It's been a little while since I made a post. I've been having health problems (as always), there's a global pandemic, and also I moved into a new house and the basement kept flooding and also (surprise bonus stressor!) one of my pets had a medical emergency and it turns out he has both pancreatic and adrenal tumors.
I actually wrote an entire post a few weeks ago that was pretty cute - it was all about how having a chronic illness and trying to deal with regular problems, like your basement flooding or your pet needing to go the emergency vet, makes everything extra-difficult. There was a fun metaphor about how my shitty roommate (a personification of my chronic illnesses, for you uninitiated) keeps changing the difficulty setting of the "video game" of my life to "hard mode" on me, and there was a nice uplifting message at the end about how you get more experience points in hard mode. Or something like that. Fuckin'... I dunno. I kinda stopped caring about that post. Every time I sat down to illustrate it, I just couldn't do it and would go clean the bathrooms or cook a nice meal or just stare at the ceiling or whatever. Because George Floyd got murdered by the police. And then protests got met with even more police brutality. And in a time when people of color (especially black people) can't fucking safely exist in my country I feel like a fucking tool for making some friendly, uplifting, rose-fucking-tinted-glasses illustrated blog post about how carrying boxes out of my basement makes me limp for a little while. Astute readers would know from looking at my self-illustrations that I'm pretty goddamn white. Not only am I white, I'm blonde! And not fat! And most of the time, my disability is invisible! And, not to toot my own horn, I'm not bad to look at. I'm cisgender, well-educated, fluent in English, appropriately (though punk-ly) groomed and dressed, not poor, married to a super hot cis-male engineer, and on and on - basically, aside from having a body that is just trash and some trauma in my past, I've been dealt a decent hand and have a lot of privilege. However, like all the Cool White People (TM) feel the need to profess, I'd love to add: I'm not completely clueless about police brutality and systemic racism! I've got a sign that says "Be Anti-Racist and Value Black Lives" in front of my house. I've donated to bail funds. I've read books about racism. And yet... the privileged world I live in leaves me still clueless enough that, when watching the recent Last Week Tonight episode about police brutality, a quickly-mentioned statistic from a 2019 article in the journal "Proceedings of the National Academy of Sciences of the United States of America" profoundly surprised me: in the United States, "over the life course, about 1 in every 1,000 black men can expect to be killed by police." Fuck. Look, one of the main reasons I started this blog (other than my therapist telling me to) and why I'm so outspoken about having an invisible disability is because I want people to realize that invisible illness isn't that rare, and that people with disabilities are just regular people. I think that I am, for the most part, a likeable person that lots of middle and upper class privileged and powerful people find it easy to relate to. I want them to know that I'm great and likeable, and that I have a chronic illness, that I have a disability, that I have Ehlers-Danlos Syndrome and realize, on some level, that people with disabilities are all around them and should be given the benefit of the doubt. A lot of the time, people are curious and want to ask me questions about Ehlers-Danlos Syndrome, which I'm always happy to answer. One frequent question I get is, "how common is EDS?", so I've always got the statistic at the tip of my tongue: about 1 in every 5,000 people have EDS (if you include all the sub-types) according to the U.S. National Library of Medicine. Usually, people respond by saying that 1 in 5,000 isn't really that rare, and I agree with them! I certainly feel like people with Ehlers-Danlos Syndrome are everywhere - celebrities like Sia and Jameela Jamil have EDS, I've got loads of friends online with EDS, and after I started publishing this blog, I had people I already knew reach out to me and tell me they have EDS too! So, if EDS is everywhere and touches so many lives, and "everywhere" is this instance is 1 in 5,000 people, and 1 in 1,000 black men in America are likely to be killed by the police... holy shit. Holy Shit. Holy SHIT. Look, if you've ever read my blog and felt any compassion for me, I need you to take some of that compassion and funnel it towards black Americans. Because here's the thing - your compassion for me is wonderful, and I'm so grateful, and it makes my heart grow three sizes when someone tells me they're thinking about me, or praying for me, or were moved by my words - but I gotta be honest, besides making sure that I'm getting the help I need from my doctors/physical therapists/etc and that I have enough financial support to not work full-time, there's kinda fuck-all that anyone can do to help. But there are LOTS of things that can be done to change the systemic racism that is killing black people. Short of me not being born, there's nothing that currently exists that could have prevented my EDS. There are a lot of things that could have prevented George Floyd's death. I would like to see murder at the hands of the police be rarer than my "rare" disease.
