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..
 
 
 
 
Advertisements

The little things.. Or huge things??

ImageImageImage

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!!

 

I believe in me.

ImageImage

I heard on the radio today about a place that is ALL trampolines (indoors)

I love trampolines so much, I also know they aren’t exactly wheelchair user friendly..
Oh well.
There has to be a way I could go on the trampolines!!!
I really really want to. So I’m thinking I’m going to get a bunch of the boys in my life together and they can bring me!
So we will see about that one.
I really want to though, I don’t want to go and have someone say I can’t..
I hate feeling like being in a wheelchair can take away certain things from me.. It can take things away, but I’m refusing to let it!
I keep telling myself this quote –
“I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”
This is very true. I will never ever let what I can’t do interfere with what I can do.
I think we all focus on what we can’t do & what we want to do.. But we never realize what we can do and what we are able to do.
I’m not disabled.
I’m differently abled. I have a different way of going about with “simple tasks”
I can do just about everything you can. You’d be surprised what I can do. Trust me, I’ve done things people said “you shouldn’t and can’t do that”
I wasn’t supposed to be able to sit up myself, but I can.
I can transfer independently.
I can get into the bath tub all by myself.
I can crawl up the stairs alone.
I can pull myself up stairs alone also.
these things used to be simple, as all things. But now they are huge milestones..
You all jump out of bed and think nothing of it.. I used to. But little do you know, these things can be gone in seconds.
I can’t count how many times the odds have been against me.
The statistics for recovery of TM is 1/3 recover partially, 1/3 don’t at all and 1/3 do completely.
And the prognosis of recovery is 2 years and past that, you won’t get much after.
This is so false. I don’t care if it takes me 20 years, I will be able to walk.
But while I can’t, I won’t beat myself up over it. I will keep pushing while I have to.
But those statistics aren’t based off of someone like me.. With my determination. My will power, my passion..
every odd can be against me, I really don’t care. no one can tell me what I can and can’t do but myself.
every person ever could believe in you, and if you don’t believe in yourself it doesn’t even count. If you know in your heart that you’re supposed to do something, do not let ANYONE OR ANYTHING hold you back. “What you can and can’t do is up to you” (quoted by my wheely good friend Kariel ♿❤)
So I can’t listen to these doctors who have seen one other person with TM.
I won’t listen.
 I believe in me and that’s all that I need.

Do what makes YOU happy.

Image

“There are going to be days when you won’t have the energy or drive to get out of bed – when you’re going to want to give up on love, life, or school. The thing is, you’re not allowed to give up.  You were given a life and you’re supposed to live it. Sure, you’re gonna hit a few bumps along the way, but you’ve got to pick yourself up and move on.  Life is unpredictable and things might not always work out the way you want them to, but that’s no reason to give up. The truth is the seventy or eighty years that you’re given isn’t long enough to do the things you’re supposed to do.”

Most people don’t use there life’s to the fullest.
We are capable of so much.
We forget how far a simple smile can go.
Simply by giving someone your time is the best thing you can possibly do.
Life doesn’t always go the way we plan.
“Life is like a piano. White keys are happy moments and black keys are sad moments. But remember both keys are played together to give sweet music..”
 Life isn’t always sunshine and rainbows. 
You need some rain and thunderstorms sometimes.
Without rain, rainbows wouldn’t form.
Us people, can do so much.
We are very powerful, it’s up to us, what we do with our power.
You can’t give up, ever.
Do what makes YOU happy.
Nothing is worth it if you’re unhappy.
Do things you’re passionate about. Don’t give up simply because you’re having a bad day. You and I, and everyone else has terrible days. It’s life. 
Life is unpredictable, I couldn’t predict I’d be in a wheelchair. I couldn’t ever imagine it. But it happened and it’s not going away. And I can’t do anything about it. But I can work my BUTT off and never give up and just go with the flow.
 
If you want to travel, then travel.
If you don’t want to go to college, don’t.
If you want to go to school until you’re 50, then go to school.
If you want to be a stay at home mom, be one.
If you want to be a mailman, be a mailman. Even if your brother is a life saving surgeon. Even if your parents want more for you..
If being a mailman makes YOU happy then no one should tell you what you should be.
Just go with the flow, I promise life isn’t as bad as we all make it seem.
Life is pretty amazing, I must say and once you realize this, you’ll be truly happy.

 

Updates.. Woot!

Image

Once I get my surgery I’m going to be doing more daily updates on me.

Right now my blog is you getting to know me and my life better.
I want to update but I really don’t have anything exciting to update on. 
Today I’m relaxing. Tomorrow I go to my grandparents house for dinner and to spend time with my family. 
And on Christmas we wake up early and open presents and eat breakfast. 
On Friday I have physical therapy, I also have PT next Monday too. And thats my last PT until after my surgery. 
They’re discharging me from the outpatient services next week.
And Kathy (my moms best friend is coming back to CT on Wednesday!) 😀 
I don’t think I put on my blog that I had pre-op on the 17th. And I got X-rays and blood work.
My curve in my spine was 44 in September, but now it’s 60. So it’s progressing fast. My surgeon is most likely going to fuse my entire spine so that I don’t need another surgery in the future.
My surgeon is really chill which I really like. 
 
