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 understand is, is that I don’t have enough strength in my right hand to pick up that glass of water. That’s why I keep the remote on that side and my water on the other. 

Or that positing myself so that you can get the pants on me is uncomfortable & pushes bone into bone, which is extremely painful.

Caregivers don’t get enough credit.  

I know it’s annoying to position me. I know it’s annoying to get the 192472972 million pillows in place, getting my blanket just right, making sure everything is in its proper place & that I can reach everything I could possibly need (phone, iPad, TV remote, lighting remote, water, etc). 

I know it annoys you that I called you as soon as you left the room…. For the third time, because I forgot I needed a napkin. I get it.

Caregivers don’t get enough credit.  

Your frustrated because “I’m not communicating my needs well”. I’m frustrated because it’s the same routine every day… literally every day, for the last 10+ years.  

I’m not asking because I don’t want to do it- I’m asking because I can’t do it without you. I hate feeling like a burden. I wish I could help more, but the reality is- I can’t.

Dealing with me is a pain in the ass (I get it, half the time I don’t even want to deal with myself). But here we are…dealing with me & all of my BS. 

Caregivers don’t get enough credit.  

I know most of the time you’re probably thinking this girl is batsh*+ crazy. I know you get frustrated with me on the daily (more like hourly…okay, minute-ly) basis. I know some communication gets lost in the frustration. I know I think you can read my mind. I know you think my OCD is overboard. I know you think I’ve lost my goddamn mind. I know think I’m just being meticulous, but the little things, to you, are very big things in my world. 

Caregivers don’t get enough credit.  

I’m doing the best I can to make our lives easier… with a little bit of my Type A personality sprinkled in. I’m just trying to function in this world that clearly wasn’t made for me. 

So next time I ask you to get my thing-a-ma-jig, while simultaneously being frustrated that my pedals aren’t down, know that- from the bottom of my heart, I’m sorry that I am the way I am. I mean well, but that too is lost in the frustration of being cared for / giving care. 

Thank you for learning my idiosyncrasies (even when you forget). And for putting up with them.

Thank you for helping me, even when it’s the last thing you want to do.

Thank you for giving me the care I so desperately need. 

2021 in Review

I’m learning how to live with that. I have to accept this new reality, no matter how much I don’t want to. This is the situation I’m dealing with & as much as I hate it, it is what it is. I’m done with the “lasts”- it’s time I start living my new reality. 

I have: 

1 million problems, 

2 million things I’m dealing with

& 7 million things that need my attention. 

Medically, were looking for answers & relief. We’re looking for new medicines, new therapy’s, new equipment, new devices… ANYTHING.

Emotionally, I’m dealing with the permanency of all the new. It’s caused a lot of problems with my underlying anxiety & depression. I knew there would come a point in my life that I’d have to deal with mobility loss, I just never wanted to think about it (but I wasn’t completely unaware that this would someday happen). Nobody wants to face that at 25 my body is failing me- and I still have 75+ years left to live (haha, jk probably not that long). 

Physically, I’m trying to accept my new body. I’m not happy with how I look. I’m not happy with the new bone left behind. I’m not happy with the way my body is stuck (it’s seriously as uncomfortable as it looks). 

I’m healing the best I can, I just don’t handle change well. 

I promised myself I’d get my s#*+ together in 2021- and it didn’t quite happen. And ya know what? That’s okay. 

I’m not thriving, but I’m here & that’s good enough.  

2021 wasn’t all bad. This year I’ve….

  • Started my Red Aspen business 
    • And subsequently met my soulmate, my other half, & forever best friend. Love you longtime, Lynds.
  • Became “Aunt Carli”- my favortie “promotion” so far.  
  • Spoke on the iFOPa Advocacy Series about my medical journal that I live by
  • Became a Cat Mom & I’m obsessed with my boy. 
  • My mom got a new Canine Companions Puppy- Nicolette

2021 reassured me. I’m not there yet, but I’ll get there. 

2022, I’m ready for you…. I think, Maybe? 

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 disability (big and small), I can’t 100% accept the way I look. 

My appearance is the first thing people see about me. And while their first thought is probably “Wtf? That looks uncomfortable” (FYI, it is). They also notice my weight. I can put lipstick on a pig, but a pig is still a pig…. I dress it up as best I can, but my body still awkward and frumpy and carrying around a lot of extra weight. 

I’ll never be able to have children. I’ll never get the joy of feeling those precious little kicks or get to hear the pitter-patter of my child’s first heartbeat. I’ve accepted adoption or foster-adoption or surrogacy- but I’ll still get to have a family. 

I’ll never get to walk down the aisle at my wedding. One, because I literally can’t walk. Two, because being on SSI/Disability (which is literally my only way of surviving), I can’t get married, or it’ll take away my eligibility. I’ll still live a life full of love. 

My body is turning into a statue and the artist is a sadistic @$$h0!3. I don’t get a choice on how my body locks or looks. There are certain features that seem to just “come with the disease.” There are weird pieces of bone sticking out everywhere, my back is a solid piece of bone & I can’t move my neck, hips, knee or jaw….

But you know what I can control? What I eat. Eating is my favorite pastime. I get to pick what I enjoy (like five things) and what I don’t (basically everything). It’s one of the few things 100% in my control. It’s unhealthy really, just how much emphasis I put on my $#!+ diet. But, it’s my way to connect with my peers. It’s one of the few interests we have in common where I can 100% participate without disrupting the task.

While I eat worse than most 5-year-olds, it just is what it is. I’ve made it clear to every doctor I’ve ever seen- it’s not something that they’re going to change. And they all accept that & do what they can to work around that. 

But the bottom line is- I need to get some of the weight to help preserve what little movement & freedom I have left.  I know, I need to lose weight. I know, I can’t exercise to get the weight off. I know I can’t complain because I refuse to take the steps that are in my control.  It also doesn’t help that 90% of the medications I’m on “cause weight gain.” Losing weight is literally nearly impossible. I have every aspect working against me, except the one I refuse to budge on. 

I want to lose the weight. I need to lose the weight- for me to be happy with what control I do have over my appearance. 

Life has taken a lot of my joy, it’s not taking my food too. 

**Yes, I’m aware this piece probably makes you roll your eyes or makes you want to “shake some sense” into me. I know it probably seems a little bratty that I won’t change my diet. I know my ways are extremely unhealthy and my relationship with food is borderline obsessive, and probably seems extreme to you. We can have this conversation until your blue in the face, but it won’t change anything **

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.