TMI because fuck patriarchy…
I just got off the phone with a debt collector, calling on behalf of Northwestern, and my anger is swelling in my throat and I don’t know if I will be able to swallow it in a timely manner. So hello, here is another TMI update on the health and money woes in my life. Yes yes, for people who have been following this blog for years (um, why?), I still have issues walking, sitting, eating. While that is more than enough reasons for me to angry — all the time, actually, so that my normal includes trying not to glare at the ease at which my co-workers walk around the office– this anger is quite different. Also, I cheat with my food now more often — for example, last night I ate some pizza and my raging heartburn, choking on my phlegm bullshit went away around 3am, so hey, not as bad as last year.
But wait, why would I do this? I needed some comfort, and it’s motherfucking PIZZA okay, it is even more delicious now that it is forbidden. Also, sometimes I can eat it no problem. I digress.
I currently owe roughly $600 for a 30 minute doctor’s visit with a specialist who did absolutely nothing except humiliate me. It’s been more than six months now and I can still see the look of disgust in her face — I am tearing up right now as I type this, calling forth the memory. If I had insurance at the time, perhaps the price wouldn’t sting as much. (Last year BCBS canceled my insurance because they didn’t believe I was an American citizen, this year, because they stopped offering that plan through ObamaCare. Thanks for nothing, assholes!)
But on to the horrible healthcare professional part…Earlier this summer I went to visit a specialist downtown, as recommended by my doctor. The one I was originally referred to, the receptionist on the phone told me, only dealt with upper GI so she recommended I see a different doctor who also dealt with lower GI issues, which fit with my symptoms. What a mistake. I had to wait more than a month, and when the day arrived, waited again in her office for some more time.
The visit started normal enough. I told her of my symptoms, and mentioned sometimes it really hurts during sex, and to sit, and how the pain that sometimes goes down my right leg becomes numbness and weakness, coinciding with the pain in my ass/hip/lower back. I also told her how a year ago, when I took prednisone for a week, it was one of the best weeks of my life — I still think of that week and how little pain I had. She felt around on my stomach and uh huh-ed a bunch as if she was listening. When I finished, she said I probably have some mild IBS (I wish!), advised I continue taking PPI pills, and then, “And you should probably go see a gynecologist about…. that.” Her forehead wrinkled up in disgust when she said this, her “that” all flat as if she was judging me for something I did. “Make sure everything is okay down there.”
It’s hard enough to talk about some of my symptoms because they are already embarrassing enough, but that look of hers? Totally unnecessary. I remember getting immediately ashamed but still nodded affirmative. The problem is my ass not my vagina, I screamed in my head.
So off to the gynecologist I went, to Planned Parenthood, of course, the only affordable outfit out there that won’t charge me exorbitant fees for basic services. It took me a few weeks to get an appointment. The gynecologist there was a kind old lady that chatted with me while prodding deep into my pussy like it was no big deal. She found nothing to be alarmed about up there — it was all “perfect” and working and “many women would kill to have that pH.”
My urine sample, however, revealed I could be very dehydrated, as I had a large amount of ketones and blood in my urine. (I sometimes have blood in my poop, so hey, why not in my urine too amiright?) She prescribed some antibiotics and UTI meds which relieved some of my symptoms days later, and I donated a small amount to Planned Parenthood on the way out. Everyone there was professional and kind and took my concerns seriously and didn’t make me feel like I was gross subhuman.
But $600 for that horrible experience at Northwestern? I will never forget it. Further, I will be reminded of it for months to come now that I set up a payment plan to finally pay it all off. I am also never going back to Northwestern, as long as I can help it.
Epilogue of sorts:
I am hoping the next entry in this TMI series will be a definitive diagnosis. Before my insurance was canceled my primary healthcare physician referred me to a neurologist to investigate whether I have nerve damage in my leg related to that time I was hit by a car while on my bike many years ago.
I have insurance through work, now so come January 1st I will finally go to a neurologist NOT at Northwestern, as well as demand my doctor schedule me for an MRI or EMG. I still haven’t gotten one all this time. (X-rays years ago revealed sclerosis on my hips, both sides.) I really doubt I have nerve damage in my leg + depression + serious case of GERD + asthma at this point. I’ve been taking the Wellbutrin for more than a year now and I love it, but the extent of my tiredness doesn’t fit into depression. The constantly feeling like I am in a fog bit, ok that fits, but others, no. I get out of breath way too easily, am constantly dizzy or nauseous, pass out on the couch immediately after any vaguely vigorous exercise that gets my heart rate up, have muscle spasms that are no longer just confined to my right leg, etc. I have mentally prepared myself for all sorts of possibilities like epilepsy, multiple sclerosis, Crohn’s disease, some bullshit cancer or tumor, and even diabetes… sometimes I get into moods where I feel like I am running out of time, but maybe, oh please maybe, this is all in my head somehow.
