Swimming day one

I drove 6 hours twice in three days and and then crashed. I've also been really nauseous lately. I think it's my cortisol. On top of the other stuff, I'm not producing cortisol. So I'm supposed to be on 20 mg 2x a day of hydrocortisone. I've really only been doing 20 in the a.m. and 5 at bedtime. So I probably need to add in another 10-15 mg in the afternoon. I just hate taking huge amounts of steroids. But I also hate being nauseous.

I also decided I need to start my exercise routine. Everyone mentions how important it is. I normally hit the gym hard, but it virtually impossible when just standing raises my pulse rate to 120. Swimming seems like a great alternative.

It went well. I had to go super slow. The slightest attempt to really swim laps wore me out. So I did really really really slow breast strokes and back strokes. Just anything to get moving I think is a good start. At least that's what I'm going to keep telling myself :)

I also purchased a new hear rate monitor. I researched this to death. I purchased a low end puma brand which has worked okay but the chest part drove me nutz. It was a hard band. Girls have boobs. The monitor has to be worn under the bra strap. All that in one area can be too much. And I couldn't wear it in the water. It was $65 from amazon.

I purchased the polar ft4 today from a local store. It was $100 which is the same price as amazon. It can be worn in water. The band is some kind of cloth where the computer snaps on. The watch part takes about ten minutes to set up with your weight, age, time, date, etc. I also modified the target zones because I can't really reach 85% of my max right now. I'd be passing out or worse. I wanted it to warn me way before I reach that.

I also picked up some body glide anti-chafe to help since I have to wear it a little more than most people. It comes in a half size which is great for my purse.

So my first thought are... I'm really surprised at how little I can do. I was running this time last year. Not well, but I was doing it. Now I can barely swim. But I do feel better tonight after doing it. I'll go back tomorrow!

Why Eight Neon Crayons?

When I was young I had a pack of crayons which simply read "eight neon crayons." I always thought this would make the coolest band name. While I may never be in a band, I think it's a great name for this blog.

Crayons are so versatile. You can color with them straight or sideways. You can bear down or color light. You can color in the lines or scribble as you please. Even after they break you can melt them down and make cool art or new crayons!

And no matter how bad your day is going or how filled with anxiety you are, you can always grab a coloring book and crayons and be on your way to happiness.

Good link

http://www.potsrecovery.com/2010/05/what-is-hyperadrenergic-pots.html

Coughing and energy

So coughing has been a new and strange symptom. I've read where several people get this symptom, but,I can't find what they do for it. One doctor said to try cough medicine. Yeah,okay. It's not really a bronchial thing. I thing the reason must be from the buildup or conservation of blood around the heart/lungs.

It's been surprising to me to read about how affected people are with this disorder. Either mine is going to get much, much worse or I just don't think it's that bad. I have gotten significantly worse over the last year. Even progressively worse in the last eight months. But I can still get up and work a job. That doesn't mean I feel great but I can do it. Things I can't do...I just learned I can't clean the shower without getting sick. I was trying to clean it while in the shower (so maybe over heated) and bent over and I got super sick in a short amount of time. But I'm not a maid so no biggie.

I'm going to drive in the car for six hour tomorrow for the first time since being diagnosed. We'll see how that goes. The last few times my ankles have ballooned up like crazy. Now I have the old lady stockings, though so maybe that won't happen.

January 22, 2012

I have just recently been diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome with Dysautonomia. Do not count me as an expert. I am completely learning each day what that day will bring as far as symptoms. Because the last 8 months have really been such a drastic downhill spiral, I'm going to try to keep an online journal. I'm normally a very type A personality (ignoring the thought even now as to whether or not that has a hyphen) which has made the brain fog very difficult. I've never been a good journal-er. I'm overly critical and try to write too much. I can tell a difference in my typing and handwriting just in the last couple of weeks now so I feel the computer may be my best route.

What really sucks is I had planned on going back to college this summer. I never really understood before why it was so hard for me before. I am extremely smart. I'm a hard worker when I want to be. I even graduated high school early. Then it just seemed to get harder and harder. I couldn't ever get up before noon. When I would tell people that they would tell me I just needed to get on a schedule. Ha! Well, I would force myself up only to be passing out in class or driving. It got scary several times. I even tried to arrange my schedule so I only took night classes. But that's when all the other kids were hanging out and having fun. So then who wants to go to class then? So I scratched and clawed my way through 6 years of college with 140 hours and no degree. Quite a feat, really. Now I want to finish up and I finally have answers, but I'm getting worse!

On top of all that, I have a husband with unexplained adult onset epilepsy. It isn't controlled with medication. Over the last 6 years we have been through countless doctors for him searching for answers. The last two years we have been through 5 brain surgeries. And now they appear to be back. It's taking a huge toll on me, our finances, our marriage, him, his job, really everything.

So this journal will be a no pressure...just as I can get to it journal.