Stuck Right Here

Six weeks later… here I am. I miss this space, and I think about it all the time. But currently I don’t feel like I have any thoughts worth sharing. Things are pretty negative around here. The best news I have for you is that I put my shoes on this morning without crying. Literal baby steps.

Last we talked I told you about the two part surgery that I was looking forward to. It was scheduled for mid October, and then cancelled. The insurance denied it. Multiple appeals later, still denied. I’m pretty devastated but holding on to the hope that my team will find a way around this roadblock. We have some options to look into, and other doctors offering to help. I’m frustrated, but my friends and family are pretty good at keeping hope alive for me. I probably won’t share any more about this surgery until the device is permanently in my body, just to keep you all out of the mess. In the meantime, I’m medicated and hiding from the world in my closet. It’s safe in there.

Like I told you before, I can’t make any promises of scheduling or content. But I want to be here. I have some ideas in mind- things I want to say/do/show you. In the next few days, I’ll be sharing a comprehensive review of the She Reads Truth Bible, and probably some cute pictures of my dog because we all know she’s the reason you’re here!It’ll happen as my life allows, and as I find the words and courage to keep this space alive. Until them, you know where to find me.

Tell me something good in the comments down below. Give me a reason to celebrate today.

With all the love,

A

It’s Not a Race

Today is my first day of senior year. I’m supposed to graduate in May and start a real job and be an adult. It’s supposed to be almost over.

I won’t be graduating in May. Or August. Or even next December.

If all goes according to plan (fingers crossed) Malibu and I will walk the stage in May of 2019. A whole year late, because I dropped out one semester, cut down to part time in the middle of another semester, and will continue to be part time for 4 more semesters. It’s been frustrating and exhausting and disappointing. I’ve spent a lot of my school days feeling like a failure as I struggle to balance life with school. It’s been this way since I got sick in the seventh grade, and I’m assuming it’ll be like this for every season of life to come.

Instead of continuing to feel defeated and disappointed in myself, I’ve been trying hard lately to appreciate the progress that’s been made. I’ve come much farther than I ever anticipated. I can remember a time when I thought my illness would stop me completely. There was a point in time when I didn’t think college was even an option for me. My first semester I went from walking to wheelchair almost over night, and still managed to get a 4.0. I worked incredibly hard to get myself back to school after taking a semester long break for treatment at the Cleveland Clinic. I’ve shown up to school just hours after being discharged from the hospital, and battled symptoms and fatigue just to make it through an exam. In fact, this past Summer, I had class Monday through Friday for 10 weeks straight and was only absent once.

These are all things that I never thought possible. As disappointed as I was that I’ll be in college longer than what’s expected of a girl my age, I’m equally grateful now to know that I do have the ability to succeed.

Who said college had to take four years and not a semester longer? It’s not a race. I’m not losing, and I’ll cross the finish line eventually. Until then, cheers to senior year (and the senior years to come!)

With all the love,

A

The Hope in Saying “No”

Hey friends! I definitely fell off the radar again, between moving into my new apartment and breaking my collar bone and turning 21, I’ve been a little busy. BUT! I have a ton of new things that I’ve been working on, and super cool opportunities coming up that I literally can not wait to share with you.

But today I’m a little broken hearted.

This morning I had the chance to buy really cheap tickets to tomorrow nights Ed Sheeran concert. I would get to go with a friend that I love and it would have definitely been a night to remember. I’ve been listening to the Divide album on repeat for MONTHS and it’s one of the only secular albums that I know every lyric to.

But, I can’t go. Why? Because I’m a sick kid.

The same reason that I can’t go to parties, movies, conventions, or even church some weeks.

I knew that I wouldn’t be able to go. I knew that the lights would stimulate my broken brain too much, the sound would hurt my bones to the core, and the crowd would terrify me to no end. I knew I wouldn’t be able to bring my service dog to help with my symptoms, and I knew that any medication I took would put me to sleep before we even arrived at the arena.

And yet, I still did everything I could to make it work. I could picture the perfect night that I wanted. The fun we would have, the memories we would make. I was excited and the anticipation of going was nearly unbearable.

