Please click the link and take just a moment to sign the petition, whether you have RA or not, you are part of a connected online community of sufferers and living in a nation with over 50 million Americans and approximately 300,000 kids who are affected by arthritis.
I expect every one of my followers to do this, I really do. It only takes a minute.
“If we don’t stand up for arthritis research, who will?”
According to this new study, researchers discovered that “at least least 10% of suicides in Britain are linked to terminal or chronic illness, accounting for more than 400 deaths a year,”meaning that one in ten suicides is linked to chronic illness. This does not even cover the suicide link in the US.
I’ve seen some terribly tragic and concerning posts on both tumblr and blogspot recently from chronic illness sufferers hopelessly trying to put an end to their mystery diagnoses by contemplating putting an end to their lives. It’s no surprise that the suicide rate among those who are chronically ill or living with chronic pain are higher than the average.
For those that do not suffer or do not care for those who do suffer, it is hard to understand how the concept of an end is not morbid, but a last resort for comfort— a sanctuary, in a sense. Rather than death being tragic, it is an apathetic feeling for life in pain that drives one to seek an end. But no individual, regardless of disease, should have to take their own life in order to gain control over their suffering, and there are resources out there to help you learn to take control and find yourself outside of the pain and illness.
This week’s link roundup will provide resources for those feeling like they have reached the end of their rope, and I write it in memory for RA Superbitch, who passed a few months ago from RA and other complications. I hope that everyone reading this understands that though they may not be able to cure their pain or disease, they can conquer it.They have the strength and the courage, and there are resources to help you discover it.
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.
Push yourself (or tell someone you trust that you need a push) to find a new hobby
Find a constructive outlet. Working in the community, either from your couch or in person, is a great way to fuel some of the negative energy into something positive.
Find a support group.
Start a support group.
Find a therapist who specializes in illness, or seek out a cognitive behavioral therapist who can show you specific coping mechanisms to combat the anxiety, stress, depression, and all things that come alone with your disease(s).
Consider meditation (trust me on this one). Sometimes visualizing your pain and putting yourself into a focused state of mind can help you get through a particularly painful hour.
Reach out to someone somewhere. Online, in person, a stranger or a friend— reach out. Recognizing the need for help is the first step.
PLEASE send me any other resources you know of. I am creating a kind of- “End of the Rope? Find help here” page of links for support groups, forums, and whatnot.
"Why consider emotional pain from RA? Because as most people rally around a Cancer patient to bring in meals, offer to tend the patient’s household needs, offer their condolences, prayers and round-the-clock support, the typical RA patient receives none of those things – not even close. In fact, those with RA often find themselves ridiculed and humiliated, their challenge diminished as “in their head,” or “not a big deal” because “it’s not ‘terminal,’” or because they have a friend “who runs marathons with RA…”
While it may not be terminal in the sense that it does not cause certain death (though for some people it does), it is terminal in the sense that RA is a life sentence. The same goes for SLE. That carries enough weight for me.
Tara Parker-Pope from the NY Times touche son chronic pain and the struggle to properly diagnose, treat, and understand this phenomenon. Why is it that our physicians are not educated to properly work with those suffering from chronic pain, and how can we as patients help?
"Most doctors view pain as a symptom of an underlying problem — treat the disease or the injury, and the pain goes away. But for large numbers of patients, the pain never goes away […] Chronic pain often goes untreated because most doctors haven’t been trained to understand it. And it is isolating: Family members and friends may lose patience with the constant complaints of pain sufferers. Doctors tend to throw up their hands, referring patients for psychotherapy or dismissing them as drug seekers trying to get opioids…"
"If the doctor can’t figure out what the underlying problem is, then the pain is not treated, it’s dismissed and the patient falls down the rabbit hole."
This week’s theme is pain. Not just any pain, but pelvic pain. That’s right, I’m talking about vagninismus, vulvodynia, endometriosis, IBS, internal cystitis, etc. I started having pain with sex my senior year of high school and finally received a secondary diagnosis of vulvodynia in April of this year. It is one thing I have never spoken about to anyone (other than my significant other at the time), mostly out of embarrassment and shame. There is no reason for those feelings though, and it is time to get real. Chronic pelvic pain is debilitating and most women suffer in complete silence. It’s not easy to explain or maintain a ‘normal’ social or sex life. It’s even harder to get women talking about these sensitive conditions, but is time we begin and I am ending my silence today. Keep in mind most of these links incorporate more conditions than just vulvodynia.
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 aretons 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!
I’ll be using this to alert those using facebook to new blog updates and content, as well as new jewelry creations. My latest endeavor— autoimmune awareness jewelry. Please please please like and share the page with your family and friends, as I will be posting resources for them too :) I’d also like to use the facebook as a way for followers to post what types of content they would like to see, or resources they would like to but have not been able to find. So if you have any kind of feedback, please post on the wall!
