http://chroniccurve.tumblr.com/

Do you ever do spoonie snail mail or can we send you things?

Sun, 09 Jun 2013 00:34:00 -0400

I do! I love sending and receiving snail mail. Getting a PO box is on my to-do list. In the mean time if you’d like to do snail mail or send something, just message or email me and let me know :)

I start university in a few months, after deferring a year because of illness, and I've basically been having a massive months-long panic about it, but I've read and re-read your college and chronic illness posts, and it has really really helped me feel more prepared. Thank you so much for those posts, and for everything you do! :)

Wed, 05 Jun 2013 16:19:00 -0400

This made my day! Thank you for reading. I’m so glad they’ve helped you. You’re going to love university and it’s going to be okay, even when it seems like it’s the end of the world.

Remember that C’s get degrees, failed courses are not uncommon, and chances are there are more resources available to you than you know about.

Good luck!

Yesterday, I managed a mile and a half on the treadmill despite...

Sun, 02 Jun 2013 18:33:00 -0400

Yesterday, I managed a mile and a half on the treadmill despite being in a flare! I’m swollen and in desperate need of new running shoes, but it was 100000% worth it.

Big big big thank you to those of you who were so encouraging on twitter. It’s motivating me to get up and do it again tonight. You guys are the greatest.

I was wondering if this sounds familiar to you- for the past few days I've been having a really bad sharp stabbing pain on the left side of my head, specifically the bone behind my ear. And it's gone so bad that the top of my ear (the helix) is hurting. :( i was wondering if you've had a migraine like this before thanks!

Tue, 28 May 2013 11:56:00 -0400

I don’t get migraine pain there, but I do have jaw pain that’s similar. I would go see your primary care doctor and see what they say. It could be something simple, like clenching your teeth while you sleep.

Again, see your doctor because I’m not one!

is there a section for golfers?

Tue, 28 May 2013 11:54:00 -0400

…I think you are lost.

"If your compassion does not include yourself, it is incomplete."

Tue, 28 May 2013 06:57:41 -0400

““If your compassion does not include yourself, it is incomplete.””

- Siddhartha Gautama

Remember this today. It’s especially important for those of us in a flare. Don’t insult your body. Treat yourself with kindness. Talk to yourself with kindness. Stop calling yourself names because you have moon face or the extra 10 prednisone pounds; they are not forever. If you need to rest, rest. If you need pain meds to make it through your day, it’s okay; stop fighting it. It’s okay if you can’t get off the couch.

It’s okay if you could only manage a short walk around the block instead of a jog. It’s okay if you couldn’t get out and exercise today. It’s okay if you couldn’t eat solid foods today. It’s okay if the only thing you could do was breathe.

You’re not lazy. You’re not a lost cause. You’re not useless. You’re in a flare. There will be days kinder than this one.

Eye See...or Not.

Tue, 21 May 2013 16:36:00 -0400

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 and a lovely smell of overly-used public restroom that was making my sister and I gag. The receptionist also decided to peace out before 5pm and I left without notifying anyone.

So in short, West Boca Eye Institute will no longer be my clinic of choice and my next appointment is on June 3rd at a new, presumably better place.

Which is good because on Saturday night, for the first time, I was unable to drive myself to my destination because my sight was so poor and the lights were too bright.

I got half way to the local Barnes and Noble, flipped out in a mall parking lot, made it home, collapsed into a puddle of rage-filled tears, and officially can no longer drive at night.

I can deal with pain, needles every day, medications that make my face look like that of a chipmunk. I can even deal with the 4am prednisone cravings for brownies and my skin looking perpetually sunburnt,

but I cannot deal with autoimmune in my eyes or losing the independence of driving at night.

On that note, please keep your fingers crossed that whatever is going on with my vision is not uveitis or brain-related, and can be easily resolved with contact lenses.

Do any of you deal with blurry vision or related symptoms with your autoimmune or autoinflammatory diseases?

Chat is now LIVE!

Mon, 20 May 2013 10:08:34 -0400

Come join us!

Live World Autoimmune Arthritis Day Chat in 30 Minutes!

Mon, 20 May 2013 09:31:15 -0400

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.

Come chat with me TOMORROW at 10am EST about self Esteem and...

Sun, 19 May 2013 13:20:39 -0400

Come chat with me TOMORROW at 10am EST about self Esteem and Autoimmune Arthritis. Whether you have Lupus or IBD-related arthritis, let’s talk all things self love, self care, self esteem with disease, disability, scars, prednisone side effects, etc.

Come connect with other patients, share resources, ideas, and chat about a sensitive topic in a safe space!

Tumblr Tuesday Messages!

Sat, 18 May 2013 16:30:15 -0400

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 also sent me jokes. Tumblr is the greatest.

