October 12, 2014 celebrated something that is obviously near-and-dear to my heart (and joints): raising awareness to the various forms of arthritis. Especially juvenile–and young adult–arthritis. World Arthritis Day is the recognized day where all the coolest people band together to say to their peers, the medical community, and law makers,"this disease exists, do something about it guys." 

One day, I hope that we will all be able to say "this disease existed, it sucked but look at us overcoming it and shit." Or at the very least, raise enough awareness that people won't judge us for our invisible disabilities anymore–because there's nothing lovelier than "you don't look sick, are you sure, you're too young, if you just ate right" on a day when you're too crippled to walk.  

However. If there's nothing else that this past weekend has done (and hopefully it's also raised a ton of awareness), it has also shown me what an amazing support system I have. There's plenty of times where I fall into the 'woe-is-me' hole of life with a chronic illness, it's a dangerous pit but often it happens. I'd been proved wrong though. Last week, I'd said to wear blue for this event and to take pictures, and to be perfectly honest I didn't expect anyone besides my mom to actually wear blue (because that's what moms are supposed to do whether they like it or not). Except, I'd woken up on Sunday with several notifications from Instagram and Facebook where I had been tagged in pictures where some beautiful and rad people were sporting some crazy stylish blue clothing, and most importantly raising awareness. (Confession: I'm a bit of an over-emotional person, and I literally started to tear up a little like I was watching Old Yeller). It's a humbling, and heartwarming experience to say the least.

So, thank you to everyone who supports me whether by wearing blue or just by being there for me: my mom and dad, Melanie Christmas (and her family), Bryanna Griswell, Bekah Moon, Cindy and Ron Foxworth (and all of Knights of Solomon Motorcycle Club), Jane Nickel, Lora and Bill Fields, my brother, sister, and sister-in-law, Stephen Bloodworth, Kacie Harris, Kerry Hancock Abdo (my most knowledgeable of nurses about ports and medications), all my camp friends (Sarah, Mallory, Whitney, Savannah, Naa Adoley, Laurel, AJ, Matthew, Jordan, and all the campers I've had), and also like a million other people. You make me ugly-cry tears of joy a lot. I couldn't handle life without all of you. Thank you.

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Hugs + Kisses,

Julia.

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We must stop and find time to thank the people who make a difference in our lives. 

-John F. Kennedy 

Trypanophobia:
The fear of injections or needles.
(#7 Top Common Phobias, according to psychology.com)

There's quite a long list of things that make me uncomfortable, scared, or otherwise just give me the heebie-jeebies (like clowns, bugs, creepy people, social situations, people touching their eyes, loud noises, winerahmer dogs, rabbit costumes, heights, falling, death, etc.). Everyone is constantly making fun of how incredibly jumpy that I am. However, it's nearly impossible for me to have a phobia of needles–unless said needle makes incredibly unnecessary loud noises (see: Humira Pens). Therefore, the fact that my body had been basically a pin-cushion these past few weeks hasn't phased me what-so-ever,. In fact, it seemed almost appropriate to liven up a mundane hospital-filled week by actually going to be poked repeatedly by needles (because that's logical), but this time by choice and with much excitement. 

It had been a few weeks ago while attending a charity motorcycle ride at my father's club, that I'd been so wonderfully gifted a certificate for a local tattoo shop. If there's one thing that I have a definite love affair with, it's tattoos (despite my formerly ink-less, bare skin), and it's not just because tattooed men are the handsomest. It'd been a last-minute decision to wander into the tattoo shop, and finally become an tattooed member of society. Like I'd said before, I'm a professional scaredey cat, so it was easy to psyche myself into being terrified over an infographic that listed shoulder blades as one of the most painful tattoo spots (thank you, pinterest). Luckily, that was a gigantic lie, because almost every IV that I've had has been a lot more brutal than this experience-or perhaps, I just have terrible nurses-. There was absolutely no feelings of pain that would warrant a dramatic "holy shit, this really hurts" moment, just a slight being-stabbed-by-a-pen feeling. Or, I could just be that badass. Either way, it is done and I'm overly thrilled with the result.  

