Stuff and things.

I’m too tired to think of a clever slug for this particular post – but I have thoughts I really want to get out. It has been a pretty busy couple of weeks, for a lot of reasons.

I am attending college and since we recently moved (again) I lost credits. It’s been nothing but an uphill battle to get my freaking B.S. but, it finally seems like I will get to finish. Between financial difficulties, being in the awkward place between ‘poor’ and ‘middle class’ where you can’t afford to pay your way (and you know, still eat), but you apparently make too much to get aide, my health and other factors, it’s been fucking ridiculous.

You see, in high school we were told a degree only takes 3-4 years, but most people take 5 years. I was like “I’m not going to be that person! I’ll do it in 4!”

I was that person.

But not because I was indecisive, or unmotivated. But that life literally threw everything it had at me. My freshmen year I attended full-time, worked 2 hours below full-time at Walmart to pay for school, and chemotherapy for liver disease. After my first semester, I got married and moved to Alaska with my husband. I started back up the next fall and struggled with increasing pain, incompetence from doctors and ensuing depression related to the fact that I was a 20 something in inordinate, inexplicable pain. In 2012, I attempted suicide because I was in so much physical pain and I had been told by various physicians it was in my head – I wanted to die. Society had failed me. And living in pain without answers was not something I was ready to do. Somehow though, my husband managed to literally and figuratively save me. All this time, I was attending school in Alaska. It was still a constant battle with physicians and my own feelings of failure, inadequacy, grief and anger. I did my part though. I went to therapy. I got help. I kept fighting. In 2014, I was diagnosed with a rarely diagnosed brain condition – and I was dismissed as a patient by my neurologist because she was misinformed and incompetent to the nature of my condition. Puzzle pieces began falling into place. A physical therapist noticed my extreme range of motion and the words ‘Ehlers-Danlos Syndrome’ were uttered for the first time.

But then my husband was restationed back state-side in Virginia. I continued school, worked part-time at a child development center to earn some money so we could move, and put my health on hold. I still attended even during my move to Virginia. And unfortunately, because I had worked, I lost most of my financial aid and was only able to attend half-time this last year (which worked out semi-okay). So I started at my third university and in my first semester here in VA, underwent my brain and neck surgery last November.

This most recent semester has been a whirlwind with recovery, doctors appointments and decisions. Now, it’s almost the end of the term, I’ve managed to sort my financials for my final year of school (five years later, dammit) and now… I have big decisions to make. You see, I’ve wanted more than anything to get to go to graduate school. I’ve looked into PhD programs that grant assistantships and waive tuition.

But yesterday, I had an appointment with my new neurosurgeon – I have two, I’m such a lucky duck – and learned my MRV (magnetic resonance venogram) revealed I have narrowing of the blood vessels in my brain. This explains the new pressure headaches, vision loss, and other array of horrible symptoms I’ve had. Sadly, this is pretty common for patients with Ehlers-Danlos Syndrome. EDS effects literally every system in the body, including our blood vessels. Mine are narrowing due to faulty collagen. This can lead to a number of things and the scarier, and more uncertain things: strokes and transient ischemic attacks. So, now, it’s the waiting game for my angiogram to get a better look at the vessels in my brain before we decide if I should get a stent to relieve pressure and help prevent further narrowing and/or blocking.

This would be a second brain surgery, although an endovascular type of surgery, still has it risks and still weighs heavily. I’m not scared about the surgery itself, but rather the looming uncertainty and consequence of the larger picture – the surgeon yesterday said something profound and sad.

“I can see you’re still very much in the beginning of your Ehlers-Danlos journey.”

No he wasn’t saying that about my diagnosis. He wasn’t talking about the pain and struggle I’ve already faced. He was talking about the fact that comparatively, I am still very well off and the deterioration, once it starts it is going to snowball so fucking fast, I will blink and suddenly, it won’t be quite so. I am a walking time-bomb. My body is waiting to blow. There is no question about if. It’s all about when. I could have years before my GI system shits out and I end up on a feeding tube. Maybe I don’t need another corrective craniectomy for ten years, but it will probably happen. Maybe it only takes until I’m thirty to need that cervical fusion that is likely in my future.

Until yesterday, I had no doubts about trying to get into a PhD program. But then after finally getting some sleep, I woke up so tired and the magnitude of those words washed over me. Is it a good idea to keep going? Do I need to be thinking of my health instead? Will I be able to handle it? What if I need another surgery during the post-doctoral program?

Goddamit. Now I am doubting everything.

I know my husband would support me no matter what. But that’s the problem. This man would carry me up our three flights of stairs if I asked, even if it hurt his back, or made his knees ache for days.

I just don’t want to live my life regretting my wasted potential. And I don’t know how to make myself accept that. Of all the limitations I know I have, this is one that I am just not emotionally or mentally prepared to accept.

Fuck.

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.

 

Recovering, but not really.

It’s been over four months since my complicated brain and neck surgery.

