EDS on Mystery Diagnosis

Ehlers-Danlos syndrome will be featured on Mystery Diagnosis this coming Monday, December 8th, at 10:00 p.m. on Discovery Health Channel. The episode is called The Baby Who Wouldn’t Stop Crying, and I’ve heard that EDS will be featured during the second half hour of this hour-long show. It will replay several times during the week and you can check the schedule for more times.

I wanted to apply to be on this show, but it looks like I’ve lost my chance. I don’t think they’d feature EDS again – although this will technically be the second time EDS has been mentioned on this show (the first time being an episode about a girl with Chiari malformation and EDS), and I have a different type of EDS than the person being featured (but that’s just splitting hairs). I’m just glad that someone is spreading awareness of EDS.

I wish my doctor could see the show, but I have no way of telling her about it until I see her on the 19th. She and I haven’t been seeing eye to eye for a while now (and I don’t particularly like her nurse, who is sometimes always cranky), and I have had a lot of stress and worry around the situation with no real way to fix it. But that’s another story for another day.

I also have appointments with The Useless Rheumatologist and a(nother) cardiologist this week.

I have to go back to the rheumatologist because my doctor can’t make up her fucking mind about whether or not I should take pain medication for, you know, MY PAIN. As she says, “If the rheumatologist says it’s ok, then I’ll be ok with it.” Now I have to go back to a doctor (rheumatologist) who I felt didn’t really understand EDS and definitely doesn’t really understand my pain JUST to ask if it’s ok to continue on medication and hope he says yes. And when he does say yes, I’m holding my doctor to it.

I’m going to the cardiologist because my heart rate and rhythm has been out of control for several months and we can’t quite figure out why. My blood pressure has been way, WAY out of whack – it’s either extremely high or extremely low. We’ve been trying medication after medication to try to fix both problems, but nothing has helped. And let’s not forget the echocardiogram to take a look at my wonky ticker and its fabulously enlarged aorta (Dear Aorta: Bigger is NOT better. Love, Ioma) and pray like hell I don’t hear The S-Word (surgery).

My symptoms are drastically worse when I’m vertical – the longer I’m sitting up, the crappier I feel. I can only sit up for about 30 minutes before I’m forced to lay down because of dizziness and blacking out, or pass out and scare the neighbors with the mysterious THUD (and wake up with a dislocated…something, no doubt). This is part of why I haven’t been blogging or commenting much (I am still reading people’s blogs, though!). I haven’t really felt like blogging because I don’t always have something nice to say, and I know that nobody wants (or cares) to listen to me whine about my health and how they can’t fix it and my doctor doesn’t get it (or care).

So, watch Mystery Diagnosis on Monday night, and if anyone needs me, I’ll be in The Angry Dome.