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.
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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:
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
3 out of 10
4 out of 10
5 out of 10
6 out of 10
7 out of 10
8 out of 10
9 out of 10
10 out of 10
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!
I must be an incredible actress, because people in my life have often described me as energetic and bubbly. The truth is, no matter where I am or what I am doing, I would rather be taking a nap. I need you to understand that I am not exaggerating when I say this. I'm writing this blog post right now, but I am actually kinda pissed about it and would rather be taking a nap. I'm not certain if it is the hypermobile Ehlers-Danlos syndrome (hEDS), the endometriosis, or the Postural Orthostatic Tachycardia Syndrome (POTS) that makes me always so tired. All of them have chronic fatigue as a common symptom. The most likely explanation is that both hEDS and endometriosis cause me a lot of pain, and being in pain makes you tired. Of course, if being in pain makes you tired, going to work when you're in pain makes you exhausted. I mentioned briefly in my last post (My Chronic Illnesses are a Shitty Roommate) that my primary care provider, St. Claudia, thinks I need to stop working full-time due to the increase it causes in my symptoms, levels of exhaustion, and general feelings of misery. I feel very conflicted about this - I enjoy having a job and excelling at it, and I want to be able to contribute to my husband, Tallboy, and I's finances. But the dark truth is that, even though in our capitalist society every laborer is trading hours of their life for a salary, I am trading more than even that. I am trading every scrap of health and vitality that my body has left. In fact, I usually trade even more energy than my body actually has available. And I'm finding that, even as I make a decent wage at my job, I have gotten myself into debt. Now, being in energy debt isn't necessarily new to me - as I said at the top of this post, I've been tired for as long as I can remember. I've always spent more energy than I have, whether on school, at part-time jobs, or with my friends. But before I started working full-time, I was usually only a couple hundred energy-dollars in debt, and could recoup effectively enough during breaks from school or during other lulls. When I entered corporate America full-time, with its current obsession with continuous improvement and doing more with ever-dwindling resources, there stopped being lulls and there stopped being breaks. My paid time off had to be spent visiting relatives and friends Tallboy and I never get to see because they all live so far away, or getting surgery or other medical treatment for my continuously struggling body. Leaving work early to go to doctor's appointments, though never forbidden, caused coworkers to be obviously suspicious and feel slighted, and there was the ever-present expectation that I work extra hours in the evening to make up for time lost at the doctor's office. The weekend was spent trying to get myself ready enough, healthy enough for the next week, which looks like it's going to be a stressful one! Every week was a stressful one. Every week I fell further behind. Every week, I saw my energy debt grow. Every week my body punished me more. Eventually, my body started to give out. I was wracked with pain even more severe than the chronic pain I've had for my entire adult life, and with this pain came chronic fevers. I was having trouble eating because I shook with constant nausea and constant bouts of diarrhea. My dizziness and confusion increased dramatically and it was getting difficult to drive. Everything that happened to me felt like it was happening to someone else, far away. I could hardly stay conscious through an entire workday, and would silently cry in the bathroom stalls from the pain I was in. I forced myself to go on for months like this, convinced that I was just being weak. Coworkers older than me 'confirmed' this and would gently tease me, saying things like, "oh, we should wrap up this meeting, it looks like Grace is tired and wants to go home!" To be fair, they weren't wrong. I was tired, and I did want to go home. So eventually, I went on disability leave. ...and a miracle happened. For several weeks, my horrifying symptoms continued, but then they started to slowly abate. Nowadays, on my eighth week of disability leave, I feel like a real person again (though my symptoms are still much worse than they were a year ago, and I still have many days of unbearable pain and hope for further improvement). Suddenly, for the first time in my entire life that I can recall, I have days where I'm not several hundred or several thousand energy dollars in debt. And on those good days, I feel like I can do ANYTHING. I could write a book! I could compose a symphony! I could build a vending-machine empire! Surely, I can work full-time again! ...but, as I am kindly reminded by my primary care provider (St. Claudia), my therapist (St. Lisa), my husband (Tallboy), and my very patient best friend (Bestfriend), I probably can't. I can't even go to the grocery store without needing a nap afterwards. As Bestfriend put it, I've been in debt my whole life. And now, all of the sudden, I have $10 dollars, and I feel so rich. "What will I do with this money? I know! I'll take a vacation to Hawaii!" ...I cannot afford to go to Hawaii. Maybe I could get a candy bar, or one of those fuzzy pairs of socks.
