Tuesday, December 19, 2017

End of Year Health Update

photo of two legs with black leggings against a dark gym floor; pink text "end of year health update" and white text "not standing still's disease"

It's been a while since I did a health update on here. Things are going... okay? As of last week, I was discharged from pelvic floor therapy. This week, I anticipate being discharged from neck/back PT as well.

Around Thanksgiving, I joined a gym. I've been working out 3-6 days a week, depending on how my body is doing. I know that when my body winds up being very numb, it isn't safe for me to go and do much. Despite being on a prednisone burst, I've lost ten pounds in the last few weeks. 

I had a follow-up with the neurology physician assistant earlier this month. I left unenthused, to be frank, and frustrated with the lack of care I'm receiving. The PA was more concerned about telling me to do things I already do and medication-shaming me than working with me around the very odd symptoms that reared their ugly head big time this year. 

I find it alarming to tell a patient in distress that there are medications that can alleviate their symptoms but they're on "enough already."

Still, we added in B2 and magnesium which - when I take them both daily versus as needed - have helped with my migraines. This has had no effect on my odd numbness, though, as the PA assumed it would. This tells me that my odd symptoms aren't related to my migraines (as she assumed) or that these levels aren't enough to tackle the issue.

a variety of pills, capsule, and tablets of a variety of colors in someone's hand

It takes me about 20-30 minutes to take my morning meds now. It's frustrating to have to sit with illness first thing in the morning for so much longer. That said, I know doing so helps me to process this stuff all better from a physical standpoint at least.

I'm wondering whether or not my odd symptoms combined with worsening rash could be something related to mast cells like Mast Cell Activation Syndrome (MCAS) more than anything else. I'm playing with the idea of calling for an evaluation. Honestly, I'm avoiding it because I can't handle another doctor refusing to listen and shaming me for using medications to live a higher-quality life.

On the dental front, there are two crowns we have to do. One is on a front tooth and another is on a back molar that really doesn't function. I'm not sure that it's worth saving that tooth honestly. The cavities we've been playing catch-up with are taken care of now, thankfully. 

My acupuncturist has been incredibly helpful, getting me to unwind more than I was when I was going to a clinic for this. He's so much fun, too, and we talk a lot about sex education, impromptu consults, and more. I don't think I've ever left every single appointment with a provider with a hug and renewed peace of mind like this.

I was lucky enough to snag three free months of Talkspace back when they were giving free months out for survivors of abuse. I haven't utilized my therapist very heavily - partially because I always skirt the big things - but it's been helpful to have. She's great, only lives a few hours from me, and is incredibly similar to me in the best kinds of ways.

Over the last few weeks, we've dealt with Jaq having an upper respiratory infection for weeks (which can be fatal quickly for guinea pigs), major depression, apartment issues, increased rash, interpersonal havoc, and more. It's been a lot to handle on top of everything going on in our country and world.

Monday, December 11, 2017

The Beginner's Guide to Cannabis for Pain

background of photo is a dark background with various bokeh-style lights; a white outline is slightly inset from the corners; everything is middle-aligned; a green cannabis leaf with white text "The Beginner's Guide to" green text "CANNABIS FOR PAIN" white text "Not Standing Still's Disease"

A lot has changed for me in a year, and a lot of it comes from being more open to trying cannabis and CBD-related products for pain relief.

In December 2016, I tried high CBD edibles for the first time on a trip to Oregon. I had instant pain relief that lasted for a few days, despite traveling and dealing with flight delays. A year later, my pain levels have gone down immensely with the help of cannabis-related products like those containing CBD oil

I heavily believe that without the pain relief CBD has brought into my life, I might not be here. I was in so much pain. Do I still hurt every single day? Absolutely, but not nearly to the same levels as before. I've even gone from being essentially couch-bound to hitting the gym 4-6 days a week.


The popularity of cannabis and CBD for health has grown immensely over the last few years with increased visibility, legalization, and research on these materials. There's much more research now on the abilities of cannabis products to relieve pain, aid with immune system function, ease PTSD, and lower nausea. You can find more research here.

Organizations like the US Pain Foundation continue to share information about and advocate for medical marijuana - and the inclusion of chronic pain causing conditions. Ellen talks often about how societal stigma made her avoid cannabis for pain at first and how it's changed her life. Even Sanjay Gupta has been a vocal supporter of medical marijuana for several years.

Choosing a Method

There are many ways to partake in the legal consumption of cannabis or CBD products. A variety of companies offer items like CBD gum, capsules, vape pens, lotionsgift boxes, and more. United Patients Group has a great resource around the pros and cons of different methods.

If you are utilizing any part of the cannabis plant - psychoactive or not - medicinally, it's a great idea to track the effects. Different methods might affect you differently. For example, lotions help me immensely with my Still's rash and joint pain while vaping tends to help my PTSD and anxiety more.

Your local dispensary can be an indispensable asset. When I was in Oregon, I was able to talk through options with the staff there and choose items that fit what I was looking for - something with high CBD for chronic pain.

Before you start this journey, make sure to check the status of cannabis in your state. Note that there are many ways to take action if you'd like to help the legalization process further in your area.

More Resources

If you're looking for more information on CBD and cannabis-related resources, please check out this resource page.

Do you have questions about the use of cannabis or CBD for pain? Have a story to share? Leave a comment!

Disclaimer: This is a post sponsored by Nakturnal. All opinions in this piece remain my own and I was in no way influenced by this company or their sponsorship. All information displayed in this post is for educational purposes only and is not to be construed as medical advice or treatment for any specific person or condition. Cannabis has not been analyzed or approved by the FDA. Individual results may vary. Be aware of cannabis' legality where you live before partaking.

