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This Is Me

I’m just your average 23 year old grad student hoping to make a difference in the world; you know that idealist we all imagine millennials to be. But in spite of my desires to be that strong idealist who has the power to do anything, I live in a constant state of imbalance, from the age of 2 my parents knew I wouldn’t be given a normal healthy life. It started with a toddler running around screaming and crying while holding her head; my parents later learned I was experiencing migraines. Who could imagine a 2 year old with a migraine? This continued with a primary school student who began to feel chronic pain and suffered multiple migraines a month, luckily she befriended the school nurse and was not often treated as a faker due to her invisible illness. As I progressed into adolescence I began to have uncontrollable bouts of fainting and severe low blood pressure; my doctors treated my symptoms with salt and beta blockers but couldn’t quite find a diagnosis. It wasn’t until my late teens that it all began coming together, and I became a full picture to my team of doctors rather than multiple problems to treat separately. My neurologist discovered that I had a cerebral malformation known as the Chiari Malformation, which essentially means that my cerebellum overgrew and has been pressing on my spinal cord my whole life. This malformation was the root of many of my problems, but the only treatment was a surgery that had more chance to harm than help. I learned that my fainting and low blood pressure were from a disorder known as Postural Orthostatic Tachycardia Syndrome (POTS) a form of dysautonomia that is related to the Chiari Malformation and is also responsible for my chronic fatigue. My doctor discovered my Chronic Fatigue Syndrome when he began making me keep a journal of my sleep and energy levels; even though I average about 11 hours of sleep per night I still feel constantly exhausted. As if this list hasn’t grown enough, I also found out around the same time as my POTS diagnosis that I have severe Polycystic Ovary Syndrome (PCOS) which causes me chronic pelvic pain. It’s almost as if I was covered in glue and had a copy of the New England Journal of Medicine thrown at me and I had to live with whatever words stuck.

These illness took a great toll on my younger self, causing a variety of psychological problems  including clinical depression (for obvious reasons), Obsessive Compulsive Disorder, and Generalized Anxiety Disorder. I could never feel control in my life except for over small things, that was how I developed the OCD. I could control locks, and ensure that one thing in my life is constantly secure. My illnesses made me feel for so long that I could never have the life I wanted, and occasionally that fear returns, but I have learned how to fight back and this blog will catalogue my journey.

 

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How A Trip to the ER Made #MeToo Hit Me Again

Last night I relived one of the worst experiences of my life. And the cause had absolutely zero correlation with the memory. Fair warning to readers, this post will be emotional, painful, possibly triggering, and explicit. Read at your own risk.

At about 8pm I was changing into my comfy clothes after a long day of bring poked and prodded by doctors. I began my day with 26 shots of Botox to my head for my migraines and the doctors’ appointments all progressed from there. Needless to say, I was exhausted and was looking forward to pjs and Netflix. Ad I lifted my shirt off I felt a burning sensation over my port and looked down to notice a red splotch of inflammation the size of my palm over my port. Like any diligent #spoonie, I immediately called my home health nurse who told me that my port was likely infected and I needed to go immediately to the closest ER.

I followed her orders and promptly hot in my car for the five minute drive to my small town’s local hospital. This was my first time going to the ER completely alone and it’s a decision that I deeply regret. My parents were an hour and a half away and had work in the morning so I didn’t want to disrupt their functioning by having them come all the way down for what I thought would be a quick in and out visit for iv antibiotics. All of my friends from school were either gone or off with their significant others because it’s fall break here. I was alone, but I thought I could handle that.

Now if you’ve stuck with me through that lengthy introduction I hope you can get a feeling for the atmosphere of last night. I promise this has a point.

So I arrived at the hospital around 8:20pm and was sent back to a room rather quickly. The doctor observed my port and determined that I appeared to have a case of cellulitis so it was the tissue around my port that was infected and hopefully we had caught it before it reached my port itself. He instructed the nurse to give me an iv of vancomycin, an antibiotic I’d never received before, and then he left the room. About 15 minutes after the iv was started my entire upper body became unbearably itchy, and I began to have muscle spasms. This is called Red Man Syndrome and is apparently a common reaction to this drug. My muscle spasms, however, were not usual of this reaction as mine were in my vagina and urethra. This was the worst pain of my life, and I’ve dealt with severe chronic pain my whole life so trust me this is no exaggeration.

As the pain intensified I searched desperately for the nurse call button and pressed it over and over and over; I needed help but I didn’t get know how badly. Several minutes passed without response from any hospital staff, and the pain only intensified. As I lay there sobbing and crying for help the flashbacks began. The pain from the Red Man Syndrome triggered my PTSD.

