May 2013
13 posts
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Eye See...or Not.
So last month, remember when I mentioned my eyesight slowly worsening?
I finally got around to (read: stopped putting off. I’ve had two throacotomies and yet somehow am a big baby when it comes to having my eyes messed with) seeing the eye doctor this past Friday. But not really, because I actually walked out of the office after waiting for an hour in a waiting room with over 17 patients...
Chat is now LIVE!
Come join us!
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Live World Autoimmune Arthritis Day Chat in 30...
The chat has been moved to the WAAD Facebook Page and will go up at 10am EST, as the live site has crashed! Come chat with me about all things self love and self esteem.
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Tumblr Tuesday Messages!
I had to take the week to chill out after some family stuff, and I came back to so many messages from people who found me through Tumblr Tuesday and hundreds of new followers.
You guys are awesome. I love getting to know who reads Chronic Curve and a little about why you do, so if you haven’t already, feel free to drop me a message and introduce yourself!
Major kudos to those of you who...
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Massive influx of followers? Did you all come from Tumblr Tuesday? :)
But really, say hi, tell me who you are, why you follow, tell me a joke, whatever!
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Staying Positive With Chronic Disease
How do you stay so positive through your hard times?
Rebloggable by request after the question was posed here.
I started by redefining the word “positivity.” I used to think positivity meant obnoxious optimism and being happy all the time. I thought it meant not acknowledging the negative or being able to turn the negative off, so to speak. I thought it was something that some people...
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New Biologic Approved by the FDA for sJIA, Still's... →
A biologic called Ilaris, an Interleukin-1 (IL-1) beta inhibitor, has been approved for Systemic Juvenile Arthritis, Still’s Disease. Ilaris is already approved to treat other similar autoinflammatory diseases, such as CAPS (cryopyrin-associated period syndromes).
For those of us whose diseases best respond to IL-1 drugs (Kineret), it’s great to have another option on the market for...
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Memorial for Laura Kenyon, author of Still's...
For those of you that didn’t know Laura or of Laura’s advocacy work, please go and check out her blog, Still’s Life. She said it herself, she was a glass half full kind of girl. She was always there with snark or sarcasm, or a terrible pun to ease the pain and embarrassment of some of the symptoms patients like us go through. Despite the incredibly aggressive nature of her...
ChronicCurve.com is getting a facelift, bear with...
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World Autoimmune Arthritis Day 2013: Free...
It’s time! The second annual World Autoimmune Arthritis Day (WAAD) will be held on May 20th, 2013!
Hosted by the International Autoimmune Arthritis Movement, this year is going to be bigger and better than before— 3x the size of the 2012 event! Join those of us at IAAM and WAAD to shine a light on Autoimmune Arthritis!
What is WAAD?
WAAD is a 47-hour, global time zone, virtual...
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On the Radar for May Awareness Events! Get...
I’m baaack! Final exams are over, I moved out of my horrible apartment complex, and am home in south Florida for a little while to regroup, see doctors, and focus on May advocacy events.
Speaking of advocacy events, these should be on your radar this month:
World Autoimmune Arthritis Day! May 20, 2013— second annual WAAD! This time, it’s going to be twice the size of last...
April 2013
27 posts
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Anonymous asked: what are you finals week essentials? Chronic illness style
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Final Exam Check In: How are you guys?
Checking in! How are you guys doing? Are you hanging in there with final exams and flares?
Are any of you done with exams? Mine started yesterday— got a 92 on my first one! Only two more for me. What about you? Reach out if you’re struggling either here or on twitter with #spooniestudent.
What exams do you have coming up? How are you coping with chronic pain/chronic disease and...
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It's That Time Again: Final Exams and Chronic...
You know the drill. It’s a dreaded week and a half (or month if you start preparing in advance like some of us) for most undergraduate and graduate students, but throw a chronic illness or chronic pain into the mix and you’re in for a bumpy ride.
Gear up the tea or coffee, the pain meds, a comfortable study environment, and muster up all the strength you have!
And in case...
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Anonymous asked: Hi Emily! I saw your post on Day 7 of your Writer's Challenge and I completely agree with some of the ridiculous things people say- I've had a lot of those said to me too. I got sick during my senior year (when I was currently ranked #1 in my high school class) and one classmate had the audacity of accusing me of "faking sick to get an easy A" and keep my academic ranking. So I...
