I'm still me AND disabled

I made it back from New York!! I was nervous about the flight because I had pain on the way there. But I made it back!

Everyone knows flights are dehydrating. For me, of course, this can be a huge problem. I dehydrate easily these days because my lame adrenal glands don't produce enough aldosterone which is in charge of reabsorbing fluids. Add that to a missing colon - which is also in charge of reabsorbing fluids - and some other factor like a hot day or a long flight, and I'm PARCHED. 

It took a long time to find the right doctor to oversee my adrenal issues. But I finally did in early January. I've been on DHEA and hydrocortisone since then, and only on the correct dosages since April. It can take a long time to tweak hormones! We all feel better at different levels and the labs need to be in the right range. COMPLICATED.

This is just ONE of the medical variables I'm managing. I know it's super confusing for a lot of people why I look so "normal" and can have so many medical issues. 

It's confusing for me too! I look in the mirror and I see my old self reflecting back at me. How am I disabled? How am I living in my parent's house and unable to work? How am I still going to the doctor so many times a week?

You know that moment when you're still waking up and still hovering between sleep and consciousness? 

Every single morning, I have to remind myself that I'm living through this strange, challenging existence. I have to remind myself that I can't eat granola and yogurt for breakfast. Or, go for a run outside. Or get ready for work. Or, grab an apple.

If I have this much trouble wrapping my head around my reality, I can only imagine what it's like for the people around me. I admit I've gotten impatient when people don't understand. Now that more time has passed, I get it. It's a steep learning curve!

Today is Memorial Day and my niece's birthday party. I know I would need fluids after the long flight yesterday so I booked an appointment. I'm usually wearing my "appointment uniform" which is the same boring shirts and jeans. But today, I wanted to look nice for the party and it's gorgeous outside so I put on a dress.

While walking into the infusion center, I realized how different I looked to the staff. They usually see me with my hair sticking on end (ok, fine, my hair is still sticking on end but I'm wearing a hat today!).

We live in a culture that LOVES labels, especially for women. Even the ground-breaking female ensemble TV shows have characters that are all a "type." Crazy. Workaholic. Badass. Prude. Partier. Artist. Flake. Slut. Mom. Nerd.

me with kids 2.jpg

I've noticed this for years and it drives me crazy. Why do we have to be just ONE thing?

It wasn't until today, though, that I realized that I was doing the very thing that I hate to MYSELF. I've been trying to figure out who I AM as this "disabled" person. What does that look like? How do I present myself to the world? What do I write in my bio now?

But it's just another thing about me. Devoted Auntie. Funny friend. Nutrition educator. Disabled now. Seattle native. Gypsy traveler.

I can be a lot of things AND also this. 

I know it's hard for some of my family and friends to still wrap their head around this new version of myself. It's awkward. And sometimes uncomfortable that I talk about my stomach a lot. 

But this is who I am now. Sometimes I have to share what's happening because keeping it inside just makes me feel worse.

I don't want to feel worse. And I know that people that love me also don't want me to feel worse.

Even though I know it's hard to hear. That I'm in pain. That I struggle to poop.  That I live with a "terrible prognosis." 

I know. 

But I don't get the luxury of pretending that these things aren't happening.

I don't get the luxury of unfollowing my own life. 

I have to live it every single second of every single day.

And it makes it a lot easier for me if I get to share some of those struggles with the outside world.

So sometimes you'll see my laughing in a blue dress at a party.

And sometimes you'll see me curled up in a ball getting IV fluids.

Both of those experiences are still ME. 

Just like all of us have our happy moments.

And we all have our sad moments.

I see now that it's the beauty of being in a human body. 

Instead of thinking we should only be experiencing only "good" emotions and "successful" moments, we need to remember that without the low, we wouldn't even understand what JOY means.

That's why some of the happiest people you know are people that have had the hardest lives. 

No lows means no highs.

Think about how passionately people love during times of war. 

They understand how fleeting those moments are and make the most of every single one.

So as much as this weird life of my mine can suck, I am still fucking here.

I'm going to cry out loud, snort while I laugh, swear too much, talk to strangers on planes, smile like a dork during my walk through Central Park, share my pain with all of you, and soak up every second of this existence while I can.

I have to go now. My fluids are done and I have a party to go to in my favorite blue dress. :)

I can do this.