Lovely Backstory, Because You Knew There Had To Be One:

Even though, I have a mile-long list of potential inking endeavors, it was without hesitation that I'd committed to becoming twinsies, times four, with my family members. It was a few years back that my parents both had gotten their first tattoos together: four paw prints to represent each member of our family–solidifying that I've definitely been raised by wolves, so to speak. It seemed necessary to represent some of the coolest (in their own special way) people that I've ever known with my first tattoo. After all, if there's been three people who have consistently been there and had my back (get it, get it, my back, since it's a tattoo, on my back!) throughout my entire life, it would obviously be those homies who have shared my last name. I'm now officially a part of the pack, and there's no denying me. 

Oh, look at me being all sappy and such. We absolutely know that the true reasoning for getting a tattoo was to increase my attractiveness level, obviously.

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Hugs + Kisses,

Julia.

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Tattoos have a power and magic all their own. They decorate the body, but they also  enhance the soul.  

-Michelle Delio 

Where's my modeling contract, Tyra.

One of the most evilest of evil rheumatoid arthritis commercials has a voice-over that says that a body in motion stays in motion. However, what Newton's First Law of Motion fails to mention, is that if the object decides it's a splendid idea to just run to the grocery store, my doctor's appointment, and lunch then said object (the object is me) will immediately regret this decision by about two o'clock (or really as soon as I've gotten to aisle three in the grocery store).  Even though the most strenuous activity that I participate in is wrestling my cat down from the window screen when she's being too stubborn to come inside at night, I still feel completely wiped out and exhausted all day. There's plenty of people who count my constant mental countdown until it's semi-acceptable to take a nap as laziness– and there's a lot of laziness running rampant through my veins, obviously– , but when it takes too much energy to play videos, go to the movies, or even write a blog post, it's more than just my young-adult-laziness because I'd definitely choose to be playing Batman: Arkham City rather than sleeping roughly fifteen hours a day (that's how much cats sleep a day, so maybe my crazy cat lady-ness is just slowly turning me into a cat, that'd be a more awesome explanation than just that I have a shitty immune system). 

Source

What motivated me to write this blog post was actually this picture that I'd come across on the eighth wonder of the world– Pinterest. I'd actually been lying in bed after the physically draining activity that is attempting cleanliness, because it hurt  me to even think about getting up and finding my pajamas so I could promptly lay back down. That ten seconds of movement felt exactly like I'd been inside the UFC Octagon for two rounds (well, I'd happily go two rounds some of those fighters any day, but that's beyond the point), and now I'm buried under heating pads and fueled by pain medicine. Ir reminded me that my chronic illness and it's rein of terror hasn't only happened to me. Obviously, there's different levels of severity of each disease and symptoms, but everybody that has a chronic illness knows all about deciding what is important enough to do with your time without exhausting yourself completely – and if you're apart of the great and mighty chronic illness community then you know this as *dramatic music* The Spoon Theory.

Source

It's the  insane idea that some people don't have infinite amounts of energy boosts to take when there is a lot to do. If I've already done six everyday things–  i.e. waking up, taking a shower, getting dressed, straightening my hair, preparing lunch, etc. as well as those things that are energy draining enemies– this is starting to sound a lot like I'm talking in video game – like going to the mall with my friends, going grocery shopping, or even spending the day in the doctor's office, then there's an absolute likelihood that I'll be unable to participate in living tomorrow. In fact, one of the most depressing things that has happened to be lately was when my mother had brought up the idea of a vacation to Disney World (because all depressing stories start with the happiest place on earth, obviously). To most people, going to an amusement park, or on a family vacation, is only horrible because of the overpriced sticker price on happiness, or the crowds and heat or spending time with people. However, calculating the amount of physical beatdown it would take to walk halfway down Main Street at Disney World, or to wait endlessly to ride Space Mountain left me in tears just at the mere thought. It would take a month of being comatose to store up enough spoons to handle a day there, with my current medical predicament (if I'm ever in remission, somebody better ask me what I'm gonna do next so I can scream that I'm going to damn Disney World). If you have a chronic illness than on some level you're fully aware of the feeling of exhaustion and disappointment that comes with canceled plans and just living an everyday life– because, to the surprise of most, my only wild night is actually going to hang out with my friends for the first time in a month to see the newest superhero movie in theaters (go see Guardians of The Galaxy, go). If you're lucky enough to have a completely rad immune system that doesn't attack some trivial part of your body, please realize that although it's true that I'm a hater of most people, the real reason I'm always canceling plans is because I can't physically do it. If there was a monthly print-out of overage charges from spoons, then you would be shocked that I'm even able to move most days. So, that being said I'm gonna go take a nap– and for my chronically ill  friends, may the spoons be ever in your favor.

