LIMA — Most people do not even think about the act of standing up, but for Linda Parsons, this simple act can cause dangerously low blood pressure, accelerated heart rate and even fainting.
After years of having symptoms that were misdiagnosed, a particularly bad flare of symptoms after a virus led to her finally being correctly diagnosed at Cleveland Clinic in 2005 with Postural Orthostatic Tachycardia Syndrome, commonly known as P.O.T.S.
Parsons was diagnosed using a simple test called the tilt test where she was strapped to a table and then the table was tilted at 70 degrees. “Within seven minutes, my blood pressure went to 26 over 14,” said Parsons. “My heart rate went way up to try to compensate. What happens with POTS is your blood pressure drops when the blood pools in your legs. Normal people’s bodies can pull that blood up, but mine can’t do that, so my heart starts beating hard to try to compensate for that.”
P.O.T.S. is part of a larger disorder called Dysautonomia which is a dysfunction of the autonomic nervous system. In other words, the things in a persons’ body that are supposed to function automatically, do not. Blood pressure, heart rate, breathing and digestion are just a few of the things that can be affected by this disorder.
In a strange twist of fate, Parsons’ husband John was also diagnosed with a form of Dysaunomia in August 2012.
Dysautonomia disorders affect people differently. Parsons explained that some people who have it are able to function, while others are bedridden and unable to drive or work.
Being chronically ill brings a host of other issues besides the actual illness. “I got to the point where I told my mom that I just give up,” she said. “I’m worthless, and I can’t even do anything.”
Parsons mother pointed out that Parsons had helped numerous people by sharing information. “It was then that I realized that I was more than my illness.”
Parsons belonged to an online Dysaunomia support group. Several of them talked about going to paradise. “We joked about how there would be IVs readily available, lots of salty snacks and Gatorade for everyone.”
A young girl messaged her a little later, telling Parsons that that conversation gave her hope which she had lost after being so sick for so long.
The following Monday, at the beginning of this year, Parsons began her online Facebook support group called Potsy Paradise. The group began as a place for people with forms of Dysaunomia to meet, but is now open to anyone dealing with a chronic illness.
Parsons said she started the group for several reasons.
“This disease devastates your quality of life,” said Parsons. “My group is different than others because other Pots groups are informational where people find out about symptoms or medication or treatments. My group is where you can find peace, relax and chat about fun things.”
Parsons partners with another support group where people can find out information, but at Potsy Paradise the focus is completely different. Parsons explained that for many people, the chronic disease takes over their lives, and they become their disease, forgetting that they have more to offer.
“Currently, 125 million people have a chronic illness in America,” she said. “That’s a third of the population. People laugh about being on Facebook, but for a lot of people that’s the only interaction they have because they can’t get out.”
Parsons also said that many times family and friends are often not supportive. The group now has over 200 members, and offers beautiful pictures, music and fun interactions for its members, as well as, support from others who understand how difficult it is to live with chronic illness.
“I just have to tell you how thankful I am for this group,” said Elizabeth Wallace, a member. “Previous to joining, I found myself spending in an inordinate amount of time dwelling on my situation. I have since been focusing on all the things I can do, all the small victories, all the talents we have and the ability to share our lives in a way that celebrates life.”
Even though Parsons admits there have been times her faith has been tested and she’s been angry with God, prayer and faith, her own and others, have carried her through.
“It’s okay to be angry,” she said. “God expects it. I have to take that and everything to God. In the end, I have to go back to what I believe and that is that God knows what He is doing. I see the good this has brought – banding together, building community, good doctors that work hard. The biggest thing for me is I no longer pray for anything in my life to change because I believe He is in control and I’m doing what He wants.”
To find out more about Dysautonomia or POTS visit Potsy Paradise is found at www.facebook.com/groups/potsyparadise.
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