Category: HAWMC

Day 6: Dear Arthur #HAWMC

Posted on by Grayson

[In case you’re not familiar with my blog, I’ve had a rare form of juvenile arthritis since age 5. Arthur has been my nickname for him ever since the diagnosis.]

Hey Arthur,

Last time I wrote to you, it was ‘celebrating’ your birthday. I was thankful to you for the people you allowed me to meet and befriend, and proud of myself for all I’ve accomplished in spite of you. A month later, you managed to murder, with the help of idiot doctors, one of the most beautiful, kindest women I have ever had the chance to know. You robbed her of her wedding day, the love of her life, and the friends and family who loved her so.

How dare you.

How dare you take her away from us. She provided support and understanding that no one else I know can. She loved unconditionally, cared even if someone’s pain may have been lesser than her own, and was always there for each person she knew. How dare you force Matt and his sweet family to handle her death when they should be picking out flowers and a venue for the wedding.

We were in the same place in life – sick, engaged, blogging, and pondering the children issue. She was the twin I never met, in every sense. Planning a wedding together was our goal. We were going to share ideas and help each other not freak out. When I bought my dress, a time when any girl would be emotional, I cried not because of the joy of finding the dress but the sadness that I could not share that moment with her. My instinct was to send her a picture right away, but I know I can’t and it just breaks my heart. I can’t even think of getting ready for my wedding without her to talk to.

It has been four months now since you took her from us. I find myself even more than before struggling with the idea of a life after death, not because I suddenly believe in a god but because I don’t want to believe that she’s not around anymore and I don’t want to believe that I would be permanently gone from my fiance either should something happen. I’ve always thought many religions were a way to explain what we don’t understand or don’t want to think is true, and it’s very hard for me to want to go against all my reason to believe Laura is still around somewhere waiting to welcome us to a land with no pain.

Arthur, you are so lucky you’re not a real person because the hurt I want to inflict on you is indescribable. I know so many little kids with this, and I can’t help but thinking how scared I am for them now having known someone so wonderful lost because of you and idiot doctors. There are a lot of idiot doctors, especially when it comes to you.

One of the things that Laura taught me was how to come to really understand my body and not push it further into a flare-up. She encouraged me to get in the pool with my PT ladies and take back my body. Because of her, I am able to run now – not even close to a mile a day, but it’s getting there. I run because it makes me happy, because it challenges you, because she would be proud of every step.

I thought I was determined back in November to beat you, but there is no way to put into words how much fight I have in me now. You will not win. You will not take me from my family and friends. You sure as hell aren’t going to make me take anything you dish out lying down anymore. I refuse.

Day 5: What I want to be when I grow up #HAWMC

Posted on by Grayson

If there were no limitations to what I could do with my activism, what would I do?

The fiance and I had a conversation at one point where he said that he wanted a good enough job with the right kind of pay that I didn’t feel like I had to work.

Holy crap, I marrying that awesome man. Sorry, still a little surreal to me.

He said that he wished I could have my activism and my blogging as my job… if I wanted of course. And to be honest, this is totally what I would want.

If money was no object right now, taking care of myself and being an activist for others would be my job. If my health situation was no object either, I’d love to be a yoga instructor but that’s not happening anytime soon!

All I’ve wanted to do with my life is to help people. Who could ask for a better job than that?

Day 4: Sharing Resources #HAWMC

Posted on by Grayson

One of the best resources ever for me was my dear late friend Laura at Still’s Life. Many of the pages and sites she shared got me through a lot of pain, worry, and frustration. Using her as a guide, here are some really great pages, sites, and blogs to help you cope and learn more about Still’s Disease.

There are many other resources out there to explore, but these are great places to start no matter if you, your child, or someone else dear in your life is dealing with Still’s Disease.

Day 2: The Top 5 Things to Know About Still’s Disease #HAWMC

Posted on by Grayson

The primary illness that I deal with is Still’s Disease, or Systemic Onset Juvenile Idiopathic (or Rheumatic) Arthritis. You can read about my personal story here. You can find out a little more about Still’s here, Sir George Still here, and complications associated with the disease here.

The top five things I want people to know about Still’s are:

  • It requires drugs used in chemotherapy and organ transplants, like many other forms of autoimmune arthritis
  • It causes a malar rash and high spiking fevers (high enough they can cause brain damage). The rash is exacerbated by emotions, fatigue, temperatures, manipulation (Koebner phenomenon), and disease activity. My face isn’t red because I’m fat and walking – it’s red because I’m ill.
  • There are only technically two drugs on the market FDA approved to treat this disease, and they’re usually the last in line to be used as treatments unless you find a very aggressive doctor. They also are some of the most expensive – and dangerous – drugs for autoimmune arthritis.
  • Some work with stem cells has been done with this disease. For many it did nothing. Some died in the process. Others survived and had remarkably improved disease activity, including remission.
  • It can kill. In fact, complications from this disease killed one of my greatest friends and fellow blogger, Laura from Still’s Life. She was the first person outside my family I found with this disease, and she changed my life for the better in ways I can’t even begin to put into words. She has been gone for nearly four months and I still have to stop myself from texting her about both of our upcoming wedding plans. I miss her every day.
I also live with a number of conditions related to my Still’s – asthma, psoriasis, fibromyalgia, Sjogren’s Syndrome, scoliosis, and a number of other bone deformity issues.

