To every nurse ever.

Dear register nurses, CNAs, and triage staff:

This piece is dedicated to you. You see, while you may not be doctors, you will have the power to make or break a hospital visit for a chronically ill person. You have the power to impact someone like me forever, whether it is in a positive or a negative way – that will be up to you ultimately.

I’ve been struggling to put this into words for a few months now. You see only three weeks after my brain and neck surgery, I ended up in the ER (this was in December). This was perhaps the most terrifying day of my entire life. I thought I was going to die.

I woke up with a throbbing headache. It was pretty bad but I assumed that maybe it was because I had missed my last dose of pain medicine. So, I took my medicine and managed to get some water down, before camping out on the couch. I was pretty miserable. I turned on Netflix and drifted in and out of sleep for a few hours. When I woke up, my headache was just as bad, and I began vomiting. Okay. So, it was pretty bad. But it was probably just the percocet causing nausea? Right? Wrong. I was stupid. I knew there was something wrong. But instead of just going immediately to the emergency room, I waited. I waited and it got much worse. I went down hill as the hours passed. Soon the vomiting was becoming non-stop. I couldn’t eat or drink. The pain was inching from an eight to a nine, something I had rarely experienced in my life. Moving hurt. Opening my eyelids hurt. Everything hurt. I felt like my brain was going to leak out of my ears. Finally, we hit the the twelve hour mark. I couldn’t even keep my medicine down to manage the pain. I was throwing up every few minutes. I start choking on my own vomit and my husband saw me turning blue, somehow I manage to get it down and gasp for breath. At this point, he’s like, “hospital now”.

It still hurts unlike anything but I am scared to go to the ER. You see, I’m scared because I’ve been mistreated in hospitals before. I beg my husband just to take me to urgent care instead and call my neurosurgeon who is one state away. He concedes and takes me to an urgent care clinic only five minutes from our house. They get us in pretty immediately. But my heart rate is through the roof around 120ish, I can’t stop throwing up, and I’m curled up on the table in the fetal position. And it’s pretty clear they do not have the equipment to care for me. As soon as the doctor sees me, she says I need to go down the street to the emergency room and she won’t charge us for the visit. She kindly gives me a vomit bag and hurries us out.

The closest ER, much to my chagrin, is a Catholic hospital. Great. Catholic hospitals are notorious for providing bad care, especially for women, but we can’t really afford to make the trek 20 minutes across town to the military ER. We get to the hospital and the receptionist is pretty nice, but she seemed a bit irritated that I was loudly vomiting into a bag. We barely get a chance to sit down and they bring us back into triage.

The triage nurse asks with an irritated tone why I’m there, and if I had consumed an energy drink in the last hours, because my heart rate was still about 120 and my BP was 150/90ish.

All right dude. We just told you I had brain surgery three weeks ago and I’m experiencing the most excruciating headache I have ever had in my life, and you wanna know if I’ve been pounding down energy drinks? Did you miss the part where I said I haven’t been able to keep anything, water included, down? How about the non-stop vomiting? As a nurse, please tell me they taught you what intractable pain was?

This is when I notice the intake room is fucking filthy. My stomach sinks measurably. I already regret my decision to come to this hospital, but I’m here and I know I need help. The triage nurse takes me back and gives me a gown to change into. My husband helps me in the bathroom change. I put it on backwards, intentionally, because he said he was going to hook me up to an EKG. I’m trying to make his job as easy as possible.

This nurse has the audacity to give me shit for putting it on wrong, like I’m too stupid to put it on right and it was uncomfortable to see my breasts, and I explain I was trying to make his job easier to attach all the wires. I have never been made to feel ashamed of having breasts by a healthcare professional ever in my life. I’ve been through some pretty humiliating procedures too and no nurse, male or female, has ever made me feel as this man did for my breasts being partially exposed. I’m sorry – but you’re a nurse. You cannot seriously expect not to be exposed to the bodies of human beings, including those of the opposite sex ever, even if you do work at a Catholic hospital. I think my husband can sense I’m regretting coming to the hospital now. The triage nurse hooks up the EKG and thankfully leaves. A new nurse enters the room and starts prepping an IV so she can give me zofran and two doctors enter with her. The doctors ask what’s going on and we explain I just had a craniectomy, C1 laminectomy, C2 laminoplasty, dural graft and cerebellar tonsil resection and I’m experiencing an excruciating headache, etc etc. The doctors leave to call my neurosurgeon for recommendations.

