Duke Syncope & Dysautonomia Appt

Had a good appointment at the Duke Syncope & Dysautonomia Clinic today! Being honest with doctors FullSizeRenderis not something that comes easy to me, but I think I did pretty well today. My blood pressure readings are looking MUCH better than they have in months prior! That is likely due to super high doses of Midodrine, & Fludrocortisone, as well as 12mg of Prednisone daily…but it is a good thing regardless. They were concerned with my heart rate, though. Despite taking all my Dysautonomia meds (including Bystolic, my beta blocker) & getting IV infusions, I am still experiencing significant tachycardia, especially upon postural changes. My orthostatic vitals today, for example: 113bpm lying down, 129bpm sitting up, 147bpm standing. Now, those numbers aren’t terrible…I’ve definitely seen worse, this week alone! But Jenn was not happy with those numbers & said that kind of increase upon sitting/standing is not good considering the medications should be taking care of those dramatic spikes. She was also a bit concerned because that was simply standing still, not trying to walk and carry on about the day. We agreed that the Bystolic is not the right med for me as it drops my blood pressure too low (causing me to need more Midodrine which I already take an overdose of each day)…so she is putting me on a new med called Ivabradine. I’m really excited because Ivabradine helps lower heart rate without impacting blood pressure! Only problem is it’s a med generally used for heart failure patients, so we will probably have to fight with insurance to get it covered. But Jenn says she’s confident we’ll win the case, considering I’ve tried almost every other beta blocker out there and my symptoms are so severe! Really hoping it is a quick process getting it approved, as I am super excited to try…especially because, once we finally get my heart rate under control, I get to begin physical therapy! IMG_9020Jenn referred me today to a PT who is familiar with Ehlers-Danlos Syndrome & POTS! Nicole sees him and really likes him. Apparently, he understands the pain, dislocations, fatigue, weakness, etc. that comes with EDS & how to best work with/through such symptoms. Really looking forward to it! Also while Mom & I were at Duke, we met a fellow Zebra who was using a wheelchair with SmartDrive. We ended up talking with her about it (& other things) for a good 15 minutes, and on the way home from the hospital, mom decided we will have a fundraiser because I need one, too! More on that later.. 🙂 Now for a nap– that appointment left me exhausted!

 

 

Spoonie Sisters!

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Spoonie Love ❤

This evening, I finally got to meet my beautiful, sweet, strong spoonie sister Nicole! We’ve ‘followed’ each other & talked online for almost two years now, but we never got to meet in person despite living only a half hour away. She is INCREDIBLE– truly one of the most beautiful souls I’ve ever met. She endures so much each & every day, yet somehow manages to find joy through it all. She is a superhero! She’s been a huge encouragement to me throughout this crazy chronic illness journey. My heart is so full after getting to hug her in person! We literally just hung out on her couch for like three hours, talking, laughing & commiserating about anything & everything. We could just BE- the good, the bad & the ugly- without having to explain ourselves or wear a fake smile. We both needed this so much. I’m beyond excited for our future spoonie adventures! Love this girl SO stinkin much!

Vertigo

The landscape seems fractured

      as the sky’s plates shift

on one another

 and the horizon tilts  

while bright colors swirl around me

 like paint on a surrealist canvas

and I cannot help but notice that

 the shambling creature

who once lurked in my shadow

now lurches in my shoes,

stretches her legs in mine

and trips up my feet

as I stagger through a swaying world…

 

119lbs??!

Guess who now weighs 119 lbs??  This girl!!  Wow.  I haven’t weighed this much in years.  None of my pants fit anymore!!  But hey, I’m not complaining…that is a great problem to have.  I’ve been working so hard to get to this point.  I’ve had this feeding tube for 9 months now, and it has slowly but surely given me my life back.  So thankful!

Syncope

Hanging off a ledge,

   The aching hole beneath my dangling feet

is waiting to devour me.

I try to scream, but my breath is caught

   as my fingers curl

     around slippery thoughts

     and jumbled words

and suddenly I’m falling–

   tumbling faster and faster

into the abyss

         until

       nothing.