Category: arthritis

Pre-Order “Keeping It Real with Arthritis” Today!

Posted on by Grayson

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Featuring over 100 worldwide, personal stories written by passionate and inspiring individuals living with arthritis, and their supporters; parents, caretakers, and medical professionals. Ranging from heartfelt, hopeful, motivating, and empowering, to heart-wrenchingly eye-opening, these stories shine a light on the realities of everyday life with arthritis and related conditions. Readers will get a first-hand look at the good, the bad, and everything in between, from those who are experts in lived experience and clinical matters. This book is not only a collective effort to raise awareness that arthritis is more than just a disorder that affects the joints and highlights that people of all ages can get arthritis. Most importantly, it explains there are hundreds of different forms of arthritis that impact all areas of life in profound ways, from physical limitations, mental health, social lives, relationships, faith and spirituality, finances, and work and career life balance.

One chapter is written by yours truly!

You can pre-order the book up until the release date – December 6, 2022 – here.

Research Study on Cannabinoids for Californians with OA, RA, or Fibromyalgia

Posted on by Grayson

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Researchers from the University of Michigan are conducting a study on the efficacy of different cannabinoids (such as CBD and cannabis) in treating Fibromyalgia, Rheumatoid Arthritis, and Osteoarthritis and YOU have the opportunity to participate!

If you complete the study you may receive up to $500 in Amazon gift cards.

Again, this is for California residents only.

Learn more here!

The study sponsors are LEVEL and Overcome. Each participant will be in the study for 12 weeks. You can easily participate from the comfort and safety of your home using your smartphone. Again, this study is on the consumption of cannabinoids such as CBD and cannabis.

The study is limited and on a first-come, first-serve basis. To learn more and find out if you are eligible to participate, please visit releaf.at/umpain

Want to get more involved with National Arthritis Week?

Posted on by Grayson

So you want to get more involved with National Arthritis Week eh? Well, you’re in luck! Check out some of these resources:

Also, don’t forget World Arthritis Day is on Saturday, October 12th!
Whatever you do, get involved and promote awareness. Diseases where arthritis is involved aren’t always bone-focused (though those can be life threatening and scary as well); sometimes they’re mistakes in the immune system. These diseases can – and do – take away adults and children that we love. The only way things will get better and change is if we make that happen.

National Arthritis Week (7-13 October) and World Arthritis Day

Posted on by Grayson

 

This week is National Arthritis Week in the UK. I live in Wisconsin, but you know what? Arthritis Research UK is an amazing organization and I’m happy to be helping them out this week by spreading the word. The late great Laura of Still’s Life was a huge supporter of theirs and I’ve been working with them to try to pick up a bit where she left off, even if it isn’t anything huge.
All this week, I’ll be posting information in general about arthritic diseases (like I don’t normally anyway haha). You can feel free to ask how to get more involved, or contact many organizations directly. A great example is World Arthritis Day, coming up this Saturday, October 12th. You can visit their site to learn more about their activities.
If you’d like to make a pledge, feel free to snag the pictures above and post “My joint effort pledge is…” with what you’re planning on doing. It could be something as simple as waking up despite your arthritic/rheumatic/autoimmune disease, or as involved as volunteering with an organization. More info can be found at the Arthritis Research UK site for National Arthritis Week or by asking questions of me and others participating.

Watch for some more posts this week (GASP) and upcoming information. If you tweet or use hashtags elsewhere, the following are the hashtags for this week: #pledgend #nationalarthritisweek and #jointeffortpledge

Darth-ritis

Posted on by Grayson

Earlier today, I was working on some future blog posts and the fiance turned to me and said that he sometimes sees me as Yoda helping people fight ‘the Darthritis.’

Badass, I am

At first, I just thought it was hilarious and I was also pretty disappointed that other people hadn’t thought that up yet. Seriously.

But then I actually started thinking about it. If you haven’t seen Star Wars (seriously, how are you alive at this point?), note that the rest of this contains spoilers.

Okay, so we all know that Luke goes through a lot of film roll thinking that Vader is an outside being unrelated to him – only to find that it is a part of him gone horribly wrong.

It’s not unlike how people believe they have a cancer or mono or some other ailment until they find out they have a malfunctioning immune system… which leads me to my next point.

The white blood cells control the immune response and are the weapons used against invading viruses and bacteria… like the Stormtroopers fight the rebels!

We heard you guys had some in-vaders.

The Millennium Falcon could be likened to the meds we take – their release mechanisms and effects on our bodies.

Every Luke needs a Yoda to sift through the information, to mentor us and to show us the ways of the rheumy force. Anyone could be your Yoda – your awesome doctor or nurse, your cousin, or a stranger you never even met. Together with their support/training and the support of your fellow ‘rebels’ I have no doubt that someday our bodies will decide to help us knock the evil Emperor Palpatine into the never-ending tunnel of despair.

Do it man!

