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.



The Cemetery of Boxes

As my illnesses have progressed I have found myself less and less capable of doing the most basic of tasks. My roommates, sisters, and classmates taunt me about my symptoms or look at me as though I am lazy or even have psychological proplems. For example, my roommates are now under the impression that I have developed a shopping addiction due to the regular supply of packages that arrive at my front door on the daily. But in fact these are the things they would be picking up at Wal-Mart or Food Lion, and I have simply lost the ability to safely walk around stores. After all, even with a cart and cane with me I still managed to blackout in the Dollar Tree. Honestly had my mother missed the opportunity to catch me I would probably have a concussion from those hard floors. And thus for my own safety, I build a weekly cemetery of boxes from my medical deliveries, grocery deliveries, and health supplies.

One of my sisters has a short list of regular taunts about the amount of salt I add to my food, the way my brain turns sideways when I take my pain meds or my anxiety meds, or even cruel jokes about my need for a cane. She’s told me I eat like a fatty, called me a druggy or addict for needing medication.

My classmates, not all but a fair few, have accused me of faking if they see me walk a short distance without my cane, paying no attention to the drunk-like walk I have without it.

My point for all of this is chronically ill individuals lose a piece of their humanity with every diagnosis that gets tacked on. It’s cruel to take advantage of our adaptations as a point of your own amusement or as a way to bolster how you view your healthy body. We did not choose this life, but we are warriors who fight every single day for our own rights as well as those of our peers. I have stopped apologizing for my illness, and on the advice of my mother I feel we should all remember “your parents chose to have you, you had no say in being born, especially to live this life”. I cling to these words when I feel the need to cry, when I feel broken, when I feel life isn’t fair, and when I think I cannot go on; these words remind me that (often times) no one could have helped our situation, but our strength to carry on gives it’s own meaning to our life. There’s a strength in us that no one can imagine, and no cane nor cemetery of boxes can change that.

New Words

This past week I have learned some new words to describe my health, but I have also decided to stop using some words as well. On Monday, I arrived at an appointment with my neurologist to begin nerve block shots for my migraines in lieu of botox. During this appointment I pointed out that I had developed some of the worst pain of my life recently with my migraines and was in desperate need of prevention and relief. When my doctor inquired about any new symptoms I explained that over the last teo years or so, I typically have severe pain on the left side of my head, as well as lose vision in that eye, I have muscle weakness, and trouble with words. I explained that this accounts for approximately 60 percent of my migraines. She explained to me that it appears I have developed Hemiplegic (my first new word) migraines, which both mimic strokes but also increase stroke risk exponentially. I had to be taken off of my birth control pill and begin taking a daily dose of aspirin to avoid my risk of blood clots. This was the effect of that new word. I am now scheduled for MRI’s with and without contrast in two weeks. One of my support network members explained that they are probably looking for foci, a type of mark that can be left on your brain from a Hemiplegic migraine, it also indicates if there are markers for previous stroke damage. So, obviously, foci is my second new word, and it absolutely terrifies me.

As I previously mentioned, I have also begun to phase certain words out of my vocabulary when it comes to my illnesses. The first is “sorry”, I will no longer apologize for being sick or having to slow down because your pace is too fast for me. The second word is “definitely”, as I have learned that my illnesses are ever changing, evolving as medicine catches up with the oddities of my body. The last word is more of an action than a word and that is “plan”. I love to plan, and create plans; but as my illnesses have progressed, I have learned that planning for me will more often than not fail. So I choose to live more freely in order to feel less failure and more as though I have some control in my life.

These illnesses have been great teachers for me when it comes to life. I have become more willing to accept change. Carrying a cane, using a shower chair, and having a list of illnesses that rival the health of someone in their hundreds, no longer gets me down because I will no longer let these words, new and old, to define me.

Why Is Showering So Hard?!

