I am the captain of my healthcare team

Contributed by: Becky
Reviewed by: Evelyn Corsini, MSW, December 2011

 

Becky has Sjogren’s Syndrome and osteoarthritis.  She has been retired for six years and enjoys vegetable and flower gardening, crafts and cooking.  Becky writes about managing several medical conditions and medical providers.

 

My pain journey began when I was 37, when I began to have pain in both my knees, the left worse than the right knee. The doctor took x-rays & said it was non-specific arthritis. He ran other tests that were non-conclusive for autoimmune diseases like lupus.

My doctor approved a handicapped parking space because of my pain with walking as otherwise I would have to walk at least a quarter of a mile from my parking spot to my work location.

I continued to be treated with prescription strength ibuprophen until I developed pneumonia in 1994 (at age 50). At that time, I saw a rheumatologist who ran multiple tests on me & I was diagnosed with an autoimmune condition called Sjogren’s Syndrome (a “cousin” of lupus). My form of Sjogren’s also attacked my lungs, which resulted in a diagnosis of asthma and Pulmonary Fibrosis.

So, not only was I now dealing with arthritis & Sjogren’s, but I had a life-threatening lung condition. Sometimes, the joint pain from Sjogren’s was worse than the breathing problems. A year later, I was diagnosed with Obstructive Sleep Apnea & started on a CPAP machine (continuous positive airway pressure) to prevent me from stopping my breathing while I slept.

I left my home in Seattle in 1996 to be near my son & baby daughter as I didn’t know what my life expectancy was & I wanted to spend time with my only granddaughter. 2 years later, I remarried and returned to my home in Seattle, where I went to see the new rheumatologist who diagnosed me with osteoarthritis at that time. One year later, I began experiencing a new kind of pain. At first, the doctors thought it might be my heart but after a battery of heart tests, it was determined that it was not my heart but I had fibromyalgia!

So, now I am dealing with 3 different kinds of pain and some days it hard to tell which one is rearing its head! My Pulmonary Fibrosis was declared “in remission” 3 years ago-but I still take medication & have tests every year as my pulmonologist says it can return as I get older. Now, at 67, I’m just grateful for all the years I’ve been given and I try to have a positive attitude regardless of what the day gives me. I will be seeing a cardiologist soon as the doctors are concerned about my low diastolic blood pressure? Just one more thing to add to my collection!!

As for coordinating my care, I consider my primary care doctor as the “gatekeeper” of my medical care team.  He receives copies of reports, tests, etc. from my various specialists (rheumatology, pulmonology, ophthalmology, and cardiology) so when I see him, he is up to date on my conditions.  He also coordinates blood draws with my rheumatologist so they are not duplicating requests.

However, I feel that I am the “captain” of my health care team as it is my responsibility to report changes in my condition to the various specialists since my health insurance does not require a referral to see them.  I’ve been dealing with a majority of my conditions for over 15 years, so I’m usually aware when something is “off” and I need to deal with it.

 

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