This afternoon, I board the first of two flights on my way to San Diego for the American College of Rheumatology annual meeting!
I’m incredibly excited to be attending this year. It’ll be my first year there. I’m unsure what exactly to expect. I’ll be covering sessions I attend here, when relevant. Sadly, there is no sex session this year – go figure!
If you’re in San Diego, hit me up! I leave Wednesday morning but would love to see you in the meantime.
And Kinkly says I’m the number 12 sex blogger on their list.
What even is life??
Thanks to everyone who voted!
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In case you’ve missed some of the amazing things happening in the last few weeks, Chronic Sex is taking off!
I was recently featured in Broadly’s piece “Having a Chronic Illness Doesn’t Mean Giving Up Sex” by Nicole Haase.
I was also just quoted in Teen Vogue, too, in Ariel Henley’s piece “Why Sex Education for Disabled People Is So Important.”
Other press you may have missed:
You can find others over at my writing site.
Life is feeling just a little bit surreal lately.
I had my fourth pelvic floor therapy appointment yesterday. I left with a very massaged butt.
For some reason, it feels a little odd that an older gal is the one that did it. It works, though!
When I last wrote about PFT, I was struggling with a lot of pain. Trying new exercises – especially with my spine/neck – is rough. Now that I’ve weaned off the daily use of muscle relaxers, the PFT stuff is catching up to me, too.
Appointment three consisted of an external exam focused on my butt. What we found was that I have a very tight piriformis muscle too! This connects the spine with your leg and helps control your hip movements. It can even cause some sciatica-like pain!
It also explains a lot. My left hip is very painful at times, something that seems to be related to my overly tense muscles. I’m having to do a lot of exercises or movements around opening up the hips, like sitting crosslegged.
For appointment four yesterday, we focused on manual manipulation of this muscle… so, like I said, a sweet older lady spent a while rubbing my butt. Between her, my new acupuncturist, and the hubs, I’ve really been getting a lot of butt action!
It’s a really odd sensation. There’s a lot of tension there. I don’t seem to notice it unless someone is applying pressure, though. It’s very similar to having a tight IT band. It makes sense – the pelvic floor muscles, leg muscles, and back muscles all work together. It’s part of why my lower back pain makes so much sense, too.
I mean, that and my bulging disc.
I should’ve expected it, but I’m dealing with increased pain as we try to improve these muscles. It’s not my favorite thing, especially when it means waking up with more vaginal pain.
For now, I’m focusing on a few exercises: squatting, hip flexor stretches, and squeeze/contract. The only ones that seem to help are the hip ones, though, so that’s where my focus is. Hopefully, things won’t be quite as painful soon.
Have you wanted to participate in Twitter chats, but aren’t sure how? Wondering about the best ways to lurk? You’re in luck!
Since not everyone spends all day on social media, here are some basics about Twitter.
I find it to be a great medium, especially for disability activism. That said, there is a lot of harassment and abuse on Twitter, too. They have a history of not condemning actual hate speech, siding more often with aggressors especially in marginalized communities.
Let’s look at a Tweet, shall we?
![Tweet from Chronic Sex (@chronicsexchat) at 4:04 PM Central Time on 14 Oct 2017 with 3 retweets and 10 likes: "Blocking someone for [new line] Self-care [new line] Care of others [new line] Energy reservation [new line] Any other reason [new line] Is something that no one should have to explain"](https://i0.wp.com/www.chronicsex.org/wp-content/uploads/2017/10/Untitled3.png?resize=900%2C615&ssl=1)
As you can see, this is the Chronic Sex Twitter account posting something. There’s a time stamp here along with some information. We see that this has gotten 3 Retweets, listed in text but also as the recycle symbol at the bottom there. A Retweet or RT is when someone clicks that recycle button and reposts your content on their page. It still comes up as your tweet with nothing changing, aside from a person’s followers being exposed to what you’re saying.
