Tilt Table Test... and other amusement rides

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.


Tina in CT said...

I just feel so badly but I'm sure you know how everyone is thinking of you, wishing you well and back on your feet.

Joe Ganci said...

Katya, I feel so bad that you are feeling this way. I hope they cure you soon. You've got too much to give to not have all the energy you need. Kisses and hugs to you.

I'm still in Italy with mom. She's not getting better. She just lies in bed in what's called a waking coma, not moving, staring at the ceiling, her eyes open. She appears angry with us but it's hard to say because she doesn't talk or move. However, they have found out what's wrong with her, at least in part. You can read about it on my blog, www.joeganci.blogspot.com (Thanks, Katya, for providing a link.)

You asked me if I've been watching the new season of Avatar. Because I'm in Italy, I haven't been able to watch Nickelodeon. I've tried accessing Avatar episodes on line but they all want me to install stuff and I'm not willing to compromise my system. I may have to wait until i get home. I've tried the Nickelodeon site but it doesn't work for me. I've tried iTunes to see if I could purchase the episodes but iTunes won't load at all! It says it can't find the iTunes folder in My Music folder. I even reinstalled iTunes entirely. Aaarrrggghhhh!

Feel better, sistah! We need you!