Friday, December 8, 2017

Legit Places to Donate This Holiday Season

purple background with black snowflakes; white circle in middle with black text "Legit Places to Donate This Holiday Season" - at bottom, black text "Not Standing Still's Disease"

With the holidays upon us, I wanted to take a moment to highlight some of the amazing organizations that I love and support as well as individuals to consider donating to. Many organizations like the Salvation Army treat LGBT+ people terribly, even kicking people out of shelters because they're transgender. Others, like the American Red Cross, don't work effectively and waste millions of donated dollars each year.

I recently discovered that Eventbrite has tools to help make fundraising a little easier. So if you're planning events for any organizations, check out their non-profit fundraising tool.

If you're looking for legitimate organizations to donate to or fundraise for, read on! 


LGBT+ and Sex Ed

The Native Youth Sexual Health Network (NYSHN) is an organization by and for Indigenous youth that works across issues of sexual and reproductive health, rights and justice throughout the United States and Canada.

In the quaint town of Pawtucket, Rhode Island sits a building with a giant walk-through vulva. The Center for Sexual Pleasure and Health works tirelessly to provide education to everyone, including continuing education for people like myself.

Heart Women and Girls is one of my favorite organizations. They focus on sexual health and education for femmes within Muslim spaces. Providing culturally-sensitive health information is something that is vastly overlooked and badly needed - and Heart does that. Donate and help them on their path to fix the world.

The Matthew Shepard Foundation came about after Matt's brutal murder in 1998. As a baby queer at the time, I've written about how Matt's story continues to push me to fight for all of us. The Foundation continues to push for better laws against hate crimes, especially for the LGBT+ community. You can donate to them here.

TSER - Trans Student Educational Resources - is a youth-led organization dedicated to transforming the educational environment for trans and gender nonconforming students through advocacy and empowerment. In addition to our focus on creating a more trans-friendly education system, our mission is to educate the public and teach trans activists how to be effective organizers. Please consider donating to help further their mission.

Founded in 2003 by trans activists, the National Center for Transgender Equality provides a powerful transgender advocacy presence in Washington, DC. After the many setbacks our community has seen this year - and the ones we fear are coming - it's important to continue supporting their work and affirming our support for them.

The Sylvia Rivera Law Project (SRLP) works to guarantee that all people are free to self-determine their gender identity and expression, regardless of income or race, and without facing harassment, discrimination, or violence. It's named after one of the trans pioneers of the LGBT rights movement, Sylvia Rivera. Please consider donating to them today.

The Tegan and Sara Foundation prides itself on fighting for economic justice, health and representation for LGBTQ girls and women. They've worked hard in their first year to establish connections and speak up about needed changes. You can learn more and support their work here.

Monstering is an independently-run, nonprofit publication that honors and uplifts voices often ignored around health, gender, and sexuality. This online zine gives space for disabled people to vocalize our most upsetting or funny stories with no judgment, no harm. Click here to support them.

KLB Research strives to create and disseminate scientific research aimed at improving health and wellbeing for individuals in romantic relationships and LGBTQ communities. You can support Dr. Blair's work and inclusive research through their Patreon or Facebook.

The Women of Color Sexual Health Network (WOCSHN) is a group of women, both domestic and international, with a focus on the sexual and reproductive health needs of women of color. The mission of this working group is to empower and include more women of color in the field of sexuality, sexology, and sexual health. Learn more about their mission here.

Health and Illness

This year was a scary one for many disabled people living in natural disaster areas. We struggle with getting adequate help, transportation, and medications. Portlight Strategies, Inc., a 501(c)(3) tax-exempt nonprofit organization, was founded in 1997 by people with disabilities, to address disability rights issues through community-organizing and capacity-building events. They were instrumental in saving the lives of many in hurricane zones this year - and they could use your support.

Invisible Disability Project (IDP), a 501 (c)(3) org, is a social/cultural movement and an educational media project that consciously disrupts “invisibility” imposed upon unseen disabilities at the intersections of race, class, gender, and sexuality. They are devoted to building human connections and self-advocacy by dismantling shame and stigma. IDP effects change through public conversations and interactive online content with the goal of creating an informed, mutually supportive community. You can help support their efforts here.

The International Pain Foundation is a great organization. They work hard to help raise awareness about various pain-causing conditions as well as providing resources and help for patients.

RA Guy has been a staple in patient communities for ages. Recently, he started his own foundation that focuses on providing education, support, and connection for arthritis patients.

The Autoinflammatory Alliance is a nonprofit organization dedicated to helping those with autoinflammatory diseases, also known as periodic fever syndromes... AKA part of what I deal with (and hate) daily.

The Systemic JIA Foundation was set up by families dealing with SJIA/Still's. The disease has taken so many from our community, both as children and adults. We have to start working towards more research and better treatments - and that's what this foundation does. Click here to learn more.

NORD - the National Organization for Rare Diseases - works with patients, providers, researchers, pharma, and more to help raise awareness and money for the many rare diseases out there (some of which aren't even on their list). You can donate to help further their cause.

Pets and Animals

Portland Guinea Pig Rescue is a volunteer group dedicated to serving the Guinea Pig community. They've done an amazing job at rescuing and taking in little piggies that need homes, urgent medical treatment, and love. They're also the only real rescue in Oregon that is able to do this work - and it's because of donations. Can you help?

Crazy Cavies is a Non-Profit 501(c)3, No Kill Guinea Pig Only Rescue that provides a temporary safe haven for abandoned, neglected and/or homeless Guinea Pigs, located in Lauderhill, FL. They do amazing work with very little, but you can help them get even better.

The Jameson Animal Rescue Ranch works hard to find permanent homes for the homeless, save animals from euthanasia, sickness, and abuse while simultaneously helping responsible pet owners keep their pets and unite seniors with forever companions. They were very instrumental in helping animals survive the North Bay fires earlier this year. Donate here.