I have a bad back, bad hips, and bad knees. Obviously any type of bending is both painful and difficult, and living in a dorm made storage that wasn’t in a low cabinet or under my bed scarce. I stumbled upon this DIY project and thought it was absolutely perfect for my bathroom and eliminated having to crouch and dig under my dorm room sink for my hair stuff. Sure it requires a slight tilt at the waist, but that is nothing compared to having to bend my knees and get low.
Use hook-and-loop tape to attach 5-in. lengths of 2-in.- diameter PVC pipe to the vanity door to hold the curling irons. Do the same thing with 3-in. pieces of 1-1/2-in.-diameter pipe to hold the cords. Just measure your curling irons to see how long your “holsters” need to be. Let your curling irons cool before you stow them away.
Super simple DIY trick. Click through for the source to see other DIY bathroom storage ideas!
The handicapped parking space I choose to use is not your designated space, you obnoxious elderly woman who walks better than I do, so stop yelling at me for “stealing” your so-called designated spot.
Fatigue does not equate to simply being tired. Put fifty soaking wet duvet covers over your head and take a xanax, lose the ability to think clearly, drop bricks on your body, then raise your temperature to 102 degrees F while trying to function normally and tell me that what you’re feeling is simply being tired, because that is the only way I know how to describe fatigue.
I will say this again: your magical healing crystals will not cure me.
No, I am not sick because I do not have a close relationship with God. I am sick because of genetics and because my immune system does not function correctly.
"You don’t come off as a sick or unhappy person" — that is because A. you have only known me for about one minute, B. I have chronic illnesses that are not always visible when I am standing in front of you for less than five minutes, and C. Being sick does not mean I have to be an unhappy person.
My grandmother kept track of every book she ever read on index cards. I found them after she passed in the back of her closet. I’m doing the same thing, only I’m using a goodreads account. I’ve been reading a lot lately, so if you have any book recommendations please feel free to share :)
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.
A question for my followers: Do any of you know of any resources that discuss and provide support to women trying to maintain intimacy in a relationship while suffering from pelvic pain? A painful sex support network, if you will. If anyone knows of any valuable resources, please send them to me— thanks!
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.
Raynham, MA – (December 1, 2010) –A new study shows the SCOLISCORE™ AIS Prognostic Test, a DNA test to determine the likelihood of curve progression in children with mild adolescent idiopathic scoliosis (AIS), an abnormal curvature of the spine, is 99 percent accurate in predicting which children are least likely to progress to a severe curve (Cobb Angle of 40 degrees or more).
30 Day Invisible Illness Challenge in honor of Invisible Illness Week - September 12th-18th. Things About My Invisible Illness You May Not Know:
1. The illness I live with is: 2. I was diagnosed with it in the year: 3. But I had symptoms since: 4. The biggest adjustment I’ve had to make is: 5. Most people assume: 6. The hardest part about mornings are: 7. My favorite medical TV show is: 8. A gadget I couldn’t live without is: 9. The hardest part about nights is: 10. Each day I take __ pills & vitamins: 11. Regarding alternative treatments I: 12. If I had to choose between an invisible illness or visible I would choose: 13. Regarding working and career: 14. People would be surprised to know: 15. The hardest thing to accept about my new reality has been: 16. Something I never thought I could do with my illness that I did was: 17. The commercials about my illness: 18. Something I really miss doing since I was diagnosed is: 19. It was really hard to have to give up: 20. A new hobby I have taken up since my diagnosis is: 21. If I could have one day of feeling normal again I would: 22. My illness has taught me:: 23. Want to know a secret? One thing people say that gets under my skin is: 24. But I love it when people: 25. My favorite motto, scripture, quote that gets me through tough times is: 26. When someone is diagnosed I’d like to tell them: 27. Something that has surprised me about living with an illness is: 28. The nicest thing someone did for me when I wasn’t feeling well was: 29. I’m involved with Invisible Illness Week because: 30. The fact that you read this list makes me feel:
is incredibly frustrating. Though I understand in most circumstances why it is so difficult for doctors to communicate with each other, what I do not understand is when they do not even make the effort.
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.
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 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.
Many chronic patients who have been sick for a long time know that people have a hard time being supportive with chronic illness. You really find out who really cares about you enough to be around when things get tough. You find that people would rather blame you for it than accept that you’re…
Unbelievably accurate. Definitely a defense mechanism I’ve found myself using frequently.
It does not matter how slow you go so long as you do not stop. -- Wisdom of Confuscius
I’ve been thinking about this quote a lot lately and how important its message is to the chronically ill or in pain. What does it mean to "stop" when you have a chronic illness? And how does one accept having to slow down? Perhaps one of the most important subjects I will touch on…