What is Different About Now?

So this week, as my doctor and I are mid-flight with no directing cardiologist over at air traffic control, I’ve been thinking about things. Here I am trying the same pills that didn’t work a year ago, struggling to find a medication that controls my POTS symptoms in a kind of balance that doesn’t make me comatose or with a heart racing so fast I’m left wondering if someone sneaked cocaine into my morning smoothie.

What’s different about this year versus last?

I guess the amount of crazy has gone down a notch. Stressing over certain parts of my disease just aren’t as active as they once were when I was worried about having to go to the emergency room–long hospital stays–unemployment–lacking any physician who “got it”–facing constant scrutiny from extended family…

"You've got a rare disease--just go figure it out by yourself..."

“You’ve got a rare disease–just go figure it out by yourself…”

I think there are a lot of reasons for this– Having Dr. Santa Maria on my team and knowing I won’t be limping from ER to specialist every other day with no guidance is a godsend. And just having someone to vent my frustration to who sees a definite division between my disease and my personality helps me every day to keep the two worlds separated.

Then there’s Global Genes. Working at the managing editor for the blog means that I read every story from EVERY rare disease patient who contacts the organization. And you know what?

Nope. I can still eat fruit loops and not die. I'm good.

Nope. I can still eat fruit loops and not die. I’m good.

Turns out there are a lot of rarer and worse diseases than POTS and PIDDS–not to diminish the suffering of POTS and PIDD patients. Just saying there are certain disease I’ve read about now that you just don’t come back from. And the attitude most of these patients have?

Ain't no thang but a brain tumor, yo.

Ain’t no thang but a brain tumor, yo.

And as for dealing with those harsh judgments from others? I ask:

  • Do they know anything about my disease?
  • Have they claimed to be a genius after five minutes of internet research? But are not in fact, knowledgeable on the topic as much as they might think?
  • Are they an expert on POTS/Dysautonomia/Narcolepsy/Gastroparesis?

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More than that, I’ve been able to figure out how to maintain my friendships and meet up with my girlfriends. Having a better grip on my health means less lengthy hospitalizations and a wider diet–meaning I can go out for meals with people to socialize.

Had a Publix Chicken Tender sub for the first time in years the other day. It blew my mind!

Had a Publix Chicken Tender sub for the first time in years the other day. It blew my mind!

 

Okay. So I’m still ready to throw my heart monitor against the wall some days, and I still have days where I struggle to put all the pieces of my being together with what feels like a dried up glue stick and wet scotch tape–it can be hard to judge exactly what has gotten better–but that’s the whole point of this blog isn’t it? I feel better.

Then & Now

Then & Now

 

And you can’t tell me I don’t look better too.

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One thought on “What is Different About Now?

  1. I’ve been reading your blog for quite some time – and I just really wanted to thank you for your reference to the Global Genes project. After years of being sick, I was finally diagnosed with Mastocytic Enterocolitis, and am now being assessed for Systemic Mastocytosis (both on the Rare list) and I am really grateful for another resource, a place to potentially guest blog and get involved.

    Also, the courage and bravery in which you share your story, and the ins and outs of your daily life (including being able to see your friends and eat out!) are inspirational for those of us not quite there yet.

    Best,
    Amanda

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