Working myself to sickness....

I've been working A LOT lately. Its been hard and its beginning to take a tole on my body. Simply standing for five minutes hurts.and standing for four hours, nearly destroys me. I'm needing to save a LOT of money in a SHORT time so that I can manage to put enough down on a car so I can manage to get financing and blah blah blah.... in short. I need a lot of money, in a short amount of time, which means I need to work myself to being sick. I'm hoping I manage to not be sick from this for a month or two.

Do you know whats worse then being at pain and at work??
The answer is, Being in A LOT of pain and having absolutely NOTHING to do at work to distract yourself. Really, when you can keep busy at work and be in pain its slightly less unbearable then when there's nothing to do. Distractions are amazing.

And now I need to go pass out and sleep. I have a very long day ahead of me tomorrow.

Oh work, you silly thing...

Alright, I'll admit it! I'm slower then everyone else! HAHA Kidding, seriously I'm not slower then everyone else... a process that takes about 3 hours takes me 3 hours and 15 minutes... ooohhhh that 15 minutes is SOOO much.
My manager at work commented that I never reach the "closing goals" (the time we have our whole area cleaned up) he sets for us, I wanted to explain why it takes me a little bit longer than everyone else, but I kept my mouth shut, just didn't feel up to having someone look at me like I'm crazy.
It takes me a tad longer because I have to be careful about how I carry things, wash tables (if I try to hurry my shoulder repeatedly pops in and out, not pleasant and hurts over time), and when I try and hurry around, I have a tendency to injure myself. So, a question for you, would you take the time to explain to your boss that you work a little slower to avoid injuring yourself? or would you just let it be and ignore little comments like these when they happen every time you work?

busy, busy, busy...

I've been crazy busy with work and babysitting and shopping, sorry I've been gone.
I've been exhausted the last few days and yesterday I made myself go to the cities (about 45 minutes away) to go shopping in Maplewood, Minnesota.
The mall is great, even though parts are currently under construction due to remodeling, though the new architecture should make the mall even better.
The roads were awful though. They are doing a ton of construction right now and there are "road closed" signs on roads that are still being used. It makes it hard to get around if you aren't used to the construction, which I most certainly am not, though it wasn't too terribly bad, just confusing.
Burlington Coat Factory, was a whole other story! Usually you expect some mess in a discount department store, but this was ridiculous. I almost tripped at least 10 times trying to walk down ONE shoe isle. There were boxes and random shoes all over in the isle. (When you have unstable knees and ankles and hips like me, this becomes a bit of a problem and safety hazard, not to mention it would have been completely impossible if someone was in a wheel chair.) Usually I don't like to fill out the surveys online, but I made sure to do this one as soon as I got home. I figured someone might want to know about all this. Even though I went there for a coat, I couldn't find one i actually liked, but I did find a lovely scarf which is super soft!
I will never be returning to that Burlington Coat Factory. It was awful.
I also found a great new sweater on sale at the mall, bought some books at half priced books (my all time favorite book store) and walked into Michael's Craft Store literally one minutes before they closed. not much you can find and buy in 60 seconds.
And I ate at Panda Express, wasn't very impressed, usually they are okay, this time they just sucked.

I'm having an interesting problem with being crazy tired today after so much walking and moving yesterday, and things keep partly dislocating, it doesn't hurt until i try to pick something up or use my hands (my wrists are doing it most).
I don't get mad or upset about these little things happening, sometimes I get frustrated when things simply WILL NOT stay in place, but I never get depressed or down about these kinds of things.

Sorry this isn't very crazy and exciting. I'm so terribly tired still, and a bit upset because my kitty died this morning.

"Sick" and sick.

There's a term that I notice in the EDS community that I never really understood until today (and last night).
The term Sick.
Just because I have this disorder doesn't mean I'm sick, or ill, but its a word used to describe how we feel on really bad days and a way to allow the healthy people around us understand a little bit better that we aren't completely okay.
Along with EDS I may have something called postural orthostatic tachycardia syndrome or POTS. I can't get into the details of exactly what it is because I barely understand it myself. Last night though my body screamed enough. I've been working and pushing my body a lot lately and it finally gave way to some not so fun problems. Intense nausea, dizziness, almost passing out and incredible amounts of exhaustion.
I'm still not recovered and had to call into work sick. Here is the thing about me, my immune system is incredibly good. Which is where the word "sick" comes in. I'm not ill in the way most people become sick, from the flue or strep or a cold. I become sick from over working my body and asking too much from it, and when it tries to revolt I push it harder. I didn't realize this could happen, this intense exhaustion and such, but I've learned my body can get pushed too much and looking back now, I notice the warning signs I should have been listening to.

Everyday is a lesson with this disorder.
Everyday I learn something new about myself.

My puppy, soniya.

I have an adorable puppy whom I love to death. I got her nine months ago. She's a black lab, german shepard and husky mix,and she makes me smile everyday. Currently I'm attempting to train her to be a service dog for myself, due to the fact that in the next few years I may be in pretty tough shape. She's super bright and loving, I only wish I had more energy to spend training her.
Her name, soniya, comes from a story I read about 5 years ago, according to the author it meant "a moment in time" and I loved it. I've waited for a puppy to nme that ever since.
I'm hopeing to find a trainer who will help me by taking her a few days a week and training, then I can work with her to get her practice.
She's absolutely adorable. Who wouldn't want to wake up to this puppy climbing in bed with them?

"Spoon theory"

"Spoon Theory" is a way of explaining how much energy one has in a day and how much each activity takes for them to do. A wonderful woman with Lupus thought this up, her name is Christine Miserandino. Though she has Lupus and not EDS like me, her explanation is a wonderful way of explaining this.
I encourage you to please watch this video, it truly does explain a lot.