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Anonymous asked: I've been diagnosed with UCTD and am on Plaquenil. I've been having a very lupus-ish like rash on my face (photographed it for my derm/rheum to look at) but do you have any tips on telling an autoimmune rash from rosacea (which I haven't been diagnosed with)?
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yami990 asked: i hope the flare ends for you soon and that things improve.
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Anonymous asked: What illnesses do you have? You are an inspiration btw.
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uctdgirl asked: I too am up at this strange hour (though it's only 3 here, central time zone represent!). Here's my question: Do you like to create anything? Crafts, art, etc? I like to do lots of things like embroidery, knitting, crochet, drawing to keep my mind off of things when I don't feel well.
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Anonymous asked: feel better gluck ;)
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Anonymous asked: Do you have a favorite author?
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Painsomnia Means it's Q&A Time!
Since it’s 4am and pain is keeping me from sleeping, I’m going to be answering inbox questions for the next little while.
Now is a good time to submit if you need a quick response! You know, if you happen to be awake at weird hours like myself.
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Blog Break: Infection of the Year
So I have pneumonia and a sinus infection because that bacteria/fluid I had in my lung two weeks ago? Yeah, it came roaring back (thanks, immunosuppressants) and invaded not just my chest, but now my face. I am so, so, so sick and my airways are covered in lovely, green, cement-like mucous (no such thing as TMI here in the chronic illness world).
And so all posts are delayed until further notice,...
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Health Activist Writer's Month Challenge 2013: Day...
Day 14— April 14, 2013
Today’s Prompts:
Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle. Share your love.
Laura of Still’s Life. I’ve written about Laura before here on Chronic Curve. Laura’s blog was the first resource I found after receiving my own diagnosis of Still’s Disease. It wasn’t long...
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Health Activist Writer's Month Challenge 2013: Day...
Day 13— April 13, 2013
Today’s Prompt:
Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)
There are way too many conditions to write an acrostic for each one, so I will stick to autoimmune
Advocacy
Unrelenting
Tiring
Overwhelming
...
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Health Activist Writer's Month Challenge 2013: Day...
So…I skipped two days. Sorry guys :( I had a big quiz today that I’ve been studying for and it needed my undivided attention.
Now that I have some time to write, let’s get back to HAWMC! Here are today’s prompts:
Today’s Prompts:
Write about your favorite health iPhone app?
Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?
...
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Eye See...
So my eyesight has slowly been getting worse since August.
The last time I had my eyes checked they didn’t seen any active uveitis and sent me on my way. But I was still able to read street signs and whatnot.
Now I can’t read street signs at night.
Today I walked into lecture only to discover I can no longer read the board from where I normally sit…
…about three hours...
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Anonymous asked: How do you stay so positive through your hard times?
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Health Activist Writer's Month Challenge 2013: Day...
HAWMC Day 08 (April 8, 2013)
If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe?
Driving down the beautiful city limit roads of Tallahassee today with my roommate/good friend, Stephanie, I remembered today’s post. And couldn’t think of a single animal without making it into a joke.
So...
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Health Activist Writer's Month Challenge 2013: Day...
Today’s Prompts Day 07— April 7, 2013:
Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?
Share a ludicrous headline or cure. Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it. Can’t find one? Write your own.
Oh man. I...
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Health Activist Writer's Month Challenge 2013: Day...
Day 06 (April 6, 2013)— Letters
Write a letter to your condition – what do you want to get off your chest?
Dear immune system, genetic disease, autoimmune disease, and all other diseases/conditions hanging out in my body:
You have robbed me of so many things. You robbed me of my youth at 10 years old, when I had my spine fused and my first extended thoracotomy (enjoy that picture). I...
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Health Activist Writer's Month Challenge 2013: Day...
Day 5 (April 5) – Aspiration
“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible?
What’s your one, three, or five year plan for your Health Activism?
If I could do anything as a health activist/patient advocate, I would travel and speak at various conferences,...
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Keep Your Head Up: It's Not Always Pretty
I have reached the point in the semester where the bottom falls out and my health kicks my ass into the ground.