Now that I’ve stretched this comparison probably as far as it should go, I leave you with my arch-nemesis – Darth Ritis.

 

Arthritis Awareness Month, or Why IAAM and WAAD Are Important

Posted on by Grayson

Having an invisible illness is really difficult. It is difficult, also, when that invisible illness has a stigmatized word attached to it like ‘arthritis.’ Thankfully, the International Autoimmune Arthritis Movement (IAAM) is working on changing the stigma by explaining to people that Still’s Disease, Rheumatoid Arthritis, and other diseases are forms of autoimmune arthritis.

I have talked a bit about the differences between osteoarthritis (OA) and autoimmune arthritis (AA) in the past, but just to recap AA is caused by a malfunctioning immune system while OA is caused by aging, repetitive movements and injury. Both can be extremely painful and no one wants to downplay the pains of either kind. AA though is a systemic issue, which means for many of these diseases there can be effects on organs, skin, eyes, and even mental issues like brain fog. OA stays in the affected joint and doesn’t have the ability to cause these extraneous issues.

The reason it is important to distinguish is to raise awareness of what those of us with autoimmune arthritis do go through. This is not the same arthritis that your grandmother faced – it is much different and can, without the correct treatment, cause permanent deformities, extra illnesses and issues, and even death. Despite the pains that OA causes, that is something it cannot cause.

On May 20th, IAAM will be hosting the first ever World Autoimmune Arthritis Day (WAAD)! This is a 47 hour long event covering all time zones where there will be live presentations, on-demand presentations, and chat sessions hosted by IAAM volunteers and prominent bloggers.

Including me! Whoo! I’ll be presenting, in an on-demand presentation, tips on how to maximize your healthy time living with AA. I am really excited about my presentation and I hope that you all will join WAAD to learn more about autoimmune arthritis!

I know I have totally shared information on IAAM and WAAD recently. But it is an issue and a project that is very near and dear to my heart. I know too many children with autoimmune arthritis who shouldn’t have to suffer the stigma and the misunderstandings associated with juvenile arthritis.

So please look into WAAD! It’s going to be an amazing event with take away handouts you can access to help you remember the tips and tricks that IAAM and other contributors have to help make things easier.

IAAM and Awesomeness

Posted on by Grayson

For those of you who don’t follow me on social media, you might not know something awesome! I’ve begun the track to volunteering with IAAM, or the International Autoimmune Arthritis Movement. Right now, IAAM has been working on creating a number of awesome posters to raise awareness for the first annual WAAD, or World AA Day!

Here’s mine!

Yay, poofy sumo face!

I actually really had reservations about using my poofy face picture. I HATE looking like that, and it’s happened several times now. Once, as a young girl, it was so bad I couldn’t see out of one eye. And my sister lovingly called it ‘sumo face’ – and the name stuck. Thanks Kelsey 😉

If you haven’t heard about IAAM, please check them out! Volunteering with IAAM is an amazing feeling, and I LOVE how I’ve been able to connect with so many people so honestly about the issues facing those of us with a form of AA.

Wait, there’s more than one arthritis?

Posted on by Grayson

Holy crap, did you know that there are 171 different types of arthritis??? This isn’t just limited to things with ‘arthritis’ in the name – Lyme Disease, Kawasaki Disease, and Spinal Stenosis are just a few of the others.

Often when someone hears that I have arthritis, they get this vision of a 105 year old lady with crooked fingers and can’t believe someone so young could have that. That’s because they don’t know the differences between things like Osteroarthritis and Still’s Disease. Let’s take a [not-super-close] look!

Osteoarthritis

  • Caused by wear and tear on a joint. Once the padding in the joint is rubbed away, bone hits bone. This is a relatively common occurrence for athletes or anyone doing repetitive movements (factory workers, etc).
  • The most common symptoms are pain, limited ROM, tenderness, and morning stiffness.
  • Steroids and OTC pain medication are the most common forms of treatment, but more effective pain meds and surgery happen often.

Still’s Disease

  • Has no found cause but there are many theories
  • Symptoms range from a ghost-like rash to swelling of the organs to intense joint pain.
  • The most common treatments involve a combination of steroids and methotrexate, generally combining them with a third drug. I, for instance, am on Plaquenil in addition to those two.
  • Surgeries are pretty common, especially for those developed the disease at a younger age. Of course this really all depends on treatment and the strength of the disease.

Now, I’m not downplaying the pain and severity of dealing with osteroarthritis. However, those with more complex forms of arthritis, such as Still’s Disease, generally have a lot more problems to watch out for. So why is it that most forms of arthritis don’t get as much attention as those that affect the old people (or those who do the same thing over and over again)?

I say it’s because there are not enough ‘famous’ people facing these disease willing to speak out about them. It’s always about hiding a condition. Instead, we need people like Kathleen Turner to come forward and embrace their disease, using it as an awareness tool. Until we have that, we won’t really get recognized by the rest of the world.