My inbox has over 370 messages (oops)— the goal for this summer is to answer every single one of them. I’ve read them all, I promise, and responses are coming!

Chroniccurve.com is still undergoing a facelift, so bear with any changes and a lack of proper navigation for a little while.

Massive influx of followers? Did you all come from Tumblr Tuesday? :) But really, say hi, tell me...

Tue, 14 May 2013 12:52:16 -0400

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!

Staying Positive With Chronic Disease

Sun, 12 May 2013 22:47:00 -0400

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 just had, and either you had it or you didn’t— and I sure as hell didn’t.

I was wrong. Staying positive requires hard work! Positivity (at least for me and my situation) is about being healthy mentally, making healthy and proactive choices when dealing with terribly unhealthy physical circumstances. It’s about taking the waves as they come. It’s about stopping to smell all of the roses in the garden and remembering that even when there are no roses to be found, they will bloom again. It’s about noticing and appreciating little things— finding a handicapped parking spot on campus, a good hair day.

It’s about hope.

I don’t smile all the time. I am not happy all the time. I don’t love my situation and I’d be lying if I said I wouldn’t jump at the chance to live a “normal” life. And I don’t believe in shoving that kind of optimism in the face of my readers or sugarcoating these diseases because it’s just not real when your disease(s) cause the kind of symptoms many of us experience (sometimes that kind of optimism/positivity is, quite frankly, insulting and invalidating). But this is my life and it’s going to pass me by even if I spend the next 10 years being miserable, so I choose to redefine it.

And for the record, you don’t need a life changing disease to make the choice to see the world through a fresh pair of eyes.

I surround myself with people who lift me up and make me laugh. It took a really long time to put together a support network that was the right fit and healthy, but it is imperative.

Humor (often strange and inappropriate) and laughter are the best medicine. I try to laugh at myself and my situation as often as possible. It doesn’t make it any less of an awful disease or hand of cards, but it makes it easier to deal with.

I have friends who look at it the same way. Having friends who can make inappropriate jokes about my situation— being able to laugh at things like shitting my pants in the grocery store or being called a sloth, or at a rash that makes me look like a lobster— helps me remember that everyone has something.

So I laugh about it. I also cry when I need to and do not let anyone invalidate my tears. I get depressed. I get sad. I get angry. Some days I wake up and don’t choose positivity; some days, I choose to wallow. But even when my circumstances keep me down, I hold tight to perspective that there will be kinder days, and I will pull myself above water and go smell the roses again, even if it takes a little while. And it’s okay to use a life jacket if you can’t get your head above on your own. Ask for help.

To me, that’s what positivity is. It’s a choice I make to keep a healthy perspective and be proactive, even when I am at my lowest point. It’s a lens I see the world through. It is a way of life.

New Biologic Approved by the FDA for sJIA, Still's Disease!

Sat, 11 May 2013 18:38:57 -0400

New Biologic Approved by the FDA for sJIA, Still's Disease!:

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 us now and hopefully will make it easier for insurance to cover the medication (no more off-label use). A good day for JIA!

Click to read more.

Come chat with me on May 19th-20th for World Autoimmune...

Sat, 11 May 2013 15:21:00 -0400

Come chat with me on May 19th-20th for World Autoimmune Arthritis Day!

We’re talking all things self esteem, self perception, and self love with Autoimmune Arthritis and chronic pain. From Prednisone weight gain to lose of purpose and identity, let’s chat.

Memorial for Laura Kenyon, author of Still's Life-- May 10th, 2013

Thu, 09 May 2013 00:06:00 -0400

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 disease (not to mention the comorbid conditions), she managed to remain thankful and thoughtful in the darkest of days. I know I am not alone when I say that her ability to keep that glass half full and the grace with which she endured her Still’s Disease inspired (and still does) me to get up and live regularly.

Laura’s story, though incredible, is not unheard of in the autoimmune community. She had tried biologic after biologic; Orencia, Kineret, Enbrel, you name it. She would find temporary or limited relief and eventually end up in a serious system flare, hospital bound. Finally, Laura had run out of biologics to try and her last option was a radical one: extensive chemotherapy to eradicate her existing immune system and undergo a stem cell transplant.

Laura never made it to her first chemotherapy appointment. She also never made it to her wedding. But she was the only person I know who could possibly manage to plan both a wedding and a stem cell transplant at the same time.

On May 10th, at 4pm UK time (11am EST), we will hold a memorial of sorts at the For the Love of Laura memorial Facebook page for 10 minutes. Please stop by, share a memory, share your sentiments, share a moment of silence, anything at all. Take a moment and say a prayer or kind thought for her and her loved ones— her fiance Matt especially.