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Hugs + Kisses,

Julia.

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He maketh me lie down    

-Psalm 23:2 (the bible is always up for interpretation)

Actual photo of my actual horrible bangs.

During the twelfth year of an awkward existence, there was a lot that I discovered about myself: that my athletic ability is less than ideal to play volleyball; that my terrible blunt homeschool bangs were the worst thing to ever happen; and that medically I'm a mess– well, if we refer back to the bangs, then altogether I'd been a mess. 
The initial diagnosis that had brought me into the doctor wasn't actually the arthritic fun time that is rheumatoid arthritis–  it was actually the fact that on a daily basis, I took great pleasure (ha!) out of puking my guts out, and the inability to keep anything down (sorry, various hotels, stores, and restaurants for upchucking on your floor– especially you, Cracker Barrel because you're the bomb). However, besides the acid reflux it inevitably turned out to be, my gastrointestinal doctor noted that we'd had a family history of autoimmune disorders. It was after a stomach scope and a blood panel, it was discovered that I'd had the hypothyroid disease as well, Hashimoto's –which makes me a fatty and moody, and forced me to see an endocrinologist (with hair like a cross between a hedgehog and a 90's boybander). Luckily, it's since been in remission for quite a while. 

Actual picture of Dr. Weiser 

However, autoimmune diseases don't like to party alone, and usually come in groups of two or three– just like teenage girls, and they're just as annoying. Which is how our regular family practitioner (who had just  gotten out of medical school, and was deathly afraid of my mother, as anyone should be) noticed my swollen knees and my awkward, painful hobble. It was cause for concern, further blood tests, and a worry that it was lupus (then I would've really been Dr. House); which is how my rheumatoid arthritis–dun dun dun–diagnosis came to be. This started a whirlwind adventure of doctors, hospitals, and hurt. The first rheumatologist that we'd seen was local and a major league hater, which made the three-hour trek out to Birmingham, Alabama to visit the pediatric rheumatologist worth it. The man that became my constant rheumatologist for the past five or six years, is a dorky, hilarious, great person who bears a striking resemblance (both in appearance and accent, but probably not in evilness–maybe) to Gru from Despicable Me. Sadly, just like pizza and Netflix marathons, all good things always come to an end– since I'd turned eighteen, they decided I'd been too amazing to handle and decided to kick me to the curb into 'adult' care. 

Homegirl.

That adventure began this past Thursday, and only required a trek of forty-five minutes into Auburn, Alabama and just like everything expectedly is in College Football Town, USA, the new rheumatologist is inside the sports medicine clinic and therefore is decorated like football fields. It's enjoyably laughable that I'd been sitting in a waiting room at sports medicine facility considering, as before mentioned, my lack of coordination and athletic ability made me the prime candidate for the sidelines bench at volleyball games, and now I'm just crippled. It was odd being apart of a waiting room that completely filled with everyone being past middle age (including an elderly man listening to a blaring western on his phone) considering the Children's Hospital is predictably full of screaming toddlers, and Dora The Explorer muted on the television. The lack of stickers, aquarium wall murals, and Highlights magazines in the waiting room, however, brought a deep sadness to my heart; but, the new rheumatologist lived up to his praise from my pediatric doctor– he was just as ridiculous as well as helpful about my medicines, school accommodations, and noted that the 'shade where you are in pain' part of the introduction paperwork was completely a black shaded figure because homegirl is in pain everywhere. Our experience is new, and about as exciting as you'd expect spending endless hours in a waiting room to be (like DisneyWorld, obviously). That being said, it allows me to be able try new dosages and medicines that I'd been banned from in the kiddie cripple world–  which is sadly exciting to me, it's quite obvious I need to get a life and not sound so much like a druggie. On the plus side, they're uppin' my dosage on my Orencia, which will occur at the new infusion facility on Thursday. Let's see how this goes. 
Now, if you'll excuse me, I have a Law & Order: SVU to catch up on. 

