For those who endure the silence with me

The most difficult part of being sick that I have experienced in the past, now almost, two and a half years, has been the disconnect between my brain and my voice box that occurs with each and every steroid treatment. Now I’m not quite sure if this happens to anyone else, but when the Prednisone or the SoluMedrol or whichever infusion or injection it is begins I am sucked away into my own personal universe. It feels as though I’m being crushed by an immense weight I cannot see. It is being unable to turn my thoughts into something even semi coherent to myself let alone anyone else. It is literally being unable to make words. Every time I feel trapped and crushed by the depression that comes with having your serotonin levels obliterated. Every single time, I have felt the weight of it as I watch the distance between myself and my friends, my family, my loves growing exponentially with each day gone by. It’s horrible. I hate it with every ounce of my being and yet, I can do nothing but watch in horror as it plays out. My brain plays tricks on me; hallucinations, vivid nightmares and the deepest depression I’ve come to know.

Every single time.

The first experience. Two years ago this February. I laid in my bed in the dark alone unable to do anything, but text one of my closest friend at the time, “help.” Of course, they had no clue what to do and after taking me to a farm that I hold so dear for a few days I found myself in the hospital with doctors being unable to do anything other than drug me so that I no longer had to feel the horror of it. Now, I no longer seek out help at the hospital. I know that this will end.. But it has only been a little over a week and I find this hard to believe because time drags out and it feels as though I’ve been lost for months. I’ve convinced myself that my best friend, who loves me more than I am probably able to comprehend, does not love me or want to see me or talk to me or care. Why? I wish I knew. I wish I could experience this differently or not take the drugs in the first place but I do not have a choice and my hope is crushed and my will is broken with every soul shattering nightmare that wakes me from my sedation. I live in fear during these times. I exist in survival mode: distract or drug. This is the only way I know how to survive it.

I apologize in advance to those who experience this with me.

Pardon my grammar.

XO.

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My Blog Turns One: A Year of Refection

A year ago today I decided to create a blog detailing my life and struggle with the chronic illnesses and disabilities that will most likely take my life. Back then I never in my wildest dreams could have imagined that my words would not only reach over 9,500 people from more than 40 different countries across the world, but also help to make connections that I am certain will last a lifetime. And all this while advocating for change and awareness. Sharing my truth in such a vulnerable, uncensored and public way has allowed me to transform into the confident, strong being I now know that I was meant to be.

I can’t tell you the amount of negative feedback I have received:
“You should get a life.”
“Don’t you have anything better to do?”
“You’re just one person. How could you possibly make a difference?”
“But you don’t look sick.”
It goes on and on as I’m sure it will continue to, on and on.

But what these individuals fail to see is that I am making a difference with every unfiltered story I bust out in some random coffee shop. The reality of existing in the way that I, and so many others, do is far from pretty. In fact, it’s many people’s worst nightmare; a life ruined by illness. They look on with pity and a strange sadness deep within their eyes that I do not quite understand yet. But I have never viewed this huge life alteration in the way that so many others seem to perceive it. That’s not to say it doesn’t absolutely and utterly suck sometimes or that I do not struggle because I do, incredibly. I have learned that it’s okay to be sad sometimes, to be devastated sometimes, to be so incredibly angry sometimes… as long as, at the end of the day, I keep going. It is because of this that I consider myself not simply to just be surviving, but to be thriving. 

I do not share my story with an unequivocal transparency to gain the pity of my readers, but rather quite the opposite. I share the reality of my situation in the hopes that my words will resonate with others who are similarly struggling both with the illnesses that wreak havoc on their poor and undeserving bodies as well as the disturbing stigma that envelops the chronic, terminal and mental illnesses oppressing each and every one of us. Perhaps that is why we are the ones’ who have been destined to battle these often invisible diseases; our own cells launching calculated attacks on the very body that they are created from. Perhaps we are the strong ones. Perhaps, just perhaps, WE are the ones who were made to stand up and fight for the right to be accepted, to be loved, to be noticed, to be cared for. We are it and we so much more than what the outside eye can see.

So, thank you. Thank you to everyone who has helped grow my once tiny idea, into a platform that has reached to promote hope, change and the will to fight for one another. I could not do it without you all. There are no words to describe the sheer amount of gratitude and love that has filled my heart.

Thoughts, October 24th

It’s past 6 am now and I still haven’t gone to sleep even though I doubled my dose of sedatives earlier. The wind has picked up outside so there is a somewhat consistent crossover between the lull of an early fall morning and the individual gusts that sound sort of like waves if you imagine yourself on the seaside. There are other noises too. The growl of my now empty stomach after a night of being sick, my heart beating a little too fast for comfort and the creaking of the house as it adjusts to the cold. 