I haven’t written much about this because I still struggle with it to this day, but I have been raped several times by four people since I was 14. This sounds astounding, but unfortunately this is the reality of many women in our world. And I suffer from the lasting effects through flashbacks. Normally they come in my nightmares or in instances that mirror the circumstance of any particular attack. This time I was awake, the pain mimicked the feeling of the broken beer bottle my assailant had thrust into me over and over as I laid sobbing and helpless, a 14 year old alone and petrified. Last night I was that girl again, according to the call button record I had been in that flashback a little over 45 minutes when the nurse finally came in and found me hyperventilating, covered in snot and tears locking my thighs together with all my strength. It took a little while for her to calm me down, and to explain she didn’t understand the first time I told her what my pain felt like. It didn’t resonate until I blurted out at her “this hurts as much as when I was raped”. This phrase now haunts me, I had never trusted a stranger with this information before. Eventually she got me calmed back down and back to reality through a combination of drugs and talking. But the memory still lingered with the pain. When I called my mother this morning to let her know how it went in the ER last night I shared with her my experience, something that hurt me to my core because I never wanted my mother to know what I’ve lived through, but I needed her understanding to help me through my shame from last night.

I now think back to yesterday morning, sitting in the waiting room before my neurologist appointment and typing “#metoo” onto my Facebook page. I thought little of the action, other than that maybe I could bring to light the number of survivors of sexual assault and harassment that exist in our social media circles. I had no idea how poignant it would become so much later in the day. I had a full on flashback to being raped and became hysterical in front of a perfect stranger, and she didn’t bat an eye. This begs the question, have we become so desensitized to survivors that we think this is normal? How have we allowed this to become part of our culture? Why does this happen? Why is the shame of our experience placed on the victims? And most importantly, what are WE going to do about it?

So yes, #MeToo, but that’s not where my advocacy will end. My story goes further than a hashtag, as do the stories of my fellow survivors regardless of sex or gender orientation/status. This is a fight for a more civil world. So please join this change, call out assailants no matter how “small” an attack may seem. Check your own behaviors, because harassment isn’t always a catcall or a grope. And lastly, listen. Listen to the stories of survivors. Listen to the stories of observers. Listen to the voices of change. Validate the experiences of your peers. And if you can stomach it, listen to those who have done wrong and wish to change, because that is where we will truly win.

The Gym, My Biggest Fear

Tomorrow morning I plan to do one of the scariest things since I decided to have my port surgery, I am going to go to the gym. “Why is the gym so scary?” you might ask, and I have quite the answer. I have a cane, and a handicap parking pass, and a port that is accessed 5 days a week, all of which make my illnesses a little less invisible. Now I don’t want to bring my cane to the gym because I feel its a short enough distance that I can walk without it, but what then becomes of my image to strangers as they see me park in handicapped parking because I cannot walk more than 200 feet without getting tachycardic? It is to begin remedying this inability to move long distances that has me going to the gym in the first place, so my abled appearance doesn’t make me any less sick but it can still offend others. I live in fear of that note I often see other spoonies find on their cars that accost them for their choice of parking space and accuse them of faking. If it were mere strangers whom I run the risk of offending I would not be worried, but this gym is on my (very small) university’s campus so these are people I know. My plan to avoid people is to go when the gym first opens at 6:30, since that’s the time they are the least busy but I still feel panic when I go over my plans for tomorrow. I guess I will just have to see how it goes. To whoever is reading this I wish you many spoons today!

It Goes Where I Go

Recently my POTS has been more than finicky and has led to frequent dizzy spells and bouts of fainting; due to these circumstances I had to miss my classes last week and my cane is now glued to my hand. My absence did not go unnoticed by my classmates, many of whom commented on my cane (I had managed to avoid using it for class until last night) and handicap parking pass with “wow! you’re a strong lady!” or “are you ok? what happened?”. I welcomed these questions and notes of support from my classmates but one person in particular stuck out to me; a girl who I befriended the first day of the semester had asked me how I was doing and about the purpose of my cane. I answered her questions and at first didn’t think twice about it, but then last night after class she came up and apologized because she felt her questions to be rude in some way. That was a harrowing moment for me, as I have always been keen on educating my peers about my illnesses and advocating for others like me, but I took a second thought. Is it disrespectful to ask people why they need a cane? In our society, it is commonplace for us to look away or try to ignore the adaptations our differently abled citizens may use. Now this is for good reason and I respect that, not everyone is as comfortable with talking about their disability as I am. But I wonder, is there a way to convey that it is ok to ask about my illness? I have considered getting dysautonomia awareness gear to wear on occasion, but I feel like that’s a bit much. Do any other spoonies have any ideas?