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Hugs + Kisses,

Julia.

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What's comin' will come an' we'll face it when it does     

—  Hagrid (Harry Potter)

If you've been alive within the last few months, then it's highly likely you've seen the misadventures of everyone raising awareness for the disease, amyotrophic lateral sclerosis (or more commonly, ALS or Lou Gehrig's Disease) by dumping ice cold buckets of water atop their noggins. Unless of course, you've been living under a rock or aren't apart of youngin's shenanigans of social media. There's not a single person that hasn't participated in this newest sensation on my friend's list – even my dad and his motorcycle club had done a video to raise money for a charity motorcycle ride a few months ago, before the videos were overrunning social media (it's sad when my father is more hip than me).

There's a mixed-feeling that I have about this particular social media bandwagon that has swept the nation and crazed teenagers (and even a lot of famous faces, including some hot guys that take off their shirts- praise the lord). Likely, these videos were created for a purpose to begin with –to raise awareness and funds for a fatal disease that affects the lives of too many people. However, it's obvious that that purpose is slowly being lost with the billions of videos that are overrunning my facebook news feed. It's without a doubt that these videos served a purpose by raising an unbelievable amount of money for their foundation ($88.5 million, whoa man), however it's unlikely that the majority of people who post videos could tell you anything about this disease. Which makes me think that their awareness is getting buried underneath an overload of money, and perhaps that's why for every ice bucket challenge and nomination that I'll see, there's at least four people complaining about ice bucket challenges. Even though, it bothers me that the awareness factor is dwindling away, there's absolutely no complaints that I could possibly have about someone attempting to raise awareness for a cause they're passionate about. 

Irrelevant. I just find it hilarious.

Perhaps, my opinion about advocating is bias considering everything that I've done on social media is almost always in an awareness raising effort (I'm pretty annoying and boring like that). Undoubtedly, everyone on my friend's list will get tired of my endless attempts at raising awareness for the causes that too closely affects me, and haters will hate hate hate all they please, I'm never gonna shut up about finding a cure for rheumatoid arthritis (but, then again do I ever really shut up about anything). That's partly a reasoning why this blog is important to me, because it raises awareness to the real-life affects of rheumatoid arthritis and puts a face to what a pain in the ass (and hips and knees and back and wrists and elbows...) it is. Which, with any hope at all, will make others stand up and say "this disease is an asshole, let's get rid of it." In another blog about living with chronic illness, Chronically Katie, she paraphrases a quote from a politician, Harriet Harman where she said, "You shouldn't listen to people who tell you to shut up, because you aren't doing this for yourself, you're doing this for every person affected. If you won't do this, then who will?" That's exactly my philosophy when advocating, because I've seen too many eight-year-olds that are unable to walk,  that have to watch their friends play kickball while they're confined to a wheelchair with swollen kneecaps. This disease is unfair, and I won't shut up until it's cured. Sorry, not sorry.

That all being said, among all the thousands of ice bucket challenges you'll see this week, you won't see mine (even though I've been nominated several times and am just coyly ignoring them, oops). That's because I'm not absolutely ridiculous and prefer not to be frozen solid – and considering I can't even enjoy the luxury of a swimming pool because it's inevitable that my joints will gain the inability to work afterwards (this also one of the many reasons you won't see me in a wet t-shirt contest or pass the mason-dixon line anytime in winter ever again), so homegirl gonna pass. However, I'm not a complete scrooge to everyone's fun, and will be donating instead to the Arthritis Foundation. If you'll excuse me, I'm gonna go take the warm water challenge and go take a shower before promptly burying myself underneath heating pads and the comfort of pain killers.

Please consider donating to the Arthritis Foundation in your next ice bucket challenge or your next "I just wanna be a rad person" challenge. Here is the link.

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Hugs + Kisses,

Julia.

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I am only one; but still I am one. I cannot do everything; but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.     

—  Helen Keller