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.
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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.
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.
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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