Thursday, August 28, 2014




The majority -at least in my mind, and my instagram feed- of young adults girls (my least favorite group of people personally) will be spending their weekends nursing hangovers, and feeling generally crappy after a night of fun. Those feelings are about all that I'll ever have in common with 'cool' girls like that, except instead of sweating vodka and having memories of great times, the toxic liquid that runs through me and leaves me feeling dazed is not something anyone would ever consider a party. This weekend already has the promise of a combination Orencia-Methotrexate hangover, and I can feel it. In case you're mistaken, those totally aren't fun club drugs, they are instead medication that have a ridiculous and scary laundry list of side-effect- you know, just the everyday nausea, fatigue, cancer-, but still lure me with the promise of 'feeling better' and 'possible remission,' and my gullibility continues to try. To be honest, despite dealing with immune system-suppressing medications for the past 6+ years, it never gets easier when those waves of fun side-effects hit and the feel-goodness doesn't. 

Currently, the cocktail of drugs that my doctor has prescribed this time is Orencia, Methotrexate, and various pain medication as needed (it's always needed). The vast majority of rheumatoid arthritis medication has been personally tested by me, and stamped with a big fat fail. However, I'm told it's just a matter of finding the right combination and dosage, and yada-yada-yada. 


methotrexate: just one more unsavory aspect of life with sarcoidosis
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The methotrexate is the one constant medication that has been coupled with various biologic response modifiers (doesn't that sound fancy) which includes Remicade, Humira, and Enbrel. These are all medications that are either injected or given intravenous, so I'm riddled with borderline track marks and scars. Currently, I'll inject my methotrexate weekly with a syringe at home, therefore my bathroom looks slightly like I'm a very hygienic heroin addict with all the various needles and sharps containers and alcohol swabs to combat infections. This sickly, bright canary yellow medication sits in a vial on my medicine cabinet shelf taunting me. It's easily the most dangerous rheumatoid arthritis medication on the market, considering various other uses for it include chemotherapy -it's just a lower dosage, but still a lot of the same exact side-effects- and to induce miscarriages in ectopic pregnancies- which leads me to be more likely to have difficulties getting pregnant eventually, as well as the possibility of fetal deformities. Oh boy. The extreme side-effects tab always terrifies me, but the clumps of hair that fall onto my pillow at night, the airsick bags that are in my glove box 'just in case,' and the monthly blood tests to check liver and kidney functions that are typical remind me that there's not a lot of fun side effects to choose from here (can 'spontaneously become awesome' be a side effect). However, it's the most widely prescribed rheumatoid arthritis drug on the market, because it truly is the best at what it's supposed to do. It also allows me to mark my calendar with 'meth day,' and concern anyone who looks at it, so you just keep doin' you, methotrexate. 


JUVENILE IDIOPATHIC ARTHRITIS. Yeah. You know, Kristen your 15 year old girl, on chemo. Methotrexate. Woo.
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The other hobby that arthritis has given me besides constantly poking myself with needles, is getting the opportunity to get 'highly skilled' nurses to poke my veins with needles a few thousand times until my hands are covered in bruises and scars (pretty hardcore, amiright). For two straight years, I'd taken monthly 3+ hour infusions of a biologic called Remicade, which worked pretty consistently well (at least considering there was nothing else that had remotely worked) until I'd turned nineteen where it seemed unlikely that our insurance would approve it for adult-care, because they were like "You're an adult now, man up, you don't need no pain relievin'." (or because it was upwards of $40,000 an infusion and probably makes my father's insurance company cry, I'm  pretty expensive to please). There was also the pesky detail of it is supposed to be an amazing lets-run-a-marathon medication, and it was just an alright lets-get-out-of-bed-not-in-tears medicine. Therefore, my doctor decided to switch me over to another medicine (which I'll complain talk about momentarily). Currently, twice-a-week, we make the trek over to the frozen tundra infusion room to allow Orencia to make it's journey into my bloodstream- luckily, it's significantly less of a struggle to be confined to an IV pole for about a hour-and-a-half less, but there's no comments on that since this medication is still a new contender in the boxing match of my health. 


