Marriage & Illness

This post is dedicated to the most amazing, wonderful and caring person I know. He is my closest friend and my soulmate – my husband. <3

Chronic illness is hard. Marriage is hard.

You know what is even more challenging?

Both.

That is not to suggest abled couples don’t face their challenges, because every relationship has difficulties. However, there are additional factors in a marriage where one or both spouses are disabled.

I met my spouse in high school. He became my best friend before he was ever anything else to me. We got married six months after I graduated high school. Let me preface this by explaining – a week after I graduated high school I began chemotherapy for liver disease. But like four days before I started my treatment, my then boyfriend proposed to me (we had been together for 2.5 years by now), after graduating from BMT for the Air Force.  Of course, I said yes! But then we had to go our separate ways for awhile. He went off to tech school and I continued working, started college and continued my chemotherapy.

We married on December 19, 2011, the same day we officially began “dating”, our three year anniversary. Coincidentally, it was also four days before my chemotherapy ended! We have now been married for over four years and together seven.

Despite this being arguably one of the most stressful years, it has been the absolute best and most fulfilling years of our marriage. It took a lot to get here. The first three years of our marriage were incredibly difficult. For a blink of an eye, I was worried we weren’t going to make it. Not because of my husband, or myself specifically; but rather because our entire marriage has been built on the foundation of tragedy and neither of us were poised enough to deal with it in healthy ways. We both came from abusive homes. We both have struggled with depression.  I’ve struggled with health issues for the entirety of our relationship.

People said we were too young – I was 18, he was 19. People asked me if I was pregnant, as if that is the only sane reason to marry someone. People rolled their eyes at me. People are ridiculous.

I’ve loved my husband for a long time… even in the really rough years. He has been there for me in my weakest hours. He has fed me, bathed me, held my hair as I worshiped the porcelain goddess, held me when the pain was too much, stayed with me in the hospital after my brain surgery – he has done it all for me. I will be forever grateful for every day I have with him. He never ceases to amaze me with his compassion, kindness, affection and he never stops challenging me to be a better human. I love him more today than I did the day we got married.

Here is the best advice I have for chronically ill and their partners!

  • Communicate. This is seriously the most fundamental part of any relationship, not just marriage. If you’re feeling overwhelmed, tell your partner and make a plan to reduce stress/responsibilities so you can compose yourself. If you’re feeling insecure, angry, sad, upset, depressed, attacked, happy, whatever tell your partner. There is nothing too small to tell them.
  • Take care of your spouse. I know this one isn’t easy. As a person with chronic illness, you’re probably relying on your partner a lot – they may even be your caregiver to an extent. This is definitely the second most important rule to marriage if you’re chronically ill. Caretaker burnout is a real and it is crucial to prevent this, for the safety and health of your partner. Make sure your partner is eating, sleeping and getting down time from you, your illness and caretaking. This might involve asking family and friends for help, or hiring some hands, so your partner can have time out. I’d strongly recommend talking to your partner about attending therapy or a support group, so they have additional resources at their disposal (also, you should consider therapy/support groups too, you both need third party people who you can rely on).
  • Establish your boundaries clearly. Boundaries are there to protect you from other people, but also to protect you from yourself – so you don’t ever have to compromise your mental and physical well-being for another person. This can be as small as you not wishing to discuss something if the other is yelling, or as big as choosing to get something like a DNR. And remember, boundaries are a two-way street. There may be things your partner is uncomfortable doing for you and that is okay. This goes back to the first tip – communicate! You need to talk about these boundaries, or they don’t work.
  • Check-in with your partner every single day. This one is so simple! There are lots of ways to check in – “how are you?”, “did you have a good day?”, “is there anything I can do for you?”. This goes both ways. Ask your partner how they are doing mentally, emotionally and physically.
  • Use words and actions of affirmation/appreciation. You love this person. Make sure they know this and thank them for their efforts in the relationship, and they should return the favor. When I had my brain surgery, every day, I thanked my husband for making sure I took my medications, ate and stayed clean. Now that I am more able, I thank him for being so patient with my recovery, or for supporting my passions. He responds really well to words of appreciation. Your partner might be a bit different, so you’ll need to tailor this to your marriage individually.

