There is a devastating problem in the world of Autoimmune Arthritis that inhibits us from receiving the care, validation, and funding that we so desperately need.

For those of us with diseases like Lupus, Ankylosing Spondylitis, Still’s Disease, etc, we have a name. While our name might not get the awareness it needs, it has a unique name of its own.  It is not confused with another condition due to name alone. It does not suggest elderly, doesn’t bring about thoughts of Tylenol or old-age, or advertisements of seniors dancing.

Those diseases with unique names? They have individual organizations, both national and international, that help patients and have been for years. But Rheumatoid Arthritis? The first and only US organization just established itself this year (which you can learn more about here), despite 1-3% of women, over 300,000 children, and over 2 million people overall in the US being afflicted by this autoimmune disease.  

Those of us with Rheumatoid Arthritis, Juvenile Arthritis, Juvenile Idiopathic Arthritis, and Juvenile Rheumatoid Arthritis (which, truthfully, hardly vary in etiology whatsoever) are left in the dark. We are lumped together under the A word by organizations (and patients!!) that lump us together and, like dust swept under the rug, our symptoms are swept aside and pushed far up underneath that umbrella until no one realizes just how dangerous and serious these conditions are.
 

I have come to despise the A-word. But more than I despise the A-word, I despise seeing fellow bloggers and tumblr users using the A-word. It is time to stop using the A-word improperly!
 

You know what A-word I’m talking about: ARTHRITIS.
 

1. “Arthritis” IS NOT Autoimmune Arthritis, so when you say “let’s fight Arthritis together,” you are not reclaiming your disease.
   
    
2. Using the A word does not help others understand the seriousness of your disease or become aware and more knowledgeable about autoimmunity.  
    
    
3. Why is this important? People are not going to donate their time or money to “arthritis” when you can just take Tylenol and Glucosamine supplements! People will, however, be inclined to donate to 2 year old’s who have gone blind from RA-related uveitis, 20 year old’s who are losing their hair and who have damaged organs, 15 year old’s purchasing a new wheelchair after losing the ability to walk, 30 year old’s struggling to afford monthly infusions of $3,000+ drugs. Does this sound like “arthritis” to you? I don’t think so.
   
    
4. Arthritis is a condition. Autoimmune Arthritis is a disease. Believe it or not, there is a difference. Arthritis is a condition caused by wear and tear and is typically associated with aging. While OA can be extremely painful and disabling, Autoimmune Arthritis is a whole different ballpark of disabling.  Autoimmune Arthritis is caused by a malfunctioning immune system. It is a disease that cannot be treated with OTC medications alone or left untreated without serious damage, even death. 
   
    
5. Patients Deserve Validation. We are not enduring infusions, injections, low dose chemotherapy medications, surgeries, and long term suffering because of a relatively benign condition; we are enduring these things to avoid the consequences of diseases that left untreated are often fatal. The fear of the C word should be the same fear one feels when they hear Autoimmune Arthritis. It is equally devastating and very much incurable.

Join World Autoimmune Arthritis Day, reblog this post, share it on your Facebook wall, share it with friends and family members, make a donation or buy a bracelet, be the change you wish to see and demand better health care.

Take the pledge: 

I am important
My health is important
This disease is important
And as my disease is invisible and misunderstood to nearly all that I know,
It is my responsibility to help bring it to light.

My weekend away is over, but I am still feeling frustrated and struggling to post here…

And here’s why:

1. I’m exhausted mentally and physically. The last month of exams, papers, not being on any biologic medication, awful weather and a seven hour drive home  has really caught up with me. I did nothing this weekend other than watch episodes of Long Island Medium, sleep, cuddle with my dog, spend time with loved ones, and cover myself in ice packs. I don’t plan on doing much else until after I see my rheumatologist this week. My phone has been dead for a day and a half and my computer has been out of reach— I am enjoying the quiet time.
   