Someone’s followers may also be exposed to your tweet if who they follow has ‘liked’ what you say. Here, we see that 10 people ‘liked’ this tweet as demonstrated again in text and with a little heart. To like someone’s tweet, you simply click that heart.
There’s also a text bubble at the bottom with a one next to it. This means there is one reply to this tweet. In this case, I replied to it myself to expand on my thought. When people do this, it’s called a thread.
That little carrot in the upper right allows you to copy the link to tweet or share this elsewhere, embed the tweet, or even do things like report content as long as you’re logged in.
Additionally, you can now quote-tweet which allows you to add a short comment while sharing the tweet in question.
One of the best uses for this is to add trigger or content warnings. A post on these is coming soon, but some of the most important to add are gifs in link, sexual assault, rape, childhood sexual abuse (or CSA), murder, death, suicide, suicidal ideation, and various forms of discrimination (ableism, transmisia {gifs in link}, misogyny, etc.).
It’s always good to look at an account’s profile page to learn more.
There is a banner across the top, much like Facebook has. There is also a circular profile photo. You have your name as you want it displayed, which is different than your handle. For instance, because someone else has the handle @chronicsex, ours is @chronicsexchat despite the fact that our organization’s name is Chronic Sex.
You can include hashtags in your profile bio. You have a limited number of characters in which to express what you want to show the world. Brevity is something Twitter is great for, though they are working on expanding character limits for Tweets. This is rolling out in stages, though, so don’t expect an expansion for your account soon.
You can also pin a tweet to the top of your page. Most people use this to share either a popular tweet of theirs or the beginning of a thread to share more about themselves than they can in the bio.
In this age of White Supremacists on social media, there are some very important things to keep in mind. It may be best to have a screen name that isn’t associated directly with your name. A nickname or something might be good.
If anymore makes comments to you that are uncomfortable, you have every right to block them. There are two features that I suggest using. The first, of course, is block. The second is mute. You can mute people while they participate in chats that might be triggering to you, etc.
Most Twitter chat hosts will post rules specific to their chats in the moments leading up to chat time. When in doubt, stick to those rules.
Most importantly, in order to fully participate in chats, your profile should be set to public. You also need to include whichever hashtag the chat is using. That way, people will be able to see and interact with your tweets.
The easiest way to follow a chat is using that hashtag. Type the tag (including the hash) into your search bar. You’ll be taken to a page full of tweets with a navigation bar like the one below:
If you click on ‘Latest,’ you’ll see tweets as they come in under the tag. You can also use TweetChat or another third-party site. These tools ask you to log in with your Twitter information. TweetChat automatically adds the hashtag for the chat to every tweet you send which is valuable.
Questions may be either numbered or labeled as Q# or T#. Q stands for Question and T stands for Topic. Chats using the Q format generally ask that answers then use A# or quote-tweeting. This way, it’s easier to keep track of which question you’re addressing. If you’re on a chat using T, know that they tend to be shorter and focused on up to 5 topics in total. That’s not a rule but seems to be the case.
I always suggest lurking for one or two chats. You’ll start to get a feel for the people within the chat as well as how things are handled.
First off, I do ask that we stick to the topic at hand as much as possible. There are a few reasons for this. If we used the tag as just another way to talk about everything, it wouldn’t mean as much. There are also topics that can be quite triggering and I like to give people a heads up on if we’re discussing those things. It’s bad to come into a space and then find yourself triggered because of a lack of warning.
Likewise, staying on topic can be incredibly important for many of us who need structure. I need rules. It’s a part of my anxiety and growing up in isolation. Rules and guidelines can help set expectations that, for many of us, are beneficial.
I also always ask that people refrain from the following while participating in chat:
It’s also important to know that, while someone may share their personal success stories with something, our chat is not set up for giving medical advice, endorsing types of care or activities, or replacing information from your personal healthcare team.