Amigos de los Animales in Puerto Rico has taken over the work of saving and providing aid to animals on the island. There are an estimated million stray dogs and double the amount of cats living on their beaches, highways, and jungles - and even more in need of assistance and protection, especially after the hurricane. Donate today.

Politics and Relief

Don't worry - I won't go angry feminist too much right now.

Resistbot has been instrumental in helping to mobilize people to fight for their rights in the last year - especially those of us with health crud. They've been able to keep up pretty well, adding new features and making political activation even more accessible. You can help them to help us all.

With a new set of wildfires blazing across California, it's important to help fire victims in any way you can. The California Fire Foundation provides aid and support to victims. You can donate here.

The Hispanic Federation is still working hard to help people in the aftermath of the hurricane devastation in Puerto Rico. Many still don't have real access to clean water, healthier food, or medications - and the rebuilding process continues. You can help them here.


My friend Kenzie defies words. She is all at once innovative and an old soul, spontaneous and planned out, supportive and sassy. There are a million reasons I'm glad she and I are friends. Unfortunately, she's struggling a lot lately. While dealing with being a senior in college, she's juggling an ever-growing list of serious chronic health conditions. The dual hit to the bank account of being a chronically ill college student is something that's really hard to cope with. That's where we come in! You can donate to her Amazon wishlist or contribute to her fundraiser that helps train her service dog (and giant love muffin) Ophie.

Brit is another chronically ill gal. Recently, she's received a rare disease diagnosis and struggled with back-to-back hospital admissions. On top of that, she's barely able to eat. You can help get her food and supplies through her Amazon wishlist.

Struggling with undiagnosed health issues is scary, especially when they land us in emergency multiple times. Kat, who is a freaking joy to know, is dealing with just that - struggling with a high ER bill on top of needing to see specialists. You can help offset the costs she's been hit with on her GoFundMe.

Judy lives with a number of health conditions. Unfortunately, she has little help with day-to-day tasks, schooling, medications, and more. She's looking to get a service dog, but they're very expensive. Please visit her GoFundMe to learn more.

Annabel has been fighting breast cancer for over a year and recently had a second major surgery. Unfortunately, she's not covered under the Family and Medical Leave Act (FMLA) and will be out of work for two months. You can help cover the costs of her surgery and expenses via GoFundMe.

Antonina is a hard-working Haitian immigrant with 4 children. She works as a nurse to provide for her kids, but this has left her with severe damage in her knees - to the point she needs a total knee replacement on each one. With the Temporary Protected Status of Haiti being ended before August 2019, it's incredibly important to raise the money to get these surgeries as soon as possible to allow for the best possible outcomes. You can donate here.

Alex is a great reminder that healthcare isn't better in other countries - yes, even Canada sucks when you're chronically ill. They have been fighting to get an accurate diagnosis for ages. Unfortunately, that requires a series of very expensive tests that the Canadian health system won't cover. You can donate to Alex's GoFundMe or shoot them money via PayPal.

Shona, who you might remember as the author of this piece, has an outdated wheelchair. Since she is able to walk (with a metric ton of pain), the National Health System in the UK won't help her get a new one. Since she can't work, either, funds are limited to get a new chair. Please consider donating to her GoFundMe.

Emma also lives in the UK where they are ill-equipped to handle her complex medical issues. On top of chronic Lyme Disease, she endures a number of harrowing symptoms that leave her bedbound 90% of the time. Her family is raising money to help get treatment underway as the NHS isn't cutting it.

Dawn runs Spoonie Chat, a weekly Twitter chat held on Wednesdays at 8 pm Eastern that's focused on living well will a variety of chronic illnesses. She's currently working on crowdfunding her writing to help get more representation of illness out there.

Black and Brown Spoons is an online community started to help Black, Latinx, Asian, Middle Eastern, and Indigenous people with chronic illnesses get connected to information, resources, and support around healthcare and disability rights in the US. Honestly, most of us who are popular are pretty white and we don't experience the same issues the same way. They've got a Teespring page set up with great gear you can grab while helping them further this awesome mission. They have a merch giveaway that ends today, too, until 6 pm Eastern today. Check out this Twitter thread for how to enter.

Jennifer Brea has made a lot of headlines recently. As the filmmaker behind Unrest, she is challenging providers to see and believe the reality of patients living with ME/CFS. The film premiered at Sundance this year and it's gotten rave reviews (mine is coming soon!). If you want to help Jennifer and her organization raise more awareness of ME/CFS, please click here.

Bree is one of my favorite people. I can't believe I get to be on a panel with her soon! (Go to Clexacon - you won't regret it.) She's a fellow queerdo, disabled, and just hella cool. She helps remind people all the time to practice self-care and is very open about mental health, which is so very needed. You can help her through her fun Amazon wishlist, her medical one, or on Patreon.

NC Queer TROUBLMakers (Trans Revolutionaries Organizing Under Black Lives Matter) is a statewide collective of queer and trans people of color in North Carolina. We began formally working together in August of 2015, coordinating Queer and Trans Black Lives Matter demonstrations at Pride events across the state. They need additional funding to help their members pay rent and cover basic living costs. Visit their GoFundMe page to learn more.

Selfish Time

It'd be hard to write this out and not include my stuff. I'm semi-reluctantly posting links here that will help me to continue producing awesome content, going to conferences, and developing stuff to help all of us. You can donate via Patreon, PayPal, or Ko-Fi. Additionally, you could purchase something from my Amazon Wishlist.

I hope that this helps give some ideas for how to spend charity money during the holiday season and beyond.

Thursday, December 7, 2017

Why Should I Pay So Much Because I Was Abused?

teal background with stars; piggie bank in the middle with coins dropping into its slot; white text "Why Should I Pay So Much Because I Was Abused?" and "Not Standing Still's Disease"

TW: abuse, neglect

I had a dental cleaning today - my fourth that I can remember. 