    
2. I have three doctor appointments coming up: rheumatologist, spine surgeon (finally figuring out what is going on with that “abscess” nonsense I mentioned a month or so ago…talk about delayed), and my favourite kind of appointment: obgyn. All of these within 14 days is like running the marathon of all marathons, so I am both distracted and taking it easy.
   
    
3. There is a blogger who is basically duplicating a large majority of my posts (but switching up the disease(s) I write about with a name of another condition) and blog, and has copyrighted it as their own content. As a result, a large number of readers have been messaging me about it.
   
   

I work hard to make this website into something helpful for others, whether someone is reading to understand a chronically ill friend or their own chronic illness.  I put my energy into sharing information I find useful, scientific breakthroughs, news and research, and spend much of my time shipping out orders and fundraising.

Making the lives of Autoimmune Arthritis patients better, making a difference, and doing my part to spread awareness is where my heart is and where my passion is. So, when someone else does not know how to use the “reblog” button and add their own feedback or write an original post, it frustrates me. It makes me sad, because it is no longer about the content getting to people that it might help, it’s about someone needing to put a stamp on it that they have no right to. Seeing this when I log in makes me immediately lose any desire to post and I end up logging out. Adding frustration to brain fog = no cohesive posts.

And this is why I may be extending my little break. If I end up being able to put some posts together in the next week, great! If not, there’s a queue of reblogs anyway. Bracelet orders, emails, and asks will finally be responded to today, so if you haven’t heard from me yet, you will.

The giveaway will be posted this week. Sorry for the delay.

Thank you so much to everyone who has ordered in the past two weeks, sent kind words of encouragement, and who has exercised patience and understanding with me :)

It is very much appreciated! 

As promised, even more peculiar, funny, tragic, satisfying, and terrifying searches that lead people from google to Chronic Curve:

• Make arm pin cushion (ouch)
• Mayo Clinic assholes (ha!)
• Mayo Clinic exhaustion
• Mayo Clinic fired me
• Mayo Clinic who am i? (I don’t know, who are you?)
• Most expensive pen at office max
• my boobs are awkward (I’m sorry?)
• my gi doctor is incompetent
• people who actually speak the truth and not r a fake
• pin cushion breasts (wtf?)
• sorry i’m not as interesting as you though
• THE chronic curve (emphasis on THE)
• unhappy leap year birthdays
• what diseases can you fake
• what if you take a pain killer when you are not in pain?

And my two favourites of the night:

• why are doctors so bad at treating chronic illness
• zero negative arthritis

Stay tuned for Part IV of crazy common Chronic Curve searches.
- Part I
- Part II 

• I kicked ass (by my new standards) on my exams and know for sure that I aced two of the five I’ve had in the past two weeks. 
   
• But now a lack of sleep and brain strain is kicking my ass.
   
• I broke most of my study rules in one day. I’ve had nothing but a grilled cheese, a few oreos, rice cakes and coffee for the past 24 hours (not all at once). I like to think I balanced this awful finals-food problem by eating fruit every day of the week for breakfast. 
  
   
• I also studied nonstop from midnight to five in the morning for a 7am exam and was near delirious by exam time. So much so that I tried to use my apartment keys to unlock my car door and requested the wrong exam (make up final for whatever exam one missed during the term) and started taking it before I realized it was the same exam I took a week ago…
  
   
• April brought on a whole new level of flare, including what feels like nerve impingement in my neck. Which means a possible MRI if I bring it up to my doctor, which I should because I know what nerve impingement feels like and know better than to ignore it, but MRI’s give me panic attacks of epic proportions and they refuse to sedate 20 year old’s (yet they get incredibly frustrated with me when I get hysterical and can’t complete the scan. Hmm…)
   
• I managed to catch a normal person virus this week. I have a cold. It sucks, the end.
  
  
• I see Rheumy Dr. S on May 7th andshould be starting Remicade (finally) ASAP.
  
  
• My email inbox and ask box are overflowing, bracelet orders are late, and I promise once I’m alive again I’ll catch up. Thanks for so much patience and understanding!
  
