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 life.

 It’s micromanaging your body. 

It’s about choosing. 

Choosing what your body is up for- what it isn’t.

 Choosing what you can afford & what you can’t (usually cutting out vital parts of your care). 

Choosing if the task your about to do is worth the pain & recovery time.

It’s about everything you don’t think twice about. 

Its more than the inconvenience. And way more draining than you could ever imagine. It’s more than collecting disability. It’s more than a full-time job. It’s 24/7, 365 + a little extra. 

It’s endless pain. It’s physically, mentally, & emotionally draining. 

My guess is you don’t think twice about when you go to the bathroom. Or when you shower. Or when you run your errands. Or when you feed yourself. My guess is its second nature for you to take care of your needs. You don’t have to think twice about if you can get into X Y or Z. Or if going is going to be more or less frustrating than even bothering to go. Or wondering if the stares and stupid-ass questions are worth it. 

You don’t have to think about these things. But I do. Every. Single. Day. 

I plan my whole day around it. When I have the help I need, when I have the ride, or when it’s convenient for those around me. My guess is your alarm wakes you up because you have to be up. I set mine because I could find the help & I need to get things done. I live my entire life on someone else’s schedule. 

I don’t think you rejoice when you lay down because literally everything hurts & your body just can’t take anymore. 

My “job” doesn’t look anything like yours. No, my job is to live a fulfilled life & be as functional as my body will allow. 

My “job” is calling SSI to fight for the help I need. Or calling 235829947 doctor’s office to try to find & coordinate the care I need. Or calling the insurance to fight for the medicine said doctor prescribed because “it’s not the intended use” & they don’t think I actually need it. Its talking to others in similar situations to try to find something that might make things easier and more manageable for me. 

Any task you do is infinitely harder for me. It either takes excessive planning or uses 10x the energy for me to complete. Or most of the time- is just flat out impossible for me to do. 

It’s budgeting down to the penny. Or picking & choosing what therapies you are using this month vs what you want or need. It’s about cutting out the things that make you happy because your health demands your attention and funds. 

It’s about choosing what’s worth the energy & pain.

It’s about choosing your sanity or your health. 

It’s writing everything down because– brain fog. 

It takes everything in me to function day to day. Having a disability is a soul-draining, painful, stressful, & terrible- full time job. A job I never applied for. And one no one wants. 

I’m not lazy. 

I’m not getting rich off the government.  

I’m not over-exaggerating. 

I’m doing everything I can + more. 

I’m doing my best, even though “my best” looks different every day.

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 myself to Target are two very important things even though they probably seem silly & trivial. To me, they mean independence. To me, they are two of my favorite things to do. 

Are either of these going to change the trajectory of my life? No. But they are going to make me happy. They are going to give me the independence I so desperately crave. 

They are some of my biggest hopes & dreams. I think you’re starting to get the picture, but I’m not done explaining. 

I love hair. I love playing with & doing hair. And I’m good at it, dammit. In another life, I could easily see myself being a hairdresser. But I don’t have the luxury of pulling my hair back when it’s getting on my last nerve or when the humidity gets to be too much. I can’t throw it in a bun to wash my face or just because. I can’t try out the latest style trends or curl my hair because it would “match my outfit”. Doing hair brings me such joy, & it’s a daily reminder of everything I can’t do.

I love Target. It is my happy place- wondering aimlessly for hours & buying all the random things I didn’t know I needed until I showed up makes me so happy, I’m not able to make a quick run because I’m out of ice cream or treat myself to a leisurely Target run after a bad day. I always have to hope I can talk someone into taking me to Target. 

I’m lucky enough that I surrounded myself with people who understand this struggle and come to me to do their hair because they know how much I love it. Or go out of their way to include me in a Target run. I’m fully aware that it’s not always convenient for them to ask or include me in these things, and I’ll forever be grateful for my tribe.

I can handle the pain (most of the time) & the stares & the countless hours of waiting in the doctor’s office. I can handle the insane amount of medicine & specialized equipment. It’s the small things that break me. 

It’s the small things that you probably never think twice about or that you do every day that upset me most. Because I wish more than anything that I could throw my hair in a messy bun & do a target run. So next time you do just that, think of me & hope like hell that scientists can figure out-how one day, I can do just that. 

Here’s To 25!!