My new nurse is this sweet young woman with red hair. She warns me the dilaudid is going to make me feel like someone is sitting on my chest and that it’s going to hurt initially. This sweet woman holds my hand as she gives me the pain meds. Then she explains they are going to keep me for a bit while they figure out what to do. Finally sweet relief. I am finally not vomiting non-stop and she turns the light off as she leaves. She returns with the doctors after a little while, explaining they are going to get a CT to make sure I didn’t spring a leak, but that it was probably rebound from my steroids. The nurse sticks around for a few minutes chatting with my husband and I, pleasantly cracking jokes with me, and asking if I need anything. She treats me completely different than the triage nurse – with empathy, kindness and dignity.

I eventually a CT, and the CT technician makes me change my gown right way, because he also is made greatly uncomfortable by having the gown tied in front. I feel pretty gross and ashamed by this point. And I am starting to get nauseated again. After my CT, my vomiting starts back up, and it’s becoming uncontrollable pretty quickly. Thankfully, my nurse comes back and sees this. She has already given me the max dose of zofran but I ask her if she can get the doctor to give me more, because the vomiting is greatly aggravating my headache and it looks like we’ll be waiting for a bit longer. She gets the doctor to prescribe another dose and manages to get my vomiting controlled again. After awhile, the doctor reappears to let me know my CT looks great and that they spoke again with my NS, he said I was experiencing rebound and they prescribed a med-pack to deal with it. Finally, we’re approaching discharge.

When we got home, I asked my husband if he thought I was overreacting to how the triage nurse and CT technician treated me. He agreed that they acted very disrespectfully by shaming me, and agreed that the other nurse who took care of me was the absolute sweetest. I wish I had remembered her name, I would have sent her a damn fruit basket. Nonetheless, we decided we’re never going to that ER ever again.

You see nurses – you can make the absolute difference in our visits. When I got to that ER, I thought I was dying. I was almost certain I probably had a CSF leak, which is incredibly dangerous. Remember the power you have. Remember you might be the difference between a person choosing to seek help again. Remember to treat your fellow humans with empathy and dignity.

And to the nurses out there who already do that, thank you for everything you do. Thank you for all the blood, shit and piss that stains your clothing, thank you for saving our lives, thank you for holding our hands when we’re in pain, thank you for laughing at our desperate attempts of humor in our darkest hours, thank you for the overwhelming emotional burden you take on and thank you for being you.

 

Incurably Atheist

Where did we come from? How did we get here? Who are we? What are we meant to do?

These questions have troubled humans for an unparalleled time-span. Living with chronic illness is especially challenging at times, because we often crumble under the weight of our experience and beg to know why – why us, why me, why am I suffering like this?

It should not be entirely surprising to know that people, family members included, have told me I am suffering because I am an atheist. Apparently, I just need to find Jesus. As if, I am doing this to myself, as if I deserve this dehumanizing existence, as if I am not doing everything within my power and reach to have a healthier and happier life. It is almost laughable for someone to patronize me in such a way with religion. Of course, in their mind, they are saving me from myself – which is why it’s so patronizing and condescending.  It is to suggest I do not have a life worth living. Even more, it is insulting to every newborn in every NICU, dying or experiencing debilitating illness – because it is to imply they also deserve, or rather there is a reason, for this existence.

And in those moments of hearing those sentences, those utterly destructive and dismissive phrases, I am weak. I am exhausted. I am frustrated and angry.

