Weekly Link Roundups
If you miss my weekly link post, you can find all of them listed at once here. I will add to this each week. If I post your link and you would like me to remove it, please send me a private message.
6/29/11:
- 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.
Blog of the week: Cranquis.tumblr.com
Dr. Cranquis is a real life urgent care physician who takes time out of his busy schedule to provide tales of his daily experiences as a physician, ins and outs of medical school, various articles, as well as help people through his ask box with various concerns and questions. Dr. Cranquis won’t cease to make you laugh and there is always something new to learn by reading his stories! A very big thank you to Dr. Cranquis, as he was the person that inspired me to start blogging about my illnesses and reach out to others.
—————————
07/06/2011:
- 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.
Blog of the week: Miss Ginger Lee— full of snark, sarcasm and wit, I’ve been following this lovely woman for a while now. She battles chronic illness with a unique perspective and humor that I’ve yet to see anywhere else. :)
—————————-
07/13/2011:
- 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.
Blog of the week: RASuperbitch— This beautiful woman shared her journey through rheumatoid arthritis. Many of her posts resonated deeply with me and her story has touched hundreds in the RA/Autoimmune community. Unfortunately, she passed away this summer. My heart goes out to her husband, children, and loved ones.
——————————-
08/07/2011:
- 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, butmy doctors at the time were essentially incompetent my symptoms were not connected until this April.
Blog of the week: Naked Medicine and Smart Healthcare —Jane Chin, Ph.D explores medicine and current health care issues, patient activism and advocacy, smoking, stress, the overuse and misuse of antibiotics, you name it.
———————————
08/14/2011:
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.
Blog of the Week: Serif & Sans— Run by the lovely Miss Stephanie Sharp, an aspiring journalist with strong opinions and a unique perspective on contemporary issues. Her writing is both tasteful and profound with a unique eloquence in her words, touching on everything from Disney princesses to politics. Miss Sharp’s blog is a must-read.
———-
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
Blog of the week: Gotta Love It! — Fashion, cupcakes, love, good eats, and so much more, Gotta Love It is run by the lovely Shea, a childhood friend of mine. She shares her fashion finds for less and I love her make up reviews. Gotta love it!
—————
8/30/11
- Suicide Hotline — If you need to talk, if you need to listen, whatever you need, they are there for you 24/7, no charge. Do not hesitate to call: 1-800-273-TALK (8255)
- CFIDS/FMS Self Help Organization (C/FSHO for short)— A non-profit organization created by Dr. Bruce Campbell, a CFS patient who was a “consultant to self-help programs for chronic illness at Stanford University Medical School” prior to becoming ill. C/FSHO is dedicated to providing support groups and resources, stress management techniques, strategies to decrease sensory overload, techniques to help pace yourself and your energy, dealing with family and friends, low cost self help online courses to managing and coping with your illness, and much more. Many of the articles are relevant to a wide range of chronic illness, so do not disregard the link if you have something other than CFIDS/FMS.
- National Pain Foundation — This specific link goes directly to their Community page, linking you to a bunch of different organizations that provide support groups. Reach out to others, please. For both your body and mind. NPF also has an entire section on chronic illness and mental health.
- How To Cope With Pain — An organization dedicated to those suffering from chronic pain and their loved ones. Stress management, relaxation techniques, breathing exercises, guided imagery, and so on.
- But You Don’t Look Sick’s Bad Day/Venting Forum — exactly what it sounds like. Need a place to vent? Someone to talk to or relate to? Here you go.
———————-
09/14/11
- Advocacy For Patients — Amazing amazing resource! AFP, created by a lawyer suffering from multiple chronic conditions, offers free advice and advocacy services to those suffering from chronic illnesses, focusing on everything from health insurance to social security matters to discrimination in the work place. I am linking to AFP’s blogspot, where you will find a link to their .org site. Even if you do not need this resource now, it is a link to tuck away just in case. Such a valuable wealth of information!
- Psychology of Chronic Illness — Psychologist Nicoletta Skoufalos, Ph.D., discusses various facets of living with a chronic illness, written with the intent to serve as “thought provoking discussions.” Very interesting link for those of you interested or studying psychology or more specifically, the psychology of chronic illness/living and coping with a chronic illness.
- Lupus Family — Created by a devoted husband whose wife suffers from SLE. Lupus Family was designed to serve as a “safe haven” of sorts; a “community of support for lupus patients and their friends and families” while providing a “safe haven.” A link to send to a family member or friend who is struggling to be a care taker or on looker of your disease, or a great resource for those suffering to get an idea of what it is like to be in the opposite role— a role that is equally helpless. Geared towards Lupus, but adaptable to similar conditions.
- International Still’s Disease Foundation — The only organization I was able to come across that advocates for Still’s Disease. ISDF is a nonprofit organization that provides nearly all the information there is to be had related to Still’s Disease, from research to lab results, to support resources and the latest research. Definitely a site to keep bookmarked if you have Still’s or to send to family/friends.
————————
09/22/11
- National Scoliosis Foundation — Est. 1976, NSF is a nonprofit organization lead by patients that strives to bring patients, loved ones, physicians, together for the cause. NSF provides educational materials for patients and their families (books, video, brochures, local NSF chapters), goes to great lengths to promote public awareness and encourage research. The organization can also provide you with information on surgeons or screening programs in your area. NSF was the first resource I found years ago when I received my diagnosis of Scoliosis, and I have visited their forum regularly. I also recommend subscribing to their newsletter, The Spinal Connection, which highlights the latest in research, treatments, and awareness adventures. Older newsletters are available for pdf download, completely free. While you’re add it, make a donation by ordering a scoli-band, their Scoliosis awareness bracelet.
- iScoliosis — The most patient friendly website I have found, with excellent resources for both families and patients, especially young adults. With printable lists of questions for both parents and patients to ask their surgeons, to advice on how to discuss the emotional aspect of the condition with loved ones, to a glossary of scoliosis-related terms to be familiar with, iScoliosis is incredibly thorough. Check out their great article list, FAQ page, and doctor finder, and keep iScoliosis tucked away for reference. Also a great resource for younger adolescents to connect with and learn about others their age going through bracing or surgical treatment.
- Scoliosis Research Society — Interested in the latest clinical trials and research? Check out SRS, a highly acclaimed international society founded in 1966 that works with 1,000 leading spine surgeons and health care workers to encourage new research, treatment, and education of Scoliosis. Check out their dates for conferences and meetings near you, get involved or make a donation, read patient stories, or learn about the Global Outreach Program, which provides patients in third world countries with free scoliosis treatment!
- Scoliosis Association (UK) Helpline — A UK-based organization that has created a helpline that is open five days a week, Monday to Friday, for families or patients to call and vent, ask questions, and find support anonymously. So valuable. Check out the rest of what Scoliosis Association is all about :) and for those of us in the states, here’s the link for Scoliosis Association (U.S— actually located in Boca Raton!).
From now on I’ll just be posting links to the individual posts:
11/23/2011
11/30/2011 — November Autoimmune News/Research
12/07/2011
A 21 year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.