Despite all this, I’ve been working on my moonwalk…and it’s not half bad.
It’s been a while since I updated this blog with a post on my personal problems, as if you, dear Internet, were a kind and old friend. Maybe you are. I have some good news, bad news, and neutral news from this last year to share with you. And yes, my crotch is still relatively fine, thanks for asking.
Since my last post, I’ve managed to get health insurance this May through ObamaCare, though that was canceled last month. The government had BlueCross terminate my insurance because they didn’t believe I was an American citizen. The irony!!! Their issue wasn’t my birth certificate, but my green card number. I never put my number on the healthcare insurance marketplace form, because I don’t have it, it is lost to me. For some inexplicable reason, this little laminated card was super important to the government. I do have a social security number and American passport and pay my taxes, but because the green card number was missing, my claims of American citizenship were suspect. (If you’re wondering, I became naturalized when I was 16 somewhere in New Jersey, with my mom.) That stressful bureaucratic bullshit was resolved last week and I can now go through the delightful process of re-enrolling for health care insurance. Yay! Times like these really don’t help me convince myself that my life is not one big cosmic joke. Read the rest of this entry »
I just deleted that bad tweet. It was bad because I am trying to have an honest discussion about mental illness and that hashtag trivializes it, so yeah, I do feel bad. I made a shitty rhyme & joke using hashtags, and I apologize! To no one, and everyone.
I can’t believe I made two of my previous posts private the other day. Part of me was ashamed– the mental health issues, mostly — and I felt like they were unfinished bits, which was why I took them down. But that was me doubting myself. Diary-like entrees don’t have to be perfect personal essays. I can always use the material again for a healthcare or mental health post, and the republishing of some bits shouldn’t be a problem if I do sell a piece anywhere. Now I am ashamed I hid them, to think that I faltered like that. I am ashamed I was ashamed.
I am still focused on fixing myself, which is still taking precedence over writing for money, so that has remained consistent at least since March. A therapist is still in order now that my crotch pain has subsided and I feel like I can walk like a normal person. Some people would put mental over physical health, but I am lucky to have a patient mate.
When I’ve talked about my mental illness before to friends and family, I always talk about me “waking up” because I describe it as if I am no longer sleeping, I know who I am again. But then, something happens to shake up my worldview and I realize I had fallen back asleep and didn’t even realize. Going to NYC (and seeing friends and family) always wakes me up, and this time I hope, pray and wish I stay awake longer than I have previously. (I was in NYC recently to write about GF2045 for VICE’s Motherboard.) Another way to describe it is I have lost myself, or personality, somehow so to fill the personality void I absorb the ones of those around me. Or I could get really emo and link to Tor Amos’ “Silent All These Years” but my situation isn’t really like that. I’ll go with the obscure Von Iva’s “Same Sad Song,” which doesn’t really fit either, but… maybe if they were combined.
I am telling you all this, dear Internet, because while looking at the VICE suicide fashion photoshoot I was overcome with thoughts of Emma Bernstein, and in examining my behavior while remembering her it became apparent I have now completely processed her death. Her influence was what made me want to be a writer, and in thinking of her, I looked at my writing career with a new perspective.
There were many times when I was flakey, promised things I couldn’t deliver, and let people treat me like a doormat. I had issues meeting deadlines and failed to negotiate properly for what I wanted or needed and misunderstand what people were trying to teach me. My ability to produce good work is what saved me during my post-accident mania, I think. (My accident roughly 5 years ago also relit my writing desire, so I guess that is the one positive outcome out of all of that, even though right before the accident I was serious about modeling and improv. Why I am still doing journalism despite preferring creative writing and performance art — and even going to school for it– is something I will need to transition to, and soon. )
Another pattern emerged during last night’s porch-in-the-moonlight reflection: I’ve had relatively manageable depression since high school and was also “moody as fuck” (my troubled parents failed to notice this but my therapist freshman year of college was not the neglecting sort), but following my accident — specifically the concussion– I became what one therapist described as manic and maybe ADHD. My moods would fluctuate from uncaring, cold and full of hatred to overly enthusiastic exuberance of emotion and energy. I engaged in reckless, selfish and intentionally hurtful or self-sabotaging behavior. I have many apologies to give now… and many mistakes to correct. Here’s hoping that come tomorrow I still give these same fucks.