My momma, because she's my infusion partner-in-crime
The medications that were a bit hit-and-miss (and a little bit of that's-not-even-in-the-ball-park-of-a-hit) were basically all those that I've weened myself off and replaced with something new. The big-name-players include Humira, Enbrel, and Celebrex. When I'd been first diagnosed, and I'd begun the druggie journey, they'd prescribed the nonsteroidal anti-inflammatory drug (NSAID:  that's the term if you're not a drug professional like me, it's my only talent-  medications like ibuprofen, aspirin and naproxen fall under this term) called Celebrex  (since I'd also been prescribed naproxen and all of this holds true for that as well, I'll spare you the spiel of that). This is just a typical pain-reliever and fighter of inflammation crime within my system, and it's mostly prescribed for those with fairly moderate progressing and newly diagnosed arthritis patients. However, I'm always an overachiever with being sickly, so they said 'no bueno' to that, so then my doctor tried the corticosteroid, Prednisone. The term steroid to most conjures up images of muscle-bound baseball players being kicked off the league, instead this medication made me a touch-me-and-I-will-kill-you irritable, and gain ridiculous amounts of weight (homegirl has to eat). These were less-than-ideal side effects for a teenage girl, obviously. The biologic drug, Enbrel was prescribed nextwhich is the one with the commercial that has that dang professional golfer Phil Mickelson. It should totally be me featured in that commercial. It was the first disease modifying anti-rheumatic drug (DMARD: for all you less-fancy folks) that they'd prescribed me, and since it was injectable my mind was like "nope". However, combined with methotrexate, it worked for quite a while...until it was all "nope," right back at me. The end of the Enbrel-era brought upon the infusion-era that was only slightly interrupted by the demon created device called Humira Pen. Despite this medication also coming in syringe form, my doctor and insurance company obviously have a personal vendetta against me and prescribed me this epi-pen-like device that makes a sound quite similar to a gunshot prior to it shooting liquid acid-magma into my thigh. It was a bitter feud between me and this drug, because it just simply didn't work and therefore I had to abandon it and move on (people used to tell me that I'm overly dramatic, I can't imagine why). These medication weren't my cup of toxins to inject into my body, so it's been a start-over process since then.
Hahahahaahahahaha, I hate you so much :) :) :) :) :) :)

Since autoimmune disease drugs are almost always immune system suppressing, I'm always getting sick. If I hear someone three aisles over sneeze, it's like a signal that I'll get sick tomorrow, and during cold-flu season, I  attempt to avoid public school children at all costs (those are some virus carrying buggers, that make me glad I was homeschooled). Likely, I'll be the first to die during a zombie apocalypse because those will blink at me and I'll be infected. In addition to all those medications for pain relieving, as well as those that prevent joint deformities (so, hopefully it'll keep my hands from looking like I'm throwing up constant gang signs), they have also prescribed Folic Acid tablets to combat the not-so-superb side-effects like nausea, and various vitamins so I won't be a total mess. They're easily forgettable though, and I need Ryan Gosling around to remind me that they help greatly. 


It's becoming apparent that there's an absolutely lack of briefness with anything that I write, it's an actual problem for me- just ask anyone that has to suffer through a long, rambling text message from me just when I'm asking if they would like to get a frappacuino with me-, so my entire blog will always be like ten thousand words each. Oops. It's also apparent that each post more closely resembles an extremely idiotic and sarcastic medical dictionary than anything else, however that is my life described right there: idiotic and medical definitions. It really should be a priority of mine to make my parents proud and join medical school or something with my overload of knowledge about medical-related nonsense. Or I could take a nap. I think I'll take a nap. 

Good day. 





Hugs + Kisses,
Julia.

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That's the thing about pain. It demands to be felt.    
John Green (The Fault In Our Stars)







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