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 over or adjust in bed
  • My ability to use the restroom
  • My ability to bend
  • My ability to independently get up 
  • My ability to sit in a car
  • My ability to sit in a normal chair
  • My ability to dress/ undress myself
  • My ability to stand up straight or independently

I had to trust the process & learn to live with a body that was on its own timeline. 

It was  & still is hard. I lost my sense of normal (in way more than just a global pandemic). I had to relearn how to do just about everything in my life. 

But here I am, still fighting. I lost a lot this year, but I survived, and sometimes that’s all you can do.

This life is crazy & I never imagined I’d lose so much so quickly, but I did & here we are. But you know what I didn’t lose? My support system. Or my sarcasm (& sometimes dark sense of humor). I didn’t lose my house or a loved one- and honestly, that’s way more important to me.

This year tested my limits & pushed me hard(er than I needed to be). It’s still a struggle everyday (and it will be for a while). This stage of life is different. I wasn’t ready for it,& I certainly wasn’t given time  to prepare. It’s hard to teach someone to care for you when you don’t even know what you need or how to do it. It’s stressful & tempers flare on more than one occasion. 

I’m learning to cope. I’m figuring out little by little- with the help of an amazing support system. I’m learning to give myself a little more grace, learning some patience, & learning to trust my loved ones.  It’s a process & it’s not pretty or easy, but that’s my life. 

So, Here’s to year 25. Please be easy on me. 

Here’s some exciting things in store for Year 25:

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 31st, 2019. 

I was still in the middle of my biggest/most painful flare up ever, but I thought I was almost over it (oh boy was I mistaken). But I was starting fresh in 2020.  

January & February were pretty steady. We went to Ohio for the graduation of our second CCI puppy (Congratulations Ethan!) I went to Hot Springs, AR for my boyfriend’s sisters’ wedding.  I was fighting the flare in my hamstring. It fought back, but I thought I was in control- I just couldn’t get the swelling to go away. I tried lymphedema therapy and my body fought back- this time it won. 

February 29- March 1 was the most pain I have EVER been in. I was up for over 24 hours straight (literally stood every hour & I have my iWatch to prove it). I couldn’t lay down, I couldn’t sleep (I tried hefty doses of melatonin & even tried Xanax (calm down I have a prescription)) — nothing helped the pain, I couldn’t find a comfortable position (couldn’t stand or sit or lay down). I think you get the point, but I was absolutely MISRABLE. Sleeping on the couch made me even crankier and even more swollen. Basically, I don’t know how I survived, but I’m super thankful for my parents & Billy who put up with me because I couldn’t even put up with myself. While I was fighting with my left leg (still think it’d be less painful to cut off), the pandemic began. And I’d like to raise my middle finger for the pandemic for taking away my biggest distraction- Cardinals Baseball & Blues Hockey. Thankfully Netflix & Kindle Unlimited stepped up & provided a much needed distraction. 

We finally started to see light at the end of the tunnel with no lasting damage and we were ecstatic– but then my world imploded.

On April 16th I decided to be a stubborn & got from a chair by myself, but instead of standing, I fell– right on my hands and knees. I lost movement in my left knee (my good leg). I lost my ability to freely walk & stand up straight. I lost most of my independence. 

I can no longer walk without a walker (& even with that, I can’t walk long or far).  I lost the ability to go to the bathroom. I can’t get up on my own. I can’t make my own meals (which is funny considering I don’t cook, but now I can’t even get my own snacks/ food). I can’t turn over (or move at all) in bed.  I can only sit in my wheelchair, on a couch, or my very specific walker seat. I can’t get in a car (only the back seat of my van). I can’t do any steps (of any kind- even if it’s less than 6 inches). 

Life as I knew it was literally over. I had to adapt in literally every aspect of my life. As you can imagine- this has been extremely challenging. 

But I’m learning to accept my new life. It’s been rocky and hard as hell. I’ve lost my shit more times than I can count, I’ve lashed out at my support, but I’m doing my best (& my best is good enough).

I’m starching-denting-breaking my way into 2021 thanks to my buddy Russell the Wheelchair. 

2020 hasn’t been my year & I’m excited to put it behind me.  

BUT- it hasn’t been all bad.

  • In July I learned I’m going to be an Auntie & I seriously cannot wait (hurry up April 2021!). 
  • I started to get leads with being an Instagram Influencer & I can’t wait to see where that journey takes me!
  • I paid off my Credit Cards which was a major goal for 2020
  • I read SIXITY EIGHT (yes,6-8) books (That was almost triple my goal)

Please 2021, be kinder to me- I’m ready for you.