But don’t get me wrong, I have asked myself that question, I have pondered if maybe I prayed or believed, it might have been different. But that is illogical and it does not hold up. Religious people get sick. Rude people get sick. Nice people get sick. Children get sick. Everyone is susceptible to chronic illness, chronic pain and disability. Pain does not give two shits which god you pray to, which book you read to silence your fears and insecurities – no because pain just is.

And then I remember why I am not religious.

The funny thing is, my atheism is a source of great joy in my life and it is a part of my mental, emotional and intellectual wellness. People wrongly assume atheism means I do not have a purpose because when I die, I will be nothing (or they tell me I’m going to hell without realizing the irony). But I was nothing before I was born. I will be nothing when I die. I do not live for my death, I live for my life. Every day before I die is a day I have lived. It is a day I have discovered, a day I have loved and a day I have been in pain. The wonder of the universe, of our humanity and our evolution amazes me every single day. This Earth is a beautiful pale dot, in a massive cosmos, with so much for me to try to understand and explore. I am in awe of the complexity of nature and the wonderful and charming way of humans, even when my fellow humans take a metaphorical shit on me.

We just are. People just are sick. There is no reason. There is no god pulling at the puppet strings and forcing illness, pain and suffering on unsuspecting victims to teach them strength, or some other proverbial lesson. Please don’t mistake this as me suggesting your belief in whatever god is wrong, or bad. Believe whatever the fuck you want. That is irrelevant to me. But your assumption, as a religious person, that sick people are sick for some reason is wrong and harmful. It dismisses those who are actually experiencing chronic illness, chronic pain and disability. Instead of suggesting our lack of belief, or different belief is the cause of our illness, listen to us. Hear us in our existential crises and support us, because we need you – we need our friends and families to see us and to hear us, to actually hear what we are saying.

We are, you and I, at least one of the ways the universe knows itself. – Bill Nye

Positivity Porn II

It’s been a couple of days since my most recent piece Litany of Positivity Porn. A friend of my shared it and it’s made a few rounds in some circles of chronic illness groups. That’s great, but I need to add to it. I feel as if I didn’t completely expound upon the idea of positivity porn and selling happiness in the place of legitimate change.

The friend who shared my article informed me of an awesome movement known as The Icarus Project. This movement focuses on the intersectionality  of mental illness in the world, while exchanging social support, ideas and pushing for a cultural shift towards acceptance. This is primarily why I wish to further discuss positivity and inspiration porn.

The foundation of selling happiness in the place of tangible assistance is damaging to anyone who experiences poverty, implicit and explicit racism, homophobia, transphobia, sexism, or ableism. That is what is so powerful about this language in my recent blog post. It can be applied to the experience of being told to buck up when you do not have control over serious, debilitating problems that are systemic or institutionalized. It is for anyone who faces the invalidation, marginalization and dismissal from their peers, families, friends, doctors and co-workers.

I wanted to further recognize the intersectionality of disability, chronic illness (physical/mental) and chronic pain. Humans are complicated individuals and everyone has a different story. Their experience is valid, it is real, tangible and it has affected that person in many ways.

I never want any of my readers to feel isolated because their voice is a little different from my own, or because they experienced something slightly different than I do. This isn’t to suggest that anyone even indicated that I left them out, but rather I felt I had left people out. I felt like it wasn’t enough just to discuss the core issue of positivity porn with regards to chronic illness. It is not authentic to suggest that positivity porn only effects a single group of people – no it is so much more than that. We cannot co-opt this experience as some singular instance.

This post is dedicated to a special friend, fellow spoonie and zebra – Gowen. Thank you for encouraging me to continue to use the power of my language, my voice and my writing to support my fellow humans.

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That’s what WordPress says when you click to make a new post.

I apologize for a bit of silence in my journal. I don’t know about you, but sometimes my mind doesn’t have a clever phrase or thought to deal with the ramifications of humanity’s fragility. I mean, let’s be honest – most of us have an originally brilliant phrase or analysis of some situation only once in awhile. Hardly ever, even. We tend to feed on those brief droplets of inspiration, squeezing the creative lifeblood out until it withers and dries up into nothingness.

