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?

NaNoWriMo

I'm partaking in,National Novel Writing Month,  NaNoWriMo, in November this year! I'm determined!

http://www.nanowrimo.org/eng/user/844072 << add me as a writing buddy if you are partaking this year! I can't wait to get started!!

"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!

I've been thinking a lot about why I wanted to start blogging in the first place ever, and I just happened to stumble across this wonderful video which made me say "I'm going to try that" Not so much on my blogging, but simply the trying something new for 30 days. So for one of them, I will continue writing blogs every day, for 30 days.
My second 30 day challenge will be to partake in Nanowrimo. I've tried it before in the past but this year, I'm determined to do it.
Check out the video I included below and if you have any interest at all in videos like this, go check out www.ted.com They have amazing videos no matter what your interests are.

Some people I tell ya'!

I work at a fast food place, which will stay nameless since it really isn't important, and I was working in the drive through today. We get some interesting characters, don't get me wrong, I really love all the people who come through, just some are a little more trying on my patience.
Today was one of the top 10 most "interesting" events.
I was taking orders and someone said they had a coupon, which is fine, if I can do the math I usually let them know "Your total will be $____ with the coupon at the first window" they drove up and handed me the money and the coupon. It was for another company and we aren't supposed to accept those without getting a manager. I called for the manager and finally found one who came and said "I'm sorry, we can't accept this." I let him deal with them because I had another order to take.
Watching from the side, I watched them take out coupons for OUR store and proceed to try and use one. The manager nicely told them he was sorry but it was only for the bigger sandwiches and couldn't be used for the $1 sandwich they wanted to. They grumbled and told them to take it from the money they had given me with the first coupon.
He does exactly this, and they get mad because it is now $2.11 instead of $1.06 since they cant use the coupons, and demanded a refund.
Now, this is understandable, everyone has the right to do this, but it was their attitude that made me a little but upset about it.
The real kicker for me was they were driving a bran new Jaguar car and had given me $5.06 cash to pay for the original $1.06.
I was just a little disappointed in the way they conducted themselves. Even though my manager and I were being as patient and hospitable as we could, we got cold and frustrated attitudes that make it hard sometimes to deal with people.

However, as I said before, I love the customers. Even after things like this there is ALWAYS a customer who makes me laugh or feel better every night. Such as....
One guy tonight came through and said "I hear you guys are all out of T-O-Y-S!" I was confused and answered truthfully with a no. He quickly got the point across that he and his wife didn't want the kids to know we had toys still and so I played along. The man was so animated when talking to his kids and had such a wonderful and light hearted attitude I couldn't help but smile and play along. When he did get to my window we joked and he made me truly smile, which if anyone who is in constant pain knows, this is sometimes very very hard to do. It's people like these who keep me coming back to work with a smile on my face and I keep taking their orders with a smile in my voice and feeling happy about what I can do for them.

Feel better strategies

One of my favorite "feel better" tactics I take is a relaxing afternoon/evening to watch kids movies. Yes, I'm only 19, but a lot of people I know stopped watching them when they were about 10 to 12 years old. I like to still watch them.
Right now, I'm watching "Happily N'Ever After 2" (I haven't seen it so I have no idea if its good or not) though my favorites are classic Disney movies. It's a nice little escape back to a simpler time.

So next time you aren't feeling so great, pop in some "children's" movies and grab some popcorn.

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.

GUESS WHAT I CAN DO!!

No nothing amazing, but the finger splints I mentioned yesterday got put to the test tonight. I was writing with a pencil, which doesn't seem like a big feat though when your joints bend almost 90degrees back, it makes it hard to write and it hurts over time. BUT while I was wearing my splints I didn't have to change the way I hold the pencil many different ways!! It's an accomplishment I enjoy.

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.

EDS "bling"

I joke that the Silver Ring Splints are the "Bling" for those of us who have unstable finger joints, they really are an amazing creation. They look nice, don't cut into my fingers like the finger splints did.
The one splint I show in the pictures is the "Boutonniere Splint" which can be used for a few different problems, talk to your doctor to see if this would be helpful for you.

Before

After

Before

After
(same amount of pressure as the before picture)

Top
(for the way I wear them)

Bottom
(for the way I wear them)

The Boutonniere Splint is used when there is a hyper extension of greater than 20 degrees.
I included the company website below if you are interested to learn more.

I'm excited to get the rest that I need because they will help reduce the pain in my hands and help keep my joints stable and in place when I'm holding things.

The fact that they look nice is a great plus.
I will be keeping an update on how these are working.


http://www.silverringsplint.com/ is the website of the company that makes them.
All comments I make are those of my own and not the company.