My little blog hiatus ends tomorrow at 12 noon!
I have enough posts queued to get me through spring break (which starts Friday), and will let me finally catch up on my writing. I have lists of ideas (65 to be exact) and haven’t had much time or energy to blog them, and a few things going on in my personal life have kept me focused on other things. The break was necessary (90% of posts have been queued in the past week or so) and I feel...
Had a crazy weekend and have been too sick to really update or answer messages (or do much of anything), but will probably catch up over throughout spring break once exams are finished with and my birthday is over this week. Fastest way to get me for now is CC Facebook
Despite sleeping for about 11 hours (huge feat for me), I woke up feeling pretty miserable. I knew that this was likely the result of doing so much on Thursday (I had a good day Thursday) and the rain moving in, but I forced myself to get up and go to my statistics lab regardless. Found a parking spot about 10 minutes away in walking distance from my stats building. For those of you with...
What’s New: Index Page— an index of this entire website to help you find exactly what you’re looking for Chronic Curve Store— products for sale through Amazon that I have read, reviewed, plan on reviewing, or that I use regularly. I earn commissions from products sold through my store and all commissions will go to site maintenance and the scholarship fund I’m...
Anonymous asked: Is there a reason why you don't write any doctor or nurse's name in your posts?
By "CT Scan With IV Contrast"
I did not think you meant “2 hour ordeal: CT scan with IV contrast, four cups of barium drink for the girl who is already constantly gagging, and a barium enema.” Any test that comes with a barf bag is not a pleasant one, but I was lucky enough to have had a friend drive and make things a little less unpleasant. We turned the eme-bags into hats…”Wizard hats,” to be...
Anonymous asked: Hi beautiful, I don't know if you saw the blog I wrote for Wego health about internet creepers but I quoted you in part of it. Just wanted to share that and tell you to check it out because you gave some great advice about relationships with your community. :) Keep up the wonderful work you always do. -Sara
microwavequiche asked: Hi, Just wondering if you find that a certain brand/type of pen is easier to write with and not as a hard on the wrist and fingers?
Anonymous asked: Any fundraiser ideas for a college campus?
toomanystarstocount asked: I was just wondering how you kept yourself busy when you took time off of school? I'll probably be sleeping a lot but even if I have to spend all my time in bed, I can't just *sit* there, I need something to do and I'm having a hard time coming up with ideas.
Anonymous asked: Do you support the Arthritis Foundation? I don't seem much on your blog about them ever
Answering questions/catching up on asks for the...
you have been warned. Now is a great time if you have a question, too.
Anonymous asked: Can you drink with your RA?
Dr. Incompetent, Mysterious Abscesses, and a Lack...
The amount of incompetency I’ve encountered in the past two weeks is truly beyond words. Most of you know that I just wrapped up a week long visit to the Mayo Clinic, that was both enlightening and incredibly frustrating and left me in quite a bit of turmoil. I called both the rheumatologist I saw, Dr. W, and Dr. A (A for asshole as you lovely followers have so dubbed him!), the...
$274.00 in Bracelet Funds So Far!
Amazing response to these bracelets. I am bed bound for the fourth day in a row, but am passing the time by writing each of you that purchased a bracelet a handwritten thank you note. Proceeds go to the creation of a scholarship fund for chronically ill students (graduate and undergraduate) and to Autoimmune Arthritis research through the ANRF (Lupus, Rheumatoid Arthritis, AS, etc), so...
Leap Year and Birthday Blues
Most of you probably aren’t aware of this, but I have a leap year birthday. I was born on February 29th— a day that only exists once every four years. Meaning that come February 29th, 2012, I will be turning five years old. I have defied all medical statistics and odds since childhood— a constant anomaly. In recent years, friends, family, lab techs,...
Who Comes Up With These Names? A Plea for Truth in... →
Particularly relevant article to those of us with Rheumatoid Arthritis. Author of How to Be Sick (one of my favourite books which I will be reviewing shortly), Toni Bernhard examines Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue Syndrome, and Restless Leg Syndrome and the phenomenon of poorly labeled medical conditions. “For example, people with Rheumatoid Arthritis are frequently...
For those of you that asked, I will do a separate...
I’ve come across and subsequent information/how to start the process
A Little Piece of Happiness: Therapy Dogs
Puppy Appreciation Post: There are few things that calm me or make me feel better when my pain exceeds the point of toleration. My dog sensing my pain and distracting me is one of them. Meet Baylee. We rescued her when I was 13 and fell in love with those sad brown eyes. Right now, she is seven hours away south of Tallahassee and the distance is driving me mad. When I moved back...
Today was an absolutely awful day, full of incompetent doctors (wait until you hear about this one. He trumped all of the ones previously mentioned), horrible weather, and excruciating pain while running on quite literally no sleep, but I cannot tell you how amazing it is to read messages telling me how that last post resonated with so many of you, and how many of you took something away from it. ...
