This doc is moderated by K/Toyin Agbebiyi, a Black disabled femme working and organizing with chronic pain. To tip them, they are on venmo as sheabutterfemme and cashapp as $sheabutterfemme
CHRONIC PAIN MASTERDOC
A virtual guide for people living with chronic pain, from a perspective grounded in disability justice. If you add to the doc, and would like to be tipped, add your payment info at the end of your contribution.
TABLE OF CONTENTS[a][b]
This table is linked; you should be able to click on the section you want to go to and the document will “jump” to that part. If you add in a new section, please try to add it to the table! You can also view the document outline.
1. Disability Justice
1. What is disability justice?
2. What is the medical industrial complex?
3. Resources to learn more
2. Chronic Pain
1. Tips for new people
2. Chronic Pain Resources/Media
1. Books
1. Non Fiction
2. Fiction
2. Videos/Webinars
3. Articles
4. Virtual Spaces/Social Media
5. Organizations/Formations
3. Mobility Aids/Pain Hacks
1. Mobility Aids
2. Pain Tools
3. Meds
1. Over the counter
2. Prescription
4. CBD
5. Food/Feeding Yourself w/ Pain
6. General Pain Advice
4. Hacking the Medical Industrial Complex
5. Pain and Mental Health
3. Misc
4. Contributors
Disability Justice
What is disability justice?
What is the medical industrial complex?
Resources to learn more
Chronic Pain
Tips for New People
Chronic Pain Resources/Media
Books
Non Fiction
The Cancer Journals by Audre Lorde
Care Work by Leah Lakshmi Piepzna-Samarasinha
Dirty River by Leah Lakshmi Piepzna-Samarasinha
Disability Visibility edited by Alice Wong
Capitalism and Disability by Marta Russell
Decarcerating Disability by Liat Ben-Moshe
Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics by Lara Parker: Buzzfeed author and Endometrosis activist Lara Parker shares her experiences with endometriosis, pmdd, and chronic pelvic pain.
Ask Me About My Uterus by Abby Norman
What Doesn’t Kill You: A Life With Chronic Illness- Lessons from a Body in Revolt by Tessa Miller
Fiction
Videos/Webinars
https://www.youtube.com/watch?v=VzQJBF52V4A
Articles
Virtual Spaces/Social Media
Organizations/Formations
Mobility Aids/Pain Hacks
Mobility Aids
Hoka One Ones - So comfortable and good for my back
Laser-Cut Lucite Walking Sticks
Pain Tools
Trigger Point Ball
Thera Cane
Ice Packs
Heating pads
Chair Cushion
Chair Wedge
Hot Water Bottle
Medical Chair
Rael Heating Patch: Disposable heating patches that are ideal for menstrual cramps & pelvic pain when a traditional heating pad is inaccessible (travel, work, etc). Infused with Juniper Berry, Jasmine, Dandelion Root, and Rosehip to reduce bloating and inflammation.
Shower Stool
Squatty Potty: The name sounds silly but it is incredibly helpful for post surgery recovery, anyone experiencing digestive issues, and for people with pelvic pain.
* If you take opioid medication for pain/post surgery recovery, highly recommend buying one of these to avoid opioid induced constipation.
EDGE Cupping Therapy Travel Set- Alleviates muscle and joint pain, nerve pain,
swelling, pelvic pain, knee pain
Intimate Rose Pelvic Floor Wand- For endometriosis, adenomyosis, bladder
dysfunction, vaginismus
OHNUT- Stretchy buffer to customize penetration depth on penetrating partner, great for people who who experience painful penetrative sex (endometriosis, adenomyosis, can help with vaginismus)
COOP Body Pillow- I have a bunch of chronic illnesses, including endometriosis, and I often have to sleep in a supine twist to make digestion and pain easier for me. I had been waking up with back and neck pain because of all my attempts to mitigate abdomen and uterine pains. There are definitely less expensive options; this pillow has been one of my best chronic pain tool investments though.
Spoonk Acupressure Mat - Helpful for fascial and muscle pain. Can help with relaxation and sleep.
Meds
Over the Counter
Voltaren Arthritic Pain Cream
Tiger Balm Icy Hot
Quali-Patch Herbal Poultice
Moonmaid Botanicals Vital V
Salonpas Pain Relieving Patches
Prescription
Cyclobenzaprine
Meloxicam
600 Mg Ibuprofen
Combo antidepressant/anxiety & pain - Cymbalta (an SNRI) & Gabapentin
CBD
Garden of Life CBD Intensive Recovery Lotion: Includes 800 mg of CBD per bottle, Organic Ashwagandha, and Holy Basil. (on sale for $25.29 as of 4/9/21)
Kush Queen CBD Bath Bomb
RE Botanicals 200 mg Body Relief Oil: Peppermint (on sale for $10 as of
4/9/21)
RE Botanicals 500 mg Body Relief Oil: Mandarin Turmeric
Simple Solace CBD (use CODE: friendwithendo at checkout for 20% of select
products)
Food/Feeding Yourself with Pain
* If you have the means to, consider seeing a dietitian/nutritionist for nutritional guidance. Many schools and universities will offer free visits if you are on student insurance plans.
* Preparing ahead for bad pain days can make it easier when you’re overwhelmed and unsure of what to eat. This can include setting aside money for delivery apps, subscribing to a meal delivery kit service, or simply keeping meal replacement options on hand.
* Thrive Market is an online food co-op site that offers free memberships to students, teachers, veterans, first responders, and low income families. All of their shipping is carbon neutral and prices are lower compared to speciality grocery stores like Whole Foods, Fresh Market, etc.
* On my bad pain days, the thought of cooking a full meal is too exhausting. In those cases, I like to keep bottles of Soylent on hand so there’s no washing dishes, clean up, etc.
* Soylent bottles are also easy to open for people with mobility issues.
* Magnesium!! Magnesium is an essential mineral, your body needs it for over 300 cellular functions, and those of us with chronic pain are more likely to experience magnesium deficiencies. Magnesium also acts as a natural muscle relaxer.
* Your body better absorbs magnesium in liquid form; I like Garden of Life which is allergy friendly, vegan, and contains 1 billion CFU probiotics. For a more affordable option, Natural Vitality's CALM mix is great too!
General Pain Advice
Hacking the Medical Industrial Complex
Pain and Mental Health
Misc
Contributors
Layla Saliba: College student and community organizer living with endometriosis. My cash app: $LaylaSaliba
Sara Zielinski: artist/activist living with chronic pain, severe TMJ. Big believer in/constantly learning about connections between physical and psychic pains.
Thank you so much for creating this, K <3
[a]In progress, check back later lol
[b]updated for now but lmk when you want me to hop back in since I know you're still adding. love u