big news (and an apology)

I’m behind on the blog and writing back (again). I know I keep apologizing but I do believe at this point, most of you get it. You know what it’s like to live with what I have and how sometimes, it takes all you have to focus on the everyday, let alone side projects. I hope to be updating and responding soon!

As for the big news… I’m going to Vanderbilt! I still can’t believe it even as I type it… I’ve only been talking about going since this all began. It all started when Dysautonomia International posted on their Facebook page that Vanderbilt was recruiting for a study titled Dietary Salt in Postural Tachycardia Syndrome. It turns out that I qualify for at least a screening study of sorts, which requires a 3-4 day hospital stay. Vanderbilt wanted to know when I could come and so now I have flights booked March 9th through the 12th! Never thought there would come a day where I am excited to be staying at a hospital or being a patient guinea pig but let’s face it… if we’re going to have something like POTS, we want to know all we can to get or at least FEEL better. This is a big opportunity for me and my condition. It is also is an opportunity to add my case into the research for autonomic disorders – and hope that it helps pave the way to more answers for all.

Since my official diagnosis of Postural Orthostatic Tachycardia Syndrome, my doctors and I have sort of been in the dark. University of Penn wouldn’t run the tests my doctors asked of them (or at least the Penn doctor who I saw wouldn’t send me for those tests for whatever reason. Ego? Yep, I’m going to go with ego issues.). Treatment tried so far has not helped and in fact, likely made several things worse. So I’ve sort of just been coasting (and crashing). Keeping my head down as much as possible and getting through my day to day the best I can. I’ve been living with many of the symptoms since as far as I can remember so I do have learned “coping mechanisms.” Totally sucks but you do what you gotta do to get by. Or at least I do… too much stubbornness to do anything else!

At minimum, I will be at Vanderbilt (their Clinical Research Center) getting tests done that will hopefully characterize my POTS specifically. They will use my information towards other studies and if I fit the requirements, I will have to come back down for their big Dietary Salt in Postural Tachycardia Syndrome study. I’m pretty sure a lot of this will be torture (doing the tilt table test again is enough to make me shudder) but it’s for the greater good and that’s all I can focus on and smile about.

It’s been killing me not knowing what my body is doing (or not doing). I’m a research queen and I never understand the people who are just perfectly content taking what their doctor tells them at face value. I also never understand the people who don’t know how to properly research and go off the deep end – absolutely panicking over the misinformation they found. If you’re going to research, you have to know your body. You have to know legitimate sources. You have to be able to think outside of the box and understand what you are reading or looking at. You have to research your research. And then research some more. I want to know every single little thing about what’s going on because I find it to be so vitally important to the bigger picture. It’s not because I’m scared or anxious about something awful happening. It’s because I’m forever curious and I love to learn. It’s because I want to know why so that I can try and make it better. If not for me, perhaps my children and grandchildren.

But anyway. Here I am. I haven’t seen my regular doctors (at least most of them) in the way I should have been in awhile so I guess I better update them. I haven’t seen the point of going in to see them when all they will do is tell me what I already know or send me out for more tests that no one knows what to do with beyond performing them. What do the results mean? They don’t know. Not about this. And that’s why I have been so desperate to see doctors who specialize in what I have. It’s why my doctors have been so desperate for the same.

So here’s to finding more answers and hopefully new ideas! It’s kind of scary that I am going down there all by myself (have to) but one of the good things is that I have a very good friend living down there that will be able to visit me at the hospital during my stay. I haven’t seen her in almost 8 years so I’m pretty excited about it.

I’m going to try to document as I’m allowed during my stay. I was hoping for at least Sean to be going down with me and I was going to teach him how to use my film camera to document when I couldn’t (nerd alert!) but that isn’t in the cards and that’s okay.