  
  
• I am so proud of myself for getting through this semester with pretty decent grades when everyone around me insisted I was making a mistake and that I couldn’t do it. Guess what? I did it. I started this semester a nervous wreck, heartbroken and struggling having to resign myself to the fact that medical school was no longer an option for me. But I ended it calmer and less stressed than ever before with some awesome new people in my life and some steady footing career-wise. The flares, nosebleeds, migraines, existential break downs over my existence— it was anything but easy, but it was worth it.

I’ll be heading seven hours south tomorrow and plan on spending the weekend doing absolutely nothing other than watching mindless television and sleeping, so this is me taking a little weekend vaca from blogging (though there are two posts queued?). I will get some emails answered and orders sent out shortly. 

Have a lovely weekend and for those of you finishing up finals— take care of yourself!

—E.

June Edit: for the time being, the neck issue resolved itself! :)

• You’re up all night in pain, so when you finally crash you sleep until 3 in the afternoon on your day off…the day you needed to spend studying.
  
  
  
• All of your written/textbook course materials are in your car, but you’re too miserable to put pants on, go out to your car, and force yourself to walk (no pants > final exam prep).
  
  
  
• Dried laundry sits in your dryer for three days because it’s so obnoxious and painful to bend over, take it out, and carry it to your room.

As promised, more peculiar, funny, tragic, satisfying, and terrifying searches that lead people from google to Chronic Curve:

Once again anything inside parentheses is my commentary. Punctuation and spelling is exactly as searched ;)
 

• Got bold spots when lifting
• hey hey my my tumblr emily
• hobbies that take up time
• hopeless romantic pearl swag bracelet
• how can I be as responsible as possible taking narcotic medication (made me smile)
• how does the spring in a pen work?
• how to explain to doc you lost narcotic medication
• how is vicodin not banned?
• how to fake an illness
• how to fake pain to get pain killers (Really, this is what you use my website for?)
• how to find doctor shoppers
• how to give myself any ailment

These made me laugh:

• i do not fake illness
• i do not understand online relationships
• i don’t get leap year
• i have become incompetent (oh, boy…)
• i have weird hairs in my scalp (yes, yes you do)
• idiots addicted to pain killers 

And I leave you with:

• krispykreme lessons learned

Stay tuned for Part III of crazy common Chronic Curve searches.
-Check out Part I!

Examining Google Analytics. Apparently people are searching this stuff on google to get to me:

Here are a few of today’s searches: 

1. DIY cure your rheum arthritis
2. Internet medical advice does harm
3. My body is beautiful
4. What is the best pain killer for curve in spine
5. Don’t use narcotics for pain
6. How to fake an illness— (I see you over there in Melbourne.)

Now for some interesting searches from the past month with my commentary in parentheses:

1. Can doctor check if you are doctor shopping
2. I speak reason
3. Paranoid coming off pain meds
4. Can chronically ill students get extended deadlines at uni (the answer is yes)
5. Does RA cause your ears to hurt? (also yes)
6. Fake online relationship (…)
7. Menthol free lozenges (I’m not the only one!)
8. Rheumatoid Arthritis support group Tallahassee (contact me!)
9. What does painkillers do if you dont need them (seriously…)
10. A person who thanks they have all illenesses (I can’t even)
11. Akward boobs (REALLY?)
12. Alaska sun fake (go away)
13. Beautiful tumblr lessons (aw)
14. Birthday gift for people with weak arms
15. buy chronic pain killer (I swear you people are trying to kill me)
16. Can a person fake a swollen leg?
17. Can going to four doctors for same medication be considered doctor shopping?
18. Can I get a guy with scoliosis scars (yes!!)
19. Can u SPOKE pain killers?
20. Can u fake illness to a doctor?
21. Can u slam lidocane
22. Come to my bed
23. Crohn’s fake diseases

I sat with my head in my hands for a few minutes once I hit 19.

Searches for F have their own category. Can anyone guess why?

