My PTSD has increased over the past couple of months as my weight has decreased. As each jutting bone becoming more pronounced, throbs anew the panic of the past. With chronic digestive distress not unlike the pairing of open wounds and scalding alcohol, I have been shoved down the corridor of the haunting trauma of my TPN days. Having literally nearly starved to death, I am well aware of how one or 2 pounds can be the difference of meeting and untimely grave or creating another sunrise. I know I am not alone in this persistent no nutrition nightmare, and for this I am deeply regretful. The kind of pain that accompanies prolonged malnutrition end it chronic digestive torture is truly without words. So, consider this a shout out of support and recognition for the dynamic double digit divas duking it out every day to be nourished.
A repulsive, disbelieving gaze diverted to the lumens dangling from the upper portion of my arm. I never truly apprehended its meaning as the scratchy, repetitive noise of the portable IV pump resonated in my ears. It was a reminder that this was not supposed to happen. Central lines were for the patients who were really super sick, the ones who had exhausted all of their options. That could not be me, could it?
But it was. I was airlifted via Angel Med Flight to a hospital out of state due to uncontrollable, severe reactions caused from God knows what. The first of my countless PICC lines was placed for TPN and high dose intravenous steroids. Oh, and Benadryl as needed. Eventually, we learned my reactions were a manifestation of Mast Cell Activation Syndrome.
Total gut rest on TPN and IV medications lessened the severity and calmed the reactions down. I was later sent home to begin real life with a central line. Suddenly, the horror stories replayed in my mind—sepsis deaths, site infections, blood clots and DVTs. My doctor was less than comforting. He offered no consolations to ease my mind, only risks to stress the seriousness of the situation. While the line was and is 100% necessary to save my life, it could take it just as quickly. He said, “It’s not if, but when.”
In the beginning, I was meticulous with my line. I knew I had to be. However, I was not over the top. I also trusted other medical professionals with line care. Although I was previously familiar with central line dangers, I never fully understood before my two battles with sepsis. (The first was from a skin bacteria and the second after the clave fell off of my bi-fuse extension). My entire perspective changed. I was no longer meticulous with my own line care, but absolutely anal. And my trusting nature with medical professionals disappeared, as I witnessed some of their mistakes with sterile protocol.
Since then, central lines have continued to be a critical asset to my treatment. I do not tolerate any oral medications and am reliant on continuous infusions. I must live knowing the impending risks of central lines and unconventional treatments like the Continuous Diphenhydramine Infusion, or not live at all. But is life with that kind of overwhelming anxiety considered living?
I recognize the fact that I can do everything correctly and sepsis can still occur. So, when the nurse leaves the flush uncapped a little too long, I kindly ask him to do it again, because it is hard living with the premise, “It’s not if, but when.”
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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!
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Here is what I really want to know: do doctors have a underestimated lack of knowledge or do they fail to employ it? I am currently working with a skilled, multidisciplinary nutritionist who has a superior command of knowledge to any doctor I have seen. Literally. After three decades of consuming doctors like water, I have never come across another health professional that actually attempts and succeeds in not only constructing a thorough history of my life, but also making intelligent, informed decisions for my treatment. I am flummoxed by the inaction and inappropriate lethargy of the medical community. This medical community includes not only Western medicine, but also naturopathic, holistic and all integrative approaches.
So, what do you think? Is it ignorance precluding healing or is it laziness? Gender and sex bias? Money? Or, perhaps a combination of all of the above.
My suspicions that I have been dismissed within the medical community as a failure and enigma have solidified over time. I believe that doctors have conveniently dubbed me a freak, yes, that is the technical term, based upon two factors. Number one, I think the fact that I have a physical disability makes for a cop out. Doctors can simultaneously blame the entirety of my suffering on my disability while also dismissing me because people with disabilities are regarded as inferior. Although no medical professional will ever admit to having overlooked my case because of my disability, I have evidence to the contrary. The discrimination based on disability and income coalesces; ideological frameworks posit that people with disabilities will not be socially productive and therefore do not matter as much. If my life is inferior and I won’t be contributing to capitalism, why would I be worth helping? Additionally, or perhaps, more importantly, how will I pay my bills to continue supplementing the opulent lifestyle of my doctors?
And, thus, here I am fighting still to save my life.
Although I’m still homebound, I feel as though some authentic piece of me is strolling around town as my writing and awareness tools gain visibility. The force for change, for equality, for justice I breathe into my work is emulsifying with every printed word.
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