October 12th is World Arthritis Day

B&W photo of kirsten with short dark hair looking up; a teal translucent overlay with white text: "October 12th is World arthritis Day" and "Chronic Sex"

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.

photo of lil kirsten laying on a couch as a child; she has on a green tank and some character underwear
My last ‘well’ picture from September 1993. I got sick with Systemic Juvenile Idiopathic Arthritis that November.

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).

kirsten with splotchy sjia rash on her chest

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.

a photo of my daily pills (four gummies, three capsules, five pills, a nasal spray vial, and a syringe) against the cover of a book called 'Chronic Illness: Impact and Intervention' (7th edition)
Meds as of June; sadly this pile has grown

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.

12 small square photos surround a larger blue square photo with light blue and white text: "I am an American with a pre-existing condition #healthhasnoparty"; starting in upper left and moving clockwise - photo of Kirsten with former MTV VJ Karen Duffy; photo of Kirsten's pill bottle tops with a necklace featuring the Japanese character for strong; photo of Kirsten up close with very red right eye; photo of Kirsten with her Rep. Mark Pocan; drawing of Kirsten from Healthline using an inhaler; distorted selfie of Kirsten in front of muscular and skeletal posters in an exam room; a photo of Kirsten and Kenzie (Life According to Kenz); selfie of Kirsten with a bear snapchat filter that adds in a cute medical facemask; photo of Kirsten using a ventilator; selfie of Kirsten wearing a purple shirt that says "Disability is a natural part of the human experience" from Ollibean; selfie of Kirsten kissing her Biofreeze roll-on; photo of Kirsten's left leg elevated with various kinds of KT Tape and wraps on

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.

Pelvic Floor Therapy: Second Appointment

photo of a catcus plant in a terra cotta pot, flowers on two of its stems, sitting on top of a table; to the left, white text "Pelvic Floor Therapy: Second Appointment" and "Chronic Sex"

If you missed the first post on PFT, click here to catch up.

Yesterday, I had my second pelvic floor therapy appointment. I should’ve had it last week, but wound up feeling really crummy while tending to a very nervous guinea pig.

Jaq lays on my chest (clad in a grey tee) and under a yellow/grey/white quilt; he's a white and tan guinea pig with gorgeous dark eyes

(Jaq’s doing a lot better by the way.)

I’d been doing exercises my therapist asked me to do. I didn’t think they were helping. In fact, in conjunction with these exercises, I have weaned off my muscle relaxers… which is great, but also not.

Since last week, I’ve actually had several instances of waking up in the middle of the night with these spasms we were concerned about in the first place. At my appointment, we discovered that the reason my pelvic floor muscles were so good that first appointment was because of that med.

We hoped I would at least keep some of that strength and less of the tension. Alas, that’s not what’s happened.

When MJ got in there for a pelvic exam, it was instantly uncomfortable. As she moved to working on the left side, it felt like she was scraping my vagina with the jagged ends of paper clips. A dull ache started and persisted through the rest of the exam – and even into exercises.

The muscle on the left that’s struggling seems to be one that’s also involved in my hip. This could be a part of why my hip and back both hurt.

Since that contract and release exercise was no longer helping, we decided to move to two other stretches – something similar to the wall hip stretch, but with the leg being leaned on fully on the floor, and squats.

These combined with the exercises I have from my spine/neck PT – it’s a lot. After back-to-back PT appointments today, I was really tired. My muscles are exhausted. Even more, my left hip is so tight it’s not even funny. I have to lean on things cooking or doing other tasks.

Still, I hope that this leads to solutions – even if it’s different than we thought before.

In other news, it’s World Mental Health Day. Learn five ways you can help end mental health stigma {gifs in link}.

Peepshow Toys is Having a Sale!

white photo with orange and black text "20% off our fresh fall picks collection use code FALL20 valid 10-6-17 thru 10-15-17" then four pumpkins in varying sizes above the Peepshow Toys logo in orange

Our friends at Peepshow Toys are having a fall sale!

They’ve picked out nearly 50 of their coolest items to discount! I highly recommend either Uberlube or Sliquid’s Sassy lube – they’re two of my favorites!

Looking for a sleek, sexy toy? Check out the Sola Cue Multi-Function Silicone Rechargeable G-Spot Vibrator! If something more daring is your style, maybe the b-Vibe Trio Plug Waterproof Remote Control Vibrating Anal Toy is for you. Either way, you’re sure to find something to treat yourself with this month.

Still, if those fresh picks don’t strike your fancy, you can save 10% using the code CHRONIC.

Happy picking!

What Matthew Shepard Means To Me

photo of Matthew Shepard's memorial bench on the U of Wyoming campus - plaque reads "Matthew Wayne Shepard * December 1, 1976 - October 12, 1998 * Beloved son, brother, and friend * He continues to make a difference * Peace be with him and all who sit here"; under photo is a black text box with white text "What Matthew Shepard Means To Me" and "Chronic Sex"

TW: death, murder, homomisia, hate crimes.

When I was ten years old, I had already been through a lot of rough stuff. I knew that I didn’t feel as girly as I ‘should,’ and knew I liked both boys and girls.

In October 1998, I heard about a man who was beaten and nearly dead. As more news came out, I learned that Matthew Shepard had been harmed because he was gay. To this day, there are conflicting reports about this, but I believe this played a part.

It felt like the whole world was watching. As a baby queer growing up in a conservative household, this attack hit me hard. I didn’t have the words to express my feels, but kept crying – something I absolutely hate doing.

I realized why people felt they had to hide their sexuality. Even today, when things really haven’t changed as much as we like to think, it’s understandable. I still feel a bit of fear when I go out dressed more manly – and won’t ever go out with my packer.

