night that I was training for a run that was coming up. And I was doing step ups on bleachers at the middle school I went too. Which kind of freaks me out since, 2 days before this happened I did that in gym and I felt unusually tired and my legs felt shaky. (This was probably due to TM, but I obviously had no idea, and didn’t think anything of it!)
 
My friend, Jyselle has a video of me and her and our other friend Sarah, dancing and jumping everywhere that day too. 
So this dream really freaked me out.
 
So back to the dream,
I was doing step ups and burpees in the gym, all alone.
But, I wasn’t walking how I used to. I used to walk with my right leg and foot turned in a bit and I never really walked anywhere. I danced, skipped and jumped every where, all the time.
When I was doing the step ups, I looked fine, but once I stopped I limped really bad and I would almost fall over.
 
As I was leaving the gym, I went into the hall way where the locker room and gym met and I picked up ARM CRUTCHES?!??? 
 Blue ones.. The exact ones I use in physical therapy.
 And there is stairs to go back down into the locker room.
As I was walking to go towards them, I waddled down them slowly. I walked into the locker room where there was a mirror and I saw that I had short leg braces on too.. (AFOs)
Then as I went up into the main gym all my friends were clapping and everyone was so happy.
I didn’t understand why…
Then my physical therapists Rosie and Heather come running over to me.. WEIRD?!! Right.. But they said “you’ve tried so hard for this.. You finally are walking.. You did it!” I then hugged them with both of my arms and my crutches fell to the ground.
 
Then I woke up..
I woke up with tears and I was shaking. 
 
This was the most real dream I’ve ever had. It was so vivid.. So real looking..
 
I’m still in shock..
I tried going back to sleep because I so badly wanted to watch myself walk again..
Even though I wasn’t walking easily or “normal” I was walking.. Pretty good.
 
So even though I can’t run right now, I can run in my dreams and with my heart.
I don’t know what this dream means but I really am confused by it..
 
But I can’t explain the feeling I had when I woke up..
This year is starting off with a lot of hope..
This year is gonna be a good one.
 

So life?? try me.

Yes, what I’ve been through has “changed” me.

It’s made me aware that children spend there childhoods in hospitals, hurting..
 my situation has made me stronger, smarter, happier & more grateful. 
I was forced to go from being a normal teenage girl who went to school, ran everywhere and danced to a girl who was surrounded by doctors, physical therapists, medicines  & learning how to do all simple tasks over again..
 
This changed overnight. 
I changed completely in a few weeks..
 
I never even got blood work before, or even set foot into Connecticut Children’s Medical Center. Which is crazy to think about since I go to CCMC 3-4 times a week, every week.
I know things most teenagers don’t.. 
I know what intubate & extubate mean. 
I know what the average heart rate should be at rest verses when doing activity..
I know what a A-line is and what it’s used for. 
I know when blood pressures are too high or too low and just right.
I know the different names of walkers.
I know brands of wheelchairs.
I know what a tracheotomy is..    
I know what a DVT is (deep vein thrombosis) 
Or when someone says PE I atomically think they mean a (pulmonary embolism) 
 
So yes I know a lot..way more then I did when I entered this journey…
And I wouldn’t take back  ANY of my knowledge that I’ve learned.. I’m way smarter now, and I really like shocking people with what I know.. I want to be in the medical field when I grow up, so I’m practicing!
 I wouldn’t trade what happened to me. I have more good days then bad days..
 
Sure I get pain but I can do it.. Pain is temporary.. IT GETS BETTER.
 
I think this happened to me for a reason, I don’t know the reason. I probably won’t ever know it, but there is a reason behind it..
So I don’t think I really “changed” I just became the person I was always meant to be..
I’ve fought and fought hard to become the girl I am..
And as I’ve said, I like who I am. 
And all my knowledge that I have learned are just from everyday experiences.. That’s how I think I learn best.. 
My New Years resolution is to never say “why me” 
Because I used to do this a lot, it’s hard to think about everything I’ve been through sometimes and the reality of it. And things I’ve seen have made me have bad dreams and flash backs and this is when I would question “why?” I’ve had days where I would scream “JUST STOP. LIFE, JUST STOP!!” Meaning that it’s just one thing after another.. But better words for that is “it’s just another hurdle..” And that’s all it is.. 
I don’t really say “why me?”anymore but my goal is to never say it again..
 
So life? Try me..
 
 
 
 

The little things.. Or huge things??

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I enjoy the “little things” in life..

These things may be very small to you guys, but they’re actually huge things to me.
 
Waking up and it being sunny makes me smile just as I wake up.
Going to physical therapy and listening to some kids talk and it’s just awesome.
Kids talk about way more interesting things then adults do..
One time I was waiting in a doctors office and I had my leg braces standing next to me and a little girl pulled her pant leg up and said “I have leg braces too!” And she modeled them and put her arms out and said with such eager “hug!!?” I then, of course hugged her.. 
Or another time I was admitted and I went into the play room and a little boy looked at me and said “what’re you in for?”
 
