It's Been A Long Long Time...

I am so sorry I have been MIA. I have been working my ass off trying to get back on my feet and ultimately back to work. I'm not even sure where to start really. Since my last post, I have gotten a lot better. That's not to say that I don't have bad days, but I am able to get through those bad days without a trip to the ER now...which is probably just because of shear stubborn will. I am currently on Florinef and Acebutelol. It seems that I have struck some sort of balance. My BP is more under control, my heart rate has been awesome, but my other symptoms are still hangin out. It's cool, I'll take what I can get. I started a mild workout regimen. I ride the recumbent bike every other day and that has helped a great deal. My stamina is much better, my strength is much improved, and overall I feel better. All that said, I still deal with serious bouts of lightheadedness, random pain, heaviness in my body, visual disturbances, and other fun things unique to us dysautonomics. I just don't give a f*@# anymore! I've decided that I'm going to live my life to the best of my ability and tell Dys to kick rocks (when that's possible).

I really just want to get back to my life. I want to be able to provide for my family. I want to get up in the morning, go out into the world, and do something productive. I want to plan trips with my partner and go explore new places. I don't want my life to revolve around doctor's appointments, medical bills, and soap operas. Yes...sad, but true. I watch the soaps. What else is a girl to do when she's stuck at home alone all day?!

Anyway, I am trying really hard to get back out there. I've been doing little bits of graphic design work and blogging here and there...but I long to be out in the real world. Designing for companies, making a living, and leaving my mark on the world. I know that is not going to come easy...just as getting to where I am right now hasn't come easy. I'm just staying positive, working really hard, and keeping my eye on the prize.

I'm not sure if anyone still follows this blog, but if you do as always, I hope you and your love ones are doing well. Stay strong and never give up.

Demystify Dysautonomia on Facebook

For anyone who is on Facebook, feel free to join the group I started on there. It is called Demystify Dysautonomia. The link to it is under my Sites of Interest. There's a lot of information and support on there and all who are interested are welcome. :)

Wanted to Update

I haven't written in a while, but wanted to update and let everyone know that Florinef seems to be helping. I'm still having some issues controlling my heart rate, but my BP has been better...until the last couple days. It's been a bit low while standing and high while sitting. Trying to find a happy medium. All in all though, I'm feeling much better than I was a month ago. I'll take whatever I can get. I'm just going to keep trucking and trying to figure out what works for me so I can get my life back. :)

BTW, I'd like to thank those of you who are following my blog for your kind words and support. I hope you are all doing well. I wish you and your loved ones all the best.

So I spent 4 days hospitalized last week because of this crap. Trying a new medication. Fingers crossed that it works. I'm so over it...and ready for a cure!

It's been a long time! Things are okay on the Dys roller coaster today. Still working with Stanford to get it figured out. Let the testing begin!

Pissed off tonight about all the ways dysautonomia has changed my life...

Not sure when I last updated. I've had some good days and some really rough days. It seems that my meds are not cooperating with my body. Time for a new plan...