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

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 inevitable. I watched you suffered, and it broke my heart. But now I’m shattered. 

My heart is broken… and you took a piece of it to heaven with you.  

But somehow, life goes on. I still have to go to the doctor tomorrow. I still have to do the grocery shopping. I still have to put my glasses, get ready, take a shower & go on about my day—about my life. How am I supposed to pretend like my whole world didn’t just shatter?

I don’t know how to go on. I don’t want to do this life without you. I’ll still have celebrations. But just like I told you, I was being selfish by wanting to keep you here with me.

I have no doubt in my mind, you were put on this earth to be a grandpa, my pawpaw. I quickly had you wrapped around my fingers and I was quickly smitten with you. I’m so proud to call you, my Pawpaw. Death won’t change that. 

I refuse to remember you by the last couple months. My memories of you will never include that hospital bed or the four walls I’ve grown so familiar with over the last several weeks. Instead, I’ll remember all the laughs & smiles, all the yelling at the tv because the Cardinals were being stupid, all the sleepovers, all the Christmases / Birthday’s/ Graduation’s / Celebration’s, all the cheering me on. 

I got to spend 26 years of my life with you, and though it wasn’t even close to being enough time with you, I’ll treasure it always. I’m so lucky that I spent a good portion of my life with you- from afternoons after school, to dinners just because (at least once a week), to everyday in between- I never took one of those days for granted. 

The last words you clearly spoke were “aye yai yai”. Your last smile was when PayPay did an “up” on your bed. Those last moments will always stick with me, but they won’t be how I remember you- I promise you that.

I know you’re in a better place with all the loved ones you lost. I know you’re having one hell of a reunion up there. I know you’re happy and pain free- and that’s what matters most to me. Go take care of Ralph for me. Say Hi to Grandpa Jean for me & help him out- your grandpa job isn’t done yet. I love you forever & ever, Pawpaw. 

Thank you for letting me spend the last days of your life with you

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 **