DEAR EVERY NURSE WHO HAS EVER TAKEN CARE OF ME,
Some of my doctors don’t even know my name, but many of you willingly send me messages to check in on me. What a difference?!
My friends call me a “Professional Patient” because my pharmacist knows me by name, I am always going to my next doctor’s appointment, and organizing my weekly medication takes an hour every Sunday. I suffer from Chronic Neurological Lyme disease and co-infections (babesia, bartonella, and God knows what else), having you as a medical support staff is crucial. Month to month, I am taking anywhere between 15 and 52 pills and supplements. Managing these, the drug interactions, what can’t I take with what, is difficult. So do I even ask my doctor? Do I want to wait around for my doctor to find my chart, and then wait some more while he reviews it to give me the right answer? No, I do not ask my doctor, better yet I can message my nurse and she can help to guide me.
Now I am lucky, I have lots of nurses in my life, and many of whom have become my friends in my journey towards health, but let me tell of some that have made some seriously amazing impact:
There is my best friend, Carly, who has been inspired to become a nurse through watching my journey with Chronic Lyme over the past four years. She had stood by my side while I have been too sick to get out of bed, to saying in with me to watch Say Yes To The Dress on Friday night while everyone went out, and she even came with me to get my PICC line placed two years ago and asked all of the right questions along the way when I couldn’t speak for myself. Thank you from the bottom of my heart, Carly.
Then, there is Paula, a nurse from Boston Children’s Hospital, and member of the Association of Vascular Access, who has never officially been my nurse, but is always there for me when I have questions about PICC lines, ports, what my test results mean, and even guidance on how to go about care now that I have graduated from college. Thank you for your kindness and continued support, Paula.
Next comes Amelia. She was my primary care nurse while at Babson College. I had my weekly appointments with Amelia to do my blood draws, check on my medications, and the usual round ups. While I was at college going through treatment, I never felt like anyone understood. But I felt so lucky to have my weekly 30 minute checkups with Amelia because she treated me like a person who just happened to be going through treatment, instead of a walking disease like I often felt. Amelia, you will never know how much you have done for me.
Finally, I want to thank Lori, my home care nurse. She drove 45 minutes to my home every week to change my dressing, take my blood pressure, and to deliver my PICC line medication. When I had PICC line freakouts, like when I accidently fell asleep while doing my IV of Flagyl, and I woke up with the blood going up the line the other way, she answered the phone at 11:30 PM and told me what to do to fix it. Coincidently, she had a PICC line too for Chronic Lyme, so more then ever, she knew exactly what I was going through. She told me how to protect my line when I just wanted to do normal college things. In fact, she was the one who told me to wear a cut sock on my arm, and that is what inspired me to start Mighty Well and to develop PICCPerfect. So truly, thank you to Nurse Cardoza for answering my calls, texts, and emails, for being a guiding light during my difficult treatment, and finally, for making me feel like someone else understood.
I could never do what all of you do. Nurses, you are selfless, hard working, friendly, and personable. You see patients like me at our worst, but have made me feel at my best. You are my heros.
With Admirations From Your Ever Grateful Patient,
Emily Levy
Professional Patient, Boss Lady, and Lyme Disease Warrior
P.S. My doctor and I broke up. I just didn’t call him back. I heard he moved on and found someone new to fill his time.
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