I have not had one of those little nibbles of inspiration in awhile. I admit, I have been depressed. This isn’t really outside the realm of normal for me. The thing about living with chronic pain and illness is… you will at some point end up depressed.

I’ve felt like there was something I have wanted to say or flesh out into some form of art for almost three weeks. But each time I sat down to write, draw or work in photoshop, I just kind of blankly stared. It has been similar to an itch you can’t scratch. I had two of those for four days. I think it has something to do with coming off of an anticonvulsant and nerve medicine. This shit seriously fucked me up for the three weeks I was taking it. It made my entire face hurt. I never knew the edges of your teeth could hurt until I took this medication. It made everything significantly worse. I finally stopped taking it because I couldn’t handle it anymore. Unfortunately, coming off Lyrica can be as bad as starting it. I can’t say for certain my itches were caused by coming off this medicine. But I wouldn’t be surprised. There was a small patch, probably one inch by one inch, that itched so deeply on my ankle. If I scratched it, it would hurt, but if I didn’t touch it it would just itch like fucking crazy. There was no rash, bite or anything. No dryness. Nothing. Then two days later, same thing but in my left nostril. The itching has mostly subsided, but both spots hurt now. These were the most insane itches I had ever experienced in my life.

Riveting story, right?

I guess that’s all for now folks. I hope to have some more stuff for the non-fiction book I’ve been working on soon. I have also been considering a fictional blog because to be honest I fucking miss fiction writing.

Toodles.

Last Day (Not)

It is officially the last day of May and coincidentally, the last day of Ehlers-Danlos Syndrome awareness month. It has been a good month and I have been able to connect with many people, illustrating the stark reality that is chronic illness. But we are not done, this is a lifelong fight for awareness – not just one month out of the year. However, in the spirit of awareness, I hereby dedicate this final post to the final day.

Wouldn’t it be so nice if we could go, “Today is the last day of our illness. Tomorrow is the first day of health, happiness and life.”?

I noticed some people in my life do not like discussing depressing prospects. They say things like, “Wow, S. that’s really sad…” and they seem uncomfortable, like maybe I should just stop writing and talking about it. Yes, well living with chronic illness is very sad. It can also be very happy. I need to talk about it, for myself. If you are uncomfortable with the realities of life, which is pain, suffering and death, then perhaps you should reevaluate your position in life and yourself. There is nothing, in my eyes, healthy about turning your back on someone, or some situation because you are uncomfortable with depressing stuff. Life is a mixture of sadness, pain, failure, anger, resentment, but also happiness, success, empathy, love, laughter and greatness.

In any case, I will not stop talking about my life, my illness – the depressing stuff or the successes, happiness, love and laughter.


Quick side bar, I would like to link a really awesome post by a fellow zebra. Her struggle is very different from mine, however, she also suffers from hypermobility type of Ehlers-Danlos Syndrome. I am linking her post to illustrate the vast differences between patients, even patients with the same type of EDS. You can read it here. She is a young woman, a bit younger than I, who has severe gastrointestinal manifestations in her Ehlers-Danlos, nearly killing her, resulting in feeding tubes and a very limited life. She is UK based and has been writing to share her story and raise awareness about how sinister this genetic disorder can be, especially if left unchecked.


So, as a part of my integrative care for Chiari and Ehlers-Danlos, I started seeing a psychologist. I have already undergone some intensive therapy, spanning over two years, including a couple facilitated support groups. But, in the interest of showing my primary doctor how serious I am about integrative care, I sought out a clinical psychologist to manage the social and psychological implications of living chronically ill. She is an okay psychologist. It isn’t so much that I feel I need to see a therapist at this moment. I am in the best place I have ever been in my life, emotionally, socially and psychologically. But the truth is, living incurably comes with random, unforeseen complications. That is the very nature of both of my conditions.

