Real Talk

Right now, being honest makes me very nervous

Sophia and I have had a longgggg day.

We're tired.

She's tired from school and her first physical therapy evaluation.

I'm tired from my lipo-lymphedema, and honestly, life.

We got home from her physical therapy assessment today knowing that nothing we were told was unexpected, yet at the same time, everything had changed.

You see, it has always been our hope that Sophia would not inherit any of my genetic disorders. No Central Precocious Puberty, no PCOS, no lipedema.

Like me, she is neurodivergent, but at least she's not going to be dismissed and diagnosed as an adult.

We've definitely done pretty well with her health so far, though. She hasn't needed any dental work beyond her routine exams. We've managed the first couple of years of puberty without any big red flags.

Yet in the back of our minds, there's long been a suspicion that she might have a connective tissue disorder, like Ehlers Danlos Syndrome. That's the thing that Dr. Amron thinks I have that's led to greater complications for me with my soft tissue injuries and arthritis.

Well, my daughter's knees have been bothering her for a bit, meaning that she feels they hyperextend or bend a little backwards. We've brought it up to both of her pediatricians, but they each attributed it to growing pains or common issues during puberty.

Now that she finds her knees want to over-extend whenever she has to run at school, I said it's time to get her into physical therapy. While they can't diagnose her, they can certainly do an assessment, help her strengthen the right areas without stressing any problem areas, and point us in the right direction about if we need to do more.

So, I took Sophia to her assessment after school, and it pretty much went how I expected it might go. The therapist tested Sophia's place on the Breighton scale of hypermobility. She scored a 6/9, and the therapist explained that while she cannot diagnose patients, her score and symptoms are all indicative of Ehlers Danlos Syndrome.

I'll need to get Sophie into a specialist this summer and in the meantime, she needs to attend physical therapy twice a week.

The co-pays are $30 each session, meaning we now have a new weekly expense of $60 for the next six weeks at least.

Do you know what, folks? I know you are all so sick of hearing me talk about money. Believe me, I do. And yet… I don't even know who to talk to about all of this anymore, because it all feels so impossible.

I am already…. $772 short on our bills due in just a few days. And I already need to get my rear brake pads and rods replaced for another… $360.

I don't have the money coming in to cover all of these needs and still manage my lipo-lymphedema. But the great big reason why I'm even in this position is because my childhood diseases were not properly managed.