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In a choice that is perhaps a bit too on-the-nose for the current coronavirus pandemic, I recently read the book Blindness by José Saramago. In the story, there is a communicable epidemic of blindness (name drop!) that suddenly affects almost everyone in society. The government tries to control the epidemic by locking everyone who becomes blind in a quarantine and offers those in quarantine very little support - basically, they are waiting for them to die. Spoiler alert: it doesn't work, and society crumbles. Disclaimer: I'd like to formally recommend that you not actually read Blindness by José Saramago at the present time. Ionno - the back of the edition that I have says that it's a "powerful portrayal of man's worst appetites and weaknesses - and man's ultimately exhilarating spirit", but I found it pretty heavy on the "worst appetites and weaknesses" and pretty light on the "ultimately exhilarating spirit". In the current climate, out of respect for your probably-already-frayed nerves, I'd recommend something more like this (talk about exhilarating spirit!). While locked in quarantine, the building the newly-blind people are all being held in is eventually taken over by a group of also newly-blind thugs who steal all the food, murder, rape, and basically are the worst. The group of thugs have a superpower - they have a member of their group who did not suddenly go blind due to the mysterious communicable illness, but instead has been blind for years. From page 146 of the book: "So there was a normal blind person amongst these blind delinquents, a blind person just like all those people who were once referred to as being blind... They were certainly lucky, not only had they won a clerk in the raffle, they could also use him as a guide, a blind person with experience as a blind person is something else, he's worth his weight in gold." Obviously, this made me think of the 2012 superhero film "The Dark Knight Rises", starring Tom Hardy as the Batman villain Bane. In this beloved classic piece of cinema, as Batman tries and fails to do his "hide in the shadows" routine, Bane says, "you think darkness is your ally? You merely adopted the dark. I was born in it. Molded by it. I didn't see the light until I was already a man. By then, it was nothing to me but blinding. The shadows betray you because they belong to me." It's basically a mic drop moment, but actually it's a grab-Batman-by-the-throat-and-throw-him-to-the-ground moment. As I think about blindness as a superpower and Bane being born into darkness, I'm also seeing a lot of able-bodied folks on social media struggle with social distancing, because they are finding working from home challenging and finding themselves incredibly isolated and lonely for the people, places, and events they care about - this, of course, isn't addressing people who are struggling due to loss of work, who have an incredibly heavy weight of additional stressors piled upon them. I'm also seeing some people with disabilities being pissed that now that there's a pandemic, able-bodied people are suddenly being given work from home options and opportunities to socialize remotely that would've been life-changing for them. As you know if you've been following this blog, I've been having a pretty crap year. I haven't worked since the end of September due to my chronic pain and other symptoms, and for years now I've been cancelling and limiting what sorts of activities I can do because of my chronic illnesses. I, like other people with disabilities, am a little pissed at how quickly everyone is boarding the work-from-home-and-socialize-remotely train - it feels like, with a little bit of effort, all the able-bodied people could have been extending me these courtesies all along. Of course, I am also frightened - I don't want myself or the people I care about to get sick(er). Mostly though, I've been amazed by how little my life has changed due to the shelter-in-place order in effect in my state. My symptoms mean I hardly can go anywhere or see people anyways - the biggest change to my schedule is that now all my doctor's appointments are through telehealth. I've actually been selfishly delighted by the stay-at-home order. Bands have been live streaming awesome concerts I definitely couldn't have otherwise seen! Museums that I couldn't have otherwise visited are posting video tours! My husband is home with me all weekend instead of partying with his friends! My friends are calling me, and posting in baking groups with me, and remotely playing video games with me! And now I realize... I am the already-blind man. I am Bane. At the end of Blindness, everyone struck by the mysterious blindness-plague suddenly gets their vision back, and the blind people with experience as blind people go back to being regular blind people. At the end of The Dark Knight Rises, Bane is killed and Batman drinks wine with the leading lady in Italy. At the end of this pandemic, I imagine that for the most part, the rest of the world will go back to only socializing in ways that are, frankly, physically daunting and thinking people who work from home are lazy.