Once I made the realization that I would have to say no, I was devastated. I’ve had to say “no” way more often in my life than I’ve been able to say “yes.” I’ve missed so many birthday parties, Six Flags days, concerts and even camps and retreats because my body forced me to say “no.” I’ve always felt deprived and isolated and less-than because of that.

My first question today was why did I get so excited when I knew the answer was going to be no? I knew this was an unrealistic situation, so why did I even bother entertaining the idea?

After being sad for a solid 4 hours, I realized that the entire reason I experience disappointment is because I have hope. If I didn’t have hope, there’d be no reason to ever get disappointed. For nearly an hour today, I had SO much hope in going to the concert that I completely forgot my limitations and pain.  I have the hope of one day living a normal and healthy life (whatever that may look like), so therefore it’s devastating when I am reminded of my current inabilities and differences. That’s not to say that my hope is lost, because it definitely isn’t. It just means my present reality has to be altered a little bit.

So at the end of the day, I’m feeling a whole lot of gratitude for my heart’s ability to find hope amidst devastation. I’m thankful for that hour of extreme anticipation and hope this morning that allowed me to completely forget the realities that I’m facing currently. I’m comforted in knowing that my hope has not been lost, and that someday I will get to have that perfect and healthy body- even if that might not be here on Earth.

With all the love,

A

A Life That Could Not Be

Saturday was my 21st birthday. I’ve been asked about my expected first hangover at least 5 times… But I’m not hungover. I still haven’t had a single drink. Well, if I am hungover, it’s the classic anxiety hangover that most of us know so well. 

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For the past few weeks, I’ve bounced back and forth between excitement and dread for the upcoming day. I made plans, I cancelled plans, I got excited, I cried, I told everyone it was my birthday, then I even wished it wouldn’t happen. 

Looking back, I realize that this is something I go through every year. It’s a sick kid thing, I’ve come to know. Kids like me fight so hard to get to the next birthday. To survive just one more year and hope for less pain and healing in the process. It’s meant to be a celebration of the victory of survival for us. It’s a day to prove our clueless doctors and their uneducated prognosis wrong. 

Despite all that, it’s still a day of disappointment for a lot of us. We can’t celebrate in the ways that we want. Pain holds us back. Anxiety paralyzes us. Unexpected tremors or infections don’t get put on hold for a birthday. Everything can still go wrong. 

I spent my day busy but pretty depressed, to be honest. Meeting my favorite friend for coffee turned into an internal war with myself because I was consumed in sensory overload and complete panic, but I couldn’t show it. I became trapped in myself and shut down to the outside world. I lost my “out loud” words for a solid 4 hours and had to sleep it off. 

I cancelled my roomie hibachi celebration at least twice in the span of 6 hours. The thought of being in public again was too much for me. We decided to go in the end, and even had to switch tables because I couldn’t tolerate the sound in the room. My friends kept saying “you’re safe with us” but my mind told me to run. 

An older friend that I trust a lot offered to take me out for my first drink. I wanted so badly to go and be a typical 21 year old, but instead I got in bed and cried. She showed up at my door and laid there with me. 

As difficult as this day turned out to be, I kept coming back to the same lyric from JJ Heller’s newest single Braver Still:

“Its ok to grieve a life that could not be.”

This is what chronic illness really looks like.

 The life that we had always dreamt of for ourselves is no longer a possibility, and that’s something we have to allow ourselves to process and grieve.
If you’re going through this too, just know that it’s okay for that grief to last a long time. Losing a life time of possibility and our own expectations of opportunities to come will definitely take some time. I’m 9 years into the pain, and daily think about my life that simply could not be.
Instead, I’ve been given a life that is so much fuller than I expected. My opportunities are just as abundant, even if they look different than I imagined. I’m 21 years old and have experienced things I never imagined possible, and learned more than I could have ever imagined.
I’m 21 years old now, and more grateful for life than I ever have been before. But even still, it’s okay to grieve the life that could not be. IMG_5031
With all the love,
A

The Girl With The Dog 

I’m at work right now.

I can hear my bosses footsteps down the hallway. He’s with someone. He asks if anyone’s working in the nursery yet.

“The girl with the dog is here”

I hold my breath.