Or when Kim a physical therapist sat down with me for an hour and just talked to me. 
Being in my stander is something that makes me so happy, I really can’t explain it.
I just love being eye to eye to people and being able to hug people with both of my arms.
 
One of my favorite things is when someone holds my hand and walks and I don’t need to push myself.. I do this with UD a lot. 
 
I love the smell of cupcakes more then anything, I love the smell of after it rains, I love candles. 
 
I love going to the movies or out to dinner because I can get out of my chair and it just feels so nice.
 
Or when I accomplish something that I used to take for granted… Like getting out of bed by myself. Or vacuuming.. Trust me, vacuuming in a chair isn’t easy.. 
Or going on Pinterest and looking at puppies with Jill.. 
 
I love singing as loud as I can in the car with PJ or my mom.
 
I just love doing things I used to, even if they’re more challenging.. 
 
I love a lot of things. 
 
Or laying in the snow and drinking hot chocolate after..
 
Holding babies, taking bubble baths, finishing homework, going to target, making people laugh, wearing capes, eating candy, or crawling/scooting all along my house, cuddling with my dog, hugging my mom after she’s been at work all day, face masks, tea, pancakes, syrup, brushing my teeth, plopping into bed after a long day, going on walks, going to the park, going on the swings, puppies, car rides, the smell of stores, posters, baking, glitter, flowers, cookies, paint, chalk, turtles, belly laughing, soap, purple, mugs, air ports, holding hands, stickers, flip flops, sunglasses, decorating, new books, learning, lady bugs, helping helpless people, giving money to homeless people, smiling at strangers, dancing, fruit, rainbows, cuddling, hugging, Disney movies, seeing someone you’ve missed, skipping.. 
 
I honestly could go on forever.. It’s seriously endless. I love life honestly.. 
I think being around bad things I’ve become more grateful for small things..
I just am very thankful for all the big things, and little things.. 
And I think if little things
don’t make you happy, you’ll never truly be happy..

 

How I cope.

“How do you cope?”

I get asked this many, many times.. Daily.
The way I used to cope was if something wasn’t going my way, I would stop talking. Ignore everyone and shut everyone out.
Or I would refuse to drink, I have no control and my water intake was my only way of controlling anything.. So I wouldn’t drink.
I would take my anger out on my family.
I would lash out.
I didn’t do this everyday. But this is what I did for about the first 6 months post TM.
I know now this obviously  wasn’t a healthy way to cope.
I didn’t show anyone expect my family that I was having trouble coping.
I’m really different now then I was then.
I’ve grown up.. A lot. Maybe too much.
Now I don’t really have times where I feel like “it’s too much” I know I wouldn’t face anything in life, I couldn’t handle.
The way I cope now, is I talk about how I feel when I feel upset, I write, I call my friends, I FaceTime Kathy, I go on car rides with my mom, I vent to my brothers, I get off of social media.
I don’t tweet, I don’t Instagram, I don’t complain on Facebook statuses. Cause in the long run the way I was feeling was only for 10 minutes then it goes away.
I rarely cry, which I sometimes think is a bad thing.
But when I cry, I let myself.
I know I’m strong and crying does not make me weak.
I wasn’t good at coping with everything before.
I used to just think of everything I lost. I now look at everything I’ve gained.
Sure, I lost my legs. But I didn’t loose my spirit. And I refuse to let anything take away my spirit.
Being a teenager is hard as it is, but when you scramble health problems in there, it’s obviously hard too.
I just don’t over think anymore, over thinking creates problems in my head that don’t even exist. The truth is, we all worry about things that most likely will never ever happen.
I try my best to just be calm.
Yesterday I felt anxious randomly, I didn’t know why. But I just turned my iPad off, I sat back and breathed.. And I felt better.
The more I think of the extent of my surgery the more I get freaked out. So I try to just think of how my spine with be alined. My hips will be even. I will be comfortable.. And that helps me.
I guess what I’m trying to say is, the best way I’ve found to cope is to just stay calm and let life bring you wherever it needs to.
I’m just going to trust my journey.
It’s hard to sometimes, but the more I trust it, the easier everything becomes.
I have to not let little things bother me.
If I just stay calm everything is easier to cope with.
I’m not saying, my situation is easy, because it’s not.
I have nerve damage in my neck, I can’t tolerate the heat. I have very bad sensory problems, my hips hurt, my back hurts, my legs burn and tingle 24/7, I get shaky, I get dizzy, I get sore, I get fatigued, I get UTIS, edema of my legs, I get blood clot scares a lot, I’ve spent weeks in the hospital, I feel weak sometimes..
But guess what? I’m alive and I’m doing the best I’ve done in a long time. And there’s millions of people who have it way worse then I do..
so as long as I live I refuse to let ANYTHING stand in my way of thriving. I refuse.
Sure coping gets difficult, but I’m not going to let the way I feel just 5% of the time dictate how I feel the other 95%..
I’m just going to stay calm..
So life? What else you got?? I know you’re trying hard to kick me down, but it’s not working!!