You can almost always find Laura Seil Ruszczyk with a bottle of water or PowerAde Zero.
She often wears compression stockings. When she sits, she tends to prop up her legs. When she feels the need to stretch, which is often, she gets on the floor and does so – even if she’s in a department store.
It’s a price she pays because some parts of her body designed to run on autopilot don’t always do so.
"If you met me, you'd think I was the healthiest person there was – and I'm not," said Ruszczyk, 54, of Hamburg, a former weekly newspaper editor and elementary school counselor forced to retire six years ago after she was diagnosed with Dysautonomia.
Dysautonoma is used to describe several conditions that impact the autonomic nervous system, which controls heart rate, blood pressure, digestion, dilation of the pupils in the eye, kidney function, and body temperature. Common symptoms include unstable blood pressure and abnormal heart rates, lightheadedness, nausea, brain fog, and fainting. At this point, there is no cure.
Ruszczyk is a leading advocate for those with the related conditions. She serves as a state moderator for the Dysautonomia International Facebook page. She also has arranged a Blue Moon Over Buffalo Paint Night (the nonprofit group’s color is turquoise) at 6:30 p.m. Tuesday to bring more awareness to the condition, raise money for the nonprofit organization and spread a little fun. The cost is $35; the location, St. Bernadette Catholic Church, Community Room, 5930 S. Abbott Road, Orchard Park. Register at bit.ly/Buffalo2018. All are welcome. Those who attend are encouraged to bring their own snacks and refreshments.
Ruszczyk lives in Hamburg with her husband, Stephen, Erie 2-BOCES principal, and their three children, ages 15 to 23. Her resting heart rate once stood at 45 beats per minute – far lower than typical – and would race quickly and unexpectedly to 80 to 90 beats per minute because of Postural Orthostatic Tachycardia Syndrome (POTS), a common type of Dysautonomia.
Her resting heart rate now is restored to 62 beats per minute and when her blood pressure drops, her heart rate increases to help her avoid passing out, thanks to a special pacemaker installed five years ago by Dr. Blair Grubb, a cardiologist at the University of Toledo Medical Center in Ohio – and one of few cardiologists who specializes in treating those with Dysautonomia.
It takes an average of four years for someone with Dysautonomia to receive a diagnosis. Ruszczyk was diagnosed after the summer of 2010, when her heart rate started racing twice during strenuous bike rides and she almost passed out.
A tilt table test – in which your body is turned into different angles – is key to a diagnosis. Ruszczyk had one at Case Western University in Cleveland eight months after her symptoms started.
"My legs turned purple. My legs started shaking. My head hurt. I thought I was going to puke,” she said. “I couldn't focus. Your oxygen leaves your head because your blood pressure is dropping. Your blood is pooling in your legs. The guy at Case Western who did my test was really funny, and telling me jokes, but I couldn't process them because my brain wasn't working. Eventually, I swore and passed out."
Many of those eventually diagnosed with Dysautonomia are at first told they appear to be suffering from anxiety, Ruszczyk said.
“Most people can stand for an hour and nothing would happen to them. I can stand for 5 minutes and my blood will pool in my legs and my legs will get purplish. I'll start getting a headache, I'll get nauseous. My heart rate will go up and I'll feel like I'm going to drop. I don't pass out, but a lot of people do with this.
“Now, I don't stand still. I move around. I lean against things. I squat. I sit. Standing is really, really hard.”
Ruszczyk said she has learned to live with her condition with help from her faith, family, loved ones, medication and, when needed, counseling.
Support from those with similar limitations also is key. It’s why she leads a HopeKeepers group for those with chronic health conditions. The group meets at least once a month at Sts. Peter & Paul Catholic Church, 68 E. Main St., Hamburg. Upcoming meetings include Nov. 3. For more information, email email@example.com or call 649-4902.
“I'm a functioning person because I've learned what to do to help myself,” Ruszczyk said. “I also have a really good team of doctors, but it frustrates me because I have to travel for (specialists). Some people are bed-bound. Some people are in wheelchairs. The president of Dysautonomia International was in bed for months and months, and now she's the most amazing advocate.
“I usually wake up and take my meds right away because it's the only thing that's going to help me feel somewhat OK. I have to drink a ton of fluids. … On a good day, I can go out and do things. I exercise because that helps with the pain, it helps me feel better. Thank God, I can still bike. I'm up to about 10 miles at a time now. It isn't as far as I used to ride, but it's good enough for me.”
Twitter: @BNrefresh, @ScottBScanlon