Real People With Dysautonomia: Stephanie

You are doing everything right.  You’re exercising, eating well, losing weight, and generally taking care of yourself.  But, your body is still revolting seemingly at every chance.  Back in 2020, that’s what happened to Stephanie, a then 32 year old woman from Michigan.

I was having chest pain, I couldn’t catch my breath going up the stairs, I was dizzy getting out of the shower, and I was falling asleep on the couch at random. 

 

My symptoms have been present for a long time but it started to get really bad in January 2020. I was taking really good care of myself, exercising as much as I could (4-5 times a week, good nutrition, losing weight etc.) when I started to have chest pain, dyspnea (dyspnea is shortness of breath) and dizziness. My amazing PCP (primary care physician) ran tests for blood clot (negative), exercise induced asthma (also negative and that test made me REALLY dizzy!); and thought it might be SVT so she ran a Holter test. The day that my Holter was over, the chest pain worsened so I went to the ER. 

 

The ER couldn’t figure out why my heart rate was in the 150s and worsened with movement. They checked for pericarditis, ran a CT scan, an x-ray (where they saw a cloud type thing on it that eventually resolved), and basically said: we think you should see a cardiologist but since it’s not a heart attack, you don’t need to be admitted.  

 

So I finally see a cardiologist and they’re like “we don’t really see anything wrong with your tests so we don’t think it’s cardio” then send me back to my PCP. My PCP sent me to the first rheumatologist who diagnosed me (after a 5 minute visit and 1 very expensive test) with fibromyalgia in May 2020. Fibro is a very real thing but it did NOT fit my symptoms.  I required a second opinion.

That was a lot of bouncing around to different specialities, and Stephanie still wasn’t done!

In March 2021, I saw my current Rheumatologist (who is amazing). She spent 45 minutes talking about my symptoms, doing the Beighton scale, drawing labs and said, “I’ll see you in two weeks - no matter what my schedule says, it will be 2 weeks”. Two weeks later on the dot, she was able to diagnose me with hypermobile Ehler’s Danlos Syndrome, Anklosing Spondyltitis and a probable case of POTS. She sent me to a different cardiologist who did a TTT (tilt table test) which came back positive for POTS. Just like that, we started weekly infusions, then bi-weekly.

 

Last year in April, I had a port put in because my veins were all messed up. Those really helped with my symptoms but since they’re bi-weekly, Normalyte (4-6 packets per day) helps keep my dizziness in check. I’ve tried others, but they didn’t contain the salt I needed. 

We often hear from others with chronic illness that NormaLyte has helped their symptoms.  As an Oral Rehydration Salt (an ORS), we’ve been clinically proven to manage symptoms of POTS.

In May 2022, my PCP suggested a 3rd cardiologist who specializes in POTS and could manage it. I started seeing her and we tried a few things midodrine, Mastenon (which we couldn’t get covered) and Corlanor (which helps but isn’t a game changer.) Now she wants to know what kind of POTS I have so we can get approved for different drugs and hopefully better control my symptoms. I’ve been referred to a neurologist and so far I’ve had an EMG which was abnormal, a skin biopsy and I have a ton more labs to run - so we’ll see where this next journey takes us. 

Were you keeping track?  Two rheumatologists, three cardiovascular specialists, and one very determined primary care doctor.  That’s what it took for Stephanie to achieve her diagnosis and treatment plans.  Sometimes a diagnosis isn’t an easy process, and thankfully, Stephanie was also determined to find a plan.

Stephanie knows she’s lucky her doctors listen to her.

My PCP and current rheumatologist have been God sent - I can send them articles and they’ll read them, let me know what they think, they listen, they’re willing to address any concerns I have and, more importantly, they let me know that I have autonomy in this process. Currently, I have Hashimoto’s Thyroiditis, Fatty Liver, POTS, hEDS, Ankylosing Spondylitis and a potential diagnosis of another form of dysautonomia. 

Even if you’re as headstrong as Stephanie, you still need a good support system in your chronic illness journey.  Stephanie's family has been an amazing daily support system to her.

My husband is so supportive even when it makes things a lot harder (and it does!) My family doesn’t quite understand what it is but they do understand when I say I need something, it has to happen or things get worse lol!  I have amazing friends (one of which has dysautonomia and POTS and she has been an incredible resource and shoulder to whine on!).

 

I carry around a giant water bottle that has a few NormaLyte stickers on it so that’s a conversation starter. I’m up front, I say I have POTS (or Top of the Pots as my husband says) and it basically means that I have an allergy to gravity with a serious relationship with salt.  With friends, they’ve been along for the journey and are either already familiar with it because of my other friends or are learning just as I am. 

 

My co-workers and my boss have been so incredibly understanding and honestly, I would not be able to work if everyone wasn’t so flexible. I work full time as a credentialing specialist. I started that in February 2022.  My boss understood my diagnosis and its impact. It’s hard because I can’t always remember the words that are easy, I feel sick to my stomach, and/or I just can’t regulate my temperature. I’m lucky because I can work remotely but at the end of the day, sometimes you just need sleep.

Did you hear that?  Finding an employer who understands and is willing to be flexible is a way that you’re able to work while also having a chronic illness.  Great employers exist so keep your head up and keep looking.  But, what about people who aren’t so understanding, Stephanie?

I keep it moving. I’m willing to give them the benefit of the doubt to start but the minute someone says that it’s not real or I should just push on, I know that they’re not someone I need in my current life. People are a blessing or a lesson, they’re not always meant to stay.

I'm probably going to have to write that down in a notebook somewhere.  Stephanie goes on to talk about how grief and chronic illnesses are so very similar.  Neither are linear experiences, she says, and there is a certain amount of grief that is experienced daily when you have a chronic illness.  Living with chronic illness can mean grieving the life you wish you had, especially on harder days.

There’s a quote about grief which I think is what so much of what our chronic illness experience is about.  It says, “I hope you have a day, and then another day. Eventually you’ll have ok days. And some time after that, you’ll have better days, good days. One day, maybe when you’re not expecting it, you’ll find that you’re having a great day. You’ll cry less and the good days will outnumber the bad.”  I’m working on being more compassionate with myself, reminding myself that there may be a bad day after a good day, and that’s ok too. 

Knowing how hard life can be, Stephanie says she finds joy in making others laugh or smile. 

When she’s not advocating for herself, she's a lot like the rest of us.  She’s married, has a preteen daughter, and two dogs to care for.  

I love woodburning! It’s so relaxing and satisfying, especially when it all comes together. I also love reading - I just got a brand new kindle so I’ve been obsessed with that. If there’s a day where I just can’t with any of that, it’s true crime shows, or terrible reality tv.

Any influencers you follow?  Anything else you’d like the world to know?

@DysautonomiaInternational

@positivitypotsedsmcas

@chronicillnesshumor

@cortdoesscience

@iamthirtyaf (because … I am 30+ haha!)

@awarenessforPotsies

 

Sometimes I just need to know that I”m not alone. There are others, of course but these are just a few. 

 

Thank you for hearing from me and others. Any day that we can listen and hear each other's experiences is a good day.