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About Digital Art / Hobbyist Official Beta Tester Mara S.Female/Unknown Groups :iconwomenofbadassery: WomenOfBadassery
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Personal Tragedy

Journal Entry: Sat Sep 13, 2014, 12:49 AM



I've mentioned this several times on dA already, but for those of you who missed it, you should know that I've been suffering from chronic health problems for quite some time now.

Well, after 2+ years of being in pain, today I finally, FINALLY got a diagnosis. I won't know the full extent of the problem until the biopsy results come back, but the preliminary tests reveal that I have yet another autoimmune disease to add to my collection (basically, when you have an autoimmune disorder, your body loses the ability to distinguish between antigens and its own cells, leading it to destroy normal tissues. The exact cause of autoimmune disorders is unknown, and there is no cure). I already have thyroid problems, 'cause my immune system decided it would be a good idea to attack my thyroid gland, and I'm also gluten intolerant, because my shitty body decided it would be fun to go completely haywire at the merest whiff of the stuff. Now my digestive system has decided that it's a threat to itself, and it's started up the slow, agonizing process of ruthlessly destroying its own lining. Gee, I can't wait to see what shenanigans my white blood cells pull next!1! [/end fucking sarcasm]

I've got something called ulcerative colitis, which is kind of like Crohn's disease, except a different part of the digestive tract is affected (it's also generally less severe). "Less severe" notwithstanding, it's still a debilitating illness, and I get to spend the rest of my life playing pill-popping games in an attempt to induce periods of remission just so that I can function at a basic freaking human level. Objectively, I know my situation could be worse. I could be a quadriplegic, or covered head to toe in boils. I could be dying of cancer. Rationally speaking, I understand that there a lot of people out there who have it far worse than me. I know that UC is “manageable” or whatever. But let me tell you something - objectivity doesn't help much when you've been slammed with what is effectively a lifelong sentence of poor health. The thought that this pain will never, ever go away, that I will be stuck dealing with this off and on until the day I die, is so profoundly draining that I cannot even express it in words.

The weirdest part of it is, I don't even have the energy to be actively upset about it anymore. Three weeks ago, when my doctor issued the "suspected" diagnosis of ulcerative colitis, I cried nonstop for like 45 minutes. But now I'm just sort of...resigned. All I want to do is sleep, so that I don't have to feel anything anymore. I'm just so, so tired. I'm tired of being in pain, and I'm tired of being poked, prodded, injected, medicated, -oscopied, and otherwise humiliated. I'm sick of having my personal space repeatedly violated out of medical necessity. I'm tired of describing my symptoms over and over and over again to each new nurse and doctor. I hate waiting months for appointments, and then sitting around for hours in freezing cold hospital rooms. I hate the smell of antiseptic, I hate the sound of beeping heart monitors, and I hate being around so many other people who are as sick as or sicker than me. Most of all, I hate the repeated explanations to baffled/concerned friends and family members who have never gone through anything like this. I can't tell you how many times over the past 2+ years I've had to call up people at the last minute and cancel fun plans, because I was feeling too sick to leave the house that day. I can't tell you how many days of work I've missed (my boss really is the most generous woman on the planet for not firing me...I need to bring her a bouquet of flowers next week). Not to mention the fact that I had to drop out of my ESL certification course and indefinitely postpone my plans to go overseas. It's all so embarrassing, depressing, and exhausting.

I'm also angry. Not fiery anger, but the quiet, simmering resentment of one who feels they have been wronged. Look, I know that life isn't fair. I know that bad things happen to good people, and that there's no rhyme or reason to any of it. It doesn't matter if you're a sweet kindergarten teacher or a chain-smoking wifebeater; suffering doesn't discriminate. And yet, on an emotional level, this diagnosis is wildly at odds with my own sense of justice. I've spent my entire life trying to do "the smart thing" in every situation. I worked my ass off in school, prioritizing grades over my personal life, all so that I could get into a good college. At Brown, I studied hard and graduated #1 in the anthropology department. I've never done drugs, or drank heavily, or screwed around, because I didn't want to end up like the worst members of my trailer trash family. I've behaved sensibly in the face of practically every crisis that's come my way, and I've always prioritized long-term payoffs over short-term pleasures. Everything I've done, I've done as part of an overarching plan to secure myself a bright future. So to have that taken away from me by forces outside my control...I can't even quantify how betrayed I feel. I can't help thinking, "what did I do to deserve this?" And the answer, of course, is "nothing, because 'deserving' has nothing to do with it."  I know I'm not the first person on Earth to come face to face with the indifferent unfairness of reality, and I'm sure I won't be the last. But that's no comfort.

After today's appointment, at least, I've found a measure of consolation in a spiteful yet triumphant sense of "I-told-you-so". For 2+ fucking years I've been telling doctors that something's wrong with me, and most of them just looked at me like I was out of my mind. I had one healthcare "professional" insinuate that I'd concocted the whole thing because I "didn't want to grow up". I've had relatives tell me that it's all in my head, or that I'm just "being too sensitive". My paternal grandmother (who is a NURSE and should know better) told me that my illness is caused by my own "negative thinking". My father, in his scientific brilliance, suggested that maybe I just "drink too much tea". The level of ignorance, victim-blaming, and callous dismissal that I have encountered during this ordeal has completely changed my view of not just our medical system, but of my own family. I'm not speaking to several of my relatives now, and I purposely skipped my grandmother's 80th birthday party (which may have been petty of me, but I can't bring myself to give a shit). Well, assholes, now I have unassailable PROOF that I'm not just a crackpot who manufactures illness for attention, so you can all go fuck yourselves. On a more positive note, I also have a new-found appreciation for the people who've been supportive and understanding, like my Mom (without whom I literally could not function right now), and my friend Carrie, who sent me funny text messages while I was at the hospital today.

Anyway, I need to go to bed. My hilarious cousin Jordan is going to come over tomorrow night to give me some much-needed laugh therapy. Hopefully I'll be able to come to terms with this more over the coming weeks...I think I'm going to try and find a counselor who specializes in people with chronic health problems. Good night, everyone.






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  • Mood: Suffering
  • Listening to: Death Waltz
  • Playing: Dragon Age
  • Eating: Salt & Vinegar Chips
  • Drinking: Grape Soda

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:iconchronorin:
Chronorin Featured By Owner 6 hours ago  Professional Digital Artist
Hey, Miss Mara... i was just wondering.  1.) How are ya doing? and 2.) How are you liking Book IV of Korra?
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:icondrucilla733:
drucilla733 Featured By Owner Oct 19, 2014
Oooooh! I just re-read "The Good, The Bad, and The Wealthy" with the new chapter. *slow clap* I am so excited for this story. You're an incredible writer and artist. (A true renaissance woman!) I hate that you're health is bad, but at least you know what's wrong and it's always better if you have a name for what ails you. As much as I want to beg for more creative output from you, your health comes first.
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:iconacaciathorn:
Acaciathorn Featured By Owner Oct 19, 2014  Hobbyist Digital Artist
:hug: :cuddle: :glomp:
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:iconmissmcguire:
MissMcGuire Featured By Owner Oct 16, 2014
jonasdero.deviantart.com/art/D…

This is what I imagined for that last scene with Older!Jimmy and Older!Cindy before the kids come to the rescue. Minus the gun. :D

I'm so sorry to hear about this sickness (and other suffering) you have. I know you don't know who I am, but I'm praying for you. God bless. 
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:iconacaciathorn:
Acaciathorn Featured By Owner Oct 16, 2014  Hobbyist Digital Artist
haha, that is fantastic! Thanks for sharing ^_^
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