#GetThePiccture is growing into a diverse compilation of uncensored self-expression and empowerment. Thank you Lauren for your vulnerability and for sharing with us a chapter of your journey to healing with us!
Hi! I’m Lauren. I’ve had some type of central line consistently for about thirteen years now! I’ve had ports, PICCs, and currently a tunneled Hickman catheter. While they’ve all got their pros and cons, they all have the one huge pro, they give me life. I rely on IV nutrition, also known as TPN, due to Chronic Intestinal Pseudo-Obstruction. Basically a long fancy way of saying my guts don’t work the way they’re supposed to. They don’t move properly (peristalsis) and they don’t absorb nutrients.
My central lines have given me the opportunity to give my body the nutrients it needs to live my life to the fullest. I go out with friends, am able to travel, was able to plan the wedding of my dreams to my sweet husband, play with my puppy, shop for cute vintage dresses, and all types of other fun things I love to do!
Of course there are bad days, where I really wish I didn’t have to deal with this extra appendage. And I won’t sugar coat it, some days I just plain hate it. Especially when it comes between me and a super cute outfit, as I do not enjoy having my line visible on a day to day basis as a personal choice. It’s also beyond frustrating when there is an issue with my central line because it is my lifeline. It sometimes even involves a spontaneous several hour road trip to be fixed at the hospital where my specialists are. But in the greater scheme of things, I am so thankful for the life my central line has allowed me to live! And most times, I forget it’s even there because it feels like it is a part of me.
Throughout the years of having central lines, I’ve learned many tips and tricks to keep life running as smoothly as possible. Showering used to be a huge issue, I’d even have my mom wash my hair in the sink due to fear of showering with my very first port. Now I’ve come up with the “giant band-aid” method, and shower like a champ! I’ve even started a blog that I use to share the tips I wish I’d had a blog to teach me all those years ago! If you’d like to check it out, the link is prettycouchpotato.com
A huge thanks to Briana Beaver for allowing us to share our stories of our relationships with our central lines!
How creative is it that Jessica has affectionately named her port?! As an extension of the human body, I could see how giving this apparatus a nickname could make daily life with a central line less daunting. And, what an adorable name she chose! Thank you for sharing your #getthepiccture Jessica! ••
My relationship with my port is complicated. I have Ehlers- Danlos Syndrome and because of that I have severe Gastroparesis. I started with just peripheral ivs to receive hydration because of my stomach being partially paralyzed it helped me feel so much better to be hydrated but my veins kept rolling and blowing. After two months the day came where I had three nurses and about eight attempts and they couldn’t get a line. That was when my doctor decided I needed a port which I named Paisley. Paisley is great in that I get all the hydration I need and I’ve ended up needing other medications. Plus I don’t have to worry about blood draws because of Paisley. However, sometimes I just don’t want to have to deal with it. I also have a lot of allergies and most of the time it’s very uncomfortable because of the dressing. I’m thankful I can get what I need but I’m honestly frustrated and tired of fighting with my port site for breaking out and being itchy. So Paisley, my port and I’s relationship is complicated. It’s love and hate.
Ta da! The #GetThePiccture flyer has arrived! Thank you very much to Brenda Frederick for donating your skills to support this awareness campaign! Please share and help spread the word, spread awareness and spread empowerment! Those with any and all health conditions and types of central lines are welcome!
Head on over to Instagram @brianabeaver1 to find out more about this adorable kid, the one and only Legend!
Against medical advice, my mother made the decision to take me home to die from Stanford Hospital six years ago today. To wither away completely within the confines of indifferent strangers would have made an unimaginable reality somehow worse. Since that time, I’ve credited my still persisting pulse to the genius of a doctor. Now, with some distance, with some sleep and internal evolution, I’m changing that story. I am still here because of me. I’ve chosen to keep breathing, keep eating, keep believing, even when I’ve screamed and begged for the crimson flowing inside of me to quiet. My survival is nobody’s victory but my own.