For our chat, we utilize the Q# system. Since many people don’t feel comfortable using our hashtag for a variety of reasons (work, family, etc), I’ve also started asking as many questions as I can via poll. This is great because you can click an answer that resonates with you and it’s anonymous.
People are welcome to answer the questions via poll, reply, quote-tweet, or whichever method(s) are easiest for them.
If you’re answering a question with your own words, your answer may be retweeted or quote-tweeted by myself or others in the chat.
Our chat time is 8 pm Eastern | 7 pm Central | 6 pm Mountain | 5 pm Pacific. If you’re outside of these time zones, please consult a time zone converter. Unfortunately, my health currently prevents me from running two chat times. That said, the polls are open for 24 hours after they’re posted and plenty of people participate throughout the next week. It’s perfectly fine to jump in whenever it’s most convenient for you.
Here are a few other chats you may be interested in.
Dawn Gibson started this chat a few years ago to help bridge the divide across illnesses and disabilities. Many of us face similar issues – such as planning for disasters – and can learn a lot from each other. Commonly referred to as the web auntie, Dawn is one of the most caring people. I’m lucky to call her my friend.
Run by Colin Hung and Joe Babaian, the acronym stands for Healthcare Leader. This chat talks about a variety of issues those working in and around healthcare face today, regardless of what role we play. Patients are always a large part of the discussion – and always welcome.
Dominick Evans is a well-known disability activist. He’s been running this chat since 2014 due to the lack of disability representation in film and media. Recently, FilmDis took off as an official national non-profit. Past topics have included disability in Disney, video games, and shoddy Autism representation in shows like The Good Doctor.
Run by three prominent disability activists – Alice Wong, Andrew Pulgrang, and Gregg Beratan – CriptheVote is a space to talk about disability and politics. While their schedule is varied, the tag is always engaged with people sharing everything from fighting the dismantling of the ACA to interviews with politicians.
I highly suggest finding organizations centered around illnesses you may have and following them. Many have chats at least once a month.
If you’re looking for others, I suggest checking out Yuri’s calendar. Note that times are listed in Pacific Time. Symplur also keeps a list of Twitter chats registered on their site.
Hope that helps a bit with Twitter basics – happy tweeting!
October is National Talk About Prescriptions Month here in the US.
It’s important to be mindful of the medications we’re on. I often hear from patients who don’t know about the options they have for medications, let alone things like patient assistance programs. Many pharmaceutical companies will help you gain access to their medications in addition to staff familiar with various issues you might run into. One of the things I’ve found them most useful for is discussing side effects and how to handle them.
Side effects aren’t discussed as often as they should be. When I was going untreated for my arthritis, I was made to fear all the side effects listed during pharmaceutical commercials. When I started medications, then, I was understandably quite nervous. I would cry reading the pamphlets that came with my biologics and wonder how long it would be before I experienced a major medical event because of them.
As time went on, I became more comfortable learning and talking about side effects. Part of it was that I learned more in general, like how even vitamins can have side effects. I also do a lot of nerdy research, read journal articles and studies, and talk to people who have been in or helped run clinical trials. There is an art to discussing and reporting side effects.
In general, we don’t talk enough about side effects we may be embarrassed about. It makes sense. Stigma clouds our responses, making us more timid to speak up. We don’t talk about how medications can change our bowel and bladder habits, for example. Everything thinks talking about poop is gross or that Depend products are only for the elderly. Reality is much different.
The biggest area we don’t talk about is sex and sexuality. As a society, we inject sex into everything from burger commercials to hidden jokes in children’s movies. Despite being bombarded by sex, we really don’t talk about it. Even our sexual education system is lacking in current, agenda-free information. That becomes even more true for marginalized groups like disabled and chronically fabulous people.
One thing we absolutely must start doing is discussing sexual side effects of medications we take. Sex is a natural part of the human experience, just like disability. To help start the conversation, I’ve pulled side effects of commonly used medications for various categories. I’ve removed the actual names, but will also share further down how you can look up your medications.
