If my lack of blog posts as of late weren’t an indication, I’ve kind of had real life kicking me in the face a little more than I’d usually like to admit. I got the flu – not Covid, the other one – and my leg has been swollen something fierce for… weeks now? I can’t even remember when this started to be completely honest, but I literally had to argue with my doctor, who considers Cerebral Palsy a “chronic condition that doesn’t require further treatment” … which kinda just shows me that she knows nothing about it and causes me to lose faith in her at all as an advocate for my health, but that’s another story. So anyway, after her nurse literally argued my case for me, I got a referral to an ortho specialist, who did a bunch of xrays and an MRI and came to the conclusion that there is absolutely nothing structurally wrong with my leg.
So let me break that down a little. As a person with CP, I tend to strain my muscles a little easier. People with CP exert somewhere around five times more energy doing every day things than a normal person. So usually, if something is swelling, it’s an indicator that something is wrong. That’s true for all people, but for me, it usually boils down to: something is out of place (bone shifting, hardware shifting – I have four screws in my ankle), fracture, break. I have, on several occasions, fractured something in my leg and literally not known it happened for a while, sooo I figured it was a possibility I’d done it again. Maybe I looked at my leg wrong or the stars aligned just right. Who knows? In any case, I know my body, as busted as it is, and I know something is wrong with it, so after waging a small war with my PCP, I got my referral, and I found out that for the first time in my life, whatever is going on with my leg is not related to some wonked-out complication from my CP.
My specialist brought me into the room and she showed me all the scans and all she kept saying was “the tissue is swollen. All of it. From the knee down. And I have no idea why. There’s no fluid to drain, no breaks, no fractures, no shifting. Nothing that would require surgery. I don’t know what’s wrong.”
She repeated this about four or five times – it was her answer to every question I had – and added, over and over again, that she would be referring me back to my doctor and requesting that she order more tests.
My doctor instead ordered a referral for an occupational therapist.
Now, don’t get me wrong. I am looking forward to seeing what the occupational therapist has to say and I will be following any suggestions that they make, but I’m having trouble wrestling with the idea that the specialist didn’t order more therapy. She wanted more tests done. Why? Because this is the first time where she couldn’t find an explanation based on what we already know is “wrong” with me. And before we go there – that’s just an expression. There’s nothing “wrong” with me. I am who I am. I just happen to be limited edition. I’ve gone through my entire life dealing with this and have never let it stop me from doing a single thing I have wanted to do. What bothers me is that I know how to handle it. I don’t know how to handle the unknown. I’m not really sure what to do when the specialist doesn’t have any answers, and I’d really like to rule out some of the unknowns, but instead I get to go to more therapy.
And that’ll be a good thing, regardless, of course, but it’s not really going to give me those answers. I feel like I’ve spent the entire summer in this like… state of constant frustration because I can’t fit my regular shoes on, much less my cute summer ones, and I can’t even wear some of my pants because my leg is so swollen, and who wants to wear pants anyway because it’s so damn hot outside? Except I have to because my family is already just as freaked out about this unknown thing as I am, and them seeing it just gets them going, and I don’t want to deal with that, buuut such is the curse of being the “disabled kid” in the family.
Thankfully I have some really amazing people in my life who love and support me regardless and have helped me to keep my chin up and see the brighter side of this whole hilarious mess. It’s not been all bad. Just… stressful? On top of all of that I am also looking for my first home, which is… also stressful, but fun? And in any case, I’m still determined to enjoy what I can of what’s left of the summer. One thing I DO know is that whenever I fall, I always get back up, so this is just another thing.
[Body][The Shops]Legacy Mesh Body Special Edition (1.3)
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