Weekly Link Roundup 01/31/2012
My apologies for this being so late, my flare got in my way this week. Mistakes Patients Should Avoid When First Taking to the Web— An article of fof Wego Health about the do’s and don’ts of health blogging, something I’ll be elaborating on in an upcoming post. Rheumatoid Arthritis Leaves One in Three Patients Depressed and Lonely— An article that touches on the...
Perseverance is not a long race; it is many short races one after another.– Walter Elliott
January Playlist: the music that keeps me calm
Many of you have asked what music I use to escape pain or use as a coping mechanism and asked me to share my playlists. I make monthly playlists, almost as a journal entry, on my personal blog of all the songs that I listen to repeatedly that help put me in a calm state of mind. I also add a photo I’ve taken that kind of represents the whole month. I figured I would also share them here with...
I never wrote a 2012 resolution post, a recap of 2011, or anything of the sort as January 1st rolled around. It was a horrible year— the worst I could have ever imagined (and hope to never relive)— and it didn’t feel worthy of a post. But in recent weeks, I’ve realized just how unbelievably grateful I am for the nightmare that was 2011. Consider this that “new...
The Smallest of Accomplishments
It’s very rare that I have a good morning, let alone a good day. This flare since surgery in September has truly been the worst yet. But today I got up at a decent hour, put make up on, did a big grocery shopping, and managed to do all of that without pain medicine— something I haven’t been able to do frequently without the aid of pain medicine since before surgery. Granted I...
PLEASE do not buy a bracelet today until further...
EDIT: payment problems have been resolved and you will be able to order a bracelet within 2-3 days. Paypal neglected to send me a very important verification email and thus caused some issues.
Anonymous asked: Did they let you keep the metal from your back? that would make a really cool sculpture
Anonymous asked: How severe was your scoliosis curve originally? Do you have pictures?
Dr. Cranquis had some great input on that Three's...
Link to the post
Let's Be Real: New Study on Exercise and RA...
While reading this article about how a new study finds “too many RA/D patients are inactive,” I had mixed feelings about the findings and conclusions drawn from them. This study found that 40% of Rheumatoid Arthritis patients are inactive. Of the 176 patients they included in the study, 42% did not participate in moderate-to-vigorous physical activity offered in the experiment. Do I...
In the Exam Room: Three's a Crowd?
I love my mother, so much. Though it took her a while to come to terms with my limitations and accept things for what they are, she has since been an incredible part of my support system. As much as I appreciate her presence, there is one place I don’t want the company: in the doctor’s office. How many of you find it more difficult to have a third person in the exam room? How many of...
Anonymous asked: Why no weekly roundup this week?
Anonymous asked: My friend and I were just talking about how amazing your blog is <3
Anonymous asked: do you blog for mental illnesses too?
Anonymous asked: how do you deal with using a wheelchair? it's just so embarrassing and I don't know how to do it anymore
Rheumatoid Arthritis: Not the Life Sentence it...
I am constantly searching the news for the latest on anything Autoimmune Arthritis-related. On Sunday this article popped up: Rheumatoid Arthritis: Not the life sentence it used to be When I was first diagnosed by the very first rheumatologist I ever saw (you can read a bit about his incompetency here), one of the very first things he said to me was “60 years ago this would have been a...
Giving In...and using twitter
I caved. It bothers me and confuses me, but so many people have asked me so I figured I’ll give it a decent shot. twitter.com/chroniccurve Link in the top right corner icons.
What I'm Working On:
I’ve been slacking a bit, so here’s what you can expect in the next week or two: A post in response to an email suggestion I got related to apple cider vinegar Another book review and giveaway Health blogging 101 In-depth post about a link I posted recently by Dr. Rob, A Letter to Patients With Chronic Disease Patient Burn Out Weekly Link Roundup/blog of the week News Rheum...
Add That to the List
You know those lists floating around the internet, What Not to Say to Someone Who is Chronically Ill? You can add this to the list. A dear friend of mine who suffers from chronic migraines made a comment last night that really bothered me. She had only the best intentions; it was really just a lack of understanding what I live with that created the problem, but it was insulting and...
Anonymous asked: Do you ever have good days? What do you do to stay calm on bad days?
That whole catastrophic effect from missing my pills? It’s has begun. And has been further irritated by being up all night (until 8AM this morning) because a drunk neighbor (my racist neighbor. no, seriously) right outside of my window decided it would be fun to start screaming “HEY! LET’S DRIVE A PLANE INTO THE WORLD TRADE CENTER! YO!” for four and a half hours. I did...
owly asked: Can you link to the source / study that states there are more RA-related deaths than there are Lupus-related?
"RA Awareness is about medical care, not sympathy"
—Kelly Young, RA Warrior This is absolutely 100% accurate. I am not sharing my stories for sympathy, I am sharing them to help others understand the reality of living with this disease and why we need funding: better treatments, better doctor-patient communication, and a cure. $26/person in funding for Rheumatoid Arthritis. To give you an idea of how small a number that is, compare it to...
When Brain Fog Becomes a [Bigger] Problem
This is something I’ve been dealing with since before I had a diagnosis. I stopped being able to read like I used to (I was a voracious reader from the time I was in preschool), couldn’t concentrate, struggled through basic algebraic concepts in pre-calculus, had trouble memorizing large quantities of information and as a result I did horribly my first semester of college last year....