“Allyson. Her name is Allyson.”

Sigh of relief.

I have major identity issues, stemming from the time I was little and first diagnosed with complex regional pain syndrome. From the age of twelve, I became known as a diagnoses. The acronym CRPS became attached to the end of my name. Doctors knew my symptoms better than they knew my personality. They knew my favorite medicines better than they knew my favorite foods. They knew the name of my favorite hospital staff better than they knew the name of my best friend.

I became “the girl who can’t walk.” I was introduced as “Ally with chronic pain.” I was more often a patient, rather than a person. I was my own disease.

When I came back to college after learning to walk in 2015, I was able to shed that identity. My new friends didn’t have to know sick-Ally unless I told them about sick-Ally. Strangers didn’t know I had a disease, let alone any pain at all. I was finally Ally… for a bit.

Then I glued a service dog to my side. I gave myself a 70 pound visible sign that said “hey look at me!!!! Im disabled!!!”

Please don’t misunderstand. I love my girl more than anything. She saves my life daily, that’s why I have her!

But when people see her and not me – when people acknowledge her and not me and ask her name but not mine – who do I become? I’m no longer Ally. I’m the girl with the dog. I’m Malibu’s handler. I’m a second thought.

But, I’m not any of those things.

I AM Ally. I’ve been Ally this whole time, and will continue to be as long as the Good Lord let’s me. I’m content knowing that HE knows my heart and sees my every quality, good and bad, for what I’m worth. My identity is much more secure in Jesus, rather than in my dog or my former wheelchair-bound life.

So, I want to challenge you. Are you seeing people for who they are? Or are you seeing them for what they have – a disability, a child, a dog, a different appearance? Do you know them? Like, really know them? Or are you going to let them continue to be seen as “the girl with the….”?

With all the love,

A

5 Ways to Manage Chronic Illness in College

Happy Tuesday friends!! I want to introduce you to one of my favorite blogger friends, Liu! Today she’s sharing her top 5 ways of managing chronic illness in college on my blog, and I’m sharing my top 5 things to bring to college on her blog! Make sure to leave us a comment telling us how you manage your illness at school! 

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Hello, my name is Liu Miao and I am a college student. I am done with my second year and very excited. Psychology is my major and Spanish is my minor. There is one thing that most people don’t realize that I have. I have chronic pain and some other health problems due to my physical disability. I try not to show my pain to others. Since I started college, my health got worse. Having no energy and pain when moving or siting are some of the things that I have to deal with in college. I do take medicine for my health problems; however, there are things that help me cope with having a chronic illness in college. This is to help incoming freshmen to prepare for college and be successful. It is hard being a college student with health problems but it can be done.

  1. First thing is to rest. Going to school and doing simple tasks take a lot of energy for me. I tire very easily and it is important to get rest. Yes, I know that as college students we are busy but rest is very important. Not having enough rest is not good for our health. I am a firm believer in naps. Sometimes I need to take long naps and sometimes I take short naps. I even nap in the car and nape while waiting at the doctor’s office.
  2. Food is another way I cope. Yes it’s not the healthiest option, but it makes me feel better. Having your favorite food can make you feel better. Coffee with friends helps me forget about my illness and worries. Indulging in snacks and candies also makes me happy. I am a big fan of gummie candies and spicy Asian foods.
  3. Keeping my self warm is also important. Since I have severe joint problems, it feels good when my joints are kept warm and toasty. Taking a hot shower/bath, sitting in a hot tub, and using a heating blanket are ways that keep me warm.
  4. There are times a good cry is needed. Life can be very overwhelming and crying is a good solution. It feels good getting all those feelings out. I prefer crying alone but sometimes I need a good friend to cry with.
  5. The last method is letting my emotions out in a calm way. This includes talking with a friend, doing a creative activity, listening to music, and physical activities. These activities help keep my mind off struggles. Writing is the best way for me to express my thoughts. I love blogging and helping others through my writing. Hand lettering is also one of my favorites.

It is hard dealing with a chronic illness in college, but you have to make the best of it. There will be hard days and some easier days. Managing chronic illness in college is so important.

