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Wednesday, April 17, 2013
12:00 AM | Posted by Tara
Every day I see my hero. She gets up and comes downstairs. She spends most of her day online because it’s an effort for her to do much else. She’s my daughter, Ostara. Last week, she turned 16.
Ostara has POTS. That’s Postural Orthostatic Tachycardia Syndrome for those of you who don’t know what it stands for. The doctors that deal with this condition estimate conservatively that 500,000 people in the US suffer from POTS, though they say there may be many more because it’s difficult to diagnose, and many doctors don’t consider it despite the fact it’s been written about in medical journals. POTS has several symptoms that make it hard to pin down, including a general feeling of dizziness, an increased heart-rate when the patient stands up, chest pain, nausea, headache, stomachache, joint aches, and brain fog. It seems to manifest slightly differently in each patient. It can occur suddenly or gradually, at almost any age. Women seem to get it five times more often than men. Ostara got it at age 13.
She was walking across the room. She stretched her arms, you know, like many of us do, and then she fainted. From then on, she’s been on a downward spiral. At first, she was dizzy off and on. The doctors had no idea what to tell her. She didn’t quite know how else to describe how she felt. Gradually, it got worse. We went to doctor after doctor until we finally discovered her current pediatrician. While she wasn’t sure what was wrong with Ostara, she wasn’t willing to give up. As Ostara’s dizziness increased and she began showing other symptoms, the doctor finally ordered a tilt table test last fall.
During this test, they were able to recreate Ostara’s fainting and we finally had a diagnosis: POTS. We had something to research. We found a book on the subject and learned a lot. Ostara has continued to worsen. She had to give up her walks around the block that she so enjoyed because her dizziness was getting so bad she couldn’t handle it. We ended up getting her one of those rolling walkers. Now on her good days she can go out. When she gets dizzy, she can sit down on the seat until she feels better. Her brother always goes with her so she’s not alone. She knows she’ll probably have a bad day or two after she does a walk, but she does it anyway. I admire her for not giving up.
She’s still willing to try anything her doctor suggests in the hope it will help. So far, nothing really has, but she’s always positive.
She uses her time on the computer to work on her art. In the past year her skills have improved immensely. She draws the cutest characters. I admire that she uses her time to improve herself however she can, despite the brain fog she often complains of. The brain fog makes it hard for her at times to put coherent thoughts together or concentrate for long periods of time. But still, she doesn’t give up. She has her sense of humor, she greets every day with a smile, and she’s always ready to laugh, even when she feels awful.She’s my hero.
Toni Rakestraw is an editor by day and a writer by night. She has written another short story, The Longest Night, for Pagan Writers Press. She also co-authored Titanic Deception, a full-length novel, with her husband John.