Thank you to those that have been being so loving and supportive during the last few weeks of weird sudden hearing loss/etc. I wanted to provide an update because I need to stay out of the shadows. We are still operating under the assumption that my sudden hearing loss was caused by an auto-immune issue - but right now the exact cause is a bit soft. So, I am getting lots of second opinions to make sure that we are on the right track. It's a road filled with uncertainty - thankfully I am good at walking through liminality...but I am not going to lie...this one has its challenges. And the challenge feels so silly to me - It's my face. Allow me to explain....
Each time I drop the prednisone, I get more ear symptoms. I had to hit pause on increasing my methotrexate dose (which is getting me off the prednisone) because it is causing my liver to get a bit upset. I'll know more next week.
I have an amazing team advising me...and the bottom line is this - we have to preserve my hearing while we find what works. So that means I can't just get off the prednisone because that is what is keeping my ears in tact.
For a girl that has had an eating disorder, I am struggling with prednisone. My face is puffy. Shit that sounds vain. But it's true. My tummy is puffy too. These are the side effects. So, that means NO HIDING what's going on with me. Add in IV fluids and I look like someone I don't even recognize at times.
Humility. I am on God's road. There is just the humble walk down the path that God has in mind for me...daring to be REAL the entire way. It's a badass journey, and one filled with the very human fear of rejection and abandonment...but this is where the roots of God run deep...because I know deeply that I am always held in God's grace.
It is also a journey tempered with the perspective that I am so incredibly blessed. Those that are living outside, those that are suffering without medical care, those that are dying on the streets in the cold, those that are refugees from war all over the world...it puts everything into perspective. So I will be grateful for the prednisone that is sparing my hearing at the moment. I will be gentle with myself for the way that it affects my self perception. I will allow the journey to unfold as it does.
And finally, with courage, I will ask for my loved ones to love my face if it's a little puffy, because it is still ME...and my tummy if it's a little swollen (because that's ME too)...And to check in on me, but to remind me that I am STRONG AS FUCK and I WALK WITH GOD...And that we all can pray together for one another as we walk the road toward greater HEALING in all aspects of the Word.