~Liu Miao~

Malibu Monday

Hey friends! Been a little while, I know. Life got insane for a second… and it’s about to get a whole lot more wild.

My heart grew by 78 pounds yesterday!

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before she found out that she had a home! 

Meet my girl Malibu!

Malibu (Mali for short) is a 4 year old Great Pyrenees mix- likely with St. Bernard. She’s a big girl with a whole lot of fur! I rescued her yesterday from one of my favorite shelters, and could not be more excited to love this girl for the rest of her life.

Mali is adjusting well to her new home, but she’s a bit sad. The last few weeks have been rough for this girl. Her owner was killed by a drunk driver, and Mali and her brother were surrendered to the shelter. Mali loved her brother and was glued to his side, but unfortunately he was adopted without her a few days ago. Sweet pup is learning how to live and love independently now – but hey, so am I!!

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So far her favorite things are naps and walks!

Here’s the best part: Malibu is my Service Dog In Training! Within a few months, she will be trained to help me with a multitude of tasks relating to chronic pain and also anxiety and panic. She’s going to save my life even more than I saved hers, for sure.

We are so excited to begin this journey and document it along the way!! I hope you come along for the ride to see this sweet girl from sad dog to service dog!

With all the love,

A

What I wanted to tell you

I wanted to tell you everything. I wanted to tell you what I did today, the conversations I had, and the places I went. I wanted to tell you how I saw Jesus around every corner. You wanted to know. I wanted to tell you.

I couldn’t.

I wanted to tell you that I was sorry. I wanted to tell you that it wasn’t your fault, but it also wasn’t mine. I wanted to tell you the truth.

I lost my words before I got the chance. The English language literally slipped out of my grasp before I could even take another breath. I was paralyzed. You were frustrated.

I wanted to tell you why:

I have anxiety. Real, physical, diagnosed anxiety. The kind that requires the maximum dose of daily meds, and an extra bottle of pills for panic attacks – panic attacks that make me feel like I’m dying. I feel like I can’t breathe. The world slows down, the walls close in, and I can’t hear anything over the sound of my own pounding heart. I panic more often than I wash my hair. This is my reality.

You told me to relax- to breathe more.

“Just calm down,” you told me. “Use your words.”

I wanted to tell you that I can’t. Anxiety is a part of me. It’s not a phase. It’s not a “moment.” It’s a lifetime. I wanted to tell you that it is more frustrating and confusing for me than it ever will be for you.

I wanted to tell you what it’s like to be trapped in my own mind. I wanted you to know what it’s like to feel like there are too many people in the room, when in reality you’re home alone. At the same time, I wanted you to know the feeling of being completely unseen and unheard in a room full of your best friends. I wanted you to know what it’s like to go from feeling safe to feeling threatened in less than a minute, all because of one thought that triggers another that triggers another that triggers another. I waned to tell you what it’s like to lose your words, leaving you defenseless and helpless.

I wanted you to feel it. I wanted you to feel anxiety and panic.

But then I realized, maybe you do.

Maybe you’re hiding it like I did. Maybe you feel like anxiety took your voice too. Maybe you were also told that your anxiety isn’t real or important. Maybe you think that anxiety makes you weak or less than.

I want to tell you that I felt the same way for way too long. I want to tell you that I’m listening and I’m here and it’s okay.

I wanted to tell you that I love you, but anxiety told me not to.

I want to tell you that I will love you forever anyway, because at the end of the day, anxiety doesn’t get to tell me how to live.

With all the love,

A

 

 

Six Years Later

(I’ve sat down to write this too many times to count. I’m not one for writer’s block, but here it is)

Today’s the day we celebrate my life. Every year my friends and I get a cookie cake and balloons and we eat all the food and and blow out all the candles.

img_3487It’s not my birthday

On January 24, 2011 I went home from the hospital after several weeks of the most intense treatments I have ever experienced. Going in, I couldn’t use my right leg or my left hand. I couldn’t sleep, eat, or go to school. I couldn’t live. Going home, I was finally free and fully functional.

I was in remission. 

You’ve heard about my experience with CRPS for the last eight years. You’ve heard about the diagnosis, but what I rarely talk about is the remission – the brief “normal” patch stuck right in the middle of my journey.

