Day 7: Sensationalization of Illness #HAWMC

Posted on by Grayson

To be honest, there have been too many sensational cures going around in our lovely media lately that I don’t want to add to it or promote it. I will say that Dr Oz is one HUGE part of what I’m talking about, showing sensationalized “cures” for JIA without showing the medications individuals were on, or how it could be far more likely that an individual was misdiagnosed and that the treatment for one thing “cured” them of the incorrect illness.

I’m tired of being told to eat rum-soaked raisins. I’m tired of people telling me to avoid 8 different food groups. I’m tired of having all of these idiots think ‘arthritis’ is all aches and pains, and not see the chemotherapy, stem cell treatment, failed meds, and friends we lose because as a society we fail to see the value in researching new treatments and cures for autoimmune diseases.

Laura died because doctors – at a hospital she frequented – didn’t know how to handle someone with an autoimmune disease and practically non-existent immune system due to the treatments. Forgive me if I don’t want to lend credence to the idiots who don’t understand that these diseases are deadly.

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

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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

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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!

Happy birthday Sir George!

Posted on by Grayson

Sir George Frederic Still was born on February 27th, 1868. If you haven’t guessed by now, Still’s disease is named after him. He also did a lot of work with ADD and meningitis.

There is much to know about this man, and to know the full story you can pop in on my sources here and here. This is going to be the short-ish version.

In 1894, Sir Still went to work at the Hospital for Sick Children and began to study a form of arthritis occurring in children similar to adult RA but with new specifics like organ involvement. He wrote a thesis on this new juvenile arthritis in 1897, becoming a savior in my eyes. His hard work eventually earned him a sweet permanent position as the first-ever Professor of Children’s Diseases at King’s College Hospital.

He did a ton of work with diseases in children, but never really wrote about the disease that bears his name after that thesis. Dude had all sorts of honors though, from serving as princess Elizabeth’s doctor to being knighted to writing textbooks and all sorts of appointments.

Without George Still, I have no idea where I would be right now. This man was incredibly brilliant and knew he had to study this childhood-onset arthritic disease more closely. Because of his research, I am alive today really. This disease is so rare that it’s often mistaken for things like leukemia and fifth’s disease.

With only a few minutes left in your birthday George, I thank you so much for everything you did for all these children. And I toast you with my Enbrel shot!

Does being chronically ill make you lose smarts?

Posted on by Grayson

I was just reading a bunch of books on chronic illness as you may see from the reviews in some of the more recent posts. In one of the books, The Pain Chronicles by Melanie Thernstrom, I read a disturbing fact about how the grey matter in our brains deteriorates the longer we are in pain.

Um, what the fuck?

I also read, though, about how a person with a bad hip had regenerated grey matter once the hip was replaced and the pain stopped.

Obviously, this is something that has been bugging me. Not only is this especially disturbing for those living with chronic illnesses in general, but I believe it’s especially disturbing for those of us who fell ill as young children. I was starting to really worry about how this wasn’t really a known fact, even in the chronic illness community, until one of my favorite bloggers Andrew Sullivan mentioned some interesting findings about T cells and brain function earlier this week (if you want to read the full study Sullivan refers to, click here, though be warned it’s a lot of terminology or you can click here for an interview with the dude in charge of the study).

Perhaps one of the most intriguing things about the study is that it specifically showed the involvement of IL-4 producing T cells in cognitive abilities – the T cells help improve our cognitive abilities while the absence of those cells protecting the brain allows inflammation which inhibits our thought processes! And all this time we thought brain fog was one of those side effects of chronic illnesses that were just not explainable!

For a lot of people with rheumatic diseases, the causes of their inflammation aren’t known but are treated with medications we probably all know by now – actemra, kineret, ciclosporin, enbrel, humira, etc, etc, etc. Enbrel and humira are in the class of drugs that affect tumor necrosis factor alpha, believing that is the cause of the out of control inflammation. And it works for people.

The first three I mentioned – actemra, kineret, and ciclosporin – work on cytokines (cell signaling proteins that play a result in the inflammatory response in our bodies) that are known as interleukins. Actemra works on IL-6; kineret works on IL-1; and ciclosporin works on IL-2. Interleukins are another believed cause of the over-inflammatory responses in chronic illness and all three work remarkably better in people with Still’s disease, whether they’re young or old.

In the study, interleukin 4 is in high volume in the brain when we are well, attributing to better learning and memory skills. When we are ill, IL-4 levels are low. The thought is that IL-4 is the specific group of cytokines that tells T-cells to protect the brain from any toxins secreted, but after an injury those T-cells have to go off to fight the infection – those of us with chronic illnesses of the autoimmune kind don’t have injuries/infections/etc all the time, but our illnesses fight our own bodies like an infection or an injury. Essentially, this creates issues with our brains where we are literally stupid for periods of time – like a flare up or period of higher disease activity.

Brain fog being something people can’t understand is becoming a thing of the past it seems. Yay!

PS it took me like four days to write this post. Thanks T-cells!