Hey folks - in honor of 2019 (a year that was, frankly, mostly shit for me) coming to a close, I thought I would share some cold, hard, chronic illness-related data analytics. That's right everybody, no cute comics or mushy, untrustworthy feelings here! We, as superior people who believe only in logic and facts and efficiency and data-driven decision making, prefer the things we read to be completely devoid of emotion or opinion. Truly, not only do we welcome the approaching robot overlords, we strive to become them. In all seriousness though, I understand that it can be difficult for people who are able-bodied to understand and quantify the impact of chronic illness. It is difficult to imagine the cost of chronic pain, nausea, exhaustion, fear, and needing to be near a toilet in case you have a sudden bout of explosive poops. Also there are jerk-people who discount subjective experiences and think everyone should "power through" (you know who you are). For that reason, I'm sharing very objective data here: counts of every health-related appointment and test I had done in 2019. Please think about the time and efficiency losses as you view the charts below. Without further ado, here are some infographics I put together to show the breakdown of appointments and tests I had done in 2019. Come with me on this magical fucking journey through the past year. Alright, well, obviously I do go to my social worker a bit. Medical check-ups are a close second though, and jeez, do those take a looooooooong time. As much as I sincerely love Saints Claudia and Lisa, if my body could just get its shit together and I could see them less frequently that'd be fucking fabulous. Obviously, medical professionals are super into taking my blood, which is not ideal because I am frightened of needles. Those 26 blood tests represent me suppressing an anxiety attack by whispering "Invictus" by William Ernest Henley 26 times. The imaging is zero fun as well, and also often included needles. Sometimes, they included ultrasound wands and/or (on one memorable occasion) some sort of cervix-opening-nightmare-crank being inserted into my privates. These also called for "Invictus" mutterings. Ok so, again, I see my social worker a lot. But beyond that - 8 is an upsetting number of times to have to go to the gynecologist in a year. Have you been to your sibling's home 8 times in the last year? How about your best friend's? Because let me tell you, I haven't, but maybe I'd have more time for socializing if I wasn't AT THE GYNECOLOGIST ALL THE GODDAMN TIME. Crap on a cracker, I could save a lot of time if I didn't have endometriosis. If you happen to be wondering about the high number of "other illness" tests, 3 of these were throat swabs/cultures for suspected strep (negative), a few were vitamin D tests (my vitamin D levels are always low even though I take 4000 units a day - I seem to have some absorption issue), and the rest were testing me for things I didn't end up having (like thyroid or liver problems). Thank you for accepting this quantifiable data into your information processor made of electricity and wet meat. Eventually your meat will be phased out because, as these charts have made evident, it is highly prone to malfunction. Beep boop. Fine print disclaimers about this data:
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A few weeks ago, I was talking about some of my symptoms with St. Lisa, my therapist, and explained that there's not much I can do to fix them, so I have to tolerate and manage them as best I can. St. Lisa told me she thought that I was being very brave. I immediately resisted the compliment. Brave? I am not brave. "Brave" is the fireman who rushes into the flames to save a child. "Brave" is the protester fighting injustice and risking arrest, or worse. "Brave" is the knight riding into battle. I think of bravery as almost a precursor to martyrdom - bravery, in all of the stories I've read, means willing to risk yourself for another, or for the greater good. Maybe I used to be a little brave, from time to time. But now I've become so chronically ill and it takes everything I have just to get through a day. I have become too small to be brave. St. Lisa also asked me how often I am afraid. I responded that I was hardly ever afraid - that I just have to do what I am doing, and that I am doing my best. I said I'm sometimes afraid about how my mobility will be impacted when I'm older, but that's about it. ...but the more I consider it, the more I know that that isn't true. This past week, I had a consultation with a highly-specialized, super-fancy gynecologic surgeon. As far as I can tell, this woman is basically Dr. Strange in green scrubs and a sensible ponytail, going around and healing female reproductive organs like a goddamn sorceress. She was attentive, listening to my description of my symptoms closely. She was thorough when describing how she wants to proceed, and how she thinks I may have problems other than just endometriosis. She was confident, explaining that she believes she can effectively excise all my endometriosis lesions, and fix or manage the other issues I may have either surgically or with medications. She was ready to make my pelvic pain her bitch, and crush it under the heel of her very practical shoes. She is, in a word, awesome. ...and I am terrified. I do not want to go to the hospital on New Year's Eve for an intensive test where they'll put me under conscious sedation. I do not want