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The Chair by the Window

Sometimes when it's been a particularly hard week and I'm laying in bed, I imagine myself picking up the chair by the window and throwing it. Like in the movies - it crashes through the window and hits the ground below. Would I feel better? Then I wonder if I could really pick it up and if it would actually go through the glass. It would most likely just crack the glass and get stuck on the wood framing between the windows...and then I would have to explain why the chair was caught in the window. Is that worse than explaining why it is on the ground below? There were days in those first two years that I really felt like I might try it at any given moment - times that I felt so desperate and my chest so tight and heavy. I actually thought about it a lot. Fortunately, I always ended up being very practical. And continually reminding myself that there are others who have it much worse (I still hate it when people say that to me). Now it's a more occasional occurrence, but I still feel like I can never let my guard down and relax. That's when things always seem to happen.

Although I can say that it has been a relief to have a diagnosis and treatment plan in place, things are by no means easy. After that first IVIG treatment, and going to bed with a false sense that things would be better, and waking up to someone in horrible pain, all subsequent treatments were met with worry and wonder. After several months of treatments and no one waking me up during the night, I started to let my guard down a little. So when Meghan woke me up after antibody infusion number 12 with throbbing arms and legs and a migraine, it surprised me. She ended up missing 3 days of school instead of her normal 2. We usually have to wait a good 4 to 5 days for the IVIG to work its way through and she feels good again. Then as she nears the end of her treatment period (currently 4 to 5 weeks), she starts to notice more twitches than normal, more fatigue, more stomachache pain. Her behavior also changes - I think maybe from feeling the effects of the increased adrenaline her body is improperly releasing. She becomes increasingly disagreeable. Increasingly agitated. Her impulse control is definitely less.

When I was talking with a Mom with a newly diagnosed daughter, she hinted at behavior issues with her daughter that has led me to share things that have happened with us. Things that one would not normally share because the behavior was scary and out of control. But other families need to know they are not alone. And your child is not going "crazy" on purpose. It is a real medical issue and not a mental breakdown. Yelling, screaming, throwing things and becoming someone you no longer recognize. Probably related to the adrenaline release the POTS patient may experience. Coupled with already not feeling well and feeling always doubted by others. These are things not many talk about, but it does happen and can scare family members as well as the patient. Finding a neurologist that knows (not one that has just "heard" about POTS), one that actually knows and understands. This may involve traveling to another city or state. Do it. Do whatever you need to find help. Do not waste any more time. We have learned the hard way about seeing doctors who aren't able to help. And we wasted time seeing a therapist who said she knew about POTS - someone who tried to convince Meghan she could control it and that she was doing it on purpose.

For us, the outbursts are much more minimal now. Before diagnosis, it happened several times a month or more. Always after doing too much. Sometimes I wondered if I should call an ambulance or the police. But it would diffuse and fade and we went on until the next one. There are lots of symptoms of POTS. So often it overlaps with things that seem like mental illness. It all seems a lot clearer in hindsight.

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