These are the broad strokes of marriage and are fundamental for all relationships – but the chronically ill face unique challenges. Remember, it’s a journey and some days things won’t be easy. It is okay to need help, to reach out and to struggle. It is okay to be vulnerable with your partner.

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Patients Rights and Responsibilities.

This post is dedicated to a fellow zebra – Isaac. You know who you are dude. I hope these words bring you commiseration, so you can begin to move forward in this challenging time of your life.

America is sick.

Wellness isn’t a right anymore. Health isn’t a fundamental component of autonomy or life. It has become a commodity. And this idea is suffocating the lifeblood of our nation. This concept has us bleeding out.

One in three American citizens will experience chronic pain at some point in their life – although some of these people will never recover (American Academy of Pain Medicine). This is the most common source of physiological discomfort and illness. This is more common than heart disease, diabetes and cancer combined. The fact that near 1/3rd of our fucking population suffers this disease and it is under-treated is disgusting.

Google chronic pain. Seriously, go do it.

But here, if you’re too lazy to open a new tab and type, this is the top search fill-in:
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Still don’t think this is problematic?

Let me just set this boundary real quick. If you ever tell me chronic pain is in my head (or anyone and I witness it), that it is fake, that I am just stressed, or it isn’t an issue – I swear to all of the fucks, I will verbally rip you a new asshole. It will not be pleasant. Dismissing such a prevalent and real disease, which destroys every aspect of your life, is never acceptable. I don’t care if you shit gold, if you are a doctor or my family member. It is never okay. It will always be unacceptable.

Got that? Good.

Okay, so, you know how whenever you go to the ER or doctor’s office? If you glance around, you’ll usually see little signs that say Patient Rights & Responsibilities. These snazzy little signs probably don’t get read as often as we like. But they are posted to remind healthcare professionals and patients alike that we have guaranteed rights in the doctor’s office and ER. These rights and responsibilities are fundamental.

You have the responsibility to notify your doctor with accurate, factual and honest information, ask questions if you don’t understand, inform your provider if you don’t intend to follow through with their medical advice, cooperate with healthcare providers, respect the rights and privacy of other patients and accept risks if you do not follow medical advice.

You have the right to privacy, care and safety, proper evaluation, proper pain assessment and pain management, be free from abuse or restraints (unless you threaten the safety of yourself and others), be given appropriate medical information, treatment, risks and options, seek second opinions and to have a say in your care.

This sign indicates patients should have autonomy in their care. But that’s not quite true. Humans are fickle little shits – cognitive biases get in the way of patient autonomy and care.

You see, we live in a culture that uses apparent signals to determine the validity and reality of pain. This is a mental error, and it is ableism. It is very real, it is incredibly dangerous, and it is exceedingly frustrating for those of us with chronic pain/illness. Basically, if you don’t look  some certain way, healthcare professionals, strangers, family and friends will think you’re lying, you’re exaggerating, or faking. This is an illusory correlation. People assume two concepts or things are related, even when they may not be. In this case, pain = physical indicators such as broken bones, bleeding, and other very obvious physical signs. This happens because we tend to mostly remember dramatic examples of pain (broken bones, bleeding, etc).

So, for many chronic pain patients, the reality is they go to the doctor hoping to receive adequate pain management. This may include a combination of cognitive behavioral therapy, psychiatric medications to manage depression/anxiety which is physiological in nature (caused by pain/illness), physical therapy, massage, sleep aides, and pain medications – any good doctor will use ALL available tools to treat and manage pain. But patients are often stonewalled and met with disdain, disbelief, ableism and dismissal.