But maybe, at the end of this, you could go ahead and visit your friend who has a disability at their home. It's hard for them to leave, and (as you'll know by then) it gets lonely. As a general rule, I think prejudice is bad - I am greatly opposed to sexism, racism, ableism (duh), homophobia, etc. Go ahead and think of any sort of negative preconceived notion someone could have against a group of people, and it's a good bet that I'm going to think that having that negative preconceived notion is bad, and I'm going to search for it in myself and do my best to destroy it so I can be a more loving, accepting, understanding person. Except for male gynecologists. For the last seven years, I've thought male gynecologists could all go fuck themselves. I've had pretty bad experiences with three different male gynecologists in my life, which were:
With these experiences in mind, when Dr. Lady-Strange referred me to see a male urogynecologist who she said she trusted and thought was the best, I was skeptical. My skepticism grew when I saw his name and picture. Dr. Norbert Owen Body*. Dr. N. O. Body. Dr. Nobody. In his picture, his eyes seemed to bore through my skin, my organs, my bones, and into my soul, and then out through my back so ultimately he was looking at the wall behind me. That is some Batman villain shit. I had a follow-up appointment with Saint Claudia (my primary care provider who I literally trust with my life) anyway, so before scheduling with Dr. Nobody, I went to talk with her. She confirmed what Dr. Lady-Strange said: that Dr. Nobody was an expert and very well-respected and well-liked by his patients, and the best urogynecologist for me to see in the area. ...fuck. Fine. I'll schedule the appointment. As I mentioned in my last post, I've been going to pelvic floor physical therapy, which has been helping, and I've been hoping that the root issue I'm facing is Pelvic Floor Dysfunction rather than Interstitial Cystitis. I don't want to have to restrict my diet, and also I feel like I'll have more power to treat Pelvic Floor Dysfunction than Interstitial Cystitis. Also, I'm frightened of catheters. All of this adds up to me walking into this appointment with a lot of anxiety. ...which was refreshingly, blessedly, unneeded. When Dr. Nobody walked into the room, I was relieved to see that his photo was very unflattering because he had regular human eyes. The first thing he said was something like, "I understand that you're a complicated case, so I've made sure to clear extra time on my schedule to talk with you." He then allowed me to tell him, in my own words, what my symptoms are and their impact on my life, and what treatments I've tried. He did a great job of not interrupting me except to ask important clarifying questions, and really seemed to believe me and take everything I said at face value. Best of all, he knew a lot about hypermobile Ehlers-Danlos Syndrome. And I mean A LOT. Not in the "I saw that you have hEDS on your chart so I googled it before I walked in here" way. Not even in the "I watched a short lecture on youtube from a medical conference on hEDS" way. In the "I have actually studied this and understand it on a deep level" way. His nurse later mentioned to me that he has a particular fondness for complicated patients and enjoys the challenge, and that she could tell he was excited to be the doctor treating me and would definitely be researching my case on his own time. What a gift. And, the most delightful gift of all, he believes that my hEDS is at the root of these issues and that I do have Pelvic Floor Dysfunction. He explained that though I do have a diagnosis of Interstitial Cystitis, that there are different subtypes, and the subtype I have is called the "Pelvic Floor/Myofascial Pain Phenotype", which walks hand in hand with Pelvic Floor Dysfunction. This subtype shows less bladder inflammation than the other subtypes, and usually treatments involving bladder instillations don't work well (so, no catheters!). Also, usually patients with this subtype don't have many diet sensitivities (so, there is a very low likelihood that I'll have to restrict my diet!). Treatment involves a lot of pelvic floor physical therapy and controlling pain effectively to help calm down overactive nerves and muscles. Well, I'm always down for physical therapy and for feeling less pain. Sign me up, Dr. Nobody. The tall thin doctor and the glamourous primary care provider shake hands, while the glamorous primary care provider says, "Welcome to the club, Dr. Nobody." They are standing near a sign which reads "Grace's Healthcare Team Bi-Monthly Mixer", under which several other healthcare providers are gathered and chatting. Ultimately, the conclusion I've drawn from this experience is that prejudices are bad. Maybe Dr. Nobody will even defy the odds and get "canonized" one of these days. The other conclusion is to ask medical professionals you already trust to give you recommendations whenever possible, so that weird men don't tell you that your vagina is as snug as a bug in a rug. *Dr. Norbert Owen Body (Dr. Nobody) is not his real name. Out of respect, I try to avoid identifying anyone too specifically on this blog. I do assure you, though, that Dr. Nobody's real name is incredibly Batman-villain-esque.