I love my dentist. The whole office gets it. They've done a lot of community work for people like me who have grown up with abuse, neglect, and in poverty.

Earlier this year, we got the last crown I needed on... except that, today, Brit told me we'd need to probably do another crown on another front tooth. We've been patching it for a long time, but it's not sustainable. 

It's a tooth that has always sucked. Even when I had my baby teeth, this tooth was awful. Part of me knew this was coming. Like, especially after the one of the other side broke off last year and we had to do urgent crown stuff.

Since I thought we were done with the crowns, we dropped the insurance that covered crowns. Clearly, I should not have. It's not like we can't afford it, especially when we space out the payments and now that I'm bringing in money again.

It's more the frustration.

I will forever be paying for being a victim. There will never be a point where I'm not playing catch-up for 14 years of medical neglect and 25 years of emotional (and sometimes physical) abuse. Comparatively, I have it easy, too.

That makes me sick to my stomach, especially combined with providers who refuse to give medications that can aid with quality of life because I'm on "enough meds already."

Long story short, my neurology follow-up on Tuesday wasn't great either. The PA was much better than the neuro himself which I appreciated. Still, I get shit explained to me like "you need to focus on getting better sleep" or "skipping meals can cause migraines" and, again, "there are medications that can help with those symptoms BUT..." let's try these lifestyle things first.

I've spent most of the week roughly 75% numb across my body. It's forcing me to not work - and work out - as much.

Plus, it's a real mindfuck.

I'm tired of paying for Mother's mistakes, providers' lack of empathy, and for simply existing. It's exhausting as fuck.

Friday, November 24, 2017

Get $100 Off The Oska Pulse

Oska is running an AMAZING sale on the Oska Pulse this weekend.

Did you miss my review? Click here.

If you've been waiting for a perfect reason to snag this device, you can save $100 off the original price. Click here and enter code NSSD to save! Using this code helps me, too, since Oska is one of my affiliates.

This sale runs Friday (24th) through Monday (27th) Pacific Time. Make sure to get your order in before 11:59 PM PT Monday. Happy shopping!

Monday, November 13, 2017

Master Kirsten Has to Rest Sometimes

obligatory feet in ocean photo with white text "Master Kirsten Has to Rest Sometimes" and "Not Standing Still's Disease"

I was hoping to report more from the ACR. 

Unfortunately, after being so excited to attend, I just didn't think about how my body would cope with things. I was unable to attend the last day I was there (Tuesday) and had to go home earlier most other days as well.

I spent a lot more time in bed watching Netflix than I had anticipated. 

I was originally really upset with this when I had to head home early on Sunday. However, after getting back to my Airbnb, I realized part of why I was feeling so crummy was that my mystery WTF was hitting. There wasn't really a choice for me - I had to be in a space where I could have a lie-down and, honestly, a convention center really isn't that.

After a few hours of resting on Sunday - and a phone call from T (and the piggies!) - I wound up having the energy to go to the beach and get some food. After all, I needed to eat dinner and it was 30 degrees at home. Laying down outside would still be laying down.

glossy photo of Ocean Beach with the water reflecting the partly cloudy and sunny sky

While I stayed all day Monday, I wound up having to sit out the afternoon sessions because I was just not feeling well at all. After a quick meetup with some friends at the conference, I headed out to have dinner with a few disability justice friends.

I felt like it was the push I needed to get through the next day. However that helped emotionally, my physical body just screamed hell no Tuesday morning. It was a Netflix and rest day, rounded out well by visiting the windy and cold beach before snagging dinner with a dear friend in the area.

As much as I wished I could've attended some of the intense sessions on Tuesday - especially the one on Still's and other autoinflammatory diseases - I know that I needed to rest. It's incredibly hard to let myself do that, but it's getting more commonplace.

It also occurred to me while writing this that I never shared - I got my degree! My Masters is now hanging proudly on the wall in our short hallway. Things feel a lot lighter with that finished. I'm also grateful to have snagged two part-time jobs that will let me still work at home and around my schedule.

So, if you're looking for more updates about sessions from the ACR, I, unfortunately, don't have them. I hope to write stuff up about some of the posters and research I saw, though! It just might take a bit before those make their way up here.

I hope that you're resting as much as your mind and body need.

Monday, November 6, 2017

Macrophage Activation Syndrome Session #ACR17

square photo; background design has a blue background with beehive shapes in a tealish color; in the middle is a white circle with black text "Macrophage Activation Syndrome Session" "Not Standing Still's Disease" and "#ACR17"

This morning, I was lucky enough to attend a session all about one of my biggest fears – Macrophage Activation Syndrome (MAS).

The first thing I found interesting was that the physician who presented this session – Rayfel Schneider from the University of Toronto – believes that SJIA and AOSD are essentially a spectrum. A person may have juvenile or adult onset and present essentially the same. Newer research over the last few years from leading pediatric rheumatologists - like Dr. Alexei Grom and others - have proven through various pieces of research that SJIA more closely resembles periodic fever syndromes and is autoinflammatory rather than autoimmune.

What is MAS?

For those of you who aren’t familiar, MAS is one of the leading causes of death for people with Systemic Juvenile Idiopathic Arthritis (SJIA) or Adult Onset Still’s Disease (AOSD). This can also be a worry for people with SLE lupus or Kawasaki Disease. Otherwise, it’s rare to see MAS in conditions like other JIA subtypes, IBD, etc.

Macrophage Activation Syndrome isn’t well understood. Essentially, though, what MAS is a product of is a “highly stimulated but ineffective immune response.” This can be due to an infection or the underlying disease (SJIA, for example) itself. 