Some fellow zebras shared the humiliating, discouraging and dehumanizing things doctors have said/done to them, in response to their desire for adequate pain management:


‘You don’t need a doctor, you need a personal trainer.’ – Christine Langager

‘Well, if your joints are dislocating, it’s going to cause pain.’ but he offered no help. – Cheryl Boswell

‘Before I was diagnosed with bladder sphincter dyssynergia, my previous urologist insisted nothing was wrong and that I was making up all the urethral pain. She told me I needed a therapist and I was a drug addict for wanting my pain controlled.’ – Kiara Walker

‘There’s nothing I can do for you. This is just the life of an EDS patient.’ – Megan Beckle Hermsen

‘You know too much about this.’ ‘Women’s bodies are different, thank goodness.’ – Andrea Hubert

‘I don’t have a magic pill to help you.’ – Kilynn Marsengill

‘Why do you want a diagnosis so bad? It’s not going to change anything.’ 
‘I’m sorry I don’t have some kind of magical powers that can fix you.’ – Frankie Frank Christensen

Pain management is fundamental for the safety, sanity and health of all human beings. Without appropriate pain management, patients cannot expect to function or take part in society. This leads to a disproportionate amount of economic difficulty, emotional crisis, doctor-related PTSD and anxiety, physical agony, sleep deprivation, and often suicide. Pain management is a human right. Every single person has the right to physical security and the right to not exist in constant physical agony, if we have the technology and medicine to prevent it. This is the only ethical way our society can move forward.

A special thank you to my contributors from the ‘Ehlers-Danlos Support Group’ on Facebook. You are the reason I write – so that we may be heard. We cannot accept the status quo. We cannot be silent.

Beep beep boop.

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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.

Thunderclap Awareness

This post is copied with the permission of the original author, a friend on Facebook.

I know EDS Awareness Month is officially over, but I’d really appreciate you all clicking to support this EDS Thunderclap campaign. If you don’t know how Thunderclap works, it’s really simple and amazing. You click to support via Facebook (or Twitter), and on June 15th at 12:00PM, everyone who has signed up will have a Thunderclap message about Ehlers-Danlos Syndrome posted to their timelines all at once. Can you imagine the awareness potential here? We could possibly reach 10,000 people or more, all with the click of a button and literally no effort on your part. It’s one of the best uses of social media I’ve ever heard of, and I’d love for you guys to participate. EDS affects 1 in 5000 people. We’ve had several people in our support group pass away from EDS complications recently, because many doctors aren’t aware of the risks associated with it and have never knowingly treated an EDS patient. There’s no cure for our genetic mutation, but if we can continue to raise awareness, the outcome in catastrophic events could improve. Please help!

https://www.thunderclap.it/projects/27295-we-are-stronger2gether?locale=en

I think Thunderclap is a pretty neat feature, I only just learned about it. So, if you could take the time to press the button that would help so much!

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.

A Shameless Plug!

Okay, so I have been secretly working on a project. Until recently, I did not realize how attainable this dream was going to be. Now I have fully actualized it and I am ready to divulge a small portion of this dream. I have secretly been working on a non-fiction account, illustrating the existence that is chronic pain and illness. My blog has been a great way for me to feel and chronicle my life in a cathartic manner. But the reality is when it comes to pain, those who live it 24/7/365 rarely have a voice in the discussion about chronic pain, how to treat it, how to cope with it, etc. So, now I hope to give the millions of us out there, who silently suffer, a voice in the discourse!

A snippet from my project:

It is not my goal to alienate allies and supporters of chronic pain patients, but to illustrate to the masses, including our allies, the little things they may say or do that crush our spirits. I live in a state of empathy and the majority of the time, I recognize people mean well when they say things to me. Unfortunately, most of the time, they ignorantly presume telling me “Wow, you’re such an inspiration!” is somehow helpful, consoling, or will make me feel better about myself. Pro-tip: it isn’t, it doesn’t and just stop. This is a bitter pill and I am sorry, it will hurt, but try not to take it so personally. You have been conditioned by social media to martyr cancer patients, children with leukemia and other scary medical conditions. Try, if you are able, not to internalize this. But I have the right to define my existence – you have the right to define your own. This state of being is entirely frustrating, overwhelming and exhausting.

Enjoy! More to come, I promise!

– S.

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.