Normally this blog features (hopefully) humorous drawings, stories, and perspectives regarding my experiences living with a chronic illness. However, I'm breaking from tradition today with a call to action that I think has the potential to work very well to help slow the spread of coronavirus, and also to help lots of low-income people. I think slowing the spread of coronavirus will be beneficial to everyone, including people with disabilities, so I've decided that it's okay to break theme. I'm also going to try to keep this post more swear-word-free than usual, in the hopes that it (or at least my plan) get shared. Unless you've been living in a hole, I'm sure you've heard the recommendations that everyone who can should work from home and socially distance themselves in an attempt to slow the spread of the coronavirus. Crucially, these measures won't prevent everyone from getting the coronavirus - most of us are probably going to get it eventually. These measures are important because it will slow the rate of the virus's spread, and will allow hospitals and healthcare providers to not be overwhelmed. Following these measures will dramatically reduce the death toll (here's an article that, in my opinion, breaks this down in an easy-to-understand way). I've also seen a fair number of posts of social media that are addressing that directives to try to stay home and socially isolate are difficult/impossible for low-income people (here's an example), and that often only upper-class people can do things like this. These posts are making an important point - in the USA, there is no guaranteed paid time off for illness, and just about all workers in the service industry will not get paid and risk losing their jobs if they don't work when they're ill. Since so many people in America live paycheck-to-paycheck (according to a 2019 survey conducted by Charles Schwab, that number is 59%), this is terrifying. If these people contract coronavirus, they will either lose money they desperately need, or they will continue going to work and spread the virus. It's my opinion that now would be the time for government to step in and find a way to guarantee that employees who are sick or who are non-essential to a functioning society practice social distancing. However, we're not there yet - the quick passage of a paid sick leave bill was blocked because the funding for sick leave was expected to come from employers, and the Sen. Lamar Alexander (the senator who blocked the bill) believed that the government should fund this sick leave. So, while we're waiting for a better solution, what can everyday people like you and me do, other than the obvious things like wash our hands and socially distance ourselves as much as possible? Well, if you're reading this blog post, you probably have access to the internet. And if you have access to the internet and sometimes buy things, I've got an idea - I think we should vote with our dollars (and I don't mean by donating to Bernie Sanders's campaign, though please also do that). My plan is based on one surprising fact I learned in my five-ish years working for for-profit corporations: these corporations really care about your complaints and about what you write in those customer surveys. They care A LOT. I have been in meetings where the contents of one negative review are discussed by highly-paid professionals for over 45 minutes. I worked for one company where a customer service representative getting 4 star reviews instead of 5 star reviews was grounds for termination. They care that much, folks, which seems insane to me, but the fact is that our messages, sent directly to these corporations, are one of the best ways the corporations have to learn about how we choose to spend our money. And they want us to spend our money on their products and services. Oh, do they ever want that, so, so very muchly. So here's what I've been doing:
Here's a sample email I sent: Obviously me doing this by myself won't make much of a difference. But if we could get lots of people contacting lots of corporations, encouraging them to make the right choice, I think we could actually make a difference and make corporations realize that there is real economic value in giving their employees paid sick leave. Come with me on this magical *swear word redacted* journey. UPDATE March 14, 2020: I got a response from eShakti's CEO promising that all employees had paid sick leave! Success! If you need a new dress or skirt, I know who you should order it from!