Tonight. Today? This morning, existing in the way that I do now feels heavy and impossible. There’s been a death amongst my online community of illness fighters; another life taken far too soon. I find my mind wandering towards where I am headed, but I have to stop myself. On Thursday my doctors looked at me with the saddest of eyes. “Things are progressing much more quickly than we had thought,” was what they said before they went on to teach me how to use catheters on my own. They went on to explain that the repetitive infections I’ve been dealing with have been due to my failing muscles, just a small part of the neuromuscular failure that my body is becoming. Through all of this I felt level headed. After all, this was just another step. A nurse came in with a tote filled with samples and stumbled over her words as she attempted an apology. Such a shame that you have to do this at such a young age. I had never felt ashamed of my body’s self destruction until then. I kept it quiet for days before telling anyone. 

The thing is, everything about my life that once felt certain no longer does. The path, the people, the existence. My illness mocks me like a bad fucking friend. It robs me of my dignity, my hair, my dreams, my choices. I no longer have control over even the simplest of things. I will most likely be late or even unable to even make it to that birthday party I RSVPed to. I have become the flakiest friend you know except you can’t even blame me. It’s not even my fault. Sometimes I feel guilty for this, other times I don’t. 

I am a host to a demolition derby of cells leaving behind a wake of failing organs and nerves. I have to stay positive, keep on moving forward. I cannot stop and it’s utterly exhausting. My bed has become both my favorite place to seek refuge and my least favorite place to be swallowed whole by the abyss that is living life with a giant question mark attached to it. The emotional toll, it seems, has begun to catch up to its physical counterpart. And while I thought that I understood that I truly wouldn’t get better, I am learning that I have absolutely no clue.

Two

Two years ago, yesterday, marked the first time I had ever felt the kind of pain that I know face on a sometimes daily basis. Today marks the anniversary of my first admission and the first time a medical professional would tell me that the pain I was experiencing could not be real because the basic workup they had completed showed nothing. Long story short, that doctor was wrong and I have been in a state of declining health ever since.

I have a lot of mixed feelings about these days. September 13th and 14th are a vivid reminder of how, in the blink of an eye, my entire life changed. It’s easy to look back on life lost and dreams abandoned. I could have graduated with my class. I could have had my dream job. Could have, could have, could have. But I don’t. Those wild aspirations no longer hold a place in the forefront of my mind and have, instead, been replaced with a determination that only comes with one’s fight to survive.

Over the past two years, I have exhausted every treatment idea and every doctor in the State of Washington. I’ve traveled across the country to see some of the most renowned doctors the United States has to offer only to be turned away after their ideas also come up short. I have become an expert at advocating for myself, at fighting tooth and nail for whatever I need. For any of you who didn’t know me pre-life-altering medical disaster, I was immensely shy and incredibly docile. Now, I’m a little more explosive. Full of passion and fueled by the rage and frustration created by our backwards healthcare system. I’ve turned my horrendous new life into a platform for me to raise awareness and connect with others navigating through the same kinds of struggles.

Two years ago may have been the end of the life I had built for myself. Two years ago may have been the end of the Aleigha my friends and family had come to love. Two years ago may have been the most horrible few days of my life, but through the despair and the pain and the loss I have grown into an even better, stronger and more empathetic human being. Despite everything that is going wrong I have taught myself to find hope where there is doubt, light where there is dark, and to keep laughing through life even when it seems impossible.

Self Love

I haven’t written a post in a while now, so I thought I’d try to explain my absence from the internet world and real world alike. As many of you may know I have been struggling with motility issues that have caused the worst six month bout of nausea and vomiting I’ve ever experienced. I have gone from my healthy weight of 115 to sitting in the mid 90’s. The worst thing about this is that I don’t look all that unhealthy when you see me on my rare venture out of the house. Unless you pull out a photo of what I looked like this time last year or, even, this time six months ago. I’ve lost around twenty pounds and with it my capacity to think properly, be present, drive, or do just about anything that requires me to physically or mentally exert myself in any way.

Now, I have always been a very tiny human, but I also strive to be a healthy one. Standing an inch over five feet, my once muscular gymnast body got comfortable weighing a very healthy and happy 115 pounds. Needless to say, rapidly dropping down to 95 in six short months (that’s 20 pounds people) is not okay with me or my body. I am unable to keep down food on most days simply due to the debilitating nausea I have come to live with. Zofran of the highest doses can’t keep this stomach in check and medical marijuana has become my new best friend. Try to think back to the last time you had the stomach flu. Horrible right? This “stomach bug” never went away. On the days when I do eat, I spend my nights with an angry and often times abusive stomach, reinforcing to my sensory overloaded brain that maybe not eating is the solution. Cue the lack of appetite now. But anyone who knows me understands my love affair with food and that I once worked my ass off to not only gain weight, but gain muscle. And I apologize to the doctor who said, “Are you sure you just don’t want to gain weight?,” but you simply are wrong about me.