If you’re an Arthritis advocate, take a moment to remember that you are helping to carry on Laura’s legacy. We as patient advocates do not just advocate for ourselves. We advocate for an entire community of people, and we advocate for those in our community that we have lost— whether we realize it or not, we carry on the legacy of the advocates before us. On May 10th, we will remember and acknowledge Laura’s advocacy.

Please reblog, retweet to spread the word and to spread her story.

Will you join us in celebration of an incredible woman who left an incredible legacy behind?

ChronicCurve.com is getting a facelift, bear with me while the site is a little strange

Wed, 08 May 2013 17:59:27 -0400

World Autoimmune Arthritis Day 2013: Free Registration! Spread Awareness and Participate from Home!

Mon, 06 May 2013 19:47:12 -0400

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 awareness convention where patients, patient experts, health care professionals, nonprofit organizations, loved ones, and supporters to come together to spread awareness and education of Autoimmune Arthritis.

How do I get involved?

On the day of the event, log on and explore!

Live Chats held by ePatient experts-- watch and participate in live chats on a variety of topics. Yours truly will be hosting a presentation and live chat on self esteem/self love, so make sure you stop by and chat with me!
Presentations by patient experts on a variety of topics, all dedicated to aiding the Autoimmune Arthritis patient.

Vendor booths
Resource Library with hundreds of patient resources and a blog list for Autoimmune Arthritis patients and their loved ones
Ask the Experts Panel-- connect with health care professionals and submit your questions
Patient Nominated Best of the Best Rheumatologists— a list compiled by patients of the best rheumatologists. Looking for a new rheumy? Stop by and check out the list. Nominate YOUR rheumatologist here!
36 nonprofit organizations will be holding booths from all over the world, from South Africa to New Zealand!
The Lounge— an open chat to connect with other WAAD attendees and Autoimmune Arthritis patients.
Check out the WAAD Android Apple app: A Day in the Life With Autoimmune Arthritis (!)
Enter the WAAD2013 Raffle and much more

What is Autoimmune Arthritis?

Autoimmune Arthritis encompasses: Rheumatoid Arthritis, Juvenile (autoimmune) Arthritis (JIA/JRA), Still’s Disease, Mixed Connective Tissue Disease, Undifferentiated Connective Tissue Disease, Lupus, Ankylosing Spondylitis, Psoriatic Arthritis, Sjogren’s Syndrome, and more.
Read more about types of Autoimmune Arthritis and other related conditions (e.g., Vasculitis, Inflammatory Bowel Disease).

How do I sign up?

Easy! Registration is completely free. Submit your name, email, and a few pieces of relevant information here.

We want to see YOU there! Reblog, retweet, follow along on Twitter, and spread the word! Will you be attending WAAD 2013?

On the Radar for May Awareness Events! Get Involved, Get Educated, Get Empowered!

Sat, 04 May 2013 14:34:00 -0400

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 year’s event! I will be giving a presentation on self esteem, self love, and autoimmune arthritis. More to come about how to register (it’s completely free!), what you can expect, and how to attend from the comfort of your couch!* Not sure what qualifies as Autoimmune Arthritis? Learn more here!
For the Love of Laura. If you don’t already know, there has been a facebook page established in Laura’s (of Still’s Life.com— you can read more about her here) memory. On May 10th, there will be a 10 minute memorial/moment of silence and Laura’s family asks that you attend the page for the event. Please stop by and share some love, a kind story, or little bit about how Laura’s blog/story reached you. More details to come.
Arthritis Awareness Month— this year’s theme is I Am the Face of Arthritis. More info soon about how to participate and what you can expect here on Chronic Curve to celebrate the month.
World Lupus Day— May 10th, 2013. Don’t forget to sign the awareness pledge!
World Ankylosing Spondylitis Day— May 4, 2013! How many of you Walked Your AS off in celebration this year?

Check back shortly for more event pages this week.

what are you finals week essentials? Chronic illness style

Tue, 30 Apr 2013 02:45:00 -0400

Ungodly amounts of Starbucks caffe mocha with extra espresso shot(s) and low fat milk
Or a white chocolate mocha
Water, twice the amount of my coffee intake at least.
Pain medication
Tylenol
Lidoderm patches
Heating pad(s)
Ice packs (Peas by CVS)
Ludens throat drops
The ultimate 90’s dance playlist
Nike dri-fit shorts and Victoria’s Secret boyfriend-fit sweats
Easy recipes, easy food options that don’t require a ton of time/work to put together (ask if you want my go-to options)
3 minute dance parties, preferably with my friends and/or roommate(s) who enjoy learning MC Hammer’s Can’t Touch This choreography
Various 8tracks playlists
When all else fails, Prednisone.

Plus my ideal study environment, which I’ve written about before :)