As a potsie, I struggle with my hygiene. I’m often too tired to take care of myself and lack the ability to stand long enough to accomplish most basic hygienic tasks. With my port accessed 6 days a week and unable to get it wet, I find it hard to clean my body. At first I resorted to sponge baths, but they took forever and I never felt clean after. Then I switched to baths with the tub only halfway full which cleans my skin, but I still can’t clean my very long hair without getting my port wet (and those shower covers homehealth sends don’t work at all). Now my boyfriend or roommate, whoever is available, washed my hair over the tub while I lean against it similar to at a salon but that hurts my neck. Luckily I will soon be receiving a shower chair for Christmas with a back to it so I can sit and do that all by myself, without fear of passing out from standing under hot water for so long. When I wasn’t sick I never thought about how difficult all of this is, I took so much for granted. Now I have a new focus: my teeth. I have always had problems with them, my mouth is too small for them all to fit so they overlap tightly and shred dental floss every time. And now my blood pressure regulation medications have begun drying out my mouth making the plaques dry faster and making them harder to remove. I am a very image conscious person, so this worries me. Do any of my readers have suggestions other than biotene drops/mouthwash? Any help would be appreciated 

To My Boyfriend’s Family Who Don’t Know The Truth About My Illnesses

Dear (hopefully) Future In-laws,

You’ve now known me for going on 2 years and yet you know very little about who o truly am. I am an advocate for people with chronic illnesses and disabilities, I am a hard core leftist and feminist, I analyze every action you make and try to justify even some of your most abhorrent behaviours because to me all people are born good and it’s out situations that change that, and finally (and more importantly) I am very very very sick and will continue to be that way forever, and in spite of your disapproval of your son choosing a “sick mate” he still loves me endlessly. He adapts to take me on adventures at my own pace. He helps me set up my IV bags at night and holds me tight to keep me warm as the cold saline runs through my body. He wants me to have his kids, even with the risk that they’ll turn out like me. He wants to marry me, knowing full well that I will most likely just get sicker. He learns what he can about my conditions so he can help me in any way he can. He shows the compassion for me that I expected you both to have honestly: after all you’re both medical doctors. But you want him to find a “normal girl”. Not just a girl who was so fascinated by you that I read your dissertation upon meeting you, like I did. Not just a girl who sits through your family fights and keeps a smile on her face because I know all families have at least a little dysfunction. And not just a girl who is well educated in the medical sciences, thanks to being sick actually, and can hold her own in conversations about the newest topics in medicine. But he chose me; in fact, he chooses me every single day. I hide my port from you, but infuse in your house at night when I visit. He and I both hide my migraines from you, pretending my vomiting is food poisoning from one of the many restaurants you take us to. Al sneaks me icepacks after you go to sleep to cool my head. I have found the man who holds a death grip on our love, no matter how hard our love changes and how many o stacked we face and how truly hard it can be to hold onto his love for me. For that I thank you. I would also think it kind to apologize for my deceit about my illnesses to you, but as an advocate for those like me I will not indulge in such archaic beliefs as to think that sick people should not be loved of make families. So again I thank you for the gift of your son, but also I forgive you for misunderstanding our love, that is my kindness to you. 

Small Sick On Top of “Normal Sick”

As finals and the holidays came and went, I encountered tons of bacteria and virus riddled humans outside of my fairly isolated bubble of life. The grocery store and post office became daunting breeding grounds for disease, and the handles on gas pumps would only be held with a napkin between the pump and my hand. I just keep getting sick. First it was a bug I picked up on a family trip to the beach to see the lights and Christmas parade, I undoubtedly picked up the germs sitting with my hands on the dirty sidewalk surrounded by strangers with coughs as I enjoyed the parade. I was sick for two weeks, but it was worth it for family time. Then during finals the girl next to me in class gave me her flu, which was miserable but led to me to bond more with my roommates who on turn caught my sickness and were quarunteened with me. And now new years has come and I caught my boyfriend’s cold, sadly without even getting that midnight kiss, but that means even if I stay sick I can still visit him without fear of getting him sick. These incidents suck, but I’ve looked for ways to spin them into positives, and that’s my newest super power: cynicism with random surprising positivity. 

Trying So Hard For Good Days

Over the last few months I have tried desperately to put on my “good day” face as often as I can stand it. I have pushed myself to go on trips with my girlfriend, spend hectic but fun times with my family, work hard at school, and try to rebuild my friend network. This has been exhausting, but oh so very worth it. I am sick, I will always be sick, but I am making changes and being bolder than I used to be. Sadly I’m still running on whatever minute particles of spoons I can keep a death grip on. But I’ve made great changes to be as close to a normal 20 something in the US as I can be, and I think I’m doing pretty damn well.

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.