I usually like to humble-brag that it is impossible for me to procrastinate. If I try to avoid doing something, the knowledge that I have to do it will weigh on me, heavier and heavier, until it is easier for me to just do the thing I don't want to do than it is to carry the weight of the guilt about not actually doing the thing I know I should do. I must have been working out my guilt-carrying muscles though, because you lovely folks are overdue for an update about the results of my surgery, and I have been procrastinating writing up this post like a goddamn guilt-powerlifting champion. I'm not 100% certain why I've been avoiding telling you about my surgery results. I've been telling myself that it's because I've been busy - which I have been! I've been going to lots of follow-up appointments, and physical therapy, and doing paperwork for my disability leave, and my husband and I are in the process buying a little house and moving. However, I've also had time to write a detailed account of my poopsplosion and to read the entire Harry Potter series (including the Cursed Child, which is not as bad as I remembered it being), so obviously I could've written this up if I was so inclined. And I didn't. The results of the surgery are as follows:
Instead, the ending I got was something along the lines of, "ok, well, the good news is your uterus looks SPIFFY, but also now you've got ANOTHER incurable chronic pain-causing syndrome and you're going to have to stop eating all your favorite foods like tea and chocolate and alcohol and spices and citrus for probably forever, and also I don't really treat that, so here's a referral to a different doctor, his next opening is in March." This was a less-than-satisfying ending, and I confess that I have been resisting it and still eating my citrus fruits, even though I generally advise people to trust their doctors and to trust scientific consensus. But see, here's the thing: I don't really have the right symptoms for interstitial cystitis. Yea, yea, I pee all the time like a goddamn racehorse, but I also drink a crapton (like 100-120 fluid oz) of liquid a day to keep from feeling dizzy due to POTS. My pelvic pain is located more at the sides of my pelvis, in and around my hip joints - not in my bladder like it is for typical interstitial cystitis. I don't have the burning pain while urinating, or any relief when my bladder is empty. Obviously, my bladder bled with the scope and hydrodistension, which indicates inflammation, but that inflammation could be a response to something else being wrong, rather than being the source of my pain. So I started to fall down that most inadvisable of rabbit-holes - self-diagnosing using the internet. Dr. Lady-Strange had previously remarked that my pelvic floor muscles seemed too tight and that I'd need pelvic floor physical therapy anyways, so I started there. I found something called Pelvic Floor Dysfunction, where the pelvic floor muscles are too tight and can't relax. This causes all sorts of symptoms that I have, such as chronic constipation, bladder inflammation, pelvic pain, hip pain, low back pain, pain with intercourse, and on and on. In fact, Dr. Kenneth Peters (Chair of Urology at Beaumont Hospital in Michigan) has even written this gem: “Only a fraction of patients with the key symptoms of IC/BPS – urinary frequency, urgency, and pelvic pain – have ulcers within the bladder. And many of the patients who are diagnosed with IC/BPS are found not to have bladder pathology as the name implies, but rather pelvic floor dysfunction.” And so, since I had to wait until March to see the new urogynecologist anyways, I decided to take matters into my own hands and find a pelvic floor physical therapist who could examine me and tell me what they thought, and start treating me if they agreed my pelvic floor seemed to be dysfunction-ing. I did me some intense internet searching, and found a group of pelvic floor physical therapists nearby who not only kick ass, but also accept my health insurance. On my first meeting with the pelvic floor physical therapist, the heavens opened and angels sang as the therapist said that pelvic floor dysfunction is common in people with Ehlers-Danlos Syndrome, and that she had seen many patients with exactly my symptoms, and that she was able to help them and that she was certain that she could help me. Thus, I have started going twice a week to the most awkward physical therapy that I can conceive of. And, like a molasses-slow miracle, I am doing a bit better. I have a little less pain, a little more energy, and a lot more hope.