Anyways, in the second or third appointment, she asked me, “What is it like? Living with these conditions?”. She stared at me, taking a drink from her coffee while waiting patiently for an explanation. I just sort of laughed and stared back at her for a moment. In the previous appointments, I had to tell her my history, including medical. In 2011, I underwent 6 months of self-administered chemotherapy for liver disease (no, not cancer).

So, after thinking for a moment, because I genuinely wanted her to understand, I said “it’s like chemotherapy, that doesn’t end”. She seemed shocked, like as if my previous descriptions of EDS and Chiari had been said in an alien language, or maybe that she thought it wasn’t as bad as it sounded.

“You know, you deal with splitting headaches daily, joint pain daily and random, unprecedented bouts of nausea and even vomiting. Standing up hurts. Sitting down hurts. And you’re just so fucking tired, like you haven’t slept.”

I think she finally got it, when I related it to my experience with chemotherapy.

The description stands true today. But I must admit, my symptoms have actually improved as of late, headache aside.I had an incredibly bad flare in the end of 2013 through the beginning of 2014. I used a cane and I almost never left the house. My husband had to help me shower many days and the pain made me cripplingly depressed. Things began letting up in the summer of 2014 and although it still sucks, it all still hurts, I am not that bad (for now). The reprieve has been nice and finding answers has definitely helped tremendously. Things are still improving, but only because I am finally getting the medical attention I need. My primary prescribed me beta-blockers for the associated autonomic dysfunction and just in the a week of being on this new medication, I am already improving immensely. I am finally sleeping better, my blood pressure and heart rate aren’t doing gymnastics anymore, and I don’t feel like I am going to pass out every time I take a shower. And that is just one facet of my illness being treated. I can’t imagine what will happen when I am under the care of a clinical geneticist. This is great. I can only hope for such improvement when I go to John Hopkins.

Don’t get me wrong, I still have my struggles and I will continue to struggle in the future. You will never be able to ask me, “So are you better now?” and get the answer yes. That will not happen. There is no cure. This is progressive, but my victories are moments like these – moments where it is manageable, moments where I can do things and be happy. I know this summer I will begin to have even more victories, because I will have my brain surgery(ies) needed to alleviate my headache and to slow the progression of the Chiari malformation. Moreover, I will continue to make connections with wonderful, supportive people who do not shy from the gritty-shitty aspects of life.

I have been fortunate since moving to Virginia, especially so. I have made some amazing new friends, some through support groups and some who work with my husband. A special shout out to my best friend from Alaska, you know who you are boob, for always enduring my 2am antics and just wholly loving me, supporting me and of course for always being there, when I needed you the most! Another quick shout out, to Fred, a new connection who can relate in so many ways to the struggle that is Ehlers-Danlos. A new friend who I know will continue to be there and who will endure through the same battle, who displays such astounding empathy and who checks on me regularly!

Finally, my husband who has shown me true strength, compassion, empathy and death-do-us-part love in our marriage. I know I would not have survived, thrived and lived to become the woman I am today without my husband. He stole my heart over six years ago. He gave it back, in better condition than I could have imagined and he has truly endured through the struggles many relationships may never face. He has shown weakness, strength, compassion and he has lifted me up with his love. I am so very lucky to have him in my life.

Today is the last day of Ehlers-Danlos awareness month. But it is not the last day of my illness. It is not the last day of voicing the pain and the victories I have and will face.

In this moment

Well, it’s been an exhausting week and it’s only Tuesday. That’s fucking rough, I think. I had an appointment with my new neurologist yesterday. It was a good appointment, as far as things could have been. I mean, he did have to Google my condition – but at least he did that, instead of just pretending my condition doesn’t cause actual physiological issues. He ordered the appropriate tests, new brain and neck MRIs as well as a CINE MRI, so I can follow-up with neurosurgery in the coming months.