Possible alternative title: My vagina gives me much trouble in 2013. (Oh no, that’s so victim-blaming. Maybe try, how the current health care system failed my crotch! Or make it something about the lack of bike lanes! Or the dangers of a sedentary life style! The modern condition! I have many ways I can take this… )
Stadtmiller, recently profiled in the Observer as being a “gross over-sharer” and a “crazy woman” is dare-I-say it, fast becoming an inspiration to me. (Not linking to piece because it was rude and reeked of internalized misogyny.) I’ve always found Mandy’s writing fearless, and her transparent but self-deprecating style — she makes herself the butt of her jokes many times — has made me an admirer. I wish she talked about mental health more though, so I would feel less a fool.
So yeah, if my mother and my mate want to harass me about all these posts about my crotch, well, I am going to direct them to Mandy. I’m already getting slack from gamer males, whispering in my head-setted ear late at night while I try to take a control point or shoot a sniper, about me liking to slice my pussy — a reference to my Thought Catalog piece about my vagina. It’s unsettling, which was probably why they were doing it — to mess up my game — and I took the verbal abuse and shrugged it off without comment.
Anyway, see that photo above, of my favorite flats that I have been wearing since last summer? It is the perfect visual metaphor of how unstable my life has been, both mentally and physically.
Of all the things the grey-haired veteran journalist-types taught me before they were laid off, one was ringing true now: I must first take care of myself. Which explains all these posts about my crotch, see. I must take care of myself before I can take care of anyone else.
As you can probably guess by this post, the pain in my crotch woes continue because nothing is ever that quick-fix easy. (A lot of my other woes continue too like some same old Sam, including me failing at various work plans like leaving the house or sorting my freelancer issues, of which I now have 6. Ugh, help. Co-working spaces in Chicago, anyone?)
Once again, the pain is partially my doing too: I was too delighted this Sunday with having full hip rotation that I pulled a muscle – the psoas – in my crotch, right side. I was feeling sexy at the time, and still only partially regret it — having full movement made me so very confident. But then it came, like a punch from the universe. In my goddamn crotch. I floundered in bed for at least an hour sobbing from the pain, a long hot shower did nothing to soothe it, and I thought very seriously about going to the ER. I didn’t go, because what can they do besides fondle my crotch and give me painkillers I’d refuse to take?
It was quite possibly the worst pain I have felt since the accident, and I was limping well into the night. When the pain and the muscle spasms finally subsided around 3am, I masturbated furiously and to my satisfaction everything down there was still working. Thank the gods. Yeah, I am so male in that way, of wanting to make sure my junk is still fine. This way of thinking, as a woman, is a luxury in many parts of the world I realize.
(Is no one going to hire me full-time now that I mentioned masturbation in multiple posts? Am I a disgrace? These are interesting branding questions… questions Mandy probably knows the answer to.)
Speaking of Mandy, Stadtmiller gave me an interesting idea yesterday, about crowd-sourcing my medical bills. I don’t know if I am cool enough to pull it off, but I really do want some x-rays down there and actually go to a physical therapist instead of doing shit from home. I also think my last doctor missed some things. My essayist friend Rachel Rabbit White suggested I clean up my last post and submit it to xoJane, but I am unsure of what to focus on in the re-edit. If I do though, I would ask for some medical bill help.
I am officially getting tired of all this pain shit. I want to be running, dancing and biking already goddammit, but I know that is out of the question right now given walking normally is still a motherfucking problem. I feel like my crotch pain — what I’ve currently self-diagnosed as a grade 2 psoas strain — has been slowing me down for years. I am getting incredibly impatient with the limits of my body right now, if you can’t tell, and it is not helping my mental health or work issues. Ugh.
Not to end on a completely negative note; all this pain and self-reflection has forced me to slow down and re-evaluate things in my life. (Like, not freelancing for so many places, learning how to say no, figuring out better time management and what not, etc.) So, there’s that.
Alternative title: Why working from home for years as a depressed person injured by a car while riding their bike is a really fucking bad idea! (also, always do your physical therapy!)
Other alternative title ideas: Please look out your windows when opening car doors, and in general as a car driver, please be kind to cyclists. I know you guys and gals currently have a war going on for the road with the bicyclists, but it’s not worth killing, paralyzing, or injuring a person permanently over.
