Category: Patient Voices
September is Chronic Pain Awareness Month!
When most people think of sarcoidosis, what usually comes to mind is… ok, let’s start by correcting that – most people don’t ever think of sarcoidosis at all (in fact, most have never even heard of it). Once they learn of this disease, usually because someone...
Coping with the Setbacks in Sarcoidosis
If you have been with living with sarcoidosis for any amount of time, you know that this nasty disease will often kick you in the teeth and leave you frustrated just about every day. As a fellow sarcoidosis sufferer for about the last five years, I know that I wrestle...
Patient Perspective: Minimizing Sarcoidosis Is Harmful to Chronic Patients
Sarc warrior Dena experienced what many sarcoidosis patients are told at the beginning of their journey- that sarcoidosis wasn’t a big deal. So many patients hear phrases like “at least it’s not cancer” or “you don’t need to worry...
DENIED: How to Manage the Emotional Ups and Downs of Battling your Insurance
“The Actemra has been denied. We will start the appeals process.” These two sentences glare at me from the patient portal message center. I feel exposed and vulnerable. Here we go again. My doctor says I need this medication, but my insurance is saying “NO.”I was...
Being an Engaged Patient: Staying Up-to-Date on Research
In 2014, I was diagnosed with sarcoidosis during an unrelated ER visit for an auto accident. I had a chest x-ray to rule out a fracture from the seat belt, and unbeknownst to me, I had hilar and mediastinal lymphadenopathy. My journey with sarcoidosis began that...
7 Questions for a New Medication
Doctor’s visits while dealing with sarcoidosis can feel overwhelming. Sarcoidosis patients often have a lot of symptoms, medications, doctors, and other things to juggle. When you get to the doctor, it sometimes feels like there is not enough time to cover...
Life as a Sarc Warrior: Making Our Medical System Work for You
Life with sarcoidosis can be hard. This is why we reached out to you, our patients, for advice on how to deal with our medical system.
Life as a Sarc Warrior: Quality of Life
Life with sarcoidosis can be hard. This is why we reached out to you, our patients, for advice on living a healthier lifestyle.
A Sarc Warrior’s Perspective on Pulmonary Rehabilitation
Many sarcoidosis patients struggle with lung function which can make exercise seem impossible. Programs like Pulmonary Rehabilitation help patients with lung diseases improve lung function, reduce symptoms, and improve quality of life.