Saturday, August 14, 2010

Oh life

Dear EDS,

Sometimes you make life really hard for me.  It's not that my pain is excruciatingly bad or I'm excessively weak these days, it's just that I miss my old life. A lot. I started dancing when I was 4 years old and was lucky enough to continue until I was 16. Those 12 years were great but I would love to have more.  It kills me that I'll never know what I could have done with my dance career.  In the beginning it was purely fun and I love just dancing for the sake of dancing.  Near the end I started to become a much more polished dancer. I won my last competition and had the best performance of my life in front of a crowd of thousands.  There is nothing in the world that compares to the feeling of flying on stage in front of a crowd that big.  And I miss it dearly.  There are days like today where I hate EDS so incredibly much I would do anything to get rid of it and have my old life back.  I used to be able to run and bike and dance. I was in ridiculously good shape as a result of dancing for so long.  It's not like I've gained weight or anything, I've just lost muscle.  I miss feeling strong. My old strong included training for hours and hours. My new strong is being able to open the peanut butter jar with no help.  It really sucks. I want to be able to go for a run when I get stressed or dance like a crazy person just for the fun of it. I can't even begin to describe how much I loved perfecting every move, working on my turn out, working to make my lines longer, and just dancing. There is no feeling in the world like it and it's something I'll never get back.  I feel like I've missed out on a good chunk of my youth because of EDS and I really hate it for that.  Dance was the only thing I had constantly in my life and it's been gone for a while but that doesn't make it any easier.  People always say life is hard and blah blah blah but I feel like no one really knows until they live with a chronic illness that completely 100% turns your life upside down.
I turn 20 on Monday and shouldn't feel this old or have dealt with this much in life.  I know EDS makes me a stronger person  and who I am but I'm really curious to know what life is like for a healthy person.  It really must be nice to not have to worry about getting hurt or sick or being in pain all the time.  I would love for just one day to know what it's like. If I had the chance to completely get rid of EDS forever I don't know if I would because it is such a huge part of my life but on days like today I definitely wish it would go away.
In other news, I rolled on over to the farmers market this morning and bought some delicious treats.  My friend M is coming to visit for the night which will be great to see her.  Not having a roommate during the summer is no fun.  I love constantly having people around me and living alone is just plain weird for me. School is about to start up in a couple weeks so it will be great to have campus bustling about again. I also need to get better at writing in this thing.  It's nice to just get it out there sometimes.


Monday, August 2, 2010

Monday Monday

Dear EDS,

Thanks for being good to me again today.  Even though the day was nothing out of the ordinary I still really appreciate good EDS days.  I pretty much got up, went to work (and totally avoided a work related situation that could have been not so good!), and came home.  Work was great today; my favorite staff member just left our office so one of her new replacements started today.  Although no one could ever replace J, K is a great new addition to our work family.    

I started taking new drugs today (well ok I took it like 15 minutes ago) for my headaches.  A lot of EDSers that I've talked to, myself included, to get awful migraines very frequently.  My neuro put me on some drugs, beta-blockers to be specific, to hopefully stop the headaches.  The only problem is is that these drugs can also lower my blood pressure and since mine is really low to begin with that could be a problem.  I'll keep you updated on how this new adventure goes.  Other than that I'm just getting snuggled in to have a nice relaxing night.


Sunday, August 1, 2010

Exciting News!

Dear EDS,

     This weekend has been pretty laid back but I also got some very exciting news.  Since my symptoms/joints have been getting a lot worse recently I decided to apply for a service dog.  I really think that having a dog to help me open doors, pick things up, retrieve things, etc. would really help preserve my energy and save me from some day to day pain.  Well, anyway, I got a letter in the mail on Saturday saying that they've accepted my application and they are working on finding a dog that will match my needs.  I'm really excited about this and I can't wait to find out more.  The letter said they would be in contact with me soon to give me more information.  Ideally I would get the dog before classes start in the fall.  Since classes start in exactly a month and the training with the dog is 2 weeks long I highly doubt this will happen but it would be nice.  Realistically I think it will be over winter break, right after Christmas, when I travel to St. Louis to be trained with my dog.

     Even though it was pretty hot out today, I still made my favorite dinner.  I also went to the grocery store yesterday and got some mochi ice cream which I've been snacking on all day.  Mango mochi ice cream is absolutely delicious!  I'm obsessed with eating and cooking delicious food so today was definitely a good day.


Friday, July 30, 2010

Thank You

Dear EDS,

Thank you for being nice to me today.  I had off of work yesterday so it was nice to just lounge around, clean my apartment in little bits, and do a whole lot of nothing.  Having days like yesterday is what keeps me going and not in completely terrible pain all of the time.

