Sorry for the long breaks. I’m very sick all of a sudden and recovering from major surgery, so this will be the last and first weekly link roundup for a little bit. That said, a long-awaited Weekly Link Roundup!
Pat’s Fund— “Working to solve the autoimmunity puzzle;” Pat’s Fund is an organization that advocates for autoimmune conditions by educating, increasing awareness in our society and funding research into autoimmunity— something we all know there needs to be more of. The fund was founded in 1999 after the passing of Pat Barnes from an autoimmune condition that affects blood platelets. Check out the site to learn more about where 100% of their proceeds go to and how you can get involved.
Invisible Disabilities Association— IDA is a non-profit organization that encourages and educates others on invisible disabilities and works to bring them out of the dark by connecting people and organizations together internationally. Offering everything from awareness bracelets to books and pamphlets to educate family and loved ones on what it means to have an invisible illness, IDA is one of the leading foundations advocating for hundreds of these illnesses. They also have some great projects going on: Service Animal Awareness, My Invisible Disabilities Community, among seminars with foundations, hospitals, business and support groups. Check out their site for more information and a vast amount of resources and IDA events to help you and your loved ones adjust, cope, understand, and educate others on what it means to suffer invisibly.
Empowering Caregivers— Founded in 1999, EC provides a safe-haven of sorts for caregivers of children, adults, and elderly by providing copious amounts of resources and articles, recommended reading lists, even writing exercises to help the caregiver understand and work through difficult emotions rather than letting it damage their emotional state or relationship with their loved one(s).
Working With Chronic Illness— Struggling with finding the right job knowing you have a disease that could flare at any moment? I know it’s a terrifying prospect for myself anyway. Check out WWCI, perhaps you’ll find the advice and guidance you need to handle your career and chronic illness well.
Blog of the week: Prednisone Support— exactly what it sounds like; a blog made for others to commiserate and cope with a drug that works miracles on symptoms but causes its own awful chaos. Moon face, anyone? Check it out.
I listed as many autoimmune, invisible illness, autoimmune arthritis, and RA bracelets as I could find (we all know there aren’t many). I do continue to keep looking, and have a relevant special project up my sleeve that I can’t reveal yet, but in the mean time:
Well I’ve found another one and added it to the list, so check it out!
When you have major surgery involving basically being sawed in half on two different planes of existence, (add to that a flare and a shitton of medications) your hormones will go insane. Not for everyone, but for a lot of people. I am one of those people.
I have yet to experience this myself in person, probably because I do not know anyone in real life with a chronic disease similar to mine nor do I generally socialize with the people in waiting rooms (I usually happen to be the only one over 70 there) or randomly talk about my illness, but I have been a witness to a strange type of competition between the chronically ill. And it startles me.
Whose symptoms are worse, whose labs are higher and whose kidney function is worse; whose pain is more intense. There’s this competition to prove that one’s chronic suffering is worse than the other person’s.
That is one competition I would gladly lose.
But if you sit down and analyze the phenomenon, is it really all that surprising that there is an air of competition? Perhaps competition is the wrong word; maybe the right word is desperation. A desperation to legitimize and prove that their pain, illness, suffering, deformity is in fact real. Why does this come off as a competitive stance? Because the chronically ill fight to legitimize their conditions to those that are not sick every single day. We have to convince our friends, family, and often doctors for months, years, decades, before someone takes us seriously and for many individuals it takes decades to simply get a diagnosis, all the while we have to fight to prove our suffering is legitimate. We have to prove that our pain is real even when there is no blood or wound to visualize it; to prove that we are not drug seekers when we fill prescriptions for large quantities of medication; to prove that we are not malingerers. Sometimes it is difficult to remember who we don’t have to prove ourselves to. Sometimes chronic illness creates a bitterness in one’s heart.
So the next time you encounter another chronically ill person who puts on their boxing gloves and puts up that defensive wall, try reminding them that you’re on the same team. You’re in the fight together to end the invisibility in our community and bring the sick and healthy together in education, understanding, and awareness. Let them know they can put those fists down; it’s not a competition.
If they aren’t receptive, who knows, maybe it will sink in later when they are alone and vulnerable. Or maybe not; maybe they honestly do think they have to one-up everyone else. But if that’s the case, that is one ball of negative energy I do not want any part of.
Brownies are in the oven, Valium is in my system. Hoping the lovely smell will spark my appetite. I’ve been sleeping about 17 hours a day since I saw my doctor on Tuesday. Here’s an update: First post-op doctor visit, hiccups, and the weirdest referred pain ever…
“When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something’s suffered damage and has a history it becomes more beautiful”—Barbara Bloom
Recently Dr. Phil made the statement that obesity can cause Rheumatoid Arthritis, suggesting that obesity is a risk factor for the autoimmune disease. Obviously this statement is 100% false.Thanks for the effort of hundreds of volunteers who sent letters and comments asking for correction, Dr. Phil has publicly retracted his incorrect statement and information on his blog here.
By the way, if you recently heard me discussing obesity and rheumatoid arthritis (RA), another devastatingly painful form of arthritis, on Dr. Phil or The Doctors, I actually misspoke. I meant to say obesity can complicate RA, not that it can cause RA, which is, of course, an autoimmune disorder that is systemic, affecting the whole body, not only joints, but soft and connective tissues and, in some cases, organs.
So thank you, Dr. Phil, for not only correcting incorrect information but for spreading awareness and educating those who read your blog on what autoimmune arthritis is. :)
World "Arthritis" Day 2011-- The Forgotten Majority
While I love that this movement exists, I am once again frustrated that Osteoarthritis and Autoimmune Arthritis are being lumped into the same category. It’s true that even when I explain the difference, 9/10 it is disregarded and my autoimmune disease is still misunderstood and mistaken for an elderly “naturally occurring” disease.
On October 12th, it’s World “Arthritis” Day. IAAM puts the word “arthritis” in quotations to highlight the fact that over the years the word has become a generic term for all strands of arthritis. This has led to a gross misunderstanding that ALL arthritis can be treated by over-the-counter medications or simple diet adjustments (see example below), that ALL arthritis is merely joint pain and that ALL arthritis is caused by old age, wear and tear, or injury. In fact, seven out of over 100 types of arthritis are classified as Autoimmune Arthritis diseases, which are serious, systemic diseases that involve the whole body, including organ involvement…
After reading about the campaign on the Arthritis Foundation’s website here, it is unfortunately and painfully obvious that World “Arthritis” Day is focused on OA. To quote: “Join the Arthritis Foundation community in supporting the 27 million people living with osteoarthritis.”
It seems that once again, the forgotten majority exists in silence. So as a part of the forgotten majority, it is our responsibility to step up and join IAAM in their mission. Here’s how:
Please forward/reblog along this post
Please highlight the differences between Osteoarthritis and Autoimmune Arthritis
Please advocate for your cause, write a quick blurb about what it means to have autoimmune arthritis, or post resources that explain your disease
Purchase a wristband from IAAM
Wear blue AND purple to represent all types of arthritis.
Please STAND UP and be an advocate for Autoimmune Arthritis.
Posting my personal recovery/surgery-related posts under cuts. When I’m home and better able to I’ll go back and make these easier to read. For some reason this layout requires extensive html editing and that’s too much effort for me right now ;)