I'm trying to learn to be generous with myself. So maybe I'll get both. If your body is your home, then I have a really shitty roommate. See, some people work really hard to keep their homes perfect. These people are your typical health nuts. Most people, though, just do a medium-to-minimal amount of work to keep their homes good enough to live in. This is most able-bodied people. Every once in awhile, you might have someone who trashes their home to the point where it gets really damaged, with mold or holes in the wall or something. Making unhealthy choices can definitely lead to that. But I have a shitty roommate, who comes in and fucks up my home for no reason whatsoever. You might be thinking, "oh, but what if I get a cold or something? That messes up my body-home!" And yes, it does, but having a cold is more like a crappy house guest. Your crappy house guest will leave in a week or so. My shitty roommate is here forever. When I was younger, my shitty roommate mostly stayed in its room. Every once in awhile it would come out and throw some trash around, but to be honest, I didn't even think I had a roommate - just a frequent crappy house guest. When I got into my later teen years, my roommate started to get angry that I wouldn't acknowledge it. It would frequently come out to break my stuff and piss on the rug. I would still deny I had a roommate though. I thought that I just lacked self-discipline... after all, I didn't have proof that it wasn't me who pissed on the rug. It was probably my fault somehow that there was piss on my rug. Nobody else I knew had piss on their rugs. I just had to try harder to not get piss on my rugs. Sometime in my early twenties, my shitty roommate decided to leave its room and never return, spending 100% of its time in my room or the shared living spaces. My shitty roommate started to fuck up the place with a real sense of purpose - and every time our home was a mess, it would make my shitty roommate furious, and it would trash the place even more. This lead to a really shitty cycle. Eventually, I started to go to roommate eviction specialists. However, a lot of the roommate eviction specialists had trouble finding my roommate, or thought I had a different type of roommate than I actually had, or thought my roommate was all in my head. When I had to stay home and clean up after my roommate instead of going to parties or to work, people thought I was being lazy or melodramatic. After all, they had never seen my roommate and most people don't have roommates. Why was I making such a big deal about my roommate? Why couldn't I just clean a little more regularly? A lot of people who always kept their houses immaculately clean kept telling me all sorts of different things I should try. Have I cleaned with vinegar instead of harsh chemicals? Have I tried feng shui? Did I know how to do laundry? Nothing ever worked. I felt very alone, with only a shitty roommate that I couldn't prove existed for company. Eventually, I started to find roommate eviction specialists who tried harder to locate my roommate. These roommate eviction specialists do everything they can to help, but can't get rid of my roommate completely. Even though I still have a shitty roommate, at least now I can point to it for people who don't believe me, and I know things that I can do to slow it down when it's trying to ruin our home. Recently, my best roommate eviction specialist told me that I likely can't keep working - that for me to keep my house from falling apart as my shitty roommate tries to destroy it, I'm going to have to work at cleaning it full-time. I'm really upset about this - how could a roommate I didn't even know existed ten years ago keep me from leading the life I want to lead? Did I do something to deserve this shitty roommate? Why did this shitty roommate choose my house to shack up in? I'll probably never have a good answer for those questions. Even if I had the answers, it wouldn't change the fact that this is the only home I have, and so I don't really have a choice about what to do. My mental-health roommate co-habitation specialist has been helping me to understand that I shouldn't keep battling my roommate. I need to get know my roommate and learn to listen to it in order to find any kind of peace. So that's what I'm going to be trying to do. Come with me on this magical fucking journey.
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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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