These medications are utilized to treat HIV and AIDS.
Disease-Modifying Anti-Rheumatic Drugs (DMARDs) is a category that encompasses a wide variety of medications. As such, this list looks a little different than the one above. Let’s go medication by medication.
Non-steroidal anti-inflammatory medications are things like ibuprofen, naproxen, and other (possibly over-the-counter) pain relievers.
If you’re curious to find out more about sexual side effects, there is a relatively easy way to go about it.
I use Drugs.com to look up medications. I’ve just always found it the easiest site to use for any med-related research. You can see variants on pills, look up interactions, and more!
The problem is a lot of sexual side effects aren’t listed on the patient/consumer page. For the most info, you’ll have to scroll down to the section labeled “For Healthcare Professionals.” Look for things in the category ‘Genitourinary.’
It’s okay if what’s listed isn’t easily understandable. Googling a word is always acceptable.
The most important thing to do is bring up your concerns with a physician. This could either be the prescribing physician (i.e., rheumatologist), primary care doctor, or a health care provider specializing in that area (i.e., gynecologist).
Before you bring it up, though, it may help to track some information. I always feel better when I can show my health care team what I’m talking about.
I find it best to keep track of symptoms. It always helps when we have data to backup what we say, even if it’s basic. You could do something like write down each time you have difficulty becoming aroused. You could go super nerdy, too, and plot things like vulvar pain in Excel. Plot points tend to do better when you can create a numerical value for what you’re plotting, so keep that in mind.
You can then look at if the medication is helping you, other medications you could try, or ways to combat the effects you’re dealing with. There isn’t always a way to get off a prescription or switch to a different one, and that can be hard to deal with.
The key is to figure out what is most important to you and work within your wants and needs.
I know I was! The Lyrica I’ve been on for years sits in the muscle relaxers and nerve damage medication category. In fact, that’s what the last few side effects really reference. As someone going through pelvic floor therapy for pelvic pain and spasms, I was surprised to see that this medication might be contributing to this problem. Since this is a relatively new issue, I don’t believe Lyrica caused this for me. That doesn’t mean it doesn’t play a role.
The tough thing is that Lyrica is the only thing that really helps me medically to lower my fibromyalgia pain. Since I work for myself now (and know flogging helps me), maybe it’s a good time to consider lowering my dose.
My friends over at Tool Shed Toys are hosting a Facebook Live tomorrow night (October 17th)!
Here are details from their event page:
When it comes to sex, it seems like the more you learn, the more there is to learn. Do you have a question or three about sexual health or pleasure? Wanna get an honest answer and a couple of good laughs? Spend the evening in the virtual company of Tool Shed staffers Lucky and Hudson and anonymously ask your secret questions. We’ll combine honesty and humor, while providing accurate, up-to-date information to anyone with questions. Please join us!
For this event, we’ll go live from our Tool Shed Facebook page at 8:30 pm (Central) on October 17. Questions can be sent to our Facebook message inbox starting at 7:30 pm (Central). Sending us a question grants us permission to read the question aloud, but we will never reveal any personal details like your name, age, or location when reading the question.
Lucky is one of my favorite people in the world. As a midwife and sex educator, she is incredibly knowledgeable. On top of that, she knows so much about sex and chronic illness.
This really should be quite a treat, so make sure to check this one out!
There are over a dozen fires raging through California right now. Most of them are in and around where my sister lives – Northern California. They have not had to evacuate yet, but with her having asthma and small kids, the tension is high.
She’s not alone, though. There are a ton of people sitting on the edge of evacuation zones struggling with ash, heat, and more.
Thousands of people have evacuated, lost their homes, or worse. Right now, the death toll sits in the mid-20s with nearly 300 people missing.
Here’s how to help if you’re in the area:
Originally posted on Oct. 12. Updated Oct. 12.
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!
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!
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 (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.
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.
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.
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.