Symptoms of MAS include increased fevers, higher ferritin levels, liver issues, cytopenia (low white and/or red blood cells), coagulopathy (difficulty to form blood clots), and hepatosplenomegaly (enlargement of both liver and spleen). Additionally, lymph nodes may swell and a patient’s mental state may change. They may also experience issues in a wide range of bodily systems, including neurological (from seizures to a coma), cardiac, pulmonary, and renal. Schneider explained MAS as a hyperinflammation and cytokine storm, leading to organ damage, multisystem failure, and, potentially, death. In fact, mortality in kids sits at 8-22%. For adults, that’s about 9%. 

MAS is related to another condition – Hemophagocytic Lymphohistiocytosis (HLH). I won’t talk much about that for now, but MAS is thought to be one form of secondary HLH brought on as a part of another condition (again, SJIA). There are many types of secondary conditions like SJIA that could cause MAS, such as Epstein-Barr Virus and even some kinds of cancers. The thing I found most interesting about this was that one type of cancer Schneider pointed out was leukemia. In my personal journey, I was misdiagnosed with leukemia and given six weeks to live. It always seemed to me that my physicians had been grasping at straws to find a diagnosis, but this link makes much more sense now – especially when the majority of MAS cases present at SJIA onset. Research shows that 7-17% of SJIA patients will experience MAS. 

Recognizing and treating MAS

From a lab standpoint, the following can be considered as potential situations for MAS development:
  • Platelets 
  • WBC 
  • Hemoglobin 
  • ESR 
  • Fibrinogen 
  • Albumin 
  • Sodium

  • Ferritin 
  • CRP 
  • Transaminases 
  • LDH 
  • Triglycerides 
  • D-dimers, INR, PTT
  • Bilirubin

Only recently has there been an effort to revamp the guidelines to diagnose MAS in SJIA patients. Unfortunately, while helpful, these guidelines may not be sensitive enough. Schneider says we should also look to the AOSD diagnostic criteria to make sure we’re paying closer attention to some of these lab values and symptoms.

Schneider played with some lab values, asking providers to think about how we can diagnose MAS earlier and get a head start on treating it. Possible treatments are an IL-1 inhibitor – Anakinra/Kineret has been shown to help a lot in higher doses during MAS episodes. Steroids may need to be given in high doses initially to help get the inflammation under control. A calcineurin inhibitor, such as cyclosporine, is a great tool to add as well. 

It’s important to note that some medications – notably Ilaris and Actemra – can alter how MAS presents due to the effects of the drugs on the body. This must be kept in mind by the treating physicians in order to recognize the signs and treat MAS effectively.

New research is showing that interferon gamma (IFN╬│) plays a pivotal role in MAS, most specifically CXCL9. Additionally, this can be linked to research that shows higher levels of IL-18 in the bloodstream of SJIA patients dealing with/who have gone through MAS. Understanding the links between CXCL9 and IL-18 – and how we can lower IL-18 – will be pivotal in treating MAS in the future.


The biggest takeaway for me is that MAS doesn’t show up as quickly as I’ve always personally feared. Watching friends and other SJIA patients struggle with MAS is scary, but knowing that we may be able to monitor and predict pre-MAS status is comforting. Furthermore, knowing that my rheumatologist will be open to this information and act upon it if/as needed really helps me feel less anxious. That's part of why it's important to snag a HCP that listens as well as mine does.

My secondary takeaway is to start monitoring my own labs more. When I get home, I'll spend a while and plot my relevant labs into Excel and graph them. While it will help me keep tabs on things - especially concern over heading into MAS territory - maybe it'll help me find more data around whatever weird neuro-ish thing I've been experiencing as well. 

The world of rheumatic disease is one that's ever-changing and improving. I think it will become incredibly important to focus on changing alongside it instead of staying stuck in the old ways like many providers and patients often do.

Sunday, November 5, 2017

Opening Lecture #ACR17

white crinkly paper background; grey oval with black outline and teal text "Opening Lecture #ACR17"; teal text "Not Standing Still's Disease"

The ACR/AHRP Annual Meeting kicked off last night with an opening lecture that had me in tears a few times.

Opening Remarks

Dr. Sharad Lakhanpal, current head of the ACR, started the opening lecture off by sharing more about what's gone on in the last year for the ACR. One of the things that many may not know is that the ACR's annual meeting is the largest of its kind in the world, with over a hundred countries in attendance. ACR has started a fellowship program as well, allowing newer physicians abroad the opportunity to come to ACR in addition to spending time in American clinics seeing patients. This exchange goes both ways, too, with American physicians heading to other countries. This exchange allows providers to develop a variety of problem-solving skills, learn about cultural importance, and more.

Lakhanpal then went on to talk about ACR/AHRP's place in fighting against the repeal of the Affordable Care Act. Cue teary-eyed me in the audience. Dr. L echoed things I've always felt around the ACA - that we know it isn't perfect and aspects do need to be fixed, but that scrapping it doesn't fix anything. They truly have been fighting for their patients, reaching out just as we have. The fact that they have been using the same methods as patients to fight the same bills is comforting. We haven't been the only ones using Resistbot, social media, and more to fight for our own rights.

One of their biggest focuses for the next five years is on technology. With the amount of technology in the world growing exponentially each day, it's changed how we learn, teach, and grow as humans. Thankfully, the ACR is working to utilize technology for more. My hope is that patients will have access to some of these tools as well, making our learning process - and participation in research - even better.

Dr. L touched on the importance of viewing issues through a global lens as well. We're all in this together. The more we fight for better access to care and lower costs in one place, the more we learn about how to fight it in other areas. As a "global community of learners" and rheumatology nerds, what we do matters. I say 'we' because he also highlighted the importance of utilizing patients to improve public awareness around RMDs.

Awards were handed out to a variety of impressive providers for their efforts on research, teaching, patient care, and more.

