My name is Jewel McDaniels, and I am the Face of Lupus
During the fall of 2012, I started noticing several changes with my body. One distinct change I noticed was the significant decrease in my energy. Most days, I just wanted to sleep but I continued to push through for my son who needed me. Then later in the fall, I noticed what I thought was a “stiff” neck but for two weeks I couldn’t sleep, walk, or even move my body in a normal manner where looking over my shoulder required me to move my entire body.
During December of 2012, on Christmas Day I started having what appeared to be stroke like symptoms coupled with a rash that was in the center of my back. During the next several days, I did nothing but sleep…but I was really nervous and thinking could I actually be having a stroke at 35 years old??? The struggle became so apparent to my mother that on 12/30 she took me to the ER and guess what they told me…I had a bad case of arthritis and released me to go home and rest. During my follow up visit with PCP, she remained puzzled with my symptoms and my test results. In addition, my hands started to claw up for days at time making it hard to use the computer at work. By now it is the end of February 2013, still no diagnosis and new symptoms happening often. In March 2013, I went to my PCP again and I told her full of emotion, something is wrong with me! Can you please get to the bottom of it??? She then referred me to an orthopedic doctor who specialized in hands; because still after two months they were clawing up. The orthopedic doctor also remained puzzled with my hands but immediately sent me to the hospital to have additional test where they checked my blood again...
On April 16, 2013, my life was changed forever. On this day, I sat worried about why my test results required me to meet with a new doctor, a rheumatologist to be exact, who specialized in infusion treatment. I sat in the patient room nervously waiting for him to enter the room. I then started praying because still I just simply didn't know why I was there and what he was going to say to me. He entered the room with another physician and his assistant. He introduced himself and his staff...then uttered the words ma'am I am sorry but you have Lupus. My face dropped and tears began to flow. His assistant explained my test results were still unclear of the severity but they were sure not only was it affecting my skin a very obvious rash was evident on my back but my joints had been severely swollen for months. He continued to state the autoimmune disease has No cure and you could die from complications. As any normal person would ... All I heard was "die from complications." I was shocked, numb, and alone. He started me on PURE steroids, plaquenel, and scheduled me for infusions at my next visit.
I left the office thinking why me...
I got in my car and I prayed.... I said LORD, I want to give you glory but with this one I don't know how I will...WHY ME???
LIVING WITH LUPUS
My first chapter was a bit of a trial and error, going to the doctor rheumatologist every other week trying several different types of treatment including a trial of infusion therapy. Even after all the meds, I really was struggling with how my body was showing little to no improvement. I was still really achy, swollen and my energy level was always in question. I began a rapid downward spiral to depression. At this point, I claimed the disease and had no fight in me to overpower it. While traveling for work later that year, I became very ill. I was in a place where I really didn’t know anyone but those I worked with. I was very swollen as my feet were beyond recognition and I was unable to wear anything but my CROC flip flop and it hurt really bad to walk normally. I called back home and expressed to my mom how sick I felt and I was going to see if I could come home earlier…I was REALLY SICK IN FULL FLARE UP!
My dear friend and mom encouraged me to get a new doctor; particularly my mom wanted me to go to her PCP. He referred me to a rheumatologist that worked on his team. I started a number of different medications including blood pressure, steroids, plaquenel, and prescription form of IBprophen for about a year. I made a commitment to change my diet, eliminating foods that increase inflammation, for example fried, greasy food. Increasing foods such as broccoli and strawberries that decrease inflammation. In addition, I expressed to both doctors that I would like to work to be medication free in the future…They agreed to work with me to reach that goal but I must be fully committed.
The testimony/how I live today…
Today, I wake up and say to myself Why not me? God is using me to SHARE a testimony…
Through one of the most difficult times in my life God continues to provide:
• New Job…reduced stress
• Diet/Healthy eating…healthier than I was a year ago
• Team of medical professionals..No meds for the last 8 months
• INNER CIRCLE CHANGES
• Psychotherapy…D. Harris has been a blessing to filling my CUP
• Valuing the life I have focusing on TOTAL HEALTH: MIND, BODY AND SPIRIT
I have lupus, BUT it doesn't have me!