So Many Appointments, So Little Sleep...by Lace Bentley

It gets old needing a nap. It gets old needing to call another doctor, physical therapist, or clinic. You know what gets really old? Having to call another doctor when I need a nap! Good grief...

It's funny when I fall asleep on hold, then they answer. "How can I help you?" "...hang on, I can't remember who I called, give me a second to wake up, please..." Epic!

The struggle is real, my friends. You know this though, don't you?

But I'm also very grateful for modern medicine.

Dear Doctor, thank you for finally hearing me and helping me find the help I needed.

It's been a struggle, and the battle is not over. In fact, it will never end. But at least I'm on the right path, and we know what to call it now.

The first time I heard of Ehlers-Danlos Syndrome, my therapist was telling me about her struggle. I asked, and was working on handling people I cared about having a hard time. Perfect timing for her to get a diagnosis. I was deeply affected by what she was telling me, but not only because I truly cared about her. She was describing my life. I could see the all too familiar exhaustion play out on her face as she shared. She told me just enough to let me know how human she was, and appropriately assuage my concern for her. This started a journey that would take me to the pits of despair, and mountain tops of freedom.

I'm not crazy after all! Though all these phone calls might drive me to drink...

But seriously, hours on the phone every week managing my care, is getting overwhelming. Know what I did today? Started calling at 4 p.m. Yep. That way, no matter what, I only have an hour. I can handle an hour.

So that's what we have to do. Managing the stress and overwhelm isn't easy some days. Today though, I am thankful that offices close. Office hours are the light at the end of a very long tunnel. Thank you to the, 1.5 million doctors that I need to call. You are all closing soon, which means the messages I left won't be answered until next week. Maybe they will keep interrupting my musings for the next few minutes. That's fine, at least I'm not falling asleep on hold!

Hey, there's one now! Gotta take this call...

Wishing you many spoons on your journey!

Oh! And look how cute these compression stockings are! I'm getting the royal paisley, because if you're going to wear armor, you should look good doing it.