I am forever relentless and untiring. Just can’t shut me up :) But thank you for that reblog. Posting the fundraiser details tomorrow since I just hit 106 likes!
potato-bunny asked: Even if our schools are rivals I love your ideas and hope your organization/charity does really well. Your story is pretty inspirational and I see a lot of myself in it. But, of course, go gators ;)
Five likes away from 100 on facebook! If we hit...
There are over 3,000 of you here on tumblr, and even more that follow me via RSS, let’s work together! I was going to wait a week or two and get everything set up for the fundraiser before I announced it, but since there has been such an overwhelming response in the past three days… More and more FSU students are contacting me, eager to get involved (so exciting)! So please share...
Not My Priority
Recently it has been bothering me that my ability to work has been taken from me. It bothers me to hear friends that work and are also supported by their parents who get to just spend money on themselves frivolously, remembering when I was able to have that sense of independence. It bothers me to hear friends spending $20-30 on drugs regularly when I would do anything for...
Misunderstanding RA - How Much is the Media to... →
Written by CEO of the International Autoimmune Arthritis Movement, basically an article saying almost verbatim what I continue to write about all the time. A quick summary of how you can change the misconceptions: STOP referring to your JA/JRA/JIA/RA as “arthritis.” At the very least, say “autoimmune arthritis” and step out from that umbrella term Go to the companies...
Just got awesome responses from a few...
and have a huge list of people that want to help with the fundraiser in a few weeks…a fundraiser that I’ll be announcing very shortly! To be a part of the movement where you are, email me: firstname.lastname@example.org
oyakan-deactivated20120313 asked: have you posted any info on ulcerative colitis and/or chrons?
Rheuma-News: The Latest Rheumatoid Headlines
A study of patients with Rheumatoid Arthritis using muscle relaxers or neuromodulators (Lyrica) found that despite treatments and advances in RA treatments, pain is still a “significant problem.” Clearly this finding is no new revelation for patients— I’ve spoken to quite a few people who are in “remission” but still have pain. Speaking of remission, patients...
A Letter to Patients With Chronic Disease →
A Letter to Patients with Chronic Disease by primary care physician, Dr. Rob An amazing letter that helped me understand where my rheumatologist is coming from and how we can be better patients to help our doctors help us. “You scare doctors […] Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many...
You go on. You set one foot in front of the other, and if a thin voice cries...– Geraldine Brooks
Today is Not My Day
You know it’s a bad day when you can’t open your easy-off pill bottle tops to get to your pain medicine so you have to use your teeth When there are dishes all over your room because you’ve been to exhausted/weak to go stand in the kitchen and wash them I would probably pay someone to bring me ice cream or soup since my jaw hurts too much to chew solid foods (i.e. my diet of...
Anonymous asked: are there alternatives to pain medicine for RA?
Weekly Link Roundup 01/16/2012
Anti-TNF Treatment Fails to Cut Acute Coronary Risk in RA— In a Swedish study of 6,00 patients with early RA/D, patients treated with Anti-medication were no less likely to experience heart attack or cardiac problems than those not on medication. What does this mean for you? Take care of your heart and cardiovascular system to the best of your ability. RA/D patients are at an increased...
Rheumatoid Arthritis T-shirts →
thiscouldmakeyouhappy: I never really thought about this before until I read about a fibro t-shirt in this post, so I looked it up and am now extremely happy! I can’t post any pictures but there are a bunch in that link, or you can just search on Google. Some of them are funny, some informational, some encouraging. I particularly like the “I’m in a RA flare today” t-shirts because I think they...
Doctor Troubles and a Personal Update
Mayo Clinic in Jacksonville is a go. Rheumatologist back home is sending the referral letter on Tuesday. I am feeling like I’m getting close to being entirely burnt out (my next post is on patient burn-out, by the way) by the poking, prodding, and doctor shopping for physicians who don’t know what to do with me but have too big of an ego to admit it. Dear internist, Please do not...
In the process of putting together Chronic Curve's...
Please like and share the facebook page to keep up with updates on the fundraiser, which I will be announcing soon! Share the facbeook page or blog with friends and family or peers online to help get the word out. To get involved and help spread the word, spread the fundraiser and help with establishing a nonprofit organization, or learn of other ways you can help, send me a message, write on the...
philosomnia asked: I recently talked to one of my doctors about a nutrition based treatment for my mild to moderate RA. Of course, his input was minimal concerning what foods I should or shouldn't eat to prevent inflammation. However, one thing he did say to me was that a great way to look at a nutrition approach is to view food as medicine for my body, and not to get stuck in thinking about sticking to a...
avaslittlesecret: this girl tells it like it is for RAD sufferers. http://chroniccurve.tumblr.com/ Thank you! I’d love to send you a message so turn your ask box on!
Arthritis Today Magazine: Still Standing Under...
Most of those following me are probably aware by now that when I write, I write to make people think. Meaning I’m blunt, honest, and don’t sugar coat the obvious or ugly issues concerning chronic illness. I don’t write to please certain organizations or even followers (though this blog is aimed at helping others through my own experiences and resources, not everyone...
'Arthritis' Advocacy Summit April 16-18th 2012 in...
Meet with congressman and let them know that RA is not an elderly disease and needs to be taken seriously! $26/person in funding is NOT okay. Register online with the AF to attend