- Chronicillnesscat.tumblr.com — Next to my percocet, the humor I find in this site is the best medicine to dull some pain. Being able to laugh at myself makes these diseases a little easier. Have a laugh, check out chronic illness cat!
- RaWarrior — everything you ever wanted to know about rheumatoid arthritis and chronic illness. This woman’s website is absolutely wonderful- a great resource for both families and those who are sick.
- ButYouDontLookSick — A website designed for those with chronic illness. Excellent forums with specific threads for tons of different illnesses, from chronic migraines to Lymes, Lupus to the undiagnosed. created by the author of the Spoon Theory, this website was my go-to for questions, advice, and resources to give to my friends and family.
- Chronicallyscrewed.tumblr.com — a young woman my own age suffering from ME/CFS. She has a great way with words in describing her journey that I can relate to when I can’t seem to find the words (or the ability to write them, thank you brain fog) myself. I have followed her from the very beginning and her story resonates deeply with me. She is one of very few people that I am able to have contact with that is my age experiencing very similar symptoms.
- Reach Beyond RA— The UCB RA Scholarship Program recognizes and rewards exceptional students who take control of their rheumatoid arthritis (RA) and do not allow it to control them.
- Invisible Project — The INvisible Project highlights the day-to-day experiences of pain survivors through photographs […] photographers will capture the struggles and triumphs of these brave pain survivors. […] the goal of this project is to create pain awareness, empower survivors and generate change.
- Forgetting the Pill-- Site with any kind of cute/silver/adorable/unique/plastic pill box you could possibly think of. Forgetting the Pill also sells timers, pill splitters, pill crushers, and more. Definitely will be investing in a small silver box for my purse.
- The Spoon Theory— Most of you will be familiar with this link, but some of my friends following this definitely are not (if you know me or someone else with chronic illness: read this). So, if you’re reading this or if you’ve heard me say something along the lines of “I’m out of spoons,” this is what I’m referencing. While I don’t support all of the Spoon Theory or the twinge of negativity it holds (in my opinion), it definitely helpful in explaining my energy level and restrictions.
- KevinMD — Social Media’s Leading Physician Voice; A link for my followers interested in science, medicine, new breakthroughs in the medical world, health care, and heartfelt true stories and articles written by different physicians. I lovelovelove this blog and learn quite a bit from reading it.
- Warrior4JRA- Jordan’s Story — Jordan is an 8 year old RA Warrior battling Juvenile Rheumatoid Arthritis with bravery most children have no understanding of. Follow her journey through childhood with a chronic illness— she’s a special girl :)
- Ra Warrior’s Methotrexate Index— Since I’ve had such a large amount of MTX-related questions: articles that examine all aspects of methotrexate: FAQ, side effects, folic acid, injections, etc. A great place with easy-to-read content for those of you with questions.
- Hand Exercises for RA Sufferers — On good days when my pain isn’t so bad, I try to do these simple exercises to maintain range of motion in my hands. This link provides a slide show of images to show you exactly how to perform the simple exercises correctly. The Arthritis Foundation will also send you a free booklet with simple range of motion exercises if requested.
- Aidsforarthritis— Awesome awesome resource for various products to help people with arthritis or other physical disabilities. AFA sells everything from devices to help turn door handles to kitchenware to a tool that makes putting on jewelry easier. Definitely a great resource.
- The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities Chronic Pain, and Illness— Written by Miriam Kaufman, Fran Odette and Cory Silverberg, The Ultimate Guide to Sex and Disability touches on topics from sexual self image to fatigue, even encompasses the subject of sex toys (and much much more). Definitely a book to check out regardless of your age, gender, or disability/illness, and a great tool for partners of chronically ill individuals to read. A must for struggling couples.
- Relax the Back— This company provides aids to ease and eliminate back and neck pain in the car, in the office, or simply lounging at home. Everything from physical therapy aids to ergonomic chairs. A site to consider if you have degenerative disc disease, scoliosis, AS (anklosing spondylitis), or RA just to name a few. What I would do for a tempur-pedic mattress…
- Migraine Triggers: Identifying and Managing— I’ve suffered from debilitating migraines since I was a sophomore in high school. They have gone through phases of intensity since I was fifteen, and only this year did I learn exactly what triggers and worsens my migraines. This helpful article on Migraine.com addresses common triggers, how to identify them, and how to manage them. Oh, and just a quick fact: migraines are associated with inflammation in rheumatoid arthritis patients. My migraines were one of the first signs that something was wrong, but
my doctors at the time were essentially incompetentmy symptoms were not connected until this April.
An Endometriosis/Pelvic Pain-related roundup this week!
- Uncommon Manifestations: Sciatic and Thoracic Endometriosis— an article on Endosupp about the lack of awareness of these rare endo forms, their history, treatment, and clinical signs and symptoms. If you have endometriosis in your family, suspect you have endometriosis, or have a doctor who refuses to listen to specific symptoms pointing to SE or TE, please please please seek out a second opinion. As unfortunate as it may be, sometimes the physician must be educated as well. Doctors can learn a lot from an informed patient. Be your own advocate.
- Endometriosis Support Forum on HysterSisters—HysterSisters is a site dedicated to women suffering from gynecological conditions and recovering from surgery, specifically hysterectomies. This Endometriosis Support forum includes over 101 pages of threads
- EndoCenter— Endocenter is an organization that “addresses the ever-growing need for Endometriosis research, education, awareness and support on a global basis.” A great resource and database for latest endo news. Endocenter lists multiple contacts and websites for both online and in-person support groups, as well as volunteer and awareness opportunities. You can also request EC materials from the organization as well. Better yet, their headquarters is here in south FL :)
- TalkAboutEndo— A tumblr very similar in concept to Chronic Curve, only dedicated specifically to Endometriosis awareness. Straight, simple, and to the point— Talk About Endo provides endo facts, news, research, an honest place to discuss this painful disease, and most importantly, hope.
Weekly Links 08/23/2011
- Vulvar Pain Foundation — The VP Foundation will send you a newsletter keeping you updated on the latest treatments, seminars and workshops, specialists, and research. Advocate and educate, ladies. It’s time to stop being ashamed of your vagina. That’s right, I said it.
- Vulval Pain Society— A resource I myself sought out when I was first diagnosed, VPS “is a confidential service for women who suffer from vulval pain due to vestibulodynia and vulvodynia.” Providing a VPS handbook, support groups, treatment options, self help for both the afflicted and their partner(s), and possibly my favourite addition to their website: Smears Without Tears: A patient’s guide on how to get through your speculum exam with minimal suffering and your dignity intact. Definitely keep VPS in mind when looking for help and hope— it’s out there!
- Life With Vulvodynia— A personal take on life with pelvic pain, from this lovely woman’s sex life to nursing school. As she says “It can get better. There is hope.” You are not alone.
- Vulvodynia Matters — A Boston-based nonprofit organization dedicated to helping women overcome the pain and isolation of vulvodynia. VM provides resources„ information, a link to other pelvic-pain related blogs and online support forums, and the latest news about chronic pelvic pain. There are tons of volunteer opportunities to get involved in and plenty of events posted on this site, especially if you live in the Boston area. I knew I loved this organization as soon as I saw the quote on their home page:
“If there’s an elephant in the room, introduce it.”
—Randy Pausch, The Last Lecture