Thursday, January 5, 2012

2012 In Full Effect!

I can't believe it's been over a year since I last posted on here. Life has been kind of crazy! I've been working full time as a corporate graphic designer and part time as a freelance designer and blogger. I feel very fortunate to be able to do the things I'm doing...though I'm not quite sure why I'm able to. Granted I've done a lot of hard work with exercising, eating well, staying hydrated and taking my meds (and the hard work is constant)...I don't know why. Don't get me wrong, I'm thrilled and I'm certainly not looking this gift horse in the mouth, but it boggles the mind why some of us get better and so many of us don't. That's not to say I'm cured or anything...I definitely have rough days still, but I'm able to get through them (upright for the most part) and I'm so thankful for that.

All that are YOU doing? I'm wondering how others are. If anyone is getting better, finding new/better treatments, found any great docs lately...anything.

Comment on here and let me know how you're doing.

Wednesday, December 1, 2010

Back To Work!

That's right...I'm back at work! A month ago I was hired as a graphic designer for CB Richard Ellis. It seriously is my dream job! I feel like I have to pinch myself most of the time...considering not too long ago, I didn't think I'd be able to walk up a flight of stairs much less get back to a 40 hour a week design job. :) Kind of amazing.

I have to credit my ability to work with a couple of great docs, some effective meds, a strict/but mild workout regimen, an amazingly supportive wife, and an iron will.

Although I'm working, that does not mean I'm miraculously cured! I still have my fair share of bad days...more than I'd like to think about actually, but I am able to get through them because I've learned what to do to help myself. My body has a hard time maintaining homeostasis internally, so I have to help it externally. What I mean is, I manage my body temperature with heat and/or AC, I nourish myself often, I drink fluids constantly, and I take my meds to help maintain my blood pressure. These are only a few things I have to do on a daily basis, but they happen to be the ones that stick out in my head at the moment.

I'm thrilled to be working and will write again soon about a typical day in the life a working Dysautonomia patient. From the meds I take (and dosages) to what I wear and the exercises I do on my workout days.

Though things are going well for me, I hope on a daily basis a cure is found so that I don't just have to "get through" the day and may even be able to enjoy my day at some point. Not too much to ask, I think.

Thursday, August 19, 2010

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.

Thursday, February 18, 2010

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. :)

Wednesday, February 17, 2010

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.

Monday, January 25, 2010

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!

Friday, January 8, 2010

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!