January 24 is a day that I wasn’t promised. Most doctors know not to promise a patient anything, especially something as drastic as remission or a cure. I never expected my second chance. I thought that this illness was my forever fate. I thought I’d never walk again. I’d never go back to school. I’d never get the chance to do anything or be anyone. I never said it out loud, but I went into that hospital expecting nothing. I felt like I had nothing left in me, and definitely no hope to offer myself. I was done hoping, done dreaming, done praying. I was done with everything just short of breathing.

All I knew was pain. I didn’t remember the “before” CRPS Ally. I didn’t remember normalcy. I didn’t know what we were fighting for, so when we finally achieved remission I was shocked. Everyone involved will tell you that it was an absolute miracle.

I remember January 24th as the first day I got to experience life. I may not have known it at the time, but that was the day that I was no longer a victim, but a survivor. I left the hospital and learned what it meant to live. Every moment for the next several months was a new experience. From the big things like going back to dance, running and driving without pain, to the little things like wearing a shoe, opening and closing my hand, and sleeping unmedicated.

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A note from my main doctor

I relapsed three years later (let’s not talk about that today).

January 24th is my reminder that this is not forever. Hope is real, and so is remission. Pain in all forms is temporary, and I believe that someday we will all break free from it. We will all have a new life – a second (or third…) chance. I’m remembering that today and every day as I continue to fight for the life that I know exists.

 Today we eat cookie cake and celebrate life in all its forms. Today we’re grateful for the miracle I was so graciously given 6 years ago. Today is not my birthday, but today my perspective on life turns 6 years old. That’s more than enough reason to celebrate.

Friendship Friday: with a twist

Happy Friday! Sorry for missing you here on Wednesday – someday you’ll here about the roller coaster I’ve been riding this week. But in the mean time, I want you to meet one of my favorite people: Jenna!

Normally on Friendship Friday, my friends answer 4 questions to give you an inside look at our friendship and all of it’s quirks. This week, I’d rather introduce you to little J myself. Our friendship is so much different than most, and our relationship is one that definitely can’t be summed up in 4 questions.

As you know, I have a disease called Complex Regional Pain Syndrome…. So does Jenna. Back in the winter of 2015, I was sent to the Cleveland Clinic Children’s Hospital for Rehabilitation to be admitted to the Pediatric Pain Management Program… So was Jenna. That’s right: we met in the hospital because we were both fighting a seemingly impossible battle against an ugly disease.

We spent only 3 weeks together in the hospital before I was discharged and sent back to Texas. She stayed in Cleveland another 6 weeks before heading home to Canada. We’ve only gotten closer since that day, through texting and social media. Jenna and I share life’s ups and downs together in a way that no one else understands.We’ve literally seen each other go from wheelchairs to running, and every milestone in between. Not a lot of people can say that – and there’s no one in this world I’d rather do the rehab life with than my J.

Here’s the biggest secret to this friendship: Jenna is 8 years younger than me. When we met, she was the age that I was when I got sick. The reason our little hearts are so bonded is because she is the image of Little Ally. Our lives are pretty parallel – from our pre-sick days as dancers, to our post-rehab days as advocates and passionate dreamers. Jenna is simply 8 years behind me on this life journey, and I’m so honored the Lord chose me to hold her hand through it all.

Jenna keeps me laughing. She keeps me thinking. She keeps me hoping. She’s a bundle of joy, wrapped with a ribbon of grace. Bonded by pain, but secure in Jesus. That’s our friendship in a nutshell.

I want the world to know that friends like J exist. Age is just a number, and this friendship is forever.

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I want to share a J story real quick: The last time I saw J, I surprised her at the Clinic during my 6 week follow up. She had no idea I was in town. Together, we walked down the hospital hallway hand-in-hand…. Something we never thought would happen. Forever my favorite walk with my girl. 

A year and a half after meeting: J & I are both doing so well. The Little One amazes me every day with the things she accomplishes (homegirl plays badminton and jumps into swimming pools!!!!). I’m a full time college student (I was a dropout during my treatment). We love life, but more importantly- we love life together.

With all the love,

A & J