Last Day Of Work

Today I begin my newest endeavor toward a healthier (or at least more stable) me; I am leaving my job to focus on school and more importantly my health. I do this at the behest of my doctors, who all agree that my full time grad school and full time work balancing act was just aggravating my illnesses and making me sicker which in turn affected my performance at school and work. So today I end an era and begin a new journey. I will set out, cane in hand, to find new methods of self care and maybe even rehabilitate a little. I am nervous because this transition means I will be living without any new income, but I have scrimped and saved for this day and am hopeful that my budget will hold out. So here’s to a new path, wish me luck and spoons!

Moon Face…We All Get It Once In A While

All of my chronic illness warriors out there who have had to use steroids have probably had the experience of “Moon Face” and those of you lucky enough not to have experienced it have still probably heard of it. Moon Face is spoonie slang for swelling of the face and/or body; typically this is due to meds (more specifically steroids). As I was sending my partner his good morning “make an ugly face” Snapchat when I noticed my face looked like a blimp, I turned off the filters to be sure it was really what my face looked like and it was there, the dreaded Moon Face. I used to be ashamed of my appearance whenever I got Moon Face because I thought it made me look ugly and I would get the ever running swarm of elderly ladies at the supermarket saying they “could just pinch my chubby cheeks” (if you’re not my grandma don’t dare try). But as I have grown older and my relationships with my core circle of people has solidified a little more I don’t worry as much about my Moon Face, because my people know that Moon Face means I haven’t given up, that I’m still getting treatment, and that I have a chance to be healthier than yesterday. My Moon Face is part of my journey to health, and it’s only temporary. So to all of my fellow CI warriors, rock that Moon Face. You are perfect the way you are, and I know that’s the ultimate cliché, but in real life being strong enough to roll with these punches makes you pretty damn perfect. So battle on, Moon Face, spoons, and all.

His Promise To Stay On A Sinking Ship

When I first began dating my partner, I was sure to disclose my health situation after the third date. I explained to him what my situation was, which unfortunately for him was much better than I am now; but I did give him fair warning that I could get worse. Surprisingly he responded with affection and almost a sense of respect for the fact that he had never noticed before that I even was chronically ill (we’d known each other for a while before we began dating). He comes from a family of doctors, and his sister is chronically ill as well; he told me “if you don’t deserve unconditional love because you’re sick, then how could my sister ever find someone to love her?”. This was the most amazing sentiment anyone I had ever dated had said to me. When my illnesses began to spin out of control last fall, he was by my side the whole time. I would continuously ask “Are you sure you want to board this sinking ship?”, to which he would always reply “Of course, because you’re not sinking”. I had been repeatedly told by exes that I was a broken person, that I was damaged goods, or that if we had kids they wanted donor eggs because they didn’t want children with my DNA. But my partner has been amazing and kind, he cares for me as if we were already married. He’s held my hair back as I puke on the side of the highway from a migraine, he picked up my colon prep for me from the pharmacy before my colonoscopy, he even offers to drive me to my doctors appointments. As of last week we have been together for one year and 4 months, and he gave me a beautiful promise ring to remind me that when he sees his future it always has me in it. He is the first mate on my sinking ship, and he’s helping me find ways to patch my holes.

The “I Feel Better” Curse

We’ve all been asked after a bout of illness “how are you feeling now”, “Are you better”, “Back to normal yet”, and many of us answer with a simple “I feel better”. For your average person who just got over a case of the flu, these words are praiseworthy; but for a chronic illness warrior these are some fightin’ words. It feels as though every time I speak those 3 words I am tempting fate, like saying “Bloody Mary” in front of a mirror. Last week during one of my most terrible weeks for pain yet, I made the mistake of using those words. After leaving the emergency room my mother called to see if their treatment had worked, and silly old me used those 3 fateful words to reassure her that her baby was ok. Within half an hour of the drive home from the emergency room the pain had returned tenfold. I was crying from pain the rest of the ride home and after I slowly worked my way to my room with the help of my friend, who had been driving me around all day, I slumped into my bed with every icepack I own running down the right side of my body. I had cursed myself, but really this ending was an inevitable outcome from the poor treatment I had just received. The true problems of this curse lie in a second feature. On “good days” or “low pain” days, we tell ourselves “I feel better” and that can be the worst thing to tell yourself when you’re too stubborn to pace your activity level as well as your physical energy,  and your mental energy. “I feel better” can be a trick to us spoonies, and can lead to severe energy deficits, flare ups of our illnesses, and a multitude of other problems. And the worst part is having friends and loved ones come to you after you’ve over done it and ask “But you were so great yesterday, why aren’t you ok today?” or the hollowing “We had plans, you said the other day you were feeling better. How could you let me down like this?”. Therein lies the true curse of “I feel better”; in the words of Admiral Akbar “IT’S A TRAP!!!”. So when you feel like using those three beautiful words that you pray will last forever, remember to pace yourself and anticipate physical reactions if you just got over a mysterious illness like I had.