So, you can understand my frustration when I finally have to give up on trying to wear my favorite pair of jeans because they won’t stop falling down or when the woman working the fitting room at that store took one glance at me before blurting out, “I wish I were that skinny.” No. No, you don’t. I wouldn’t wish what this “skinny” is on my worst enemy. Remember that weight issues exist across the board and that no matter how much you are wishing for something or how hard you are working for something, you just do not need to comment on anyone else’s weight, or appearance for that matter, unless you are the doctor and they are your patient. Remember that you cannot make yourself feel better by cutting down others and that you, in turn, cannot make others feel better by cutting down yourself. Remember that self-love and body positivity are some of the most valuable kinds of love we have to offer. Remember that we can never truly know what another person is struggling with and for this reason maybe it would be better if that woman had simply said, “Hey, those pants look great on you.”

Sick Sad

I’m stuck in a hole and I don’t know how to get out of it. Rather, I’ve been stuck and I have tried almost everything to get out of it. No matter what I do or how hard I try, there is always the deep, dark unique sadness that comes with life-changing, life-altering, life-limiting illness. And it’s always there. No matter how happy I am in the moment or how much positivity I attempt to emit or how many people I try to surround myself with.

It’s a sickness that makes you sad.
It’s a sadness that makes you sick.
It’s a never-ending downward spiral and it has one hell of a grip.
Sick sad.

Most times it’s just there underneath, lurking like some monster of the sea, but other times it’s the ocean itself; it’s surf overwhelming everything in its path and leaving its exhausted victims to be continually beat unto the shoreline.

I guess the real issue, for me, is that no one really seems to be talking much about it…And why would they. It hurts to talk about and to think about. No one wants to have to constantly consider the pain of another human being. But ignoring the fact that this type of suffering exists isn’t okay either. Ignorance hurts too.

So let’s start talking about the deeper and more difficult emotions that come hand in hand with illness.

I know I’m going to.

H O S P I C E

I would like everyone who wants to understand the effects of illness or, wants to feel heard or understood as a sick person to listen to the Hospice album by The Antlers whilst reading the lyrics. It is powerful, moving, and the closest thing I have found to both explaining and understanding this experience as well as the intense amount of grief and loss that has filled my life.

It it my life source and I plan to get a tattoo of the hands holding my upper spine with the date of my own diagnosis on the bracelet when I am able. It means the entire world to me.

Please listen. Please try to make an attempt to understand. I am begging you.

 

The Ugly Truth Is Also The Truth

I haven’t updated my blog in, well, too long. I think it has been due to an assortment of reasons… The fact that my condition has and is progressing in a horrible sort of way. That I am too drained, too tired, too dead inside to do much of anything despite what the up kept image suggests on my Instagram. The fact that it is a struggle for me to articulate my thoughts or keep up in a conversation leaving me feeling lost in the background until I end up retreating altogether.

However I am, on the clear days, going to write anyway because I believe very strongly that I deserve to be heard, that the battles I am fighting and the life I have been given need to be communicated so that maybe one day I’ll get to live in a world that isn’t so disturbed by the sight of broken bodies and no longer shies away from the discomfort that comes with conversing about illness’ ugly truths.

Because…

Two years ago an ER doctor refused to do any further testing and told me that my sudden pain and my decreasing health was all in my head, but here I am still in very real pain, battling some very real illnesses.

A year and a half ago I lost some of the people I considered to be my closest friends because they could not understand the ailment that had stolen my once healthy body and continuously battered my overwhelmed and grieving mind or the horrific side effects that changed me forever.

A year ago I found myself screaming into the void that is our healthcare system to find help for my rare diseases with nothing but radio silence echoing back towards me.

Six months ago I sat at the Mayo Clinic excited for all the resources they could offer me, but instead I was greeted by a preoccupied doctor who jetted off to Florida in the midst of my stay. I left broken-hearted with a massive bill that my family had to pay out-of-pocket.

A few months ago someone I trusted and loved told me that I was faking. We haven’t spoken since.

A week ago I got called an attention seeker for publicly taking the meds that allow me to function. I received the same sort of reaction for sharing my medical journey online.

The other day, some of my own family members made fun of my short, fuzzy hair that is growing. Little did they know I had been losing sizable chunks, clogging the drain each time I showered before I made the decision to shave my head to raise money in honor of another little fighter who resides on the west side of my state. Ellie Walton is 3 years old, had 17 surgeries and has been through more than any toddler should ever have to.