to go to the follow-up appointment after the test with Dr. Lady-Strange to make a surgery plan. I do not want to have an IV put into me so they can put me under for surgery. I do not want to wake up after surgery bleeding, with three new incisions in my stomach and no idea where I am. I do not want to sit at home by myself during recovery, crying quietly, but trying to act sunshiney and for fuck's sake clean this place up just a little bit before Tallboy, my husband, comes home. I do not want to go to the post op appointment a week later and hear my new diagnoses. I do not want to go to pelvic floor physical therapy for a month or two afterwards. I do not want to go through all of this again, and have it all turn out to not have any impact on my symptoms at all, like after my last surgery. I've been lying awake in bed late into the night, curled up, frightened of what will happen to me. Everything seems so out of my control. Everything hurts. I am afraid. I am afraid of needles. I am afraid of pain. I am afraid that every new treatment I try won't work, or will give me horrible side effects, or will somehow damage me even worse, permanently. I am afraid that my friends and Tallboy will get sick of me and leave. I am afraid that the hormonal acne from the IUD I have to have to stop my endometriosis from growing more makes me ugly. I am afraid to leave the house, in case a horrible pain flare strikes. I am afraid to be put under, in case I never wake up. I am afraid to wake up, in case I have to live through another day of horrible pain. I want the ride to stop. I want to get off. I want to hide in my bed for the rest of my life, never setting my feet on the floor ever again. ...but every morning, I eventually put my feet on the floor, and try to make it through the day. Which has me thinking that St. Lisa is onto something. Because if bravery is doing what you have to, even when you're frightened, than maybe it doesn't matter that I'm not saving some innocent child, or saving the entire world. Maybe right now, my bravery can only save myself. Maybe, right now, saving myself is enough.
Content warning: Some mildly graphic descriptions and depictions of pain/violence/blood. I really dislike the "rate your pain on a scale of 1 to 10" question I get every time I encounter a medical professional. I understand the value it adds - the ability to quantify a subjective thing is a powerful tool for tracking improvement and for quickly assessing a feeling that can be difficult to communicate. But it ALWAYS throws me. I remember the first time I had the nerve to ask a medical assistant who told me to "rate my pain" to give me some examples to compare my numbers to. I was having sharp, intense pelvic pain (unidentified at the time, but years later diagnosed as endometriosis - using my current personal pain scale I was probably actually at a 7, and was doing poorly). She gave me a withering stare, as if I was purposely trying to make her day horrible, and said "10 is the most extreme pain you can imagine". This freaked me out! 10 is the WORST pain I can IMAGINE? I have a pretty active imagination, and I've felt some pretty intense pain in my life, so I said, "uh... this is a 3, I guess." Shortly thereafter, when the doctor came into the room, he said he thought I probably just had gas or constipation, and didn't even bother examining me. After all, what sort of hypochondriac comes to the doctor for abdominal pain that's only a 3 on the pain scale??? ...you see how this is not great. Another drawback of the pain scale is that it's not clear if it's a linear or logarithmic or exponential or some other type of curve - is the amount of pain between 1 and 2 different from the amount of pain between 9 and 10? Is a 6 on the pain scale twice as much pain as a 3? I don't know! Also, it's an inherently individualized, subjective measurement, and thus varies dramatically from person-to-person. I'm sure someone without chronic pain would rate their sprained ankle much higher than I do, because for them it's a serious problem, and for me it's a regular Tuesday. And there's no good way to standardize this, especially when the only benchmark given to patients is that "10 is the worst pain you can imagine". Finally, in the pain scale, you don't capture all of the beautiful descriptors of different types of pain that could exist. "It feels like knives covered in sandpaper are filleting my ovaries" turns into a simple 6. "Someone has unscrewed all of my joints, and then screwed them back on incorrectly" is a boring 4. Lying in the fetal position, with tears leaking out of your eyes, while you quietly whisper, "I just don't know how much longer I can bear this" is now a cold, hard 8. There's no art or depth or opportunity for empathy there. So, inspired by Hyperbole and a Half's better pain scale, I have decided to share the pain scale I have come up with for myself below. Bracing Grace's Highly Personalized Better Pain Scale 1 out of 10
2 out of 10
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There you have it, folks - a better pain scale. I highly encourage you to create your own personal pain scale as well. If you do, please share it with me - I'd love to see some real pain scales that have actual meaning!
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Grace Daly
I'm young, hot, and have multiple chronic illnesses. Come with me on this magical fucking journey. Archives
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