Anonymous asked: There are not enough words to thank you for your "Love yourself More" challenge. I just spent a week in the ICU after a suicide attempt and I really need *something* to help me come to terms with the pain and disability that led me to feel so much despair. I am so grateful I found your blog, you have changed my life for the better. THANK YOU. <3
This Valentine's Day, Love Yourself More
I don’t care much about Valentine’s day. It makes no difference to me whether or not I’m in a relationship with another person when the 14th rolls around because no matter who I am with, where I am, what day it is, or what I’m doing, the most important relationship I have is with myself. It took an indescribable amount of loss and heartbreak for me...
instructions-are-included asked: Thank you so much for sharing your experiences and inspirations. I am coming to terms with my chronic illness, which, while very different from the difficulties you face, have made college extremely difficult for me. You are such a powerful writer and I think your blog is fantastic. I hope you have a great day!
Last night I lost a lot of hair after running my hands through the left side of my head. It just comes right out with a weird noise and falls down the side of my bed. It comes out in little balls/knots in the shower. I have to empty my brush after a few strokes. Thus far, it hasn’t been visibly noticeable and has been a slow process. First I noticed it was thinning, then I noticed I was...
update of information
on the Methotrexate Shortage post. The NY Times has also issued a relevant report.
Add That to the List: Part II
About two weeks ago I wrote a post called Add That to the List, which detailed my thoughts and reaction to some extremely insensitive comments from a close friend. What list am I referring to? The list of things ot to say to someone with a chronic, progressive, incurable, debilitating disease. Round two: detailing my thoughts and reaction to an extremely insensitive comment from, of all people, my...
United States Methotrexate Shortage
According to this ABC News report, a critical shortage of the “children’s Cancer drug” Methotrexate is apparent. Though ABC news mentions the 3,000+ children with cancer that need this drug, they fail to mention the 300,000+ children with autoimmune arthritis (RA, Lupus, etc) that may or may not rely on the drug, not to mention the thousands of adults that do so as well. Once...
The Silicone RA Bracelets are here! Down at my...
and I promise I will venture out of my bed to get them tomorrow, take photos, and will send them off in envelopes to you lovely people!
Senate To Hold Valentine’s Day Hearing on Chronic... →
On Feb. 14 the U.S. Senate HELP Committee will hold the first hearing on chronic pain. Great way to get involved and taking action is simple!
project3x5 asked: So glad you're happy with how the appt. went! Sounds like it was pretty rough though. Rest up so you can get back to writing and keeping all of our spirits up. We couldn't do it without you! Lots of love, Emily! xx
Mayo Clinic Visit 1
Full Mayo Clinic update for friends/family/followers that have asked me to go over everything. It’s an exhausting task trying to explain so much information and events to everyone individually, so I am doing it here! Warning: this is long. I arrived in Jacksonville with my friend, Kris, on Sunday afternoon. We met up with my mum and some family friends, enjoyed the Superbowl and...
exhausted and very sick. Mayo Clinic has been a...
and we had one hell of a doctor screw up/mess. The kind messages are overwhelmingly amazing and I promise to get back to everyone when I am feeling a bit better. Will hopefully post a full update tomorrow (have been updating via twitter and facebook), typing is difficult for the time being. Hope everyone is having a relatively pain-free week! — E
Anonymous asked: If someone buys an RA bracelet, do you see who they are or is it anonymous? Same goes for Paypal donations
Mayo appointment with rheumatologist went incredibly well. Have a sensory-neuro condition similar to fibromyalgia (no surprise there) and obviously inflammatory something or other, but it’s time to re-evaluate and figure out what exactly is going on. Talk of genetic conditions and had 26 vials of bloodtaken, some of which will be sent to the NIH in Maryland for those genetic markers. Blood...
Personal Health Update
First round of exams this semester, Mayo Clinic, flare, next week hiatus Yesterday marked the end of my first round of exams this semester— my first semester being back at university since I was diagnosed. Brain fog got in the way (again) and despite studying over a week in advance, I failed two of the exams. My inability to process complex questions and draw correlations between theories...
A big thank you to www.pixiecd.com for featuring...
Note that the Arthritis National Research Foundation has made huge strides in research for all types of Autoimmune Arthritis. Money raised will not just be going to RA research, but to Lupusand other kinds of autoimmune arthritis as well. I also think it’s important to note that finding the key to one type of autoimmune arthritis may very well just unlock the the door other other AI...
I will be providing proof of discussion and positing emails with donation details between myself and the Arthritis National Research Foundation, the foundation where I would like the money raised to be donated to. They have a large focus on Autoimmune Arthritis research. Account statements of both incoming orders and when bracelets are all sold, outgoing amounts will also be published, along...
ice cream for dinner and putting off the giant load of work I need to do tonight. Why? Because this flare doesn’t care about my priorities, my need for nutritious food, and apparently my need to chew. In other news, I no longer need to wear any blush whatsoever. My red facial rash takes care of that for me. Pro or con…you decide.
Rheumatoid Arthritis Awarenesss Bracelets!
Paypal problem has been resolved, order away here :) Click the Buy a Bracelet page for ordering details. Please remember that the bracelets are pre-order, hence the proof photo. It will take a few weeks before you get yours!