We'll see what the urogynecologist has to say, of course - maybe he won't agree that pelvic floor dysfunction is at the root of so many of my issues. But I hope it is. I really want a satisfying end to this chapter. I also want to eat citrus fruits. Content warning: A lot of poop jokes. Last week, I had my second-ever surgery. The results of this surgery were surprising and in some ways frustrating, but I'm going to get to that in a later blog post after I've had a chance to attend all my post-op appointments and come up with a new treatment plan with my doctors. Today I have a real treat for you folks. See, before this surgery, it was revealed to me that I would have to do a bowel prep so that in case there was any need to operate on my bowel, they could do so safely. This is a reasonable request. However, I have never been fond of shitting myself, and so I tried to google what the effects of the 10 ounces of Magnesium Citrate laxative that I was ordered to drink were likely to be. This was a less fruitful search than I had hoped for. Aside from chipper assurances that a bowel movement would be produced in 0.5 to 6 hours and recommendations to "have access to a toilet" (and a few tales that made vague statements about horrors to come), I found no real information about what to expect. After my experience, I walk away with a new resolve: the people need to know. They shall tremble in darkness no longer. The bright light of the truth shall be cast upon them, and they shall bask in the warm rays of knowledge. The consequences of consuming the forbidden fruit of cherry-flavored magnesium citrate shall be trumpeted far and wide, and all shall be glad.
After a long battle with diarrhea, Grace succumbed. The starry vault was then torn asunder, and she ascended directly into heaven.
JUST KIDDING. Turns out Magnesium Citrate is a one-way ticket to hell.
I've never been diagnosed with Generalized Anxiety Disorder, because I don't have it. Nevertheless, I get anxious about stupid things that shouldn't cause me anxiety all the goddamn time. On top of this, I suck at aiming my cannon filled with anxiety and spite in any sort of productive way, and so it often tends to cause a huge pointless goddamn mess all over my poop deck instead of sinking enemy ships or whatever the fuck cannons are for. Before I was diagnosed with my physical illnesses, my anxiety was incredibly confusing - it would pop up out of nowhere for short bursts every day, always when I was already feeling "sick", and I couldn't place what events were triggering it. But I could feel it sidling up behind me and breathing down my neck, like a creepy guy on a crowded bus. Now that we know I have hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS), me being anxious isn't particularly surprising. In fact, one study showed that 70% of hypermobile patients have some type of anxiety disorder, whereas only 22% of the control group did. There are a lot of potential causes for the correlation between hEDS and anxiety. It's been suggested that people with hEDS feel physical discomfort (like hunger, cold, and pain) more intensely than people without hEDS, and that this could cause anxiety responses. It's possible that, as hEDS is a genetic disease, there's also a genetic predisposition to anxiety that comes with it. It's possible that there are physical differences in the brains of people with hEDS that make them more likely to have anxiety. It's also incredibly likely that being in pain all the goddamn time just makes you feel pretty goddamn anxious. However, the working theory about my anxiety is pretty closely linked to my POTS. See, because of the hEDS, I'm really stretchy. My skin is stretchy, my joints are stretchy... my veins are stretchy. Too stretchy. I'm like Stretch Armstrong or Mr. Fantastic, except their real superpower was that stretching really far didn't injure them. Being stretchy does hurt me. So aside from all the bruising and muscle pain and joint injuries from my stretchiness, my stretchy veins also allow my blood to pool more than it should. My blood pressure is always low - 90/60 is a "normal" blood pressure for me, whereas 120/80 is the usual normal measurement. If I get dehydrated or stand up too quickly, my blood pressure drops even lower because all that pooling blood isn't circulated the way it ought to. So all that blood pools down in my lower extremities instead of going to my head... and my brain loses its fucking mind (pun intended). Convinced that I am at death's door, my brain decides to nuke my whole body with a flood of adrenaline. To my brain's credit, this does solve the low-blood-pressure problem... but it introduces a whole new problem. My body, flooded with adrenaline it didn't expect, is now ready to rumble. ...but I am not ready to rumble. I am probably dehydrated, and definitely tired, and am medically not permitted to partake in contact sports anymore (I miss them). So my brain makes another fun executive decision and chooses to freak the fuck out, but emotionally this time. It will pick a thing and PANIC. At a thousand miles per hour, it will rage and rush and ruminate on the thing until all of my being is vibrating in dread of the thing. It will do this until the adrenaline wears off, at which point I will feel completely fine emotionally again. This can happen several times a day if I'm dehydrated enough or in a lot of pain. It took me awhile to figure out that the anxiety pattern wasn't actually kicked off by events that