It hasn’t hit me completely that I’m getting surgery..
I kind of keep putting it all to the side.
It should of hit me already since it’s only 2 weeks away. 
But it hasn’t, I’m sure it will the night before. 
My mom still hasn’t talked to my hematologist about preventing blood clots post-op..
It should get figured out soon though.
For urology I’m on antibiotics right now.
I have no appetite either. I think it’s because I’m stressed out, even though I don’t feel stressed. But the antibiotics could be why also.
 
I really want to go skiing the weekend before but we will see about that 🙂
I’m excited for Christmas 🙂 & my birthday which is January 19th!
 

Heres to 2014.

Image

I really can’t believe 2013 is coming to a close soon.

I’ve learned so much this year.
I’ve grown up a lot since last year. 
This year has been really hard, yes. 
But it was so amazing too. 
I’ve gained so much more then I’ve lost.
I’ve went through things this year I really wish I didn’t, but they’ve made me grow a lot as a person.
I’ve laughed way more then I’ve cried.
I got my amazing stander this year, I learned to stand (with leg braces) without using just my arms to hold me up.
I became very weak, physically but gained it all back. I’m still not 100% where I was but I’m where I need to be.
I’ve met some of my best friends. 
I’ve gotten closer to all the people in my life..
I was in my hospitals commercial.
I found out that I have a passion for writing.
I’ve started setting up fundraisers for TM for next year.
I went to a run or dye.
I swam, 10 laps completely alone.
I danced, I jumped on my bed, I crawled up a flight of stairs, I crawled unassisted, I’ve found new ways to do things. 
I’ve realized life is simple. You get what you put into it.
 
I’ve fallen this year more times then I can count, but I’ve always gotten up.
 
 
I’ve found myself this year.
 
This year has really been hard. But I’m thankful for this year, thankful for the struggles, the laughter, the jokes, the sadness, the loss, the gains, I’m thankful for it all.
 
I’ve accepted myself.. I thought I wouldn’t, but I did.
 
I know that I want to help people for a living.. 
I know that I want to be an advocate for TM, and any disabilities.
I know that I want to make a difference. I found that all out just in 2013. 
 
I’m thankful for all the amazing times and the bad times too.
I have one goal for 2014 and that is to live my life to the fullest. 
I’m not going to try to be better then anyone else, just better then I was yesterday. 
 
So here’s to 2014.. This girl is ready for you! 
 
 

I’ll love you forever, I’ll like you for always, as long as I’m living my mommy you’ll be.

Image

Rena Berube. My mom..

If I didn’t have my mom, I would honestly be a mess.

My whole family actually.
 
But today I’m just gonna talk about my mom.
My mom and I are best friends. 
She has been there for every single thing.. When I’ve been in the hospital she wouldn’t leave me alone. 
She’s the reason I have it together.. If she’s a mess, I’m a mess. She knows me better then I know myself.
If I’m ever scared, I know I can look at her and feel better. 
We don’t even need to talk to know what the other is thinking..
I can be with her for hours and hours and never get sick of her. Of course we do fight, but we get over it in 5 minutes because we have to tell each other something..
She does everything for everyone all the time without ever asking for a thing.
She saves people’s life’s every single day. (She’s an ICU nurse.) 
Not a lot of people can do what she does everyday. 
She believes in me with everything in her and you can see it her eyes when I’m doing something I love.
When I’m transferring, she looks at me with awe. She doesn’t have to say that she believes in me, because I know she does.
When I’m standing in my stander, she just looks at me.. Eye to eye.. 
She gives the best hugs, and every time I’m in my stander I just hug her.. Because standing hugs are the best..
She will stay up all night with me if I can’t sleep, even if she has work for 12 hours the next day.
She rubs my back when it hurts so badly. 
She’s held my hand as I’ve lied in a hospital bed..
She’s the first person I always wake up to whenever I get sedated. 
 
 
She’s the one who will fight toes to toes with doctors to get the best care for me.
She made me get up the 2nd day after TM so I wouldn’t get pneumonia, she’s the one who found my blood clot.. Who made them do an ultrasound…
 
  
We laugh so hard together and she always knows how to make me laugh hysterically.. 
 
I adore her and can 
never thank her enough for everything she’s done for me.
I know she is my best friend for life. 
One day I will hug you eye to eye supporting my own legs and maybe even skip to the park.. Like we used to. I love you so much mom and I’m so glad I have you and that I get to be your daughter. ❤  
 

Create a free website or blog at WordPress.com.

Up ↑