1. Fake an illness
2. Fake disease bloggers
3. Fake illness blogger
4. Fake illness bloggers on tumblr
5. Fake illness blogs
6. Fake illness for a medical note
7. Fake internet relationship
8. Fakers on the internet
9. Faking illness online

So, I have found entertainment for tonight, fuel for new posts, and will be answering some questions that keep popping up via search. Hope some of these gave you a laugh. I’ll be queueing up these as a series of posts throughout the week :) Gonna go spoke some pain killers and slam some lidocane, guys. Have a lovely evening.
 

Stay tuned for the next round of CC Common Searches. 

My stat. professor decided to give out a four question final. That’s it. Four questions, each 20% of the exam, which is worth ~30-40% of our cumulative grade. 

Since my professor is too lazy to put together a legitimate exam, I’ve decided that I’m not spending any more time forcing my aching self to sit in this chair learning. Six hours is plenty, I can feel a migraine in the distance, and my pain killer is long gone by now. My pain level is slowly approaching a 7, which is when my productivity hits 0.

If I fail this class, I fail this class. I will re-take it, do well, and I’ll be just fine.

I am not stressing tonight! Good luck to everyone else enduring exams throughout the next few weeks!

Thanks to the  always inspiring International Autoimmune Arthritis Movement, those of us with Autoimmune Arthritis now have a day to spread awareness.

In October, we rallied up for World Arthritis Day. Blue was the color; Osteoarthritis the focus. While there is nothing wrong with fighting OA and wearing blue proudly, we were stuck underneath that umbrella as per usual.

But not this year. This day, we’re putting our umbrellas away rain or shine. Our colors are blue and purple, and we will make them seen.

What is World Autoimmune Arthritis Day?

• A 47-hour ONLINE international awareness event

What events are being held?

• Online presentations hosted by Autoimmune Arthritis community leaders and activists
  
  
• Interact with presenters and chat in groups with others participating
  
  
• Participate in polls and surveys, which help various organizations help patients
  
  
• Participate in WAAM’s Call to Action awareness posts
  
  
• Visit vendor booths— awareness gear: bracelets, pins, shirts, you name it. Yours truly and her bracelets will be there ;)

How do I get information and get involved?

• To participate in these events, register for free here online.
  
  
• Why register? Registering allows you to receive notification of the official WAAD schedule, programs, organizations that will be involved, vendor discounts, and a chance to submit your story to be featured during the day!
  
  
• Simple: just include your name, email, and type of Autoimmune Arthritis— nothing more!
  
  

What diseases fall under the AA name?

• Lupus, Rheumatoid Arthritis, Juvenile Arthritis (JI/RA), Still’s Disease, Psoriatic Arthritis, Sjogren’s Syndrome, Ankylosing Spondylitis, and Undifferentiated/Mixed Connected Tissue Disease

Band together for Autoimmune Arthritis,

In light of some messages I’ve gotten in the past few days:

• Yes, there is a popular blogger on here who is taking my posts, trying unsuccessfully to make them seem like original material, and is posting them rather than just rebloging and sharing their ideas.

I have written about the Chronically Ill Blogger before- do’s and don’t’s for appropriate blogger manners, but perhaps we all need a reminder:

If you write a post about remission, for example, and you know it already exists over here (title and all), either write something different (i.e., not the same content…) or just reblog it and add your feedback with your reblog!

Remember this:

Real health activists want to share information regardless of source; those who have to have their name attached to everything are in it for other reasons and value their own person reputation more than the ultimate goal: advocating for patients everywhere.

The likelihood of me continuing with tumblr is not looking good, readers.

I have been struggling with whether or not to upgrade this site or move to a new blog host altogether.

I love that my readers can follow this blog so easily and my posts show up on your dash. I love the diverse audience of people that come through here. I love how Tumblr works, but as this blog has grownmuch larger and into something more dynamic, I find that I am slowly outgrowing Tumblr.

