Category: birthday

Happy birthday Laura ♥

Posted on by Grayson

I miss you much lovely.

For those of you who don’t know – in December of 2012, I lost one of my dearest friends to Still’s. We’ve both been sick since childhood and she was running out of medication options when an infection wasn’t treated correctly for her suppressed immune system and it turned into sepsis… which was also treated incorrectly. This event across the Atlantic uprooted my entire life, not only from losing one of my biggest sources of love and support but from being forced to face my own mortality. She did so much to help me grow, in life and in death, and I miss her every single day.

Today is her birthday, fitting for July being juvenile arthritis awareness month. Sadly she is not the only person that I’ve known who has passed away from this disease, and many others I know of were children.

Sometimes you meet someone who completely changes your life for the better. Laura was that kind of person.

Laura Jayne, I freaking miss you. I can’t thank you enough for everything that you have done for me. You still push me to keep fighting, to keep working on being a better person and a better activist. The passion you’ve given me has led to me starting to kind of be a big deal in the arthritis and chronic illness communities, but it’s also reminded me to live with a zest for life and take chances. You’ve given me friendships in the wake of your death that will last forever. You’ve also given me a reason to eat a ton of cupcakes this week – and to bake the most adorable cupcakes I’ve ever made.

You taught me the beginnings of self-care when I didn’t feel worthy of it. You were my mentor, my first sick friend with Still’s. I still remember the first time you responded to me on twitter and I lost it because you were such a big deal for me. I miss our fun conversations during odd times because of the time differences between England and here – and our painsomnia. I miss talking wedding things… and the thought of having been involved in each other’s weddings. I miss your silly sayings, sharing resources, and the intimate conversations that you can only have with someone who is practically your twin.

I know that you’re still here for me. I know that you’re still around, and that at least makes it easier. I also know you popped in for my bachelorette party, my wedding AND me honeymoon, you sneaky goose. Every time I see a butterfly, I know it’s you… mostly because you’re pretty obvious about it by landing on me or sitting by me for a long while.

Happy 33rd babe.

Birthday Fun

Posted on by Grayson

I am entirely too exhausted. Why? We’ll start at the beginning.

I work in retail and I pretty much work everyday, one way or another. Last week, I worked everyday except Wednesday. It’s not super demanding on a normal person really. However, if you have JRA and you’re standing for six to seven hours everyday after walking around all morning, it get a little tiring. I go to classes in the morning and then work late into the night, so it makes it difficult to get any rest.

Last Sunday was my 21st birthday, so needless to say my friends wanted to take me out. Saturday at midnight (Sunday morning, whatever) we went out to La Cage, the gay bar/club in Milwaukee. It was amazing and that’s totally my new spot. I feel a lot safer there than other places because everyone there is so caring and nice and I really don’t have to worry about – well, I digress…

I danced for about two and a half hours non-stop before they started closing down the club. When I was in high school, dancing was my thing. I could never take dance because of my JRA, but I’d go to every dance and just keep going for hours. My friends and I choreographed dance routines to songs and it was so much fun. Obviously, I’d pay for it with a physical “hangover” the next few days. Needless to say, after not dancing for so long, the pain was far worse this time. I was tired enough the next day, but it’s really the second day after that the pain sets in. I did not want to move at all. A week later, I’m still feeling it… kinda.

I went to a Brewers game with my boyfriend Tuesday night and our tickets were all the way at the top of the stadium. It made for a great view, but there were so many stairs! I had so much fun and it was a great game. I wouldn’t have traded it for anything though. 🙂

Along with all of this, the elevator in my dorm building has been making some… odd noises. I’ve been trying not to take it, because that’s just creepy. This means more stairs time, but I live on the fifth floor. Add into that the fact that I go to and from classes and work and social gatherings probably half a dozen times a day or so is what makes it an issue.

I took the first of four finals today. It’s pretty nice to be almost done with this year of schooling, but that subtracts sleep (and sanity) from the equation. One of the most important factors that many people fail to address when they discuss Still’s Disease is how much the physical limitations affect the mental state of the victim (that was the best word I could come up with, so forgive me).

As a younger child, I think that it was a little easier to accept. Doing ‘x’ hurts, so I’ll just sit here and do ‘y.’ Obviously, it sucks that I couldn’t go do certain things with the other kids, but younger kids are more accepting of why people can’t do certain things. As Ive grown up, I’ve seen that other people are more closed minded than I would’ve ever imagined. When I can’t participate in certain activities, I find that people don’t care to understand why. Instead they blame it on this or that, failing to listen to the real reasoning. Between that and my stubborn nature (Taurus!), I don’t feel as though I can just sit here and do the easy things. I feel like life is a challenge – one that I intend to participate in as fully as possible. If that means that I get a little extra tired or sleep through classes some days (oops), then so be it. I’d rather be as alive as I can than sit here wondering what it’s like to get a dance routine going in a club or go hiking on the coast.

This post is a little disorganized, so you’ll have to forgive me. The amount of sleep that I’ve gotten as of late is not a lot.