Day 1: Why I Participate #HAWMC

Posted on by Grayson

This is the third year of the Wego Health’s HAWMC, or health activist writers month challenge. Last year was the first year I participated, but only because during the inaugural year being a full-time employee (basically running a hotel) and going to school full-time was a little much on its own – add in being sick and having to write a post every day and I was ready for a nap just thinking about it! But I definitely thought it was a cool idea and I’m glad I could participate last year.

I find often when blogging that I hit a really good or really bad health streak and so I avoid writing for a while. Currently, I’m in a good streak, being able to run (granted, a quarter of a mile a day or even a half!) again and planning my wedding for next summer. Oh busy busy wedding planning! I find HAWMC gives me a reason to come back and really focus on writing again. It doesn’t help that it ends right as May begins, bringing with it a walk for the Arthritis Foundation, World Autoimmune Arthritis Day, and National Arthritis Awareness Month! It’s a busy time for health activists and HAWMC helps me get in the right frame of mind.

As such, welcome to a month of actual posts every day! Thanks Wego Health!

Where does the time go??

Posted on by Grayson

Apparently when you’re planning a wedding with active fibro, you don’t blog a lot.

Oops.

For those of you wanting more of a fix, be careful what you wish for! The Health Activist Writers Month Challenge (HAWMC), from Wego Health, is coming back beginning April 1st and you’ll get posts daily. Now that we’ve got the dress, venue, and cakes settled for our wedding in a year and a half, it’ll be a littler easier to post here anyway.

If you want more interaction with others dealing with this and like diseases, or you just want to see me post more things, I invite you to head on over to the facebook fan page for this blog. I post pictures and articles that I might not have a lot to say about a few times a week, and you’re certainly invited to email or FB message me questions to ask others using that page.

Here are some interesting articles you miss by not liking that page:

And that doesn’t even count the fun pictures of me and witty sayings you get!
If you feel the need to listen to me rant more often, I do have a twitter page too.
I hope this didn’t come off as an ad. I just get stuck on words blogging sometimes, especially with a lot going on, and tend to focus more on the social media aspect of health activism. I hope you’ll join me!

Recap #HAWMC

Posted on by Grayson

Oh that was a fun month right? I don’t think I have ever, ever written that much. Holy cow. Let’s take a look back at the last month!

Okay, so while not actually part of HAWMC, I managed to do two awesomely fun interviews with two wonderful people – my boyfriend and author Carla Jones.

I shared some of my favorite quotes in Quotation Inspiration and managed to write some sad haikus!

I also shared some of my favorite music, whether it’s comparing illness to the Phantom of the Opera, or sharing my theme song, or sharing my parody of Air Supply.

I think that some of my favorite posts, though, were some of the most difficult and yet fun to write. I got so much positive feedback on Learned the Hard Way, where I shared my battle to come to take control of my health. I also enjoyed picking and writing about My Dream Day hanging out on the coast with the boyfriend. I think a tough thing to narrow down my dinner guests to just 5 amazing people!

I shared my challenges and victories with you throughout the month, like I try to do on a normal basis. Everything we do is a struggle – one that takes a lot of time and energy to fight.

I enjoyed writing and sharing these things with you, and I hoped you enjoyed reading them!

PS: Don’t forget about World Autoimmune Arthritis Day! And this month is also Arthritis Awareness month!

Six Sentence Story

Posted on by Grayson

My challenge today is to write a story in ONLY SIX SENTENCES.

Oh my gosh.

I wake up before my alarm this morning, an odd occurrence to say the least. Everyone is tired when they wake up, but today I feel like I’ve been hit by a truck. As I wake up more and more, the pain gets worse and worse. My hobble to the bathroom tells me that there’s no way I’m going to work because my feet are filled with glass and someone seems to have stuck invisible arrowheads into my joints. I try yoga and a shower, both of which help temporarily but make little headway in reality. Twelve hours later, even sitting hurts and I wonder how I will sleep tonight.

My thoughts are so deep you guys – so deep.

Love Songs to Arthur, Part Deux

Posted on by Grayson

I’ve already talked about my lovely feelings towards my disease and my horrible lover, Arthur.

I’ve ventured into a really artsy time in my life right now, and a large part of that is to get out anger I have – anger at Arthur, anger at failed medications and side effects, anger at people for not understanding or caring or for thinking I’m just a fat pig, etc, etc, etc. When I feel artsy, I don’t paint and I don’t work with clay. I dive into music.

I’ve always had a huge fear of performing in front of people – that fear of messing up and having all eyes on me (when I’m not sexy right then) judging what I do. But I figure that you guys have read about my sex life now, so we really are like best friends right?

A bit ago, I shared a link to my cover of “Fly” by Nicki Minaj and Rihanna – what I consider to be my theme song. I have since covered Lady Gaga (pre-Monster), Tim Minchin (please, look up his stuff now and thank me later), Gotye, and of course Her Diamonds by Rob Thomas.

So come check out my tumblr where I will be posting/sharing uplifting things about self-esteem and my musical skills in an effort to a) get over my public interaction/speaking/performing fears, b) get better at playing ukulele, and, c) share awesome songs that I absolutely love.