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.