The customization options and menu on Tumblr are terrible. Using any kind of html is beyond obnoxious with their new and “improved” sidebar; limiting me in what I can do with Chronic Curve. My actual text posts are always screwed up after I post them: the spacing is off, my words are randomly un-bolded or un-italicized and it takes me three or four tries to get the text to format properly (this is a new phenomenon in the last few weeks). I hate that there are character limits in the ask boxes and this whole Missing E crap. I’ve had issues getting various ads on my sidebar and widgets for the Chronic Curve store don’t work. Overall, I’m just unhappy with Tumblr.

I’ll be giving this site a make-over today, since it is my self-proclaimed 24-hour long study break (the first in two weeks). The site will likely be a mess for the next few hours. Depending on how it goes, I may be using a new blog host come summer. We shall see…

What are your thoughts on Tumblr as a platform for more serious blogging endeavors? Are you frustrated by their recent upgrades and changes?

Today marks my autoimmune anniversary— the one year mark of my diagnoses.

Rather than this being a grim reminder of the difficult year I’ve had, I’m celebrating making it through such a hard year. Celebrating making it through with more reasons to smile and more strength than I started the year with, celebrating the opportunities I’ve created and found through this, the people that I have met and spoken to all over the world, celebrating the organizations that I have established connections with, celebrating going back to university after a surgery that got me nicknamed “the woman cut in half.”

Most importantly, I’m celebrating my love for life and the people in it, despite disease and disability.

So, to share some of this love with you, I’m doing a giveaway! As always, like the Facebook page to be eligible to win. I will announce the winner on Friday, April 27th (after the chaos of my final exams has passed!).

What you can win:

A pair of The Leighton Pearl earrings: custom made, wire-wrapped Swarovski pearl earrings with sterling silver findings (value: $16 + shipping). Pearls come in light blue, light pink, and white (as pictured below).

A Cure Rheumatoid Arthritis silicone bracelet. I will be donating $5 of my own money in place of this bracelet.

There is also a Mother’s Day sale at The Leighton Pearl right now! 10% off all jewelry. Support a fellow chronic-blogger and buy your lovely mother, sister, grandmother, whomever a gorgeous, hand made, one of a kind keepsake. Coupon code: mothersday1

Things to remember during finals month when you are a chronically ill college student:
      

1. Start early. Start at least a week before your finals week. Plan out small academic tasks to complete (or try to complete) each day. Splitting up your studying/workload will prevent cramming. You do not want to be forced to cram on the same day that your body decides to give you an extra dose of awful.
   
   
2. Now is not the time to ignore your body’s needs. It’s really easy to eat microwavable meals, fast food, and drink nothing but caffeinated beverages to get through the week. It’s also easy to forget to eat and stay hydrated, but your body needs you to. Eat for energy. When you take a study break, cook yourself a decent meal (or buy one, whatever) ahead of time— protein! Nutrients! Eat something healthy and stay hydrated— drink some water between espresso shots. Avoid foods that will upset your stomach or trigger any kind of GI symptoms or exacerbate GI-related conditions.
   
   
3. All-nighters are the enemy. Do you get a lot done? Sure. But will you exacerbate your symptoms or bring on a flare? Very possible. So do the benefits of an all-nighter (or three…) outweigh the costs? I don’t think so, if you’re no longer able to function through the rest of your finals week because you started it off with no sleep, especially for those of us that need more rest than the typical, healthy college student. If you spend a large portion of your day studying, turn it off at 10pm. Get in bed, spend an hour doing something mindless, and go to sleep. Your body will thank you for it.
   
   
4. Give yourself a break. Yes, finals are stressful for everyone, but especially for those of us with faulty immune systems that are already compromised. Taking breaks is imperative. Find a system that works for you: some people study for an hour+ at a time, then break for an hour. I find that studying for 20 minutes and then taking a 10 minute break (for hours on end) works the best for me. Do something stress relieving when you take a break, or at the very least distracting. Watch tv, read a book, take a nap, just relax.
   
