Surgery's I Would Have If I Could (in order of importance)

Why do I think about this? Because I whole-heartly believe that one day I will be able to have surgery. I don’t know if I’ll be around when there is a cure (one day, there will be. I believe that), BUT there will be a medical solution one day. And here is my list… A little background. I have fibrodysplasia ossificans progressiva (FOP). It is a bone condition that turns muscle, tissues, &…

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it’s four years ago & my old life ended.

**Even this story is putting it mildly because I don’t want to scare you at just how terrible this night was** 4 years ago today was the last normal days of my “old life” It all started around 10 PM.At 10 PM, I was trying to go to bed. It was a normal night. I took melatonin I took Advil PM because my hip kinda hurt, but that wasn’t new because it has hurt for 4 months. I just wanted to…

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mundane.

Do you ever have one singular, mundane moment when you realize your life just changed forever?  I’m not talking a big, life-changing moment- like having a kid or losing a loved one. I’m talking, something you do daily, but one day, you realize your life just changed forever. Because I can tell you the exact moment mine happened.  October 5th, 2019 at 9:45 AM. I was picking up laundry. But I…

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my twenty- sixth trip around the sun

26 was hard. But not in the way the last couple years were.  My life is running on two parallels right now. One of grateful-ness, and one of pure broken-heart-ness. My health is starting to stabilize. And I’m figuring out my new normal. (Yay!) But, during the last year I lost my two best friends. My grandparents. My world will never be the same. I’ll miss them forever & always. I’ll forever…

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Jealous of [my] Angel, My Nani Goat.

Jealous of [my] Angel, My Nani Goat.

“I didn’t know today would be our last, or that I’d have to say goodbye to you so fast. I’m so numb, I can’t feel anymore.” -Jealous of the Angels, Donna Taggart.  My Nani Goat.  My Mawmaw. My Best Friend. And as of 12/7/22, My Angel.  This is [yet another] good-bye I never wanted to say. Never followed by a “Hello Carli Cakes”. Yet another face that’s missing from the sidelines. A chair at…

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I'm An America Ninja Warrior, Too.

I’m An America Ninja Warrior, Too.

Having a disability is a lot like competing on American Ninja Warrior.  That’s a weird comparison for someone whose body is incased in bone & can’t walk or lift her arms above shoulder level or hold her body weight or even walk. I couldn’t make my way across the Shrinking Steps. I couldn’t make it across the Spinning Log. My wheelchair wouldn’t make its way up the warp wall and forget about…

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5/26- The Day My Best Friend Became My Angel

Love you forever & ever, Pawpaw.

I lost my best friend today- my pawpaw, my biggest fan. Today he got a new roll- my angel.  This was the hardest goodbye I ever had to say. It will never be followed by another “Hi Baby Doll”.  I cried today because I lost you. But I promise, these tears won’t mar the smiles that you’ve given me over the last 26 years. I knew this day would come. I avoided it as best I could, but death is…

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The Reality of Needing Care...

The Reality of Needing Care…

I probably seem crazy picky & overly demanding. It probably seems like I have control issues & OCD. It probably doesn’t make any sense to you why I yelled at you because you put my cup of water on the left side of my tray and not the right. You probably don’t understand why I’m mad at you because my pants leg isn’t cooperating while you’re trying to get me dressed.  But what you don’t…

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2021 in Review

2021 was hard. 2021 pushed me to my limits. 2021 tried to break me, but it failed.  In a lot of ways, it was more challenging than 2020. (See blog ).  I was faced with the reality of my new “forever”. I’m trying to forget what life was before everything fell apart. I hope this flare is done with me, but I’m pretty sure this flare will go on forever (only being *slightly* sarcastic, but it’s…

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Yes plz 🤯

“I want to meet myself from someone else’s point of view.”

—

My Diet Isn't The Only Unhealthy Thing... So Is My Relationship with Food

My Diet Isn’t The Only Unhealthy Thing… So Is My Relationship with Food

I have such an unhealthy relationship with food (literally & figuratively).  Literally, the only healthy habit I have is drinking a ridiculous amount of water daily.  Life has taken almost everything away from me. My body is turning into a statue. I can’t walk. I can’t play sports or go to the gym. I can’t have kids or get married. While I’ve accepted almost everything that comes with my…

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Disability Is A Full-Time Job

Disability Is A Full-Time Job

Having a disability is much different than anyone thinks.  It’s not the everyday inconvenience of your body literally not working.  It’s not fighting for accessibility.  It’s not sitting around the house all day twiddling your thumbs because you’re getting paid by the government to do just that.  It’s nit-picking literally every single second of your day & every single aspect of your…

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Messy Buns & Target Runs

Messy Buns & Target Runs

Whenever people ask me what I miss most in life, it isn’t being able to walk without assistance or all the obnoxious pain I’m in– it’s always been “I wish I could do my own hair” or “I wish I could go to Target on my own.” Now that probably seems extremely minute & unimportant to you. But let me explain to you why its not either of those things. For me, being able to do my own ponytail & drive…

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Here's To 25!!

happy birthday to me!

24 brought a lot of challenges.  I lost a lot. I struggled a lot.  I had to learn how to re-live my life- yup, every. single. aspect. I had to rely on friends & family (in the middle of pandemic) for almost everything. I had to put off doctors’ appointments for issues that were urgent. I had my limits tested at every single turn.  I lost… My ability to walk independently. My ability to turn…

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2020 Wasn't My Year

2020 Wasn’t My Year

2020 was a tough year for me & it has little to do with the pandemic. It started with a big decision- I chose to stop the clinical trial I was on for FOP. It had nothing to do with the trial itself, but a personal choice. A choice that I went back and forth on for over a year– I talked to friends, family, medical professionals, & basically anyone that would listen. My last dose was December…

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Earthquake

"It hit me like an earthquake. It destroyed my normal. But it didn’t destroy me & it never will."

It hit me like an earthquake- there was no warning & no time to prepare. 

I guess that’s not fair, I knew the day would come were I lost more mobility- afterall Progressive is right there in the name. It’s part of the battle, but it’s not the whole fight. But still, I wasn’t prepared. 

One second everything is fine– my version of normal, the next I lost it. Everything changed in that…

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4 Health Apps to Live By

4 Health Apps to Live By

** this post is not sponsored in any way by any of these apps, just personally love them!!

Medisafe

It is soo important to me that I keep up with all my medications & I just can’t do it on my own. I love that I can store all my medicine information in one place. It allows me to easily note when I take a medication or when the last time I took it was. It also reminds me to take my meds, which is a…

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