Hi lovelies, thanks for stopping by and taking the time to read. Today’s post is very near and dear to my heart. It is more for my own sake than anyone else.
Day 22: How do you feel you have been treated by the medical system? explain.
I have been mostly fortunate with how I have been treated by health care physicians. I had one neurologist who refused to treat me after my EEG came back normal, and one cardiologist who told me it was psychological – even after my psychologist at the time said he didn’t believe it to be psychological. Other than that I have been lucky. I know plenty of other chronic illness warriors who have, and continue to be treated like they are faking it, doing it to themselves, or like it’s all psychological.
My current health care team is amazing, and I wouldn’t switch them out for anyone else. There are 3 members of the team in particular, who I strongly believe are responsible for me being alive today. As such, I have decided to write a letter in this blog to each. Please excuse the length of this post.
Names have been withheld for privacy’s sake
To my Nurse Case Manager,
I was thrown on to your case load a few years ago, after being hospitalized frequently for dysautonomia. Initially, we would only talk after hospitalizations, or after a few weeks time. These past few months, something changed in my already dysfunctional body that ultimately got me to where I am now – unable to eat or drink, solely dependent on artificial nutrition pumped into my veins to live. It has been a grueling few months filled with tests countless treatments, reactions, infection and complication, and endless heart break. Throughout all of this you have spent hours patiently on the phone with me listening to me cry, complain and express my feelings. You’ve fought to get me the help I needed, and have spent both professional and personal time communicating with me and other physicians regarding my case. I’ve been selfish with your time but being sick, so young, has been unimaginably hard. Watching anyone, especially someone young, go through something impossible knowing you can’t fix it has to be difficult too. So does hearing a 26 year old call you daily saying “I think I’m slowly starving to death, and no one is doing anything to stop it.” Despite everything you’ve soldiered on and continued to fight for me. You continue to check on me, and my physical and emotional well-being. Words cannot express how grateful I am to have you on my health care team. As far as I’m concerned, you are part of the reason I am still alive.
Thank you from the bottom of my heart,
To my Primary Care Physician,
After my last Primary Care Physician left, I felt lost. I finally had a physician who believed me and was willing to fight to get me the answers I needed. Then suddenly she was gone. I heard good things about you through my previous physician, my case manager, and some of your other patients. Despite this, I have to admit that I was anxious about our first appointment. I had been having difficulty with eating for a few weeks prior to our first encounter. I was worried that you wouldn’t believe me, worried that you wouldn’t take me seriously, and worried wouldn’t be as informed on POTS as I had been lead to believe. My worries were unfounded. Our first encounter you were on the game. You started us down the road of the long, arduous journey – a journey that you have reliably and consistently fought to get me answers on. Your guidance, support, compassion and genuine concern has kept me fighting when I felt like there was no reason to fight.
I believe that you, and a few other members of my health care team, are the reason I am alive today.
Thank you for being an amazing and caring part of my team.
To my Gastroenterologist.
I do not even know where to start my letter to you. The first time I met you, I was admitted to the hospital due to my inability to eat or drink. The moment I met you I was impressed with your bedside manner, compassion, and knowledge of dysautonomia. You have taken my issues seriously, and have have stuck by my side while treatment after treatment has failed. Each time, you have come back with something new to try, even when you were unsure of what to do next. You have been unafraid to reach out to others for new and differing thoughts and ideas. You have patiently and calmly addressed all of my concerns, no matter how big or small, and allow me to be a part of the decision making process.
I deeply believe I am alive, in part, because of you and your efforts.
You’re an amazing, compassionate physician, thank you for being a part of my health care team.
I would also like to take a moment to mention my nutrition physician, and infection disease specialist. My nutrition physician and I have spent much less time communicating and meeting than I have with my other physicians. I’m not sure if I made a lasting impression on him or not, but he made an impression on me. He was among the first to suggest supplementing my nutrition as I was not getting the nutrients, vitamins and minerals, or calories that I needed to survive. He is the physician that prescribes and manages my TPN. As much as I dislike TPN, and the complications that come with it, I am also grateful for it and the fact that it has kept me alive. My infectious disease specialist, in different ways from my other health care providers, has also saved my life after battling with sepsis. She is also an amazing, caring, and compassionate provider.
Thanks everyone for stopping by and reading. Lots of love,