It’s been a little over a month since I’ve updated this blog, and so many things have happened in that time – including me smoking weed with Snoop Lion (and then lighting my hair on fire and vomiting in a diner bathroom because marijuana and alcohol don’t mix duh-I-should-know-better) – that I am having a hard time keeping up. The most important bit of news though, is of course the title of this personal blog post.
I’ve actually been struggling to get any major work done since my emergency doctor’s visit last Wednesday. All I want to do is dance around my apartment, have sex or masturbate, or sleep because damn am I sore and tired now that I can walk and balance properly. The last thing I want to do is sit still and type away on a laptop. I’ve been typing my life away, glued to my Internet machine, for a few years now and it has caused me a world of physical and mental pain. I mean that in the most literal way possible – my sedentary, hermit lifestyle made my injury and depression worse.
See, the last issue left over from my biking accident – which included a concussion, cracked rib, and puncture wound in my chest above my right breast – originally manifested as a mild back pain. When I woke up on the concrete now almost four years ago due to a searing pain in my torso, I looked down at my legs and thought I was paralyzed: my legs looked odd and tangled up in my bike frame. Emergency xrays found nothing broken or wrong with my back, but something still ached as they stitched up the hole in my chest while I was on morphine.
I go back to the ER three months later complaining of what feels like a sunburn directly under my skin around my back, ass, and leg, but the nurse doesn’t think I have a slipped disk. The sunburn under my skin sensation mysteriously disappears during the visit, and feeling foolish (and broke) I sneak out of the hospital without paying.
A hike in Yosemite nine months later leaves my right knee horrible and throbbing and limiting my vacation activities on the very first day. While running for the bus drunk one warm day a few months later, my right leg gives out unexpectedly and I skid across the cement, obtaining large scabs on both elbows, forearms, knees and wrists. The next day I tell people at a bar I saved a kid from being hit by a car when people ask about the (rather gross and leaking) bandages, and the story gets me free drinks.
More than a year passes and I start complaining to a resident doctor from the original hospital about my leg feeling off, even being a different size and shape – particularly the muscle on my right thigh – but he finds nothing via x-ray of my back nor nothing wrong with my leg. He doesn’t actually touch it though, and I am unsatisfied with the entire experience.
Doctors at another hospital decide to also x-ray my back but they too find nothing, except what they call a healthy spine. They do send me to physical therapy for my back and while there, the therapist notes muscle atrophy all over my body but particularly the right leg, a really stiff right hip, and bad posture from sitting all day. Since I am there for my back though, the problem isn’t addressed except in scribbles in his notebook.
By now I have joined a startup web publication that has me working from home. My beat has me covering the Internet including the time-consuming YouTube and hackers that only come out to play late at night. I stop regularly spending time outside and hanging with friends, instead living on my couch sitting Indian style or with my foot tucked under my butt… all ways I have been sitting since I was a little girl, and ways unbeknownst to me, would make my pain worse. I stop moving almost entirely, still too afraid to ride my bike, and I start putting on weight. The electric shocks on my right side that sometimes make my muscles twitch also start interfering with what little sleep I get, too.
Two years post accident and the trip to the liquor store – the only time I am leaving my apartment daily – starts to hurt. My right leg tingles, feels weak, sometimes burns, and I have to actively pay attention to how I put my right foot down – I really just want to drag it. I also start accidentally swerving into people on the sidewalk. When this happens at a bar, I pretend to be drunk and apologize profusely.
I am now the heaviest I have ever been in my life, and I am ashamed of my body that once used to do ballet but is now inexplicably failing and off-balance. My mate of now-8 years unconsciously starts fat-shaming me.
To make matters worse, sex becomes painful to the point where I can’t come properly any more. When I do, it is a dull, almost numb ache or the exact opposite- it is so sharp I start tearing uncontrollably. It definitely feels different, but given all the problems already on my plate I ignore it. I blame it on mental illness.
Lack of human interaction and cabin fever make me even more miserable and the depression mixed with paranoia I am absorbing like a sponge from my late-night hacker sources lead to a period of intense mania that lasts for months. My mate emails an old therapist, worried I have schizophrenia or manic depression as I have started raving about my right leg being a different size (among other symptoms) and alcohol, weed, and standard over the counter painkillers are no longer keeping me comfortably numb. I have fleeting thoughts of suicide I sweat away in hour-long baths. (If I didn’t have a writing career, a supply of weed and Team Fortress 2, I think I would have offed myself for sure. )
June arrives and I finally get health insurance (for a month), and the chiropractor I go to tells me my hip is out of alignment and that my right leg is longer than the left. I feel vindicated – I may be a little crazy, but at least I am right about this! She snaps and stretches me back into place and I visit her a couple times and become good at walking for a few months. She recommends I do yoga and ballet at home, and when I do, become fully aware of how weak and unstable my right leg is.
