Here's to Steroids, Second Opinions, and Refusing to Be a Guinea Pig

Hi. It's me. Functioning Cristal.

What, how? STEROIDS. The double-edged sword that is steroids. Three days' worth, and let me tell you what happened.

If you read the last post, you know I'd landed in neutropenia-land — low neutrophils, high risk of a small infection turning into a big problem, stuck in limbo waiting for my immune system to remember it had a job to do. Good news first: after about a week and a half, my levels came back up to a safe range. Progress. I'll take it.

So I kept going with testing. Next up: my ophthalmologist, checking perception and imaging my optic nerve bundles. And the results weren't nothing — signs of peripheral loss on my left side, in both eyes. Add that to blurry vision that had started creeping in, color fading out in my left eye, and a slight delay in how my pupil reacted to light on that same side. Put it all together and the concern was optic neuritis.

That report went straight to my neurologist, which is how I ended up with an emergency three-day steroid treatment.

And by God, does it make a difference.

Now — I know steroids aren't a miracle for everyone, and if you're someone whose body doesn't respond to them, I see you, and I'm sorry this isn't the universal fix we all wish existed. But for me? It was like someone found the light switch I didn't know had gone dark. I feel like a functioning person again. And the wild part is, I didn't even realize how not-well I'd been doing until I had this contrast to look back through. You don't always notice the fog while you're standing in it. You notice it when it lifts.

So what does all this mean?

For me, it means I need more specialists in my corner. Something has been missed along the way, and I refuse — flatly refuse — to be a guinea pig hoping someone stumbles onto the answer a year from now. We are not living in the medical dark ages. We have more advanced tools and knowledge than "let's just try this and see." Right? Am I being too hopeful here? Honestly, I'm not sure. But I'd rather be too hopeful than quietly accept "wait and see" as my only option.

So I've decided to get a second opinion — from Mayo Clinic in Arizona.

End of July, I'm heading there for a few days to meet with a neurologist and likely a few other specialists. I've got a running list of questions long enough to make a waiter nervous, and my Medical Binder is packed and ready. (If you want to see how I put mine together, I've got a whole breakdown on the Health Tracking tab — steal it, use it, make it yours.)

This trip isn't about ditching my current team or throwing a tantrum because things got hard. It's about getting a second opinion, a second pair of eyes, and a fresh set of experts to help actually manage this disease instead of just reacting to it one flare-up at a time.

And I want to say this clearly, because it matters to me: I know how fortunate I am to have the money to make this trip happen — to travel, to pay for the second opinion, to seek out experts on my own timeline instead of whoever's available closest to me. I know so many people with MS don't have that option. No insurance that covers it, no funds to travel, no flexibility to just pick up and go meet a specialist across the courntry or state lines. That's not okay, and I don't take it for granted. I hope one day I can be part of changing that — helping make this kind of access less of a privilege and more of a given.

For now, though, I'm just on my journey. And if anything in here gives someone else a nudge toward their own next step — a question to ask, a second opinion to chase, a binder to start building — then this post did its job.

Heres to more soon! Always more soon.