To those of you who have ask ‘are you better?’ or ‘are you cured?’ and to those of you who say ‘wow you look so normal!’, stop, please. Please don’t project your idea of my health for my recovery. I am not angry, or even remotely upset, mostly just frustrated by your ignorance. Let me clarify – ignorance as in you have not been exposed to this situation and therefore there is no reasonable expectation for you to know and understand. I use the term recovery lightly and so does my husband. He often even refers to me as ‘broken’ – in an endearing, unoffensive way.

You see when I signed consent for my surgery, I also agreed that I understood that the biggest issue with the surgery is it can fail – it is a treatment. Not every human will respond to the treatment similarly, and additional factors must be considered.

If you were wondering, it didn’t fail, but it also kinda did. Chiari is sinister like that. I am sure I’ve mentioned before my neurosurgeon compares the condition to wearing a shoe two sizes too small. You’re wearing the shoe for your entire life, but your foot doesn’t really fit right, it hurts and soon you start to lose feeling in your toes. So you go to the doctor and they untie your shoe for you, but two of your toes are necrotic and will need to be removed. You should really thank your lucky stars you didn’t die.

But you still lost the two toes. The damage is done.

Only, instead of your foot, it’s your brain and your head. Instead they remove small portion of your skull bone, they cauterize the portions of your cerebellum, they remove tissue to make room for your brain, but at the end the damage is done. The reduced flow in your brain has been quietly hurting you from day one.

Now, as I said, the surgery didn’t fail but it did. You see, prior to surgery, my pain baseline was a six out of ten. For those unfamiliar with the pain scale, a six isn’t considering life-threatening. It’s four exhausting points from most excruciating pain ever. But it is considered high and tends to interrupt daily life. It prevents you from socializing, it prevents you from going to school, doing chores and tends to get in the way of everything in general. Six is verging on an inhumane quality of life for someone who is expected to be in pain for the entirety of their existence. So, post-surgery, surgical pain aside, I was down to a two. That doesn’t sound so bad, right?

Right. But also, wrong. The two itself isn’t bad. It is the changes that ensued that are bad. About January-ish, I began experiencing a new headache. Instead of at the back of my skull, it now hangs out behind the eyes, and it’s especially bad behind the right eye. So bad, I am actually experiencing more vision symptoms now than I was before such as extreme light sensitivity, blurry vision, auras, etc. At first, I was a two all the time with a minor ache here and there. But now, my baseline is two and sometimes my pain creeps up towards a four or a five. Now it appears I could still be having intracranial hypertension. We’re following up with a vascular neurosurgeon now who is going to look into equipping me with a shunt or a stent, hopefully, to maintain the low baseline and prevent additional damage or escalation.

So, the surgery gave me back my hope. It gave me back my will to fight and to live. There are so many things it gave me. But it wasn’t a resounding success. Life with chronic illness isn’t a sprint. Hell, it’s not even a marathon.

Before I didn’t imagine I could keep living in pain, I didn’t think I could handle a partial or total failure. I didn’t want to feel the despair of losing another fight. It’s amazing how much I’ve adapted and even more what I’m willing to accept now, versus then. I am not cured. I am not better. I am different.

Dear Friends,

I don’t know how many out there consider me as a friend. I know there are various shades of ‘friendship’. You have people who you talk to daily, or see regularly. You have people you know and you occasionally trawl their Facebook, just to see how they’re doing. And then, you have those people who are so close to you, they can feel your fire and they know you better than you know yourself.

I’m not sure which one I am to you. Maybe I’m the one where you just occasionally read my Facebook and like my ridiculous ramblings.

Whichever you are, there is something I need to tell you. Not just on behalf of myself, but on behalf of every person who lives with chronic illness – whether it’s Ehlers-Danlos Syndrome, or some other crappy lifelong condition.

I’m sorry that my illness takes up a better portion of my life. I know my Facebook feed is 75% cats and Ehlers-Danlos/Chiari related shit, 10% memes, 10% Tumblr reposts and 5% what the fuck is that! I imagine those sick pictures of my scars and boo-boos are probably getting old. It probably feels like most of your feed is filled with negativity. I promise, if I could have it another way, I would in a heartbeat. Please don’t give up on me. I want to hear about your new kid, or your new job. I want to know how you are. I still want you in my life. I want to see you and I want to make you laugh. I want to wish you happy birthday, merry Christmas, or whatever else. I want to be the person who wipes your tears away after a bad day and asks who I need to beat up on your behalf.

But please understand, sometimes I won’t be able to do that – because I’m a bit tied up putting my joints back in (literally), or cleaning up vomit because I didn’t quite make it to the toilet or sink. Sometimes I will be too tired for a night out, or to have you over. I can promise you on the days I am feeling well, I will want to see you or talk to you.

I am sorry for all the times I have cancelled, or will have to. I am sorry for all the times I slept through your calls and texts. And I am sorry that my life is a mess. That is not going to change anytime soon. But if you’ll have me, I will be the best friend I can be. Chronic illness has given me this amazing super power – empathy. I will always understand when you need to cancel, or when you’re too depressed, anxious or afraid to function. I’ll be there to hold your hand, literally or at least figuratively, when you grieve the loss of someone you love, or maybe when you get sick. I will make you laugh when everything seems so shitty and impossible, because let’s face it, my jokes help me survive my own situation. I will advocate for you when it comes to your health, safety and sanity. And no matter how many miles between us, I will love you and care about you.