The pain returns tenfold by August, however, given lack of funds for chiropractic visits they promptly end. The difficulty level of walking to the store to buy alcohol increases exponentially, with my right ass cheek hurting at a beyond distracting level of 8ish on the pain scale. “My ass is falling off,” I start saying with alarming frequency. No one knows what I mean.
At one point I think I have kidney stones, as it feels like tiny rocks are moving through organic tubes in my hip, crotch and back area. Giant bee stings regularly radiate down my right leg and into my toes, no longer content to live in my hip, thigh and back. I can no longer talk and walk at the same time because if I tried, I would trip. Walking requires that much of my concentration. I fantasize about getting a cane and making it fashionably cool outside the steampunk crowd.
Less than six months later, I eventually save up to go to a new doctor – a female doctor- and she feels my right thigh and notes the swelling by my crotch. She gives me vicodin for what she is determines is severe arthritis in my hip. I refuse to take the vicodin because I hate the way it makes me feel; namely, I can’t write or work while on it as a nauseous zombie.
While visiting a Jain temple in India this February, I slip on the marble and fall on my right side. Somehow the fall lessens the pain enough that by the end of the month we climb Chembra Peak to the lake.
Promptly upon returning to the States, I start fretting again because my pain has become unmanageable once I settle back into the sitting-all-day-for-work that is my lifestyle. I try stretching, sitting, standing, walking, – none of it alleviates the pain. I take a really long bike ride which seems to work, but 2 days later I am roaring with pain, ready to go to the ER (but don’t because it is expensive). The female doctor prescribes me Prednisone as now she thinks I might have nerve damage; I have begun to properly describe the pain that shifts around my right side. Prednisone is a much needed blessing and I am practically pain free for the week I am on it. She also wants to do a gynecological exam since I told her of my sexual dysfunction, but I don’t have the money so don’t schedule.
Which brings me into last week, into Dr. Heddles care, where he determined my sciatic nerve was not sliding properly along the muscle and bone in my hip. It was getting stuck and rubbing on things it shouldn’t and when it did, emitted signals that basically froze my muscles including my right ass. Instead of working, the muscle just hung there, which was why I kept thinking it would fall off if I walked more than a block. Using ART on the soft tissue, he opened up my hip and almost immediately relieved pressure on my sciatic nerve.
Less than 48 hours after Heddles unstiffened my hip by a little bit, and I find myself watching porn and having orgasm after orgasm from 1 – 4am. My pussy feels almost as it did five years ago. I can’t believe how much I missed it.
I am not out of the clear yet – the pain is still there in my hip and ass, but at a manageable 3 – 6 level. I’ll visit Dr. Heddles a few more times in the coming months sans insurance- but I am determined to do so as I like being able to walk, bike, and feel things in my crotch. I am not paying my student loans currently in order to afford it, but right now my attitude towards those loan companies (which until recently were collecting double my rent) is they can simply suck it.
Long-term goal is to pay for an EMG, but until then, I am making sure I move once every hour. To correct my sitting posture, I keep my shoes on while at home, and when sitting at my desk have a stool between my legs to keep me from crossing them.
Short-term goal? Finally learn how to moonwalk.
Looking back on the years of pain, I see staring back at me an insecure, fearful, lost and irritable woman. Look ahead to the future I can’t really tell what I will look like, but do know there will be a ton of walking, biking, maybe running, but definitely some sweet sweet dancing.
Bernie Krause’s New York Times Op-ed “The Sound of a Damaged Habitat” gave me chills it was so good a (short!) read. Somehow, Krause gets away with describing the sounds of birds and bugs as an “orchestra,” and it doesn’t come off as cheesy. Damn! As a writer I am impressed.
What freaked me the fuck out, however, was how important sound – noise, din, the daily racket, whatever you want to call it- is, to things that are living.
Rereading that sentence makes me want to go “duh:” it should be a no-brainer that animals don’t like loud noises and we can tell a lot about a habitat by the sounds we hear in it. As Krause pointed out, however, “too little research has been done in the field of biophonics” so running around saying “duh” to the research that has been done wouldn’t be encouraging to any scientist, I suppose. Read the rest of this entry »