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 for a moment or two, take the day to day, and turn off the “fight” for a while because it’s a long road to sprint and we all get tired.
A few weeks ago a friend on Facebook inquired as to how Tiara was doing and I gave her the brief synopsis and told her the diagnosis. We’d had the diagnosis for months, but didn’t publicize. It’s not a secret, but I just don’t want to Facebook everything.
My friend responded in rapid-fire succession with a list of replies back with a plethora of resources and doctors and treatment centers. (She’s a fixer) Some I knew and some I didn’t. I was irritated at first. Yes, she was well-intentioned, but this is MY kid and I felt it a bit presumptuous that she’d think she’d have all the answers after a brief synopsis of our situation. Grrr.
But, it was a kick. I was not going to be bettered by a person completely removed. And my moment of rest stopped. (Yes, I’m horribly flawed.)
I joined another Facebook POTS group. I read more. I pushed my doctor for more. And then, I got on the phone and made the dreaded referral call that I’d been avoiding. I asked for 4 referrals. They’d all been things recommended by her doctors and things that weren’t horribly pressing, so I’d put them off.
- Physical Therapy
- Updated Cardiology referral with a new cardiologist
- Genetic Testing for Hypermobility
- Counseling (We both hate this one, but figure, why not.)
The good news is that the irritating push via Facebook got me off my butt and back into sprint mode for a while. I’m smarter than I was before and all four referrals were approved.
This is a beautiful day. We’re pushing again and we’re going to kick POTS.