22/09/2023
**Long Post Alert**
Because we want this page to show our lives as we live with Lupus and Diabetes, we need to go way back and share how we got here! Here's my story! I have condensed it as much as possible. Please like and share so that we can reach more people and hopefully build a community where everyone can see that living a GREAT LIFE with chronic illness is absolutely possible!
Did you know that it takes 3 to 5 years for a person to be correctly diagnosed with an autoimmune disease? That was definitely the case for me. In 2015, after years of trying for a second baby, I went to the doctor to discuss family planning and to talk about symptoms I was experiencing to see if there were any underlying issues I was unaware of that was preventing us from expanding our family. My ObGyn immediately said I likely had thyroid issues and sent me on my way to the lab. I was soon diagnosed with Hashimoto’s Disease, but I also had unexplained protein in my urine and was categorized as Stage 2 kidney disease. At this time, nobody seemed concerned with my kidneys and kept telling me to just increase my protein intake. Also during this time, I developed a weird “rash” that would randomly flare up on my feet and legs (which turned out to be burst capillaries due to Schamberg’s Disease), and I began to experience severe dysphagia due to Eosinophilic Esophagitis (EoE). Still, there wasn’t much concern from any of my practitioners, and we rocked on with our lives and expanding our family.
Fast forward to September 2016, and we learned we were pregnant with TWINS! What a joyful time. Growing our family by two blessings was an incredible answer to our prayers. My pregnancy was great, and most of my disease symptoms either vanished or markedly improved.
Jump forward to September 2017. We have beautiful infant twins and a very happy 9-year-old daughter. Life is good, right? It was about this time that I noticed the joints in my hands were becoming stiff and painful. I talked to my ObGyn about this new symptom to which he suggested I let my primary know so we can rule out Rheumatoid Arthritis. I called my primary, but no appointments were available until late November. I felt that wasn’t too bad, but I was very wrong. Within a two-week period, I went from sore joints in my hands to full body joint issues. Taking care of my twins was difficult as well as completing any regular tasks around our home. We needed answers. In late October of 2017, my primary doctor agreed to work me in his schedule so that he could begin running blood work. These tests would all come back with abnormal values that pointed us in many different directions, including a potential cancer diagnosis. During the next several weeks, I was put through a battery of tests to begin ruling out diseases. This brings us to late December, just a few days before Christmas. I developed a cough and thought I was getting bronchitis. My symptoms rapidly worsened to the point that my chest hurt so badly I thought it would burst, and I could barely walk without becoming extremely short of breath. I also noticed during this time that I had swelling in my legs. I was told by an immediate care doctor on December 23 that I had pleurisy but would be fine. This was the worst Christmas ever. I was so incredibly sick that I could barely get out of bed to enjoy our twins’ first Christmas. On January 2, 2018, I went to my primary care doctor because I wasn’t getting any better; in fact, I was rapidly worsening. This visit revealed I had multiple pleural effusions, dangerously high blood pressure due to edema (caused by low kidney function), a pericardial effusion, and slightly enlarged heart. My doctor sent me home with medications and the instruction that if I didn’t start feeling relief or improvement within 24 hours, I had to let him know. A little over 24 hours later, Mark took me to the ER because I couldn’t breathe. I was admitted to what turned in to a 12-day hospital stay where I was placed on BiPap due to being in respiratory distress, had gone into acute kidney failure, needed two blood transfusions, had a kidney biopsy, and ultimately found out I had Lupus Nephritis Class III and Class V. We felt we had answers. Lupus also explained the other issues I was experiencing with EoE and Schamberg’s Disease. I went home with this new diagnosis and MANY medications. I should be in recovery now, right?
Let’s jump again! In May 2018 I thought I was significantly better; I had most of my strength back, but one day I developed a high fever and tachycardia. I went to the ER where I was then admitted to the hospital for 5 days on strong antibiotics and antivirals because they couldn’t figure out what was causing the fever. Two weeks later I was back in the hospital with the same symptoms, except this time they saw that I again had a pericardial effusion. I had a pericardial tap to be sure there was no infection around my heart. Thankfully there was no infection, but my doctor and cardiologist were concerned I wasn’t getting the proper care for my lupus in Hattiesburg. They felt I needed more specialized care because it was clear my lupus was attacking not only my kidneys but also my lungs and heart.
It was at this point that my lupus recovery and life turned around. I was referred to a Rheumatologist in Baton Rouge, Louisiana who turned out to be an answered prayer. He tweaked my medicines and added a monthly infusion called Benlysta. I can say without hesitation that Benlysta gave me my life back. Since July 2018 to current, I have been traveling to Baton Rouge to receive my infusions, and the monthly trip has been well worth it. I have more good days than bad, and I rarely flare. I am proof that with proper care, lupus can be treated and a normal life can be experienced. Yes, I have precautions I need to take to ensure I stay healthy and flare-free, but the point is I can LIVE.
