The Pain Train

It’s been awhile since I have taken the time to write – aside from a few shitty, short poems that are irrelevant to the content of my blog and life.

I’ve been incrediblggi todayy busy this summer. Between managing my health and preparing for my final year of my degree, it’s been difficult to force myself to engage in hobbies which – yes – sometimes become a chore. We can blame the depression typically associated with unending physical pain and illness.

With my irrelevant excuses for my absence out of the way, I’d like to ramble about something that has been eating at me for months.

I’ve become this person who wears a shield of strength for those with disabilities and atypical neurologies. I have crafted this careful, firm and arguably profane voice which challenges preconceived notions and thoughtless ideas about people like me. People with Ehlers-Danlos, or whatever other rare disorder, or whatever. In doing so, I’ve been quite open and candid about my own illness. I’ve openly shared my symptoms, struggles, weaknesses and flaws. I’ve breathed stories of heartbreak and grief. I’ve opened up about my failures; failures to accept, or withstand my disorder, or as I have affectionately named it – my genetic lottery ticket. I let anyone who was willing to listen in about the days when I want to die and the days when the pain and fatigue is simply too much. Also, I’m pretty sure there is an incriminating Facebook post somewhere when I reminded everyone to remember I was a badass, after my first brain surgery. Drugs were involved.

But there is a casualty of war in doing so. I have yet to find any fellow zebra, or chronically ill person, discuss this casualty. I want to talk about it as candidly as I have done all other things.

People in my life have begun to minimize their pain and suffering. I have a wonderful cousin who is struggling to find a diagnosis for her unbearable back pain. She is probably one of the most compassionate and empathetic people I’ve met. She’s so different than I. She has far more patience, than I can bear, for people. She speaks kindly, while I laugh out obscenities. And here she is, when she talks about her pain to me, she says how it in no way compares to mine and she can’t imagine what I must go through, and how she feels she’s whining and complaining.

This is not okay.

I need to get something straight for people. Pain is pain. We all experience it, admittedly, at varying lengths and degrees. My chronic pain isn’t worse than my cousin’s. It’s different. I mean, sure, if we’re going to objectively measure (and objective measurements only really have a place in an ER or trauma ward), her pain is probably worse than that time you stubbed your toe really hard on the side of your desk that juts out awkwardly. It’s probably worse than the time I slammed my elbow into a door frame. Or dropped a hammer on my foot. My pain, on the daily, is probably worse than when your four year old skinned his knee when he fell off his bike.

But I’m not really referencing small, acute moments of our lives when something hurts. I know that time you stubbed your toe really fucking hurt, though. However, there is no badge for who has it worse. Let me be clear – I’m not saying chronically ill people are guilty of intentionally minimizing the pain of those around us. But our rare or rarely diagnosed disorders tend to sort of blot out the sun a bit, and sometimes it’s hard for that light to reach those around us who have different kinds of pain – chronic knee pain, a bad back, or that unending neck pain. My cousin was minimizing her pain. If I had to guess, it’s because I am so open about my pain, surgeries and hospital visits, so she had this clear image of what she thought ‘bad enough’ looked like and her pain effects her in a different way. Somehow, maybe, she felt her pain just didn’t match up to mine. I corrected her every time, if you were wondering. Her pain does. It sucks just as much.

Just because I have a genetic disorder you’ve never heard of, doesn’t mean your chronic back pain doesn’t hurt the same way. You deserve a space with me, with your friends, with your family to talk about that pain, how it effects your daily life. You don’t need some life-altering diagnosis (MS, GP, EDS, blah blah blah) to be a part of the pain train.

It’s not just my cousin. I’ve caught my husband minimizing his pains and aches. I’ve caught friends online doing it. I know this comes from a place of love. These people are trying to express they understand the severity of Ehlers-Danlos and what I experience. I do appreciate that sentiment. I appreciate the love and care. It’s just not healthy though – for them or me – or let’s be fucking real here – anyone. We can experience pain together and commiserate together. Don’t hide in the shadow of my illness because you feel your pain doesn’t meet the metric for shitty enough. It does. I want to be there to hold your hand. I want to be with you, in that sea of shit and pain, when it keeps you up at night, when it makes you cry, when you just don’t know if you can handle it anymore – I want to be the person you come to because I get it.

We need to do better to make space so our friends and family know that, while our illnesses consume our lives and dominate our dinner-table conversation, their pain is just as valid and there is no need to minimize it. We don’t own the patent on the fuckery that is pain. It isn’t exclusive to our weird diagnoses. It’s the shitty side of the human experience, and we all deal with it. This planet is fucking huge. I think there is enough space for everyone’s suffering.

This post is dedicated to Katelynn.

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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.

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.