Today was a really nice day too.  I woke up, got ready, and headed off to work.  Days like today are the reason why I am in love with my job.  Not many people are lucky enough to be able to say they get to go to work but I am definitely one of them. I work with amazing people and genuinely enjoy going to work everyday.  In between classes and studying, work is a great break from school life.  I got to work and had a great chat with my friend A.  She had to leave around 10am so I was alone at the desk for a bit.  Our office is in the process of moving so I had the job of going through my bosses files and recycling old papers we don't need.  It's really interesting to go through all of the files because I'm actually learning quite a bit about disability rights in the post-secondary setting.  A is going to visit one of her friends this weekend and made some cupcakes for her.  She brought the extras into work and they were delicious! T also brought in his famous pumpkin chocolate chip cookies which I just love.  My office loves treats which is another reason why I love my office.  

Some of my friends are living in the apartment directly below mine next year so one of them stopped over to get a better idea of how it's set up and exactly what they'll need to bring.  I had actually never met him before but I can tell it's going to be a great year living with these guys.  J was super friendly and seems like he'll be lots of fun.  I'm really excited for school to start again so all my friends move back to campus.

I just enjoyed a nice dinner of roasted broccoli and now I'm trying to decide if I want to bake something or just snuggle in with a glass of wine and have a nice lazy night.  I'm thinking the wine's going to win this time. Hopefully it won't rain tomorrow morning so I can go to the Farmer's Market on Capitol Square and buy some yummy treats.


Thursday, July 29, 2010


Dear EDS,

As I was looking through different Tumblr blogs today I ran into the quote "Pain is inevitable, Suffering is optional." I know I've heard/seen this quote before but for some reason today it seemed especially relevant. Pain is just something that comes with the EDS territory but that doesn't mean it has to control my life.  The last time I met with my genetics counselor she said something to the effect of "no one could ever blame you if you just sat around all day because of the pain you live with." It really meant a lot to me because I don't think people realize how painful of a condition EDS actually is.  I definitely do have days where I do nothing but sleep or lay on the couch and watch movies but I try to avoid that as much as I possibly can.  Just because I have EDS I don't want to miss out on having a life.  I choose not to suffer because, well honestly, life would just be awful if I did.  I really don't know how to live any other way.  Living in constant pain isn't easy but I feel like constantly suffering and being depressed because of it would make life a whole lot harder than it already is.  Staying positive and really working hard to focus on what I can do and how lucky I am has made living with EDS lots easier.  I'm not saying it's never hard for me (I do have my days where I just cry because I wish it would all go away) but choosing not to suffer makes life nicer.

I think this quote is true for many EDSers because we do live with so much pain from the dislocations, bruises, cuts, and everything else that comes with this lovely condition.  If 'healthy' people had to live with this condition even just for a day I think they would learn to not take everything they have and can do for granted. I think what I'm really trying to say is that even though we do have to live with constant pain we don't have to let it control our lives. We have the choice to let it take over and suffer or to take control of it and actually live to the best of our ability.

Anyways... with EDS comes lots of headaches...literally.  I don't remember a day where I haven't had a headache.  I went to the neurologist a few days ago (the guy was nuts, I thought I was being Punk'd) and he had me get a brain MRI.  That was all clear so he's putting me on a super low dose of a beta-blocker to hopefully help prevent these headaches.  Beta-blockers are typically used for people with heart disease because they help lower blood pressure.  I personally have super low blood pressure (not sure if that's EDS related or if it's just because I do) but I was a little worried about this because if my BP goes any lower I'll get really dizzy/faint.  I talked to the pharmacist and she thinks putting me on the really low dose will be fine so I'll start those drugs on Monday.  I'll keep you guys updated on how that goes.


Wednesday, July 28, 2010

First Post!

     I've decided to start this blog to have a way to talk about my journey with Ehlers-Danlos Syndrome and maybe (hopefully) even spread a little awareness.  I plan on sharing my story by simply talking about my day to day life and how EDS impacts nearly everything I do. It's been a long journey this far and I'm sure I'll have many more adventures to come and I hope I can share them all with you.

     I think the best way to start this blog is to give you a little background about myself and how EDS has changed my life... I'm 20 and about to start my junior year of college.  After seeing more doctors than I can count I was finally diagnosed with Ehlers-Danlos Syndrome when I was 16. EDS is a connective tissue disorder that causes my joints to dislocate ridiculously easily.  It's a very painful condition that comes with lots of other fun little issues but joint dislocations are my biggest problem at this point in my life.  EDS has undoubtedly changed my life.  Many days are filled with frustration and pain but just as many are unbelievably great and fun-filled.  Because of EDS I appreciate every single minute of my life.  As much as it sucks sometimes, I wouldn't ever change my situation because it's made me who I am am. I have an amazing group of friends and family who have helped me get through lots.  Living with EDS is never easy but that doesn't mean I can't love life and enjoy everything.  I plan on writing this blog in a completely honest way...if I'm having a bad day I'll tell you and if life is going great I'll tell you that too.  More people need to know about EDS and I hope I can help those without it understand this condition.