Living with Chronic Disease: Expert Advocates

I sit here writing on Deck 5, in a lounge chair next to my husband, Greg, on our sixth cruise. This time, a two-week meandering through the Southern Caribbean. Although the islands we visited have distinct similarities, each one is identifiable by the culture and characteristics.

St. Lucia, for example, has the beautiful Pitons peaks and at their base, an active caldera bubbling a lethal dose of muddy sulfuric steam. The locals have turned the nearby blackwater streams into therapeutic baths for which tourists can immerse themselves for a fee. Taxis and busses travel endlessly carrying travelers through the seaside fishing villages to line up for a mud slather or a dip in the mineral laden waters.

The day we visited the island, our tour guide LaToya, offered a hypnotic and tranquil dissertation of the island’s history, culture, and botanical offerings. Our taxi driver, Steven, knew every turn and how to navigate the treacherous potholes lining the road. Through the mountainous switchbacks, Steven drove the bus full of Americans to see the island on which he was born and raised. LaToya lulled us into relaxation on the 3-hour island tour. We stopped off in a small fishing village with beautiful people, happy and friendly, full of life and peace.

Would we have known as much of the island of St. Lucia, its culture and history, if we had not had the expert advocates at the helm? I would say no, not even close. The day was worth the time and money spent to have professionals guide us along the way, answer questions, and reveal details we never knew, and show us places we otherwise would never have seen – especially the little fishing village.


This is how it should be for those living with Chronic Disease: we need an expert advocate team – specialized physicians in the field who know the intricate details about the disease, how it affects the whole body, and what the latest treatments and therapies are out there to help treat the patient. I have the expert advocate team now, but I didn’t always.

In 2003, I began my quest to find out why I was having debilitating pain and symptoms that interfered in my life. My skin was on fire most of the time, I had fatigue, and terrible pain in my head, neck, shoulders and on. I went to my family doctor, who then sent me to a neurologist, then an endocrinologist, then a gynecologist (seriously), back to a neurologist, then another. The last neurologist was head of Neurology at a teaching hospital in Richmond, VA.

Test after test after test, MRIs – nothing; CT scan – nothing; spinal tap – nothing; blood work – mostly normal. Sounds like it was all in my head, right? Well, the teaching hospital gave me a psychoanalytical test to find out if it was all in my head – I am perfectly sane. I have to paperwork to prove it.

Finally, an intern spoke up, “Why don’t you go see a dermatologist since most of this is inflammation in your skin?” Sounded great, I hadn’t see a dermatologist before and it couldn’t hurt to see one more specialist since none of the others had any answers.

The dermatologist visit was short. She came in to the exam room, listened to my complaints, and without looking at any of my tests, patient records, or radiology readings, she diagnosed me. It took five minutes – she walked out then came back with a medical book, flipped it open and said, “You have burning skin. I saw a few cases in my residency in Texas. You have Erythromelalgia.”

She was the first doctor I had seen that gave my condition a name. The medical book with an explanation gave me validation that I wasn’t losing my mind. I thought she was a genius. She prescribed a new medication used for nerve pain and I began a five-year stint of feeling better. The only thing remaining was the fatigue. This was in 2007, four years after the first visit to my family doctor.

In early 2013, the nerve pain meds began wearing off, something I had not expected and had not heard from my dermatologist – whether she knew that information or not, I will never know. The pain was no longer in my skin, but in my joints – deep in my muscles, and the fatigue was enervating. After two months, I made the decision to get second opinion (or was it the 8th opinion – I lost count).

After some searching, I found an Internal Medicine physician – best decision ever – he was an expert on the overall inner workings of the body – he was the driver of the bus and knew the intricate navigation needed to get me to where I wanted to go – back to a healthy life. I will call him Dr. Coach, head coach of my overall health.

Dr. Coach said, after he heard my history, “I know you have been through a lot, but I want to do my own tests and see where we are, then I can give you a better idea of what we are going to do going forward with your health.”

More bloodwork – new bloodwork (did I mention the dermatologist only saw me every two years to renew my prescription with no bloodwork?). The new labs showed I had the beginning stages of Rheumatoid Arthritis. Dr. Coach would not rule out my previous diagnosis of Erythromelalgia without additional testing – specifically genetic testing. I scheduled an appointment to have the genetic testing done.

The medicine the dermatologist prescribed five years prior was called Mexiletine, an anti-arrhythmia drug normally used for heart patients. Dr. Coach was not pleased I was taking this medication and advised me to go see a Cardiologist in his network. So I did.

I had one visit with Dr. Cardio, who immediately took me off the medication and hooked me up to an EEG machine. He said, “This medication you’ve been taking – well, we only prescribe that to cardiac patients who have not responded to any other treatment and will die without it. That’s how strong it is – and you don’t have any heart issues but keep taking it and you could.” The EEG showed my heart was fine and I threw the medicine out.


Back to Dr. Coach – the genetic testing results showed I did NOT have Erythromelalgia. He made notes in my chart and advised me to make an appointment with a Rheumatologist in his network. I did that too. Dr. Rheuma put me on Plaquenil, the very beginning treatment for RA.

These doctors were all on the same team – same healthcare system, same electronic health record, and could see what the other physicians were inputting into my chart. Just like the tour guide and the bus driver on St. Lucia, they worked in tandem – each having a specialty yet working together to provide the best care.

A year and a half later, I moved from my team of doctors in Virginia to Pennsylvania and had to start all over again. I didn’t know where to begin so I looked up a Rheumatologist – with one healthcare system – and a local family physician – another healthcare system and set up appointments. This time, though, I had discernment. I knew what an expert advocate team looked like and I wasn’t going to settle for less.

After several visits with each, I “fired” both. I found a great team of doctors at a teaching hospital in Hershey, PA. The drive is a little further, but their expertise, complementary efforts in my care, and holistic philosophy are worth the extra miles on the minivan. They are my expert advocate team – they help navigate this complicated twisted and winding road called Chronic Disease.

Resources: I just finished reading “Lies My Doctor Told Me” by Ken D. Berry, MD – well written and a great guideline for talking with your own doctor about your health.

Our spiritual expert advocate team? Well, easy – the Holy Trinity: God The Father, God The Son, & The Holy Spirit. Trust your Expert Advocate Team to guide and instruct you through the mountains and valleys of your spiritual life.