“The Silence Between Posts…”

It has been eight months since I last sat down to write… and not because I didn’t want to, but because life once again had other plans for me.

These past months have not just been difficult… they have been consuming in a way that is hard to fully explain unless you’ve lived it. There are moments in this journey where you feel like you are finally gaining some control, like maybe, just maybe, you are learning how to live alongside the pain instead of constantly being overtaken by it. And then, without warning, everything shifts again.

Over the past eight months, I have been trying to recover not just from one thing… but from multiple layers of my health unraveling all at once.

A diagnosis of MOGAD, something I never saw coming, forced me to face a whole new level of uncertainty with my body. Trying to understand it, manage it, and process what it means for my future, all while already living with CRPS.

And as if dealing with two very rare conditions wasn't enough, then 5 months after of MOGAD diagnosis, came my total thyroidectomy.

I went into that surgery holding onto hope. I had hoped that it would be a step forward, that it would stabilize at least one part of my health, that maybe, it would give my body a chance to feel some sense of normal again.

But instead… it triggered something I wasn’t prepared for.

The surgery sent my body into a severe CRPS flare, which I am still trying to work through.

What followed was not just recovery… it was a level of pain and sensitivity that took over everything. The kind of flare that doesn’t just stay in one place, but spreads, lingers, and consumes your entire system. My body felt like it was constantly in overdrive, reacting to everything, unable to settle. What made matters worse was the fact that the CRPS had spread into both of my legs.

There were days where the pain was so intense it was hard to think clearly… days where even the smallest movements felt overwhelming. Days where I didn’t recognize my own body anymore.

And while I was trying to navigate that physically, I was also trying to recover from the surgery itself, adjusting to the changes that come with losing your thyroid, managing medications, and dealing with a body that felt completely out of balance.

It was layer upon layer of healing… without ever truly getting a moment to breathe in between. And then came the part that made everything even harder.

The insurance battle.

At a time when my focus should have been solely on healing, I found myself pulled into months of fighting for the care I needed. Endless phone calls, conflicting answers, delays, denials, being told one thing and then something completely different the next time.

Trying to get treatments approved.

Fighting for treatments that were denied.

Trying to get answers.

Trying to make sense of a system that felt like it was working against me instead of supporting me.

There is something deeply exhausting about fighting for your health… while also having to fight for the right to be treated.

It became overwhelming in a way that is hard to put into words. Because it wasn’t just the physical pain anymore — it was the emotional toll of constantly advocating for yourself when you barely have the energy to get through the day.

And somewhere in the middle of all of that… I had to step back.

Not because I wanted to.

Not because I didn’t care.

But because I didn’t have anything left to give beyond simply trying to make it through each day.

That is where I’ve been.

Trying to recover.

Trying to stabilize.

Trying to navigate a body that feels unpredictable and, at times, unrecognizable.

CRPS has a way of taking over every part of your life, physically, mentally, and emotionally. This flare has been a reminder of just how powerful that grip can be. Add in a new diagnosis like MOGAD, a major surgery, and the stress of everything that comes with it… and it becomes more than just a health struggle.

It becomes your entire world. But even in all of this… even in the silence, the setbacks, the pain, and the frustration…

I am still here.

Still fighting.

Still learning.

Still holding onto the hope that my body will find its way back to some sense of balance.

And I’m not done telling my story...

#crpswarrior #mogadfighter #undefeated