Get The Piccture: Guest Blogger

This Get The Piccture  feature written by guest blogger Victoria Faling

Hi, I’m Victoria! I live with a host of chronic illnesses mostly stemming from Lyme disease and tick born infections. I’ve had both a picc line and port (currently living with a port) and it’s been a love-hate relationship with both. When I first got a picc line it was for IV antibiotics to treat chronic Lyme. I was doing infusions twice a day for 7 months! At first, I was excited to get it, honestly, because it meant treatment and hopefully feeling better. I was really thankful to be able to have the line and receive treatment for my illness. But, it wasn’t always easy. 

Having a picc meant being accessed all the time, itchy skin from the dressing, and not being able to use my right arm. It meant being attached to IV medications for a lot of hours in the day. It was a huge celebration when I finally got it removed because I was free to use that arm and shower and swim! I was so ready for it to come out and so tired of hardcore treatment. A couple years later, I decided to get a port placed so that I could receive extensive alternative IV treatments for a still lingering chronic Lyme infection. My veins were shot and, again, I just wanted to get better! I feel blessed to have my port and, again, have access to IV treatments. Although being sick and having to have a central line sucks, I’m grateful that I’m able to have it if I have to be sick and receive IV treatment. It makes IV’s so much easier and less painful. It allows me to do treatment in the comfort of my home. It gives me a lot more control over my treatment. I prefer my port over my picc line because I can de-access my port to shower, swim, or workout. I’m easily able to access it again when I need to do treatment, though. I also love that my port can last up to 10 years. It means that even if I reach remission, I can leave it in in case I relapse or in case of emergency. It’s like a little back-up plan implanted in my chest. Of course, having a central line comes with its issues. 

I’ve had an infection in my port which was scary and makes me a little nervous all the time now. I’m constantly checking it for signs of infection when I never used to worry. It also hinders some daily activities and I have to be careful knowing it is there so that I don’t injure the port itself or myself! And it’s a constant reminder that I have health issues, which can make me really sad at times and just want to get it removed. But in the end, I’m really thankful for Ivy (my port) and the treatments she has allowed to receive. 
Victoria Faling

@lemonsnlyme

lemonsnlyme.wordpress.com

The Danger of Advice

No matter how well intentioned, unsolicited medical and health advice waves crimson flags for me. In addition to simplifying the health challenges any individual is dealing with, a barrage of Google search treatments sent my way misrepresents the multifaceted individuality of chronic illness. Moreover, the subtext often feels to me like a disempowerment; as though someone else could orchestrate better my own healing. Perhaps one of the most terrifying popular patterns propagated within the chronic illness community is the urgent assertion that somebody else pursue the exact same treatment, in essence, a universal prescription. Not only is this dangerous, but it reaffirms the erroneous one size fits all paradigm for healing. Although I am happy to share about my successes and failures with chronic illness, I intentionally abstain from providing advice or recommendations. I do try, however, to be a supportive ally and transparent about the complex reality of chronic survival. 

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Take A Chance

There is no such thing as a comfort zone when it comes to chronic illness. However, the constant fear of living in calamity has permeated my being throughout the decades, leading me to barricade my own vitality with fear. This recognition has prompted me to work diligently on changing my patterns, my beliefs and to remember that not everything I think is true. In the past couple of weeks, opportunities have arisen, promoting new life, engagement and a window into marvelous possibilities. I’ve invested in a paradigm of wellness, of love, of compassion and connection by taking chances I would otherwise never consider. The knowledge that my own action is required to create a more fulfilling existence has finally translated into practice. Just do it, I’m telling myself. Don’t overthink it! 

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Code Chronic

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