Image from Life in the Lyme Light. Writing by Briana Beaver
Implicit and often explicit within the code of honor of chronic illness throbs the expectation to be fearless. Brave, consistently optimistic and unafraid we are expected to embody a paragon of moral superiority while simultaneously navigating a macabre terrain of unyielding pain, insomnia, medical bureaucracy and imperative self-advocacy. Well, let me tell you how ridiculous this all seems to me. The transparency and full disclosure of my fear and uncertainty is one of the very things that has permitted me to persevere. So, this is me inviting you to express proudly your deepest fears, doubts and frustrations. Gooooooo!
Art by Els van Laethem
Living with a central line presents complex physical, emotional and mental experiences. No matter the reason necessitating the use of a PICC line or port, the daily ins and outs of this subculture are often left behind closed doors. Get The Piccture is an opportunity for you to share your unique story in companionship with your central line. You are welcome to craft a short story, including a photo to be featured on my blog Tick Talk. Love it? Hate it? A little bit in between? In what ways does living with a central line impact your life? What do you wish others understood about your central line? This is an opportunity to share your raw sentiment, vent and help others #GetThePiccture!
Submissions should be copy and pasted into an email, please do not send a word document! Along with a short narrative, please include a photo and send to firstname.lastname@example.org. Thank you!
Please reblog and spread the word!
Upon meeting again, face-to-face, the other half of my DNA, I was sedated by a surprising lull of indifference. Though long-distance and litigious in nature, his resume of leaving is noteworthy. Equally stunning was his history of evaporating as ether, especially at the eleventh hour of my trajectory. And still, with the human who had shown up for a little else than my conception folded awkwardly atop my couch, I felt a blissful nothingness.
Much to his chagrin, the realization that the dozens of abandonments he had accrued paled when juxtaposed with my battles within my bones. Whatever psychobabble he projected within the confines of his professional and personal circles were negated by my very existence. No, thank you, Freud, I do not have daddy issues. Much to the contrary, it is my “daddy” who has issues.
There are most likely cadres of women brainwashed into believing that the absent father figure has trampled their minds. Issues with their fathers have dictated a cycle of insecurity which is manifesting in their… And so on. While I’m not underestimating the trauma that can occur from abuse or abandonment of a parent, I am calling attention to the notion that such circumstances create a pathology within the child. Many times, I think the internalization of a parent’s mistake is preyed upon by our society.
Instead, I offer a remedy of self acceptance and compassion. It is not a diagnosis of daddy issues quite necessarily, I have come to find. I am comforted by the indifference I feel toward the stranger who helped bring me into this world. I take refuge in my knowledge that indeed, the apple did fall far from the tree.
By the age of seven, I had my spiel committed to memory like a seasoned politician. At the beginning of each school year, I would politely educate my pupils about the nature of my disability. I was cognizant to provide only pertinent information, not an excess of fear- inducing data. Even at this age, with my sun-drenched hair sprouting from the top of my head, I knew what I was saying was significant. Significant not only in universal context of the topic, but also in the weight it bore on my personal well-being. Would my classmates accept me?
Though concealed was my motive to detour any teasing and tears, the macro level threads of awareness I was sewing entered my mind. It had already become intimidatingly apparent to me that whatever alternative views–beliefs that did not criminalize me for having a disability–I wished others cultivated, were going to have to be planted by me.
“Even though I walk and talk differently than you do, I am the same as you are.” I can still recall the words I imparted to my peers, teachers, and adults revolving around my world. “I am not contagious, it is safe for you to be my friend.”
In myriad contexts, with varying diction, I am still tossing out these reassurances like shimmering copper into a wishing well. I am asking others to erase the dangerous indoctrinations of their youth about others with disabilities, and to embrace diversity, recognize shared humanity, and reach out with respect.
Why should you care?
Inevitably, you or somebody you love will develop a disability. This is a statistical fact. With equal rights and access declining daily, the best thing we can do is learn to support one another. Conversations about navigating interactions with intention and undiscriminating respect are more imperative than ever.