happened to me, but caused by physical discomfort. My management of the anxiety has gotten a thousand times better now that I've realized that. However, it was a mystery for long enough that I developed some pretty shit coping mechanisms, my favorite of which is the subconscious anxiety-target-selection method. See, I imagine a normal person's anxiety-target-selection method looks something like this: My subconscious, however, decided to cope with my ridiculous and pointless adrenaline-anxiety by taking all the anxiety that I could feel about something reasonable and scary, and pointing it at something that I feel like is in my control instead: In a way, this is a great kindness. All the fear I should have of something scary can be displaced by a fear I feel more prepared to manage. In practice, it is fucking ridiculous. I am having surgery for endometriosis in less than a week. Consciously, I am terrified that the surgery won't work or that something will go wrong. Reasonable fears, for a reasonable person. But subconsciously? Subconsciously, I have been worrying about how to get my hair done. See, I've decided that it's a little too long and that i don't love the color, but i cant decide if i should get it trimmed just a little or maybe i should get a few inches taken off so that it doesnt get too long too quickly or maybe i should change the style entirely and get a short mohawk like i always am thinking about or maybe i should just go for it and get a perm and for the color im not sure either see im blonde but it gets too dark in the winter so maybe some highlights or even a balayage but im actually not certain exactly what a balayage is and is that more expensive than highlights or maybe i should go red because i look great as a red head but then red dye stains everything and requires so much maintenance and im not sure if I want to go to the salon that often and maybe since im not working I should just do a pink ombre like i used to do but that also takes a lot of work or maybe if i do the mohawk i could just do a big streak of red which would be pretty cool but if i change my hairstyle do i have to change the way i draw myself for the blog and will that hurt the continuity of my drawings and is it irresponsible to get an expensive hairdo when australia is on fire and should i just donate all my money to koalas and orphans and ferret rescues and to groups that research rare diseases or should i save all my money to pay for all these doctor bills instead but ugh have you noticed that my hair is a little too long I'm scheduled for surgery next Wednesday. I'm worried about it, because you never know what's going to happen and it feels completely out of my control.
And I'm also scheduled at the hair salon this Friday. One thing I can control is looking like a dime on that operating table. I've been feeling very poorly as of late. It seems my endometriosis just keeps getting worse and worse, and I had an incredibly bad flare-within-a-flare over the last three days. Pain so bad that I'm having weird ideas that don't make a lot of sense, crying when nobody's looking, trying not to vomit, fevers, diarrhea - the whole shebang. When I get bad, I am a veritable crudités platter of symptoms. I don't have an entire post for you, but I'm trying to keep this blog going and post at regular intervals. Therefore, I'm sharing some art I did, which is weird for me, because I mostly consider myself shit at art. But it's all I've got to share, and I think it's less bad than my usual art, and anyone who has been reading this blog has already been exposed to my crap art, so here it goes. Above, you can see a truly mediocre painting of two prescription pill bottles, which instead of instructions, read: "But I am very poorly today & very stupid & I hate everybody & everything". This is an actual real quote that Charles Darwin actually really wrote in a letter. I love this quote - Charles Darwin struggled with health issues and was actually a bit of a recluse. The knowledge that Darwin could be angry and miserable and sick but still make such valuable contributions makes me feel a little less bad about how often I am angry and miserable and sick. Here is a less-mediocre-but-still-meh painting of a person wearing a little yellow raincoat rowing a small boat on a stormy sea. Underneath the person is the last two lines of the poem Invictus by William Ernest Henley: "I am the master of my fate, I am the captain of my soul." I've made a reference to this poem before on this blog - I love it and I use it as a sort of "pain mantra". I'm sure I'll devote an entire blog post to it someday.
Anyways, there you have it folks, some amateur art that is at least tangentially chronic illness-related. Enjoy it, and then go look at some better art. Might I recommend an art museum? They're these cool places where you can see art by people who are good at art, thoughtfully curated and displayed by people who understand and appreciate art. Also, the art is actually there, instead of just bad pictures of the art, which is what this blog primarily features. I know, I know, it sounds too good to be true, but I promise, art museums are as real as my chronic illnesses. Which is to say, very real. 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:
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.
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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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