In Case You Were Wondering, This is What a Flare Looks Like

…and I’m done.



Two IV’s in the last two days.

Midodrine is done. Powerade Zero is done.

I’m done.

DONE, everyone.

I’m finished. I’ve cleared my plate. I’ve left the table. I am not playing anymore.

I’m over medications not working. I want someone to put on some white scrubs, grab a scalpel and start redesigning my heart valves. Go ahead. Anyone. Homeless man, here’s some iodine.

Let’s do this. Let’s fuck shit up. Give me a port.

Give me an IV all day every day. Let a radioactive spider bite my hand. Call in the witch doctor. Let’s do a torso transplant. I’m ready. I’m ready to make desperate, expensive choices.

I’m ready to kick the next cardiologist who shrugs at me in the teeth. I’m ready to run until my heart explodes just so we can do something drastic. Just so we can make an urgent plan of action. I can’t be in limbo forever, you can’t just let me feel like this forever.

I don’t even have the energy to go into all the fabulous details of the last two days but suffice it to say that my current plan of action is crispy burnt toast and I’ve gotten to the point where I feel like if I don’t get some relief soon I’m going to do something crazy like drink coffee or give up on climbing stairs and start sleeping in the quiet hutch under my staircase with my lopressor in one hand and a confused and disturbed poodle in the other.

We kind of worked out a plan for the next few steps of treatment…bring in some more specialists…try to change my hydration methods…reach out to some experts out of state…

I know that if I read back through this blog and look at every time I had a flare-up and just how bad I thought it was then–maybe this all would’t feel so extreme, maybe in comparison the last few days would even same mild….

Sometimes I feel like just when I’ve come to grips with how enormous an impact this disease has on my life…it swallows up a whole other limb an drags me down further than I thought I could go…and the funny part? I still have to walk my dog, do my work, and buy groceries like this is just Tuesday with dysautonomia and I’m still going to have dysautonomia next week–same time, same place.

giphy (4)


Ask me again next Tuesday.



  • Holly

    I was recently diagnosed with Pots. I went from an active life. Mom of 4, softball coach, Volunteer EMT/Fire fighter, full time pre-nursing student, working full time as an office manager at a radio station, etc., to being so sick that I spent 18 + hours a day in bed. It started with what felt like little panic attacks(it was a guess because I’ve never actually had them before so I wasn’t sure), that developed into it happening more and more often and then it transitioned into a state of pre-syncope. Within a couple of months, I was bed ridden. I went down to part time in school and ONLY did online classes from home, I took a leave from my fire department, I started missing tons of work, and I was seeing so many doctors that my head was spinning(no pun intended).

    Since my diagnosis in March, I was started on Fludrocortisone… which is hell. Did it help? Yeah, some. It made me at least able to return to work and I was able to coach my daughters softball team this summer(mainly from the bench, but I did it and thank God my assistant coach was so pro-active and helpful). I finally started driving again but ONLY locally and short distances. However, I still have the constant fear of it happening. Nothing feels normal. I always feel like I’m in a dream state and nothing is real. At times I’m even afraid to be in the shower more than a few minutes because I’m terrified that I’ll go out and wake up to EMT’s and Paramedics(all of whom I’m friends with thanks to the small town I live in, so we all know eachother well) picking me up out of the bathtub completely naked. I drive myself absolutely crazy from this damned disease.

    It’s been 8 months now and I’m just starting to accept this as my life now. That I’ll never be “normal” again. I don’t know what happened or why but this is about as good as they can get me. The medicine made me put on 15 lbs of fluid weight and I have about as much stamina as a walrus but hey, “At least I’m not completely passing out anymore”.

    Life sucks. And, there is nothing more frustrating than this.

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