TW death and dying, mentions of abuse and neglect

Hooray, it’s World Arthritis Day?

Arthritis is something that’s been big in the news, even if you haven’t realized it. Lady Gaga and Selena Gomez both live with types of arthritis. Confused? Read on!

Basics on Arthritis

Arthritis isn’t just for old people, even though that’s who we usually associate with that word. What arthritis means is bone (arth) swelling (itis). Diseases that feature this symptom commonly, whether as the main symptom or just a possible one, often get listed under this umbrella. Some of the over 100 conditions that are under this umbrella include Rheumatoid Arthritis, Lupus, Fibromyalgia, Ankylosing Spondylitis, Gout, Osteoarthritis, Lyme Disease, Scleroderma, and Tendonitis. Sometimes, this list includes Inflammatory Bowel Diseases like Crohn’s Disease.

Most of these are invisible diseases, meaning you can’t tell someone is ill. While there are many people who utilize assistive devices like wheelchairs, there are plenty who don’t. That may be due to a lack of access or funding, physical accessibility of their surroundings, lack of a concrete diagnosis, concerns on displaying as ill/disabled, not needing them, or a number of other things.

These conditions affect 1 in 4 people in the European Union and 1 in 5 adults in the United States. Here in the US, it’s one of the leading causes of disability. More than 200 billion Euros and 156 billion US dollars are lost each year due to these diseases. That includes lost work time as well as medical bills. That’s a combined total of nearly 400 billion US dollars or 331 billion Euros.

Yikes!

Juvenile Arthritis (JA)

The ACR says that 1 in 1,000 American children develop some kind of ‘chronic arthritis.’ The most commonly cited statistic is that 300,000 children have a type of JA, though it’s debated whether or not that is limited to just the three main types of JIA. These are Systemic, Oligoarticular (up to four joints), and Polyarticular (five or more joints).

I tend to think this number is more limited to the main JIA types, leaving out juvenile fibromyalgia and other conditions. Most organizations characterize these other kinds as ‘Pediatric Rheumatic Diseases.’

Some types of JA are short-lasting, like Kawasaki Disease and Fifth Disease. Others, like the JIAs and Juvenile Lupus, are life-long. Remission may be possible. Since that often depends on how quickly someone is diagnosed and treated, it’s not always achievable for many of us.

“Wait, us?” you say?

Yeah, I have SJIA. And it sucks.

Systemic JIA (SJIA)

Systemic JIA (or Still’s Disease) hits roughly 10% of the above statistic. A salmon pink rash accompanies this and is not usually itchy. (If I recall correctly from my copy of A Primer on Rheumatic Diseases, only 5% of us ‘enjoy’ the itchy version.) It can look like welts, small circles, or hives. This rash usually comes along with the fevers SJIA brings. It can also be triggered by stress, high emotion, and rubbing or scratching (AKA the Koebner Phenomenon).

Fevers can peak up to several times a day, but generally happen at least once a day. While it affects joints, SJIA also affects organs. Aside from the skin, it likes to attack organs heavily involved in the immune system like the spleen.

It can also cause Macrophage Activation Syndrome (MAS) which can be fatal.

Death

The SJIA communities I know have lost nearly a dozen children and adults over the last few years due to MAS or other complications related to the disease. In 2012, I actually lost my best friend at the time to complications from an infection related to her SJIA.

Even other kinds of arthritis can be fatal.

Living with one of these conditions can decrease your life expectancy by up to 15 years. Each patient handles these kinds of issues their own way but I, for one, am scared as shit. I try not to show it that much, but I have ‘existential crisis’ days where I’m constantly having panic attacks over death and dying.

It’s fucking scary.

Day-to-day Life

Like anyone, I have good days and bad days. After Monday’s PT, I found myself incredibly sore. I’m still dealing with swollen knees from it and it’s Thursday. I have canes, but they try to murder my hands and I can’t do without typing. It’s ‘easier’ to just deal with the knee crap than work to find something better.

When you have one type of arthritis, you can wind up with others. My kneecaps grind and hurt all the time, part of patellofemoral arthralgia. I suspect I have tendonitis in a few spots and have dealt with bursitis a few times, too. Fibromyalgia kicks my ass often. I struggle with holding hands, playing with the piggies, and even wearing clothes. That doesn’t even get to things around the house or work stuff I do. It sure as hell doesn’t address my intimate life, either.

I take more naps than I would like. I have to rely on medications to function. If I’m late by even ten minutes, my body screams. I have a million things to try to lower my pain – lotions, migraine glasses, copious amounts of caffeine, CBD oil, high-tech gadgets, etc. Still, I wind up struggling through at least half my week.

Fatigue, brain fog, and chronic pain all enjoy working together to harm us. They bring depression and anxiety to the party, too. My childhood adds just a dash of PTSD for good measure. Who am I kidding? It’s more than that. Hell, I can barely sleep in my bed right now because of pain and nightmares. It’s really, um, unpleasant? Uncool? Shittastic?

Still, I’ve been on a biologic medication that keep my SJIA steadily ‘okay’ – and has since the summer of 2015. It’s the longest I’ve been on one biologic. Seven different meds have failed me in eight years. Kineret keeps my labs looking… well, the best I’ve ever seen them in my entire life. I’m very lucky to be sitting here today, especially with 14 years of neglect, without real treatment.

I very easily could be dead. I maybe even should be, statistically.

Living with Arthritis is Still Living

Despite being in unrelenting pain, I know that I’m not alone. There are so many of us in similar situations, dealing with undertreated pain. We go through life looking for resources to help us live as well as possible, even creating them if we have to.

Shit, that’s why I write about what I deal with, right?

Plus, I’ve gotten to do some pretty cool things and meet some of my heroes. So that’s neat.

At the end of the day (usually), I’m still alive. I’m still living the best life that I can while I can. In the end, that’s all we can do, right? Live well, help others, and push for better changes in our world.

Hopefully, snagging some information on arthritis can help y’all be mindful of what others may be facing. At the very least, I hope I undid some of the stigmas out there.