And as good as it was, I am still scared as fuck for the future. I applied and was accepted to my new university (hopefully the last, before I graduate). I just really want my degree, I really want a future where I can work with people who struggle in the same way I do. But I’m so afraid I’m never going to make it, that I won’t survive the ride or that I will become disabled completely before that day comes. It will be such a big deal for me to graduate. For one, I will be the first in my immediate family to obtain a complete higher education. It’s not that my family hasn’t made something for themselves. My mom managed to get a high position in a civilian job for the federal government, without a degree, which is such an amazing feat. She got there with raw talent, dedication, determination and skill. That is amazing. However, that doesn’t change what I want – which is a specialized education with an opportunity to work in clinical research. I can’t get there without a degree. I love the brain and I am excited about uncovering knowledge. I want to be a person who shapes a field, or a perspective on the brain. I don’t need to make some flashy discovery or break ground in science. I want to help bring some aspect of knowledge to life, for someone, anyone.

I am so afraid once I have this brain surgery, I won’t be the same. I won’t be as able, mentally or physically. I am already struggling to keep up with my age group because of my medical conditions. And I envy everyone around me, who has already graduated and is working on their graduate work. All the people from high school who have already done so much more. I know I have done a lot, given my circumstances. Many people tell me I am an inspiration, but I don’t feel that way at all. Maybe people just have very low standards for what inspirational means, or they think they have some concrete understanding of who I am, what I’ve done and where I’ve been.

Getting my degree isn’t just about being able to work in my dream career. It’s actually so much more than that. You see, my husband has selflessly sacrificed years of his life working in a career he isn’t exactly fond of – for me. So, I could the medical insurance I need. I mean, obviously, that wasn’t entirely his motivation for joining the military. But it definitely played a large part in it. And now, he is finally starting to hone in on what he wants to do for a career and life. I so desperately want to return the favor, I want to be able to support him so he can pursue his desires. He wants to get a degree in mechanical and electrical engineering. I want him to have a career he loves, not one he resents sometimes. And what if I can’t? What if I cannot measure up and give him the gift he has given me?

It has taken me so incredibly long, years, to actualize that I am this capable and intelligent woman who has so much to offer the world. I have a unique platform in life, with an ability to empathize and feel so deeply for those who struggle. And facing my genetic condition and my brain condition, I feel like I will never get the chance to give everything I have to offer the world. I feel like I will never reach the point where I can do what I was always meant to do. It is crushing my soul and I feel like I cannot breathe. In this moment, it feels like I will not make it. I know deep down that isn’t true and tomorrow I am sure I will feel like I can do it all again. I won’t feel weak and momentarily be frozen in fear. I know tomorrow, I will continue to give the world what I can, until I can’t anymore. But for now, in this moment, I’m scared.

Chiari Strong

It’s been a long time. Boo.

But, if you’ve at all followed my blog, you may recall me writing several posts regarding my journey, navigating the medical world. The journey is far from over, however, this last December I finally got concrete answers. I mean, I kind of already knew, but I needed an expert to tell me for certain (and so I had a piece of paper to hand doctors each time they claimed it was all in my head). It is actually, quite literally, in my head. As it turns out, I have Chiari 1 malformation.

Chiari is the result (at least in my case) of posterior fossa hypoplasia. The posterior fossa is the fancy bit which forms the back of the skull. Hypoplasia means incomplete or underdeveloped. So, basically, the back of my skull did not form correctly, causing crowding and eventually compression of my cerebellum (one of the important parts of my brain). Now, my cerebellum is falling out of my skull, sinking down into the little space where the spinal cord comes through. This causes decreased cerebrospinal fluid flow, as well as compression of the upper portion of my spinal cord and the compression of my cerebellum.

Tl;dr

My brain is falling out of my head and is squished. It’s progressive and will probably kill me. It’s really, really bad.

It’s been an interesting couple of months since a neurosurgeon specializing in Chiari examined my images and confirmed what I already suspected. In the time I’ve known with absolute certainty, several different people in my various support groups have died due to complications caused by Chiari malformation. Just last week or so, a 28 year old girl died in her sleep, after a decompression surgery. It’s really scary realizing how serious this malformation is and how little the medical community actually bothers to know about it. I say this from experience.