I wanted to go and attend a vigil or go counter-protest the WBC jerks. There are many reasons that couldn’t happen, but I’ve felt this pull to go there for a long time.

Matthew was HIV positive, something that wasn’t well-known until he was in the hospital following the attack. The reason this got notoriety was mostly out of concern for the responding officer. She had faulty supplies and so worked on saving Matthew sans gloves. There was a good amount of ableism around HIV afterward. I didn’t understand why people were so harmful, so judgmental. After all, I had already been tested as a child due to my doctors taking forever to find my diagnosis of Still’s Disease.

I will always wonder what kind of HIV and AIDS advocate Matthew would’ve become had he survived.

By the time he died the following week, there was already a movement started to improve hate crime laws. By 2009, President Obama signed the Matthew Shepard and James Byrd Jr. Hate Crimes Prevention Act. This officially added sexual orientation and gender to then-existing hate crime laws.

In high school, I watched as classmates put on The Laramie Project – a play based on interviews with Laramie residents following Matthew’s death. I cried nearly the entire time. By the time I was in college, I was fortunate enough to attend a speech Matthew’s mother Judy gave about the events and her subsequent work on LGBT+ rights and hate crimes through the Matthew Shepard Foundation. Again, I cried for much of that.

As I’ve begun navigating my own queerness, it seems that there isn’t a day that goes by that I don’t think of Matthew or his family. It’s such an odd thing to say since I didn’t and don’t know them. His attack and death taught me so much about the world, though, and the way it views us.

In June of last year, the husband and I drove his old car from Wisconsin to California to give it to my sister. Our route took us through Laramie, and I knew we needed to stop at the University of Wyoming campus to visit Matthew’s memorial bench. I sat on the bench, crying, and ‘talking’ to Matthew.

This was in the middle of me figuring out my gender identity, but before I’d come out to anyone. It was comforting to sit there, to be in a spot that was set aside specifically to remember Matthew and his life. I felt so peaceful afterward.

With rollbacks happening to our rights, we have to remember these fights. It’s been 19 years, but we are by no means done with fighting for our fellow LGBTQQIA2+ or disabled/chronically ill siblings. Matthew reminds me how much one person can impact others. He inspires me on days when I’m tired of constantly fighting bills and asking Congresspeople not to harm us.

Maybe he can help you keep fighting, too.

MIAW: Let’s Talk About PTSD

on left, photo of a woman with long hair and a beige jacket standing in the rain and moving her dark hair out of her face with her left hand; on right, a grey text post with white text "MIAW:" yellow text "Let's Talk About PTSD" and white text "Chronic Sex"

Trigger warning: this article discusses Post-Traumatic Stress (PTSD). It will talk about examples of events (abuse, sexual assault, etc), triggers, and how it feels to be triggered. Practice self-care accordingly.

Post-Traumatic Stress (PTSD) is a diagnosis that can affect anyone at anytime.

The average person probably thinks of a military veteran when conversations around PTSD pop up. However, any singular traumatic event can trigger PTSD – and so can repetitive and longer-lasting traumas such as child abuse or experiencing discrimination (i.e., racism, homomisia, etc). The latter is considered generally to be Complex PTSD (C-PTSD). Some examples of other events are experiencing/witnessing assault, natural disasters, accidents, terrorist attacks, and dealing with/being diagnosed with a serious medical condition.

Symptoms

Not everyone experiences Post-Traumatic Stress the same way. However, common symptoms include:

  • Displaced anger and fear
  • Panic/anxiety attacks
  • Low self-esteem
  • Distrust, isolation
  • Shame, guilt, self-blame
  • Depression
  • Dissociation or detachment
  • Upset stomach, bloating, gas, IBS
  • Weight gain (difficult to lose)
  • Migraines
  • Tinnitus
  • New allergies or skin conditions
  • Sleeping issues, insomnia
  • Poor memory
  • Difficulty concentrating
  • Chronic pain
  • Muscle tension
  • Change in amygdala size
  • Hypervigilance (being extremely alert, on edge)
  • Flashbacks
  • Nightmares

There is a wide variety of triggers that might trigger a recollection of an event. Some common ones include smells, words, and similar situations in media. When this happens, a person doesn’t just remember the event but will actually have a physiological reaction. You may feel you’re being touched or experiencing heat off of a fire that occurred in the memory.

The reactions are physiological. Not only do you remember the event and feel the way you felt, fear and similar reactions occur. It can be hard to come down from this as well.

Treatments

Therapy can be helpful for many, especially Eye Movement Desensitisation & Reprocessing (EMDR) therapy.

Medications can help as well, specifically antidepressants or anxiety medication.

Meditation and yoga can be helpful as well. Other complementary therapies like massage or acupuncture might help as well.

There is no one perfect or preferred treatment. Just like with most mental illnesses, it depends on what works best for you and your lifestyle.

What It Feels Like

The biggest reason I’m talking about PTSD for Mental Illness Awareness Week is that I have it. It’s something that is incredibly misunderstood. While I believe I’ve had this since childhood, I wasn’t diagnosed until March 17, 2015.

By June of that year, I was writing in-depth posts about the abuse I witnessed or went through. Funny enough, as I watch (or rewatch) shows and movies, I’ve noticed new things around PTSD – like how Seven of Nine on Star Trek: Voyager has PTSD – and how Captain Janeway victim blames Seven instead of really being helpful.

Like with any illness, the unpredictability and lack of control are the biggest issues. Even with trigger warnings – which are incredibly important – I’m not always in a good headspace to read things.

If you have Post-Traumatic Stress, know that you’re not alone. It’s hard to handle this condition, but learning to do self-care really helps.

Sources

Royal College of Psychiatrists, PTSD UK, personal experience