This is what happens when my computer is locked up and I can't make illustrations

Wrong again sir!

Ug. I was playing prognosis (tons of fun for you medical types) and one of the summary states that it is important to note that myasthenia gravis is not associated with autonomic distinction. It really irks me that my doctor wasted so much of my life chasing after myasthenia when I very obviously had autonomic symptoms. Not to mention the other doctor that said I would never be able to go back to school because of the first doctors incorrect diagnosis.

Life with EDS

Life with EDS is like running a marathon is for someone who has never run in their life. 

At first you want to do this. You are all psyched up. You are going to do this and it is going to be awesome.

For a while you can run because of that energy. You get a good pace going and you are feeling pretty good. But after a few miles, you start to feel the fatigue. You ignore it because you are happy to be achieving your goal. Then the fatigue really starts to get to you, but you don't want anyone to know that you are struggling. So you pretend to be as good as those around you who have trained properly. It continues to weigh you down and soon the only thing that is keeping you going is the momentum you have built up. And then it happens. Your body physically cannot keep running, no matter how hard you try or how much you want to keep going. The machinery is out of order. It's broken (or dislocated in our case), and it just can't love forward. You have to rest. Eventually you learn to accept these forced breaks. Then you look up and see the other runners scowling at you and saying you are lazy. You get angry, but then the sadness sets in. What if they are right and you aren't pushing hard enough? What if the whole body doesn't work is just all in your head? You try to get up, determined to not be that person. Your body still has not had time to recover but you refuse to sit any longer. You are uncoordinated, you trip and fall and are forced to sit once again. It is then that you realize all of your friends have left you behind. You really can't blame them. You were just weighing them down anyhow. So you sit there and try to figure out how to make it to the finish line. After a long time of sitting you have a bit of strength. You gently get up and take one slow step then another. You know you will have to stop again, you know your friends are probably already done and gone. All you want to do is finish the race. After that you can rest. So you keep going, keep pushing on and on until eventually you stumble over the finish line. You did it. Despite the exhaustion and pain you managed. You pledge to do it again because you know you can do it now. The only problem is this, with Ehlers Danlos the next time will be the exact same. You never become a better runner. All you can do is hope to make it to the finish line again, even though you know there will be pain and heartbreak along the way. 

I wrote this to let people know that even if it may seem like I do some things I want and don't other things that are important. I want to do it all. I want to do the hard work along with the play, but sometimes I just physically can't. Please understand that I'm not blowing you off after work because I don't like you. And I'm not only hanging around for the good parts only to leave when work gets heavy. I just can't make my body do any more than it has, and I have no idea when it will happen. I'm trying my hardest even if it seems like I'm not putting in any effort at all. I'm probably just sitting on the ground waiting to have enough energy to get up and keep going.

I will find a way, I will make a way

Think smarter.

Simple solution to hyperextended DIP. Writing is much more comfortable now! This is 2 makeup sponges taped to my favorite pen with kinesiology tape. I plan on getting some ring splints but this helps a ton in the mean time.

Crazy at its finest

Might have some OCD tendency 

 And what on earth is this? Carbon is supposed to have 4 bonds! That is all biologist are comfortable with! Bad chemistry.

Can you tell I should be studying for my biochem exam (I am about 1/6th of the way into my review). I need to get my booty moving!

View of El Paso on a stormy night

Why I always have my computer in class

I asked some fellow eds people and a few recommended Y pens. I'm going to give them a shot and see if it helps with my hand fatigue when writing

Things doctors are not allowed to say

We are going to double your dose of steroids, loosing weight might help too.
Ass.
That is all.

Breakfast of champions

 

Yes, I take this many pills every morning. And don't you dare even try to tell me that these are toxins and they are making me sick. They are keeping me alive.

First day of class

shameless first day of class selfie

Buy stock in powerade now

 

The refrigerator of someone with POTS. 

OMG shoes.

Why is it that when I have something I need to do I feel like crap? I've been having a bit of a flare for the past few weeks (stress induced? probably). Classes start monday, where we have to be dressed in business clothes. I have a cute dress I'd like to wear but it is a heels kinda dress, and heels do not belong on the feet of the clumsiest girl around. Oh well "practical" (ugly) shoes it is. That's my rant for the day, I'd rather be wearing the oh-so-sweet aqua blue peep toes sitting in my closet but I will wear the safe ones.

All meteorologist should be replaced by EDS patients

So whenever a high pressure system rolls into town, you can pretty much bet me having a sucky day. I woke up today, dragged myself out of bed, did what I had to do and then I promptly resumed making a permanent indention of myself on this dang thing. It feels like you can't possibly get enough oxygen and your chest hurts whenever you breathe and you are generally worn out. I'm not sure what it is technically, but I can tell you there is absolutely NOT anxiety related and it is most definitely related to the high pressure systems bringing in storms. It happens ever time there is a storm and it suuuuuuucks. it goes away after the storm and some rest. I'm not sure if it's the POTS or arthritic type pain due to years of costrochondirits but I'm going to go to bed at 9pm tonight. Which is unheard of for this little nocturnal monster. Goodnight.

What is Ehler's Danlos?

Ehler's Danlos is a genetic condition that effects the collagen production. It can effect your joints, skin, blood vessels and nervous system. Every case is different, but here are some the things I personally struggle with.
POTS (Postural Orthostatic Tachycardia Syndrome): when I stand up, my blood pools in my feet and legs, causing me to faint or feel dizzy.
Joint hypermobility: I can do weird things with my joints, and they frequently dislocate.
Bruising: the current count is 26. I know how 1 of them happened. I just bruise for no good reason.
Transparent, fragile skin: you can see all my veins!
Anyhow, enough about that, I just wanted to give you an explanation of that EDS is. If you want to learn more you can go here, or ask me :)
http://www.ncbi.nlm.nih.gov/books/NBK1244/

Bruises

Part of Ehlers Danlos is skin fragility. We have no idea where the bruises came from, but they are always there. No, we are not abused by anything other than genetics. I got curious and counted my bruises today, I have 26. I only know where one of them came from. This one is on my anterior thigh, just popped up.

Dyed my hair chocolate brown, thought it would make me look less gringo

El Paso Landscape

My Short White Coat

Trying to get a little sun. I'm pretty sure I am the whitest person in El Paso.