Things are so hard right now. The stress level is too high. So high that I had an anxiety attack in my sleep/dream and woke up in the midst of it (uh, who knew that could even happen?)
I am just scrambling to keep it together, and I’m not alone. You know how we do. So much...
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Health Activist Writer's Month Challenge 2013: Day...
Day 4 (April 4) – Sharing Resources
Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self advocacy!
I have actually already created a Resources page and updated it recently. There are also some superb foundations linked on my...
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Health Activist Writer's Month Challenge: Day 03
Day 03 (April 3, 2013)— Wordless Wednesday
Post a picture that symbolizes your condition and your experiences.
This was taken while in the ICU after my extended thoracotomy and full rod removal/revision surgery. I was in my first major flare, had just stopped my medications for surgery, and was in the kind of pain that makes you want to very much not be alive.
I have...
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What Are Your Nails Telling Your Rheumatologist or...
Got a great question from Not That Kind of Chronic (whose sense of humor in blog naming I quite enjoy)
Your recent post mentioned not to wear nail polish to a rheumatologist. I always have a manicure. Can you tell me what my nails might show?
The first time you see one, yes. It’s not absolutely necessary to remove your polish, but the condition of your nails can tell your rheumatologist about...
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Health Activist Writer's Month Challenge: Day 02
Day 02 (April 2, 2013)— Introductions
Today’s Prompts:
Introduce your condition(s) to other Health Activists. What are five things you want them to know about your conditions/your activism?
Share 3-5 links of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed
List my conditions? Yikes, well then:
Scoliosis— a...
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Health Activist Writer's Month Challenge 2013: Day...
Day 01 (April 1, 2013) – Getting Started!
Why you write – tell us a little bit about why you write about your health online and what got you started.
Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?
When I started writing here on Chronic Curve, I didn’t plan on...
March 2013
11 posts
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Losing the Battle, but Winning the War: Kineret,...
Had a really rough week, facial (trigeminal) nerve pain flared, Endometriosis flared, rheum flared even more— some of the worst pain I’ve ever had. So when a friend offered me a ride home for a long weekend, I knew I wanted to be home with people to take care of basic tasks since I sensed the impending chaos. Came home yesterday and chaos hit. Big shakes and chills, glands are so...
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Dr. Oz and Autoimmune Arthritis Part I: Diet and...
Earlier in the year, the Dr. Oz show profiled the mother of a son diagnosed with JIA who sought out alternative medicine to treat his disease, eventually leading to a diagnosis of Leaky Gut Syndrome. Susannah Meadows was asked to participate in the Dr. Oz show after a New York Times article, entitled The Boy With a Thorn in His Joints, was published about their story. In true Dr. Oz alarmist...
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Health Activist Writer's Month Challenge: Can You...
It’s that time of year again! Time for the Wego Health Health Activist Writer’s Month Challenge beings on April 1st, 2013. Prompts are already being sent out, so if you like to write, are a health activist, be sure to join the challenge!
Where to start?
Sign up here at Wego Health. They will email you the prompts and take your blogging/social media information
RSVP to the Health...
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Anonymous asked: I don't know if you or anyone else has information on this, but I have UCTD and it has been more or less consistent with symptoms. Recently I've developed this weird...heat sensation in my leg. It's like intense heat but not necessarily burning, and on the outside of my thigh. I'm not sure if its related at all but some people said it could be fibro. Any info would help (:
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QOTD: How Do You Treat Yourself?
Because treating yourself and indulging your makeup/nail polish addiction is completely reasonable after a week of xrays, scans, tests, pokes, prods, eye drops, and needles.
If you needed a reminder to treat yourself, this is it. Don’t neglect your mind and don’t forget to have a little fun. Answer here or join our discussion on the Chronic Curve Community Facebook Page How...
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Anonymous asked: Your nose piercing is fierce! Does that interact with your disease at all?
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mrs-shelby-licious asked: Hey! I really enjoyed your post about make up and beauty tricks for those of us with chronic illnesses. I was wondering if you have any tips or tricks for applying eye liner for someone with tremors in their hands. I've noticed my lines get shakier all the time and I can't figure out how to get a cleaner line. Thanks!