With spoon theory in mind I think of my daily life differently. I can't go to the mall, and go to work all in the same day. For me it's too much pain. I can only do so much before my body fights back. I was realizing that I spend a great deal of my time and energy working, which doesn't bother me at all. As I have said before I love my job. It allows me to spend time with my great group of co-workers and allows me to see so many customers a day.
Some days though I wish I didn't have EDS. It would be nice to be able to go do everything I want all in one day, but I can't anymore. So I find joy in the little things in life. Spending time with my family, talking with my friends, going to a movie instead of walking around the mall. I still use most of my energy and time that my body feels okay, for work, but it's what I have to do. I can't afford to not have a job, so I do what I can to enjoy it and make the best of it!

College

I've been thinking a lot about college lately, lately being the last three years (even longer if you count the time since fifth grade when I dreamed of going to college). I'm 19, will be 20 in January, and some days I feel no closer to getting to school than when I was in fifth grade. Not to bother you with the woes of my life, but if you have the opportunity to go to school, take it. Two years in a row I have tried my hardest to get to school. I was accepted, that wasn't the problem that has gotten in my way. What got in the way was money. With no one to co-sign loans and no credit history, it's basically impossible to go unless you have most of it saved, grants, and scholarships.
I want to go to school, it has been my dream since I was at least 10 or 11. I dreamed of going to school where the students were there to learn, not goof off. Where I could go back to my own dorm without parents looking over my shoulder. Where I could be the independent woman I need to be in order to succeed.
My EDS doesn't stop me from learning, actually I think it has helped me. I haven't gotten distracted with sports teams, partying (my body doesn't handle alcohol well at all, so I simply don't drink), and I have had to learn to be very determined and responsible about my decisions.

If you get to go to school, do it. I've heard its a wonderful experience that teaches you a lot about yourself, and I hope you enjoy the experience.

Things I would like everyone to know...

There are things I wish I could tell my family and friends, as well as my co-workers and my employer, but because it's often hard to talk to people about this, I will share them with all of you. Maybe you can keep them in mind next time you find out or see someone with a disability (though often disabilities are invisible and you wont realize someone has any problems).

Dear ____.....
Work- When I tell you, "I need to sit down" It really means I need to sit down NOW. I wait until I can't handle the pain anymore, trying to make it easier on you.  When I mention I can't do a lot of running around, its because something is wrong and hurting and I'm sorry. I don't complain, or ask to sit down too much because I know you have a lot to deal with, with other employees. I push myself farther then I should already. I go home in pain every day. I come into work already hurting.
I never call into work because I just don't want to work, unlike some of the other employees you know about. If you ask me to do something, even if I know it will hurt me later or now, I do it because i know you need the help.
I love having a job, even if I have troubles working more then 25 hours. I feel bad for needing accommodations, but I don't have super limited accommodations to try and make it easier on you.

Family - I need you to understand that this disorder affects everyone differently. You may not deal with daily and constant pain, but I do. Please don't criticize me for seeing doctor to try and help me figure out what's happening to me. Also please don't try and make me feel bad when I have to resort to government programs to help me find a more suitable job for me.
I may be sick, but it doesn't mean I can't go to college someday. Please don't say things like "If you have such bad issues, I don't know how you will be able to go to school." Let me figure that out. Don't tell me things like "The special help wont always be available" and claim it as the "reality" of the economy. Note takers and other accommodations may not always be available, but saying things like that is almost as bad as telling someone they are stupid and shouldn't bother going to college.
Please don't compare me to you or other family members, it is different for all of us. And try and refrain from pushing me to try different things that have helped you, I might consider trying them, but I can't jump on doing them all. I can't work out like you do, telling me i need more exercise doesn't help, this isn't muscle fatigue, its tendons and ligaments and joints that hurt, I have to be careful.

Friends- I love you, often times you put up with more then my family does but I know you will never understand, all I can ask is for your patience.

Stranger- Yes I look normal, but I'm not, please be patient if I'm taking a bit longer to do something, I'm trying.

Everyone - I love life still. I deal with a lot of things that frustrate me and can sometimes make me sad, but I love life. Please don't pity me, no amount of pity parties can ever help me feel better. If I get upset with my body, it's okay to just let me be and not try and make me feel better. It's also okay to laugh with me, actually its preferred. I have a sense of humor about everything that helps keep me happy and not letting life get to me.

Winter is coming!!

Took me a few hours to figure out what was going on today. My fingers and toes were/are horribly sore and achy, and my elbows slowly joined the fun. I couldn't figure out WHY though, then I realized, its cold.
When it gets cold things ache and hurt like crazy. Even without going outside I can tell you its cold. And I'm probably more reliable then a weather man. ;)
Its a really good thing I'm cute when I'm all bundled up beccause I'm always cold in the winter.

Welcome,

“When you hear hoofbeats, think horses, not zebras.”

I am a zebra, I will put it right out there into the world. I am not like everyone else.

I live with a connective tissue disorder called Ehlers Danlos Syndrome (though often I simply call it EDS). 

Medical students are taught to look for the most common disease, syndrome or illness (or “horse” as it applies to my quote posted at the top of this entry) to the question of whats wrong with a person’s body. 

EDS, is a “zebra” condition that causes pain, chronic fatigue, troubles healing, and easily wounded skin. 

HOWEVER, I still live a happy life. 

Recently I’ve been told “I’m sorry you have to live like that, it must just ruin your life.” And yes, there are days I get so fed up I just want to scream, but there’s no use in it. I will have this disease the rest of my life.

So to combat this negative attitude around me, I’m beginning this tumbler account as well as a blog (tumblr is found at http://cassi-fish.tumblr.com/) I will show the world the amazing life I still live with this disorder.