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.

Love.

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.

Love.

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.

Love.