Emerging and Re-Emerging Infectious Diseases: From AIDS to Zika

Dr. Anthony Fauci is the director of the National Institute of Allergy and Infectious Diseases (NIAID), a role he's been in since 1984. This man has testified more times before Congress than anyone else! He moved from doing more rheumatology-related work to focusing on IDs when the first cases of HIV/AIDS came about, back when they didn't know what this even would be. Fauci could see that this would be something far bigger than anyone else could predict.

As a sex educator, Fauci's talk hit me hard - in a good way. I was born at a time when we knew that HIV/AIDS was an infectious disease that could be transmitted a number of ways. Having a disease that wasn't diagnosed right away meant that I faced a lot of stigma. Rumors went around that maybe I had something like HIV/AIDS. Even before I realized I was pansexual and genderfluid, I felt so much like a part of the LGBT+ community. It's definitely not the same and I'm certainly not equating SJIA to HIV/AIDS, but there was a kinship there. It was my first exposure, too, to just how homomisic people are.

I could never understand how people could be happy about others dying due to a horrible undertreated disease - especially when it took quite a long time for many to realize this was a public health issue. I just remember so much about stigma and discrimination.

Dr. Fauci echoed those sentiments while discussing how our reactions to infectious diseases have changed massively since the early 1980s. He related some amazing stories around his interactions with past presidents. Perhaps the most surprising, to me, was George H. W. Bush. When he was Vice President, Bush seemed to share Fauci's concerns around HIV/AIDS much more than Ronald Reagan had. One of the most impactful points in Fauci's talk was him sharing how Bush asked to tour the NIAID's facilities as he was working on running for President. He came with members of his staff (including George W. Bush!) and sat in a support group for patients Fauci helped facilitate. Since this was early on and before newer medications, every single patient in that group was dead within two years.

Cue me crying for a second time.

By the time Clinton came into office, he asked Fauci to start work on a vaccine for HIV. This helped push vaccine-related research around infectious diseases further. The center built for this purpose now works on vaccine and treatment development for many conditions, from HIV/AIDS to Zika.

George W. Bush helped push forward the notion that the US could do more to fight infectious diseases - especially HIV/AIDS - in other countries. Fauci traveled to several countries in Africa and observed the realities of living with HIV/AIDS there. Patients were eager for medications and focused on taking them daily (when possible), fighting some extremely racist notions around the ability of people of color to 'adhere' to medical treatments. The only real thing that holds many back is a lack of access to medications, including costs - and that's a universal problem.

Bush and Fauci worked together, then, to develop PEPFAR - the President's Emergency Plan for AIDS Relief. To date, over 11 MILLION people have received antiretroviral medications through this program. If I recall correctly, Fauci said that over 2 million children were protected from transmission during pregnancy.

There were so many lessons to take from Dr. Fauci's talk and experience. The thing that hits me the most, though, is how far we've come - and how people work towards amazing feats while receiving very little press for it. Fauci touched upon the improvements in vaccine development. Zika vaccines in the works have been developed in a matter of a few months versus years. There's a lot of work to be done on a variety of infectious diseases, but the ways technology has allowed us to improve our processes is fascinating.

With regards to rheumatology, the biggest takeaway for me is that technology and persistence continue to push us forward to a world with better treatments. The number of patients who have helped with research and clinical trials is not lost on me, either. It's only through the sacrifices and work of our fellow patients, in addition to work from scientists and providers, that we have the treatments we rely on every single day. 

I would be remiss to not mention the many animals who have been subject to testing as well. As I reflect on what fellow patients have given to the cause, I can't even begin to quantify the number of animals who have been harmed through our scientific processes. Like, I'm sitting here in a comfortable bed and bawling because the weight of that harm is just so much. I quite literally owe my life to lab rats and mice and guinea pigs.

And people wonder why I have piggies.

four photos arranged in a square; top left is an illustration of Kirsten feeding piggies; top right is a photo of Oreo (black and white and grey piggie) with hay all over his head looking happily up at the camera; bottom left is a photo of Jaq (brown and white piggie) on the floor near a zebra striped blanket eating lettuce; bottom right is a picture of Gus (black piggie with white nose stripe) snuggling on my chest under a blue Tardis blanket

Friday, November 3, 2017

Heading to ACR

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 (where relevant). There are a number of SJIA/Still's/MAS related sessions, and I'm excited to be able to bring you news from those.

If you're in San Diego, hit me up! I leave Wednesday morning.

Monday, October 16, 2017

When The Exorcist Hits Home

a B&W photo from The Exorcist the television series shows a femme with her knees bent and arms extended over her knees, but her head is on backwards; under the photo is a grey background with black text "When The Exorcist Hits Home" with a black line under it and more black text "Not Standing Still's Disease"

Content note: discussions of abuse

I have always enjoyed media around scary things. Scary things tend to help my PTSD, but there's something more to it. It's something I've been trying to figure out how to word, but just couldn't ever fully construct the thought.

When I heard they were making a TV series about The Exorcist, I was way too excited. Season one was set around Regan, originally played by Linda Blair in the 1973 movie. You follow her story as an adult, played by Gina Davis. She has a husband and children but changed her name to avoid her mother as well as her history. Through the season, it comes out the Angela (her assumed name) is actually Regan and that's why negative things continually happen to her family. She takes on the demon who has possessed her daughter and all kinds of stuff happens. I won't say more in case you're interested in catching up.

Season two just started and it's really good. People were upset that this season wasn't focused around Regan. However, it's focused on the actual exorcists from the first season. They're battling demons, themselves, and a conspiracy within the Catholic Church.

It's all the things I love come together.

We have Playstation Vue and it has a DVR. We love it, especially me - I tend to watch more TV than T does. Regardless, I catch up on shows the next day or a few days later, so I was just watching last night's episode.

Spoilers ahoy!

