Monday, March 19, 2012

Rambling Thoughts

This is one reason I hate getting sick. It always throws me off on my sleep schedule. It's almost 3:30 AM and I'm awake, with tingly hand and foot. For some reason it happens more on my left side, though some times both. Side note, apparently my phone wants me to get back into yoga. Swype turned though into yogi.

Still trying to do more research but not getting anywhere. I don't feel like waiting 28 days for my cardiology appointment. And I'm starting to get nervous. If I'm not mistaken, Dr. K (who I will be seeing since Dr. T moved) is the same doctor I saw in 2008. The one who did ONE test, proclaimed me healthy and never bothered to help. In fact, the reason I was proclaimed healthy is because I couldn't DO the test, which I told the nurse when she called with "All clear", she said she'd talk to him and that was the very last thing I heard from that office until my OB with J sent me. It was my OB with D that sent me the first time (I changed practices because HE moved to the same place Dr. T did). Granted now I have a diagnosis but still. I'm afraid he'll be difficult. Dr. T was frustrating, Dr. K (if he is the same guy) was just blah. I'm nervous and anxious and feeling slightly off but for most of the day I felt normal (for me). My friend came over again and hung out. I apologized for being wonky yesterday and she assured me she understood that I was just having a bad health day. Gotta love those who are understanding, right?!

I feel like I don't have much to write about, I usually just ramble till my mind is blank, post then that's it. Being sick but well enough to function at a reduced level is a little weird. I read others who have all these diagnosis' and are way sicker than I am, and I feel like a fraud. I guess being told it's in my head for so long or my doing etc is kind of hard to shake. Sure I'm sick. I've known that for a while. Sure sometimes I thought I was mostly healthy and couldn't figure out why I was so lazy (again, tell someone something enough and they're apt to believe it, and I've heard it a lot). Except passing out which I did a few times a year. I'd already had a kid and was married before the heart symptoms made themselves known. But I feel like I really have nothing interesting to leave here. Just my ramblings. No surveys since I can't really find actual surveys on my condition and how it affects me and mine. No pertinent information since I can barely find more than 1 page of the same info repeated over and over on not even a handful of sites. Sure I could write about Dysautonomia but I want to read, learn and inform about my specific TYPE. Not just the overall condition, MINE. And not others that have more info. I don't even know if there IS more info on mine. Surely if there was, I'd find it.

I'm not even sure what all of it means. Reading the info (all 1 page on my condition) has me feeling like the NCS just covers fainting. I mean it IS neurocardiogenic SYNCOPE. But what about when I'm not fainting. Sure it covers pre-syncope and stuff like that but is it a broad cover for my health or just a tiny sliver of the health pie. I thought POTS might be a viable option, still a maybe, but I don't know, I'm brought back to the whole "You're sick, REALLY sick, but you're not THAT sick...yet" mind set. And I know I'm getting worse, before, one day off and of bad sleep would've NEVER had me feeling that loopy. Before I could've gone THREE days on almost literally ZERO sleep and wouldn't be space case zombie until the 3rd. I know my health is deteriorating but I'm still kind of functional, right? Or am I kidding myself. I can go with R to friends house if I'm feeling ok, I mean, I'll be sitting down either place. I can cook as long as I don't have to be constantly standing over the stove, and I can sit down on a stool for prep work, I can take my brother to his games (as long as I have some place to sit). Or is it just that I know my limitations so it's easier for me despite being sick. I know I'm sick but how sick? Remember, I've never been FULLY normal. On a scale of 1-10, where am I? 1 being completely dependent and bed ridden, 10 being athletic/active completely healthy. My activity level is wake up, move to couch, not get up unless I have to. Or I chose to (like the above mentioned games, which I haven't done since probably August or September since it's been off season). I get up if I have to like kids stuff or mother nature or if I can't bug R for help getting me food/drink. Other than that, I'm on a couch reclined or laying down. Sitting up usually only to eat, get an energy burst or rare moments where I feel pretty good. But I'm "up" without meds. At least for now/most of the time. Even on days like yesterday when I'd prefer to be in bed, I was "up", albeit space case but up. Later.

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