Oh, fuck, the irony. Life is like too real and too strange.

Ok, where to begin? The beginning, I suppose…

1/

In 2014, my step-dad (who basically raised me as his own even before he was my step-dad) and I had a falling out while I was fighting to get a diagnosis of what-the-hell-was-wrong-with-me. And yes, it was over my health.

2/

We did not talk until last July, when I called him crying, and told him I was getting married and I needed him on that zoom call (yes I got married on zoom) because he was my dad.

(Yes, he was there because dads come through.)

3/

In the meantime, after YEARS of misdiagnoses and maltreatment, I was diagnosed with two types of dysautonomia (POTS and Neurocardiogenic syncope) in 2015. At the same time, he apparently lost feeling in one of his feet in 2015 and had back surgery to correct it.

4/

Over time, I became unsatisfied with the treatment from my first dysautonomia doctor, and sought better care (and wound up at the Cleveland Clinic last year). His symptoms returned, diversified and worsened. He ended up at Cleveland Clinic Monday.

5/

If you are reading this thread, and you are familiar with the fact that it takes an average of 6 years for diagnosis of dysautonomia (with at least one misdiagnosis along the way), you know where this is going.

6/

He’s scheduled for a EEG r/o seizures, biopsy for SFN, and — you guessed it, folks, — a QSART for autonomic dysfunction. I literally ticked those off for him before he could even tell me what the neurologist recommended.

7/

I should have guessed it from the symptoms he had already told me, but he didn’t associate the other things — the dizziness during last summer’s heat or his low BP — until I asked him today about those things (which the Cleveland Clinic doc asked him too).

8/

I’m laughing because we were torn apart by my chronic illness, mystery symptoms and delayed and misdiagnosis, and now I can help him through his journey. Because I’ve been there. I know. I understand.

9/

People always said I took after him, almost like we were somehow related. Now we share more than just stubbornness (which we share a lot. I mean my mama’s stubborn, but I got it twice as much from my step-dad). So this is just… so ironic.

10/

But, it’s ok too. We’re going to get through it together. He’s ready to accept the help and also the chronic side of it. Part of that is that he’s accepted me. Part of that is that he’s lived with this and gone through his journey.

11/

And I am here for him. As a fellow spoonie, as the neurotic (former) nurse that I am when it comes to my loved ones and their healthcare — and most importantly as his daughter.

12/