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POTS: Emergency Preparedness For POTS

I remember moving to Maryland just days before a hurricane knocked out power for days.  No power = no water.  Of course, then we’d planned.  We’d filled bathtubs and water bottles and buckets.  We did the best we could, but then, there wasn’t a Potsie in the family and you can’t always plan because you […]

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POTS: Four Days Later (and no falling shoes)

There’s no fanfare or momentous bouts of joy.  Though I think joy is there, this new freedom has come as quietly as it left.  The dizziness of POTS is nearly gone, we hope, for good. Though we feel so blessed to see that she’s finally found something that works, the house is eerily quiet and […]

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POTS: Her Extraordinary

“When their normal is her extraordinary it’s a very, very precious moment. I know your heart tonight precious friend… It’s full. ♥” – HB   This is all so new.  It’s just been 24-hours since she stood, put her arms out, and broke down crying.  Just 24-hours since that walk to the mailbox and that […]

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POTS: When Hope was Napping.

Kids get sick.  You take them to the doctor.  They get 10 days of some foul-tasting antibiotic.  The next day, really, usually within 24 hours, your kid perks up.  She feels a little better.  Even before the antibiotic is done, your kid seems good as new. That’s the expectation because that’s the norm. And then […]

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Hey, Jealousy.

It’s stupid really.  You know those moments when you’re intellectual, emotionless, brain-self tells you one thing, but the heart tells you another.  Normally it’s ok.  Normally I’m strong and tough and pushing forward and looking at the blessings and truly believing that God will take this and make something beautiful of it all.  Then I […]

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POTS: Physical Therapy

Until now, I’ve had no experience with physical therapy, nor a very accurate understanding of what it could entail.  I was shocked to see that my referral approved 72 visits between now and May.  That’s 3 visits/week which is really going to shake up our schedule a bit… probably a good thing. Our first appointment […]

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POTS: Sprinting again (figuratively)

May be it’s just me, but it seems like it’s easy to slip into “comfortable” with chronic illnesses.  Not that we’re comfortable at all, but unlike the “take this for 10 days and you’re done” sort of illnesses, the constant attack/fight/push gets exhausting and there are times when I feel like we just sit back […]

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POTS: Just a bit of “normal” at The Script concert.

I’d hoped to write a moving post about the concert that I attended last night because the concert truly was moving.  May be I’m just tired or too far into this day of ordinary to summon the right words.  May be the right words for those precious moments just don’t exist outside of rock songs […]

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POTS: Helpless and Frustrated

I hate the word “helpless” and the feeling even more. This is another “sick” week, not from POTS itself, but some uninvited virus has settled in for a stay and just doesn’t want to leave.  It makes everything harder.  It makes my girl miserable.  And though she’s 17, moments like this, she looks up at […]

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POTS: Back in the Saddle

Today it’s more than a metaphor, but the metaphor still applies. It’s been a long year for Tiara and I.  More for her than me.  She’s been through her life’s longest roller coaster, but I’ve been there too, taxi driver and cheerleader, butt kicker and shoulder for leaning.  She’s been to more doctors in the […]

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