Last night I cried for hours to my mother because there are days when the pain of living the life I do seems never-ending and lonely. Because watching all of my friends graduate and move on into their lives with the gift of health was, for a minute, more than I could bear. I cried for my cyst covered kidneys, my endless pain, the constant infections, insurance coverage denials, my weakening muscles, failing digestive system and lack of treatment. I cried because I am 22 and I peed my pants in public the other day due to my constant muscle spasms. I cried for my past life and my dreams that were lost with it, but I also cried for my future because what will I do? How will I support myself? Who will take care of me?

I don’t want to live in a world that turns their heads from the lives that so many are forced to live. I shouldn’t be made to feel ashamed or less than or like a burden for needing help or talking about my struggles. Illness isn’t always smiles, life lessons and happy endings. It’s also full of humiliation, loss and hopelessness. It may never be normal, but it can be accepted because when it comes down to it… My truth, even the ugly parts, shouldn’t be taboo.

To the friend whose simple offer empowered me

Recently a friend of mine offered to take some photos of me. Going in I was honestly so nervous. No one has taken photos of me since I lost some of my hair and decided to shave my head. This seems irrational as I sit here in public writing this post, but the socially constructed phobia of hair loss is always lingering in the back of my mind even when I love being bald. And while I’ve never been one to worry much about my physical appearance the off-handed comments or lingering looks (okay, gawking stares) that I so often receive from others are enough to knock my confidence down a few ranks. Don’t get me wrong, I love my little fuzzy head, but every now and then I find myself yearning for the protective blanket of hair I used to obsess over. However, that’s all it is: a blanket. A place to hide, to blend in, and above all remain comfortable. That’s not really the kind of life I want to live, ever.

So although I was nervous as hell and a bit self-conscious, I asked Olivia to take my photos. The thing about Olivia is that she is such a comforting soul to encounter. I mean you can literally feel the love for life and for Christ and for you flowing out of her and wrapping you up in some kind of metaphorical blanket; the only kind of comfort I’d ever want to be swaddled in. While our encounter was brief, a mere 20 minute shoot, she managed to make me feel so beautiful and so loved in that time. I guess I really don’t know how to accurately express the way this small favor made me feel, but I want to say I felt… feel empowered. Because I am sitting here in a coffee shop as I look at these photos and I can’t help but smile at the strong girl I see. The girl who has been through hell and back and still managed to press on, find hope, and spread light and love in the midst of a rather dark situation. I want to thank Olivia a million times over because now I get to gawk and proudly say that strong, brave girl is me.

 

 

P.S. You guys should definitely check out Olivia’s amazing photography work on Instagram @oliviastrohmphotography or on Facebook @ Olivia Strohm Photography.

If You Didn’t Know, Today Is Rare Disease Day

There’s this quote in Tender Points by Amy Berkowitz that reads, “To google yellow wallpaper and find yellow wallpaper. Swatches of it.” I think that two years ago this quote wouldn’t have resonated with me the way it does now. I would have seen no greater meaning. What does yellow wallpaper have to do with anything anyway? But now… Now it hits me like a sack of bricks. Now looking something up on the internet and finding results, in abundance, seems like a luxury. But this is the reality of living with rare disease.

I remember sitting in a coffee shop after the appointment. I was sipping on a cup of tea, hoping that diagnosis I’d just received would be the one. I’ve had plenty of diagnosis’ in the year and a half I’d been sick, but each was eventually ruled out when they could no longer explain the disease that was rampaging through my exhausted body. People around me were growing more and more confused with my ever-changing list of ailments and ultimately, less than understanding. Anyways, it was during this time that I’d gotten a text from one of my fellow rare disease fighters. It read, “Dude. I could only find one credible article about your disease  online.”

Let that sink in.

There is an entire community of rare disease fighters out there and they honestly amaze me in almost every way. Strength, dignity, grace and courage in the face of diseases that ravage bodies and lives with dismal funding, few treatment options, and little or no hope for a cure. THEY are why today, Rare Disease Day, is so important. We exist in a world where the world knows little about the battles we face on a daily basis. Even doctors and researchers and medicine as a whole know so little when it comes to rare disease. This lack of awareness and funding only deepens the hole we are seemingly trapped in. We do have one thing though… Hope. Each year I get the pleasure of watching this community fight for themselves, for each other, for awareness, for help. They never give up in their efforts to change the way the world views rare disease so that no other will ever have to wait years for a diagnosis or be turned away from doctors. We strive to end the ignorance and make progress.

These are only a few, sloppy reasons why this day needs to be shared by everyone. I hope you’ll join me and #careaboutrare by showing your support for #RDD2016.

http://www.rarediseaseday.org/article/what-is-rare-disease-day