About halfway through the episode, Marcus and Tomas - the two priests - visit a home where the daughter is supposedly possessed. In order to conduct an exorcism, certain things have to be found in the afflicted person. These include speaking in tongues, knowledge of the future, ridiculous strength, an aversion to holy things, and physical changes. These all have to be present.

Marcus and Tomas are debating whether or not the girl is possessed. They learn from an outsider that the girl has been ill all her life, going in and out of hospitals, but no one can figure out what's going on. This is different than the mother had stated, which then concerns Marcus. After all, why would the mother lie?

Marcus searches the house and finds a box of pills. Medications including hallucinogens are found and he's able to piece together quickly that this girl is being poisoned. The mother, it turns out, has Munchausen Syndrome by Proxy (MSP).

(More on this later.)

Marcus bursts into the girl's bedroom, pushes the mother away, and tells Harper “You are clean. You are pure.” Mrs. Graham, the mother, has been filling Harper's head with lies in addition to the medications. Mrs. G yells at both priests, telling them to leave, but they refuse. As Tomas chases after the mother (and gets a head wound), Marcus comforts Harper:

M: “You’re safe now. Do you understand?”
H: “No, I’m sick.”
M: “No. No, you’re not the sick one. Your mum’s the sick one. You’ve done nothing wrong.
H:“It hurts.”
M: “I know. I know it does, sweetheart. It’s gonna carry on hurting for a long time. You’re gonna look at other kids, other parents, and you’re gonna say 'Why me? Why can’t I have that life instead?' And then… you’ll get better. You’ll come out the other side. You’ll be stronger than you were before. Cause you will know exactly who you are. That’s what survivors do.”

The mom then bursts in.  

M: “Close your eyes and don’t open them, no matter what you hear.”

Marcus' attention constantly shifts back to Harper, comforting her when he can in between this altercation with Mrs. Graham.

The third party mentioned earlier, a social worker, has gotten the cops as she was denied entry to the home. They show up at the perfect time to help put an end to the fight. The next scene occurs in a hospital, where Marcus and Tomas are catching up.

M: "Do this long enough, you think you understand evil in all its forms, every face that it wears. Then something like this comes along. Least with a demon, you know where you stand. There’s a… purity to the design, a logic, a form. But a parent who did that to their own child… makes you wonder what the hell you’re even trying to save.”

End spoilers, begin overanalysis!

Ever since I was young, I've enjoyed things around possession and demons. Despite growing up in abuse, I still felt interested in evil. I never really understood why. I felt like there must be a reason.

As I was watching this episode, Mrs. Graham's action took me by surprise. I did not see this twist coming and was unprepared. My mother was accused of MBPS, which is part of what led to her pulling me out of school and away from healthcare providers.

A few weeks ago, T and I were catching up on one of my favorite podcasts: Wine and Crime. I had decided we should skip the episode where they cover MSP. One night, though, after listening to something else discuss the condition, I couldn't sleep. The wheels in my head were turning, focused on the odd paralells. Instead of being able to sleep, I listened to the skipped episode.

One of the reasons I like Wine and Crime is because they go through the psychology behind a condition or crime. It's done in a way that is tasteful and not full of ableism (usually). I started to understand even more about the need for attention that some people have. Mother meets many of the warning signs - craving attention and being depended upon, wanting others to see her as overly devoted and saintly, boundary issues, exaggeration, etc. 

I've thought of the odd similarities before but thought it couldn't happen because I am sick. Just because someone has some of these tendencies doesn't mean they act on them. It also doesn't mean they don't take opportunities that present themselves, either. She did not have to make me sick, but certainly enjoyed the attention around it for ages.

She begged me to apply for SSDI, despite the fact that I was not even close to bad enough, because I feel that she wanted to tell people about her disabled daughter. She always told me I'd die early, that no one would love me, etc. 

Whether she has MSP or not, the similarities are striking and telling.

Everyone needs a Marcus

I won't lie - I rewatched these scenes three or four times. I cried for a while. I made T watch when he got home, simply because it confirmed a thought I had once about why I like these kinds of shows. I needed someone to witness the feels I was having.

The truth is I could've used a Marcus a long time ago, someone to hold me and tell me that this is going to suck and hurt. Someone to tell me it was going to eventually start feeling less raw, too, would've been amazing. Who knows whether or not I would've believed a Marcus.

Still, I know this phrase would've been beneficial: "Cause you will know exactly who you are. That’s what survivors do." Hell, three years removed from contact with my mother, and this is still heavy (in a good way).

Even more, Marcus' analysis of the situation in the hospital is, for me, spot on. I am strangely comforted by the idea of evil, demons, and possession. It has a routine to it. There are rules to that world that we don't have in humanity, things that even evil won't violate.

I would feel more comfortable, surer of myself against a demon than I do against my own mother - and that's a damn shame.

Tuesday, October 10, 2017

Nortriptyline: Day 40

grey background with striped teal lines at top and bottom; 3 pills - one white and pink, one white and teal, and one white and orange - sit above pink cursive text "Nortriptyline: Day 40" sits above teal text "Not Standing Still's Disease"

I've been on nortriptyline for forty days now.

I am seeing a very slight decrease in my migraines. When I have them upon waking up, I can usually combat them with caffeine. This wasn't necessarily true before, and that's why I sought out treatment anyway.

I've found that if I don't sleep enough, that's when I tend to wake up with a migraine. It's hard for me to go back to sleep or take many naps. That makes catching up on sleep really difficult when I need some more ZZZs. 

I suppose it doesn't make it easy when I'm waking up with high pain up to five times each night, too. My alpha wave intrusions are getting worse. On top of that, since doubling my nortriptyline dose, I'm having terrible nightmares.

It certainly doesn't make me want to sleep enough if I'm waking up completely bawling at a terrible dream involving the piggies or T or my sister. Super realistic nightmares suck.

