So they scheduled a title table test on Monday to check me for Postural Orthostatic Tachycardia Syndrome and other autonomic disorders.
It's funny... I get really mixed feelings about all of these tests. Part of me hopes they will be + to validate how awful I have been feeling, and part of me hopes they will be - because I don't particularly want to be diagnosed with whatever they are testing for!
I have had sitters 45 hours a week for the past couple of weeks... which has given me a lot of time to focus on resting and managing my energy and how I have been feeling. I have been keeping an hourly log so I get a sense of how long I can go before I need to rest... So I had a streak of several good days in a row that made me feel hopeful. Then my brother-in-law, father in law and his wife came into town. My FIL has Parkinson's so we are a nicely matched pair -- neither of us are very active. On Friday I didn't do THAT much more than usual -- I did rest less and sat up, talked, and walked around the house more. I guess it was enough more, especially coming on the heels of all of the testing/DR visits, that I CRASHED. By 4:30 I was feeling woozy. By 5 my hands were shaking, the room was spinning, I had nausea, chills, aches; my body felt as if the life was drained out of it. I made it to my bedroom, closed the door, and collapsed. I think if the house had caught on fire I could not have dragged myself out of that room. It took me 2 hours to gather enough energy to go pee. It is periods like that when I feel trapped in my body and helpless... and frustrated that I am not getting better... just getting better at not pushing so I have fewer crashes. Anyway. I just needed to vent. Today all of the boys are out biking and I am resting. On the couch. Or, as Ben put it this morning, "Look! Mom is back in her usual place!" It's bad when the kids are thrilled to see you sitting on the couch instead of curled up in your bed.
Oh.. the cardiologist drew 6 more vials of blood. I think my blood is mostly Gatorade at this point.