Living with Lupus

Here’s the experience of one of our guest bloggers who is living with Lupus:

I can recall the details of that cold fateful morning in February 2005 so vividly; the day I was diagnosed with Systemic Lupus Erythematosus (SLE). There were several instances throughout the prior year where I was feeling increasingly uncomfortable and ill. I experienced joint pain in my knees and elbows, swelling in my hands that made it difficult to play the piano or even squeeze a stress ball, and hair falling out in patches. During that time I visited 2 Primary Care Physicians (PCPs), 1 Hematologist-Oncologist, 2 trips to the Emergency Room, and a Dermatologist who all ordered several blood tests, and concluded that they didn’t see anything abnormal in the results, or at least nothing that should cause how I was feeling.

As the months progressed, my brother began driving me to work as a favor because he noticed how difficult it was for me to navigate the stairs, crowds, and standing for long periods of time that taking the subway required. I was still going to work daily because although my body and ego were hurting, my pride kept me going. This particular morning, however, was different. By the time I got upstairs to my office, the swelling in my hands became so severe that I was unable to unzip my coat. I immediately called my mother (who worked across the street) to let her know that I have to go to the doctor and she immediately rushed over to accompany me. We decided to visit my previous PCP whose office was now in the area and described to him what I was experiencing. He decided that instead of ordering tests and waiting a couple days to receive results and perhaps repeating the process, the best option at the time was to simply admit me to the hospital so they can run several tests until they can determine what is causing these symptoms.

After 3 days of tests and visits from various specialists in the hospital, I was diagnosed with SLE. I had no idea what it really meant to have Lupus, and everyone that I  knew who had it previously passed away from complications related to it. I thought it was a death sentence. I had no idea that there are several people who are living with Lupus who lead long, happy and “normal” lives. My physician explained that there were likely two primary reasons why it may have been missed by the other physicians. The first reason was that in 2005 only 10% of people diagnosed with SLE were male and so that is not usually something they readily test for in men. The second reason was because the indicators on lab results that might reveal SLE are not on the basic panel, and it has to be specifically ordered. Once I was diagnosed, they immediately prescribed a dosage of prednisone for some immediate relief, referred a Rheumatologist for continued care, and recommended a much needed few weeks off from work.

Since my diagnosis in 2005, I have been meeting with my Rheumatologist with a regular cadence (we started monthly and now we meet semi-annually), and have been following her treatment plan; maintenance medication, regular exercise routine, and low stress life-style and I have experienced very few flares or complications over the last 14 years.

Throughout this experience I’ve learned two valuable lessons. The first is to listen to your body. Pain is not okay. If you are not satisfied with the diagnosis from one specialist, don’t be afraid to seek a second, third, or even a 10 th opinion. Nobody understands you more than yourself. The second lesson I learned is that partnering with your care provider to develop and stick to a treatment plan that works for you can lead to a full, healthy life without limitations.

If you or somebody you love has recently been diagnosed with Lupus, I just want to encourage you and let you know that better days are ahead. Actually, being diagnosed was actually the best day for me, because now that we identified a cause for all the symptoms we have been able to address it appropriately.

Help individuals like you learn about their condition and compare treatment options by taking the Lupus survey. By sharing your experiences and rating treatments, you are contributing to an expanding body of health knowledge, and helping other individuals make informed decisions about their health.

Human Health Project (HHP) Programs

HHP is a comprehensive holistic health literacy charity. Explore our Real World Data on health conditions like Migraine and Lupus, featuring Causes/Triggers, Treatments, outcomes, and side effects (more conditions being added). Dive into our Learning Academy’s short patient education video courses covering topics like Your Rights as a Patient, How to Research Online as an ePatient, and Peer-led Patient Advocacy Workshops. Don’t miss our upcoming and past Peer-to-Peer event videos.