   
5. Failure death by Social Media. Avoid Facebook. Avoid Twitter. Avoid Tumblr (oops). Use them only on your breaks (this is why the 20/10 or 30/10 works so well). Make statuses full of self-loathing and sarcastic humor about your awful fatigue and finals predicament, but then get off the websites.
   
      

   

   
   
   
6. Prepare your space. If you know you will be physically unable to study elsewhere, or you study best in your own space (dorm, apartment, wherever), prepare it accordingly. Do you need to go grocery shopping? Do it before finals. Stock up on the food you want for the week, bathroom space supplies (IBD’ers, you get it). If you have symptoms (migraine sufferers, this if for you) exacerbated by certain smells, sounds, or lights, do what you can to eliminate the triggers. Have a pillow or back support should you need it. Clean your space before finals week. Create the most distraction free, comfortable environment you possibly can.
   
   
7. Medication Preparation— many of us rely on daily medication in order to function. Whether this medication is over the counter or prescription, make sure you have exactly what you need for the week+ of finals and finals prep. What you don’t need is to be in agony because you ran out of pain medication, in a dangerous (read: hospital worthy) flare because you decided to opt out of the Prednisone monster, etc.— you get the idea. Avoid scheduling important health-related appointments that might cause you extra stress during these two weeks, if possible.
   
   
   
8. Speaking of medication preparation, if you know you need pain medication in order to get your pain level to a tolerable point that allows you to focus, be mindful of this. Take your medication 30 minutes (or however long it takes to work for you) before you plan on studying. If you rely on other techniques or therapies to offset distracting pain or symptoms, consider when to use them and when to start studying.
   
   
9. Now is not the time to skip out on pain medication. I hear from so many readers who ration their pain medication, who have doubts and fears about relying on such heavy meds (often fear generated by painkiller paranoia), but who can’t function without it. Now is not the time to feed your fears, doubts, or concerns. If you need, benefit from, and take prescribed medication responsibly (under a physician’s orders), there is no reason why you should be in more pain than necessary, especially when you need to be able to focus through the pain or without pain more than usual.
   
   
   
10. Have a heating pad/ice packs available. Spending a few hours writing out math problems? Have swollen, painful hands? If yes, have ice packs already frozen and ready for you when you take a break. Same goes for heating pad if you use heat for an ailment.
    
    
    
11. Don’t force it. Having a particularly foggy or painful day? If you know that studying is out of the question, put it away. Do not force it; doing so will only leave you frustrated, more fatigued, and further unable to do anything at all. Try working on something different yet still productive, take a power nap, etc., but do not force it. More stress =/= more productivity.
    
    
    
12. Breathe. I have never met a college student that wasn’t stressed out during exams, so remember that the rest of your peers are (or should be) feeling similar. Unfortunately, our level of stress rises to an 11 on a scale of 1-10 thanks to the extra added fatigue, fog, and pain…which is why it is especially critical for you to breathe and remind yourself that this too shall pass, finals are not forever, and you will be okay whether you pass or fail. Don’t focus on the big picture, just focus on the task at hand. Some words of wisdom: someone told me recently that even if you get a C, you’ll still get a degree.
    
    
13. Avoid spending any amount of time writing a post on how to be successful for finals with chronic illness when you’re supposed to be studying for finals with a chronic illness…
    
    

Happy studying!

Any orders received within the last week have not been sent out. Unfortunately, I’ve been physically unable to leave my apartment for days now— this flare is particularly awful. They’ll be sent out by Friday at the latest. Thanks for your patience and understanding. Please email me with any questions/concerns :)

List of names whose orders will be sent by Friday:

• Melissa E. from TX
• Rebecca A. from TX
• JeanAnn S. from ME
• Shannon R. from FL
• Mellonie B. from MI
• Candace J. from TX
• Karen D. from TX
• Britany B. from MN
• Cindy S. from MI
• Jennifer I. from UT
• Kayla S. from WI

Lots of people from Texas within the past six days! Some of you from the same areas, too!