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.

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:
Untitled

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.

Beep beep boop

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.

I would rather… cancer.

This may have some triggers for anyone who knows someone with or has lost someone to cancer. Please understand, I recognize every struggle a person may face is their own – it is the worst in the world for that person. I do not wish to accidentally invalidate anyone dealing with cancer, or having to had dealt with it at some point. This is merely my perspective on my own experiences and what I wish I could change, regarding my frustrations with lack of understanding, empathy and compassion towards chronic pain and chronic medical conditions.

I’ve had family who suffered from some form or another of cancer. I’ve had friends. And friends of friends. I’ve seen the Think Pink advertisements in grocery stores, department stores, etc. I’ve even walked to “fight” cancer in spirit. I’ve donated money to cancer research causes. I’ve shared stories of strangers on my Facebook or used social media as a platform to raise awareness about cancer.

Why, then – if I am acutely aware of the horrors of cancer, would I rather cancer?

For the exact reasons above.

Everyone knows about cancer already. It was one of the most talked about illnesses, aside from perhaps heart disease, in the United States. There are always fundraisers for cancer, research grants being donated and made in the name of cancer and there are always marketing ploys to spread awareness. In the recent debates against the DEA for legalization of marijuana and narcotics, proponents for legalization have said things like:

Even cancer patients are being denied their medicines, now!

Because, you know, those who will suffer lifelong illness and debilitating pain forever, until they die, for the rest of their time on planet Earth, every day, 24 hours a day, 365 days a fucking year isn’t bad enough for legislators and DEA to pay attention. Shit gets serious though, once we bring in those cancer patients!

Cancer patients, children especially, are already being martyred to death. Now, they are a champion for legalization, but they are not necessarily the largest group of sufferers that America is/has been systematically ignoring, marginalizing and denigrating to an existence of pain.

This is why, I would rather cancer. Because then my story would matter to the majority of media and society. This is the most infuriating and frustrating part – for me, living with chronic, incurable conditions that are progressive. Even worse, there is literally nothing physically visible that marks me as a patient with incurable conditions – which will progressively destroy my body from the inside out. My conditions are so sinister, so silent, that many doctors can’t even recognize the symptoms or warning signs early, so they cause permanent damage to my autonomic nervous system and pain receptors, which only makes things a thousand times worse. This is especially true because I was adopted and Ehlers-Danlos is often diagnosed when multiple family members present – because it’s genetic. And because I was adopted and in poor state mandated care, no one seemed to think it pertinent to evaluate physiological causes for my inability to walk at developmental milestones (often a major and primary marker for Chiari malformation). Moreover, there is so little funding and research/awareness nationally and internationally, doctors often are left playing GoogleMD (no, I am not fucking joking, I’ve had multiple physicians google these conditions). Finally, the worst part is, both conditions are likely far more common than society is aware. Chiari and Ehlers-Danlos specialists and researchers suspect there is a link between conditions and that both are incredibly common, just so often misdiagnosed or ignored, we cannot get accurate statistics.

Both Ehlers-Danlos and Chiari have been found in other mammals, even.
Here is a great story with a happy ending about a puppy with Ehlers-Danlos, who was taken in by a family with Ehlers-Danlos.

Here is an awesome story about a lion receiving surgery to alleviate symptoms and slow the progression of Chiari malformation.

So, I know cancer is shitty. It tears families apart and people die from it every year. You can see this on an MRI or CT scan. You get treatments and hope for an end (remission). You have people fighting so you can get access to palliative care. Doctors take you seriously. They can identify what is wrong and they can send you to a specialist, relatively easily. There are so few doctors nationwide who deal with EDS and Chiari it is not even funny. I have to travel out of state and go to a giant university hospital, just to be clinically evaluated, with wait times over a year. I probably won’t receive the right kind of care I need, until after that.  Hell, I’ve had to fight just to get necessary imaging tests. The only neurosurgery clinic within an hour that I can go to doesn’t have a neurosurgeon familiar with decompression brain surgeries. I will have to go to New York City or somewhere else.

I am not saying my struggle is worse, but that if I could have picked a different fight than this incredibly lonely and challenging fight.. I would have. This fight crushes every bit of spirit I have, every single damn day, and I keep fighting because I want to live and I want to graduate, I want to maybe have a kid, I want to do things normal 22 year old women do. And I hope, one day, there will be awareness walks and fundraisers for people like me. I hope one day, people who are bound to an existence of chronic, unrelenting pain and fatigue will receive the same level of compassion from our families, friends and doctors that cancer patients, generally speaking, get. I know there are struggles many cancer patients face. I know they experience denigration, lack of empathy and understanding, I know they have frustrations within their set of problems and I do not deny that. No one’s battle is easier. It’s just… different.

I would rather cancer. But this will have to do and I will make the best of this.

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.