#35 Dismissed to Determined: Advocacy, Confidence and Community with Bailey Jane

Well done you for persevering and, and keeping going and listening to your body because so many of us with, with the world we live in, we just, you know, keep going and don't really, and push forward and don't really listen to ourselves.

So well done for listening to yourself because that's also [laughs] a huge-

Yeah

... part, isn't it, of you being able to get that diagnosis.

So once you'd, you know, you'd spoken with the knee surgeon, you'd got that blood test, you'd got your diagnosis, then what, then what happened? What was, what was it like after that?

So I had a three-series knee reconstruction to fix my joint, and it was luckily during COVID, so I wasn't going anywhere anyways.

But it was very difficult.

They fully reconstructed the bone but also detached the ligaments to a point I had to relearn how to walk, relearn how to lift my leg.

I didn't know how to use the muscles anymore, and I had two three-inch long screws through the front of my kneecap.

And the pictures of the difference in, like, swelling size from my legs during that time are just an atrocity.

But it was really difficult to be recovering from these surgeries while also starting treatment.

I did Humira, the self-injections, for a while.

As a girl who hates needles, that was terrifying.

[laughs]

Mm-hmm.

But I, I no longer am afraid of needles, so that's a plus, I guess.

But-

[laughs]

...

the Humira got it under control pretty quickly, and then it ended up being that the screws that were in my knee were really triggering an inflammatory response 'cause it was foreign metal, and my body did not like that.

Mm.

So I ended up getting the screws removed, which was another surgery, and after that, I feel like that with the Humira, I don't know which one to give credit to, but my inflammation started getting a little bit better, and it was under management until I was 21 and I had just been about to turn 22, and my insurance company said they were gonna stop covering my medication 'cause I'm no longer considered a juvenile.

'Cause I was on, like, a financial assistance program that went up to 22 years old, and after that, they're like, "You're on your own.

$6,000 a dose." And so I actually haven't been on treatment since I was 21, and I've had to do a lot of self-management, a lot of different holistic methods.

I was able to finally get back in with my rheumatologist and start making a plan now that I have steady healthcare, but it was just the fact that I didn't stop treatment on my own decision.