You see, over a year ago I was referred to a neurologist because I’ve had a headache and neck pain (24/7) for the last three years. Additionally, I’ve had worsening tremors and other odd symptoms. The neurologist suspected I might have MS and ordered an MRI. Her radiologist actually discovered this Chiari malformation. But it was completely dismissed because it didn’t look bad enough. The medical community is so outdated on what Chiari actually is, there isn’t much hope or point in seeing a neurologist for this condition. My cerebellum was only herniated 7mm on the right and 3mm on the left, so it wasn’t serious enough. She basically told me “there is nothing I can do for you”. So, I figured I’d get a second opinion. I asked my primary doctor to refer to me a surgeon since I figured they would know more. My primary read the radiologist report and said, “You know, I really feel this isn’t an avenue worth pursuing, I read the report and you’re fine.”

It took me an entire year of fighting and eventually spending my own money (despite having practically the best insurance available) to get a proper specialist to look at the images and confirm just how fucking serious this was.

I sent my images to an accomplished surgeon who has treated (there is no cure for this malformation) many patients with great success. He sent me back a report with what he saw just shortly after Christmas. This was actually my Christmas present to myself, as I had to pay cash to get him to look at the images, since he is in North Carolina and I was in Alaska at the time. In his findings, he remarked at the severity of the compression and how damaged my neck was. He suggested I follow up as soon as I moved to the lower 48, due to my progressive symptoms.

Getting a diagnosis was such a relief. It’s been a fucking exhausting 8+ years, trying to find out what is wrong with me. As it turns out, Chiari 1 correlates and occurs frequently in patients with Ehlers-Danlos Syndrome — a genetic connective tissue disorder. Chiari led me to the other diagnosis I need (yet to be confirmed by an expert). I probably have EDS too, based on all of the health problems I’ve had and then there is this:

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See how my arms do that freaky thing and go the wrong direction? Yeah, most of my joints are hypermobile like that and my skin is as soft as a baby’s ass. These are classic trademarks of Ehlers-Danlos. Take these trademarks, add in a congential brain malformation, chronic joint pain, random partial dislocations, weird flu-like symptoms and unexplained persistent health problems — you get Ehlers-Danlos. EDS is often underdiagnosed, or goes unnoticed for years and years, resulting in the physical, mental and emotional deterioration of a patient. Many EDS/Chiari patients give up on the medical community, feel alienated, dismissed or worse die mysteriously or commit suicide. Ask any EDS/Chiari patient, they will tell you they’ve probably been told once (or ten times) “It’s in your head. You need mental help.”

The words alienated, dismissed, trivialized, mistreated and discriminated against pretty much sum up the last 8 years of doctors visits. I’ve been told it’s psychological. I’ve been told it’s because you’re a womanI’ve been told there is nothing we can do. I’ve been told I’m too young (whatever the fuck that means, go to any children’s hospital cancer ward you fuckwit). I’ve been told there is no reason I should be this way. I’ve been denied adequate pain management. I’ve had to fight for literally every imaging test, every blood test and every referral.  I’ve lost my will and my sanity on the way. I’ve died and come back in this fight.

The fight isn’t over. I still need to be seen by a geneticist to confirm my Ehlers-Danlos diagnose and to rule out some other co-morbid conditions such as POTS, dysautonomia and tethered cord. I still need to survive and learn to manage this life. I still need to love people more, do more things and find pleasure in my desires.

After I get the necessary evaluation, then I can start thinking about brain surgery to slow the progression of Chiari malformation. Without surgery, I roll the dice on my life and there is no chance of any sort of pain relief. This probably will kill me, it’s just a matter of when. I hope to live my life as much as I can before that happens. I realized upon driving home from the post office today, I am an incredibly strong person. I’ve endured so much. I finally realized it was time to share this part of my life with you, or whoever the fuck stumbles upon this small corner of the internet. I’ve finally embraced myself and everything that has brought me here today.

– S.