At the same time, I've picked up from a productivity standpoint. With nortriptyline being a tricyclic antidepressant, my mood has improved and I'm getting shit done. It's nice to feel like I can do things again.

Still, I don't know that having nightmares and increased nausea versus slightly more tolerable migraines is acceptable for the long-term. Maybe there's a better medication out there for me?

This is one point where I'm struggling with being an empowered patient. Perhaps it's because I had to beg to get even this medication from a paternalistic old man. Maybe it's because I've read too much about psychosis and fear withdrawal from this med. Regardless of the cause, this helps my depression but not really my migraines as much as I think something else could.

Since I'm going to ACR this year, I'm also less inclined to ask about switching medications right now. Perhaps this is something to bring up at my December 1st neurology appointment instead.

Wednesday, October 4, 2017

Matt Across America

photo of a road in the desert and Matt Iseman (with an exaggerated large head) stands wearing a suit in the left corner; the Joint Decisions logo is at top middle; a road sign has "October 4" on it with a stamp to its right featuring the FB Live symbol; at bottom is a green text box with white text and logos "Go to [FB Logo] @JointDecisionsRA" and below "[FB like symbol] to be notified when Matt goes live!"

If you've been paying attention to the Joint Decisions Facebook page this morning, you already know that there's something exciting going on! If you missed it, though, head over and check out all the lives videos with Matt Iseman being posted today on Facebook and Instagram.

In case you missed it: Janssen Biotech, Inc. and Joint Decisions are launching Matt Across America – a photo contest to raise awareness and help people understand what infusion therapy for RA is like.

Over the next few months, cardboard versions of the amazing Matt Iseman will be traveling to infusion offices across America, and we’re encouraging people with RA to share photos of their infusion day (by taking a selfie with Matt's cardboard likeness) to help patients connect with one another and see what getting an IV can really look like.

It can be scary. Before Matt started infusion therapy to treat his RA, he wasn’t sure what to expect - and he's a doctor

If you're lucky enough to snag a cardboard cut-out, here's what you do:
1. Post the selfie to Facebook and/or Instagram
2. Using #MattMeAndIV and #Contest
3. Tag @JointDecisionsRA to enter

At the end of the campaign, the lucky winner will get a meet-and-greet with Matt Iseman!

It's days like these I actually am sad that I do a shot at home for my treatment.

Matt will be LIVE throughout the day today on Joint Decisions' Facebook and Instagram pages, talking about his experience with RA. You can also learn more, print a “Matt” in case he’s not traveling to your infusion center, and see photos throughout his journey across America on the JD FB page.

Tuesday, October 3, 2017

Stop Blaming Mental Illness for Violence

kirsten with purple short hair looks sad but you only see her left eye and side of her face; a purple text box with white text: "Stop Blaming Mental Illness for Violence" and "Not Standing Still's Disease"

This post is based a bit on a Twitter rant I went on this morning. (BTW stats I'm citing can be found at NAMI, NIAMH, CDC, and SAMHSA - a post will go up on Chronic Sex tomorrow with more info.)

It's Mental Illness Awareness Week. Instead of breaking down stigmas, many of us are having to avoid media spouting ableist rhetoric. Hell, even Jimmy Kimmel's monologue from last night that's gotten so much praise is full of ableism.

Did you not recognize the ableism in that speech, or do you not care?

Parts of Kimmel's monologue last night were good. However, his rant against the lifting of an ableist bill was troubling. Why? Those of us who are mentally ill are far more likely to be killed than to kill. We are up to four times as likely to be the victim of a violent crime than to be a perpetrator of one.

As someone who is mentally ill, I am tired of people falling back on mental illness as the cause of all violence. This is especially true this week.

26% of American adults have a mental illness, and 25% of those are 'serious' - including me and my PTSD-riddled noggin. Around 70% of adults with mental illness also have a non-mental chronic illness. Living with both lead to a 4x chance that you'll die early.

Those of us within the queer or LGBTQQIA2+ community? Over twice as likely to struggle with mental health. About the same can be said for those of us with physical health issues. Mental illness race breakdown in adults:
  • 20% - white & black
  • 16% - Latinx
  • 14% - Asian
  • Nearly 30% - Native Americans & Alaskan natives

Society wants to blame us mentally ill for bullshit. They refuse to address the roles that Adverse Childhood Experiences (ACEs) or socioeconomic contributions to mental illness. They want to blame our brains for fucking up their world but refuse to address or acknowledge marginalizations that contribute to mental illnesses. 

Marginalizations lead to huge barriers in getting mental health care, including even a diagnosis (let alone treatment), Discrimination (racism, homomisia, etc), access, insurance, poverty, transportation, stigma, & language barriers all contribute to a lack of treatment.

Statistically then, those of us with a ton of marginalizations should be the ones committing violent crimes - but we're not. 95% of violence in the US isn't linked directly to mental illness. Mental health is only brought up when the offender is a white male. Otherwise, racism and Islammisia come into play. 

People need to recognize that some people just fucking suck, regardless of mental health state. As Michael Caine's Alfred said about The Joker, "Some men just want to watch the world burn." Let's take that further, too - either they want to watch the world burn or they give no fucks about anyone else but themselves. Last I checked, being a selfish asshole was not a mental illness. 

Awful human beings exist, regardless of their mental or physical health state. Being a bigot and wanting to murder people isn't a mental illness issue as much as it's a societal issue.

My mental illnesses don't make me awful any more than having short hair does.

This is supposed to be the one week where we can speak openly about stigmas we face as mentally ill people. Instead, we get to fight ableism from all sides. It's ridiculous and harmful.

Stop with the ableism and harming our communities because you don't grasp humanity's failings. All you're doing is contributing to the stigmas we're trying to fight, making it harder for us to live full lives. You're perpetuating violence against us as you promote ableist ideas.

Please just stop.