Hard copy books

There is something very special about holding a book in your hands. Be it 300 pages or simply 50, having such a treasure of knowledge and words and ideas literally at your fingertips is magical.
Book stores are closing down all over the place and its simply heart breaking. Many small book stores with poorly lit back corners, winding stacks of books, old, new, used, best sellers and worst sellers, simply vanishing.
As the world becomes more digital we lose some of the oldest inventions and enjoyments. Simply curling up with a classic book next to the fire, without the distractions of cell phones and internet, is slowly drifting away. The worn pages of a beloved book aren't visible on a digital copy. Closing a 300 page book and setting it down feels less fulfilling an accomplishment when there aren't physical pages to be seen.
E-readers rely on electricity and power to keep charged, a hard copy can be carried for days without needing to be charged.
Printed copies of books are more expensive, use more resources, make books less accessible. All these are only true if we make them true.

I love my hard copy books, I have over 150 books and will always have a hard time parting with them, Simply holding them brings back many memories. However, I will soon be joining the digital age of E-readers in the next few months. I feel a mixture of shame and grief about this but believe it will be in my best interest. I will never get rid of all my books though, and will some day still  own every book I have read.

nanowrimo

Starting nanowrimo today.... so excited! =P
but totally freaked out too =P

LETS DO THIS!!!!

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.

No voice?

I'm slowly losing my voice. NOT FUN! I have plans for the weekend and I need a voice for most of them! I have three days off, I need my voice to function! I started feeling it at work, my voice was cracking a little and now when I try to talk I cough and it hurts.
Not cool. So now I'm going to bed.

The beginning of the purge... to simplify my life, as far as possessions go anyway...

This first area I'm cleaning up is easy and hard. I grew up being over weight and never feeling like I had the “right” clothes to compete with everyone in my class... seems childish and petty, but there are many more issues that got smashed together and created this issue, so I've become some what of a “hoarder” of clothes. I typically keep myself in line, but occasionally I find myself trying to buy one of every color of something on sale. Thus, I'm starting off with my closet.

I will try on EVERYTHING I own, if it doesn't fit or I've simply kept it for sentimental reasons, it will be thrown (to Good-will). This whole time I'm keeping in mind “If I ever need something like this, I can go to the store and buy it or borrow it from a friend.” otherwise, my brain always thinks “what if I need this someday?” even when I haven't worn it in years.

I hit a hard decision about 15 minutes in, I pulled out my “dress clothes” and when looking at the pants and cute jacket I wore for a wedding once I wanted to keep them, wanted to hold on to them. I went through all of my other shirts I had to see if I had anything that would make them look presentable... determined that was a no, and put them in the basket to donate. It was hard but ultimately felt really good.

Through half my clothes... and part of my “junk drawer” (well, one of the five or six.)

Now to bed. Finally at 4:30am.

Goodnight

I will actively avoid...

I will actively avoid mentioning that I have indeed been away for a bit... a bit longer then I wish... and that is all I have to say on the matter.

Like I do everyday, I've been thinking lately WHAT I want to do with my life.
I know what I want to do IN my life, and I have realized, that is the best place to start.

1) I want to learn french -------> So I have now purchased the Rosetta Stone for french. It's expensive you say? Yes, I've realized this but when investing in knowledge, I find there is rarely a price too high. plus it was on sale, with a five month payment plan. So far, I am learning from it, which is the point, correct?
Once I've mastered french (I bought the complete set, level 1 through 5... which may seem excessive... and probably is... but if I can some day write a whole blog entry in French, it will make me smile, which I'm beginning to think is the point to life...)

2) I want to see the ocean -----> I've gotten in contact with a few people I know throughout the country and decided in the next year, I WILL take a train to the ocean. I WILL stand with my toes in the salty water and smell the salt in the air. I have never seen the ocean before, other then in pictures, and there is almost nothing more my soul seems to yearn for then to feel those waters. I can't explain it, but I feel a NEED for it.

3) READ -----> I own over 100 books. Half of them I probably haven't read, YET. I'm starting my way through them. I'm not saying I will read them ALL completely from cover to cover, I've already found the book "Angles and Demons" can't seem to keep my attention. It's a wonderfully written book by a great author but not what seems to keep my attention these days. I've moved onto "Animal Farm" and am quite enjoying it. What will I read next? I haven't decided. Which sort of brings me to my next thing/topic/goal/activity/characteristic-of-my-life-as-of-late...

4) Live in the moment. Yes I'm making plans but I'm also starting to live in the moment. I'm absorbing, enjoying, and craving events that are happening all around me. I'm living life, in the simplest form.

and
5) Down sizing. I saw a wonderful video on TED.com about creating a simpler life. I have so many THINGS, unnecessary things, sentimental things, and things for the sake of having them "just in case". This next week will be about down sizing the number of "things" I own. I will keep some, though many will go.


And with all of that being said, I don't have much else to say, I will ask you this:
What do you want to do IN life, rather then WITH life??
(answer in the comments, I'm honestly very interested in what people want to do IN life.)

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?

An easy day...

Lately I've been tired and it reminds me of high school when I didn't have a choice but to be at school by 7:45am when the second bell rang (which is far too early for school to start). I have cycles of intense drowsiness where i can barely stay awake due to chronic fatigue. I'm going through another one of those cycles, and it's made for a very tired day. Basically I was awake for an hour and became so tired I had to sleep more and when I woke up the process repeated. I did however finally get out of the house and went to the library for a few hours.

I realized today how funny people can be about odd body functions. I do this thing where I cross my ankles and put pressure in on my knees and out on my ankles and it pops something in my lower back. Sometimes it pops loudly and other times it's pretty quiet. It was loud this time. A lady in the library who was looking with her daughter at books turned her head really fast like she thought something just broke, but nothing broke, just a pop. Then later I was going into a store and I sometimes stand funny if I'm waiting in line a long time and turn my feet out really far or stretch them or just turn parts of my legs odd... I do this to reduce the amount of pressure focused in the "usual" part of my knees, ankles and hips, also it keeps me amused when I realize I'm doing it. An older gentlemen, maybe mid 50's to early 60's was standing behind me in line and just STARING at my feet, my ankles were twisted funny and it probably looked painful, though it wasn't (at the time, I'm paying for it now, but these things happen).
This last event got me thinking about all the circus people you find who can bend and twist in crazy ways and people are so amazed (sometimes grossed out) by it, but I can almost guarantee the people who do these "tricks" don't hurt while they do them. We just love to be freaked out by "gross" things, it might be human nature.

Recently someone came back into my life, just a little, and I'm nervous. I'm not doing as well physically as I was doing when he was around before. He means a lot to me, and I'm scared of what might happen if he finds out I'm not as physically solid and fall apart more now.

Night guys. I'm off to listen to some music and calm my soul.

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?

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.

Inaurance companies...

Medical insurance companies can be difficult to deal with sometimes. I found out this morning nothing has been covered by mine because they claim I have another insurance company. Pretty sure that's not true but then again I may be wrong (though I'm pretty sure I've been on this plan for a year now). Ahh the joy of the health system.

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.