When I became pregnant with my youngest son in 2013, I noticed immediately that my pregnancy was drastically different than my first one 4 years prior. I had extreme joint pain in the right side of my pelvis and hands daily after I hit 16 weeks. I was extremely fatigued and could barely get out of bed. I had insane morning sickness that lasted until the day I gave birth. I knew that something was wrong, but my OB/GYN blamed it on the pregnancy itself and he did not listen to me at all or offer any solution or treatment.
At 30 weeks, I made the terrifying decision to switch to a different OB/GYN doctor that I hoped could figure out why I was suffering so much this time around. At my first appointment with her, she noticed my son was measuring almost 6 weeks ahead of schedule. After an ultrasound at 36 weeks, he was determined to be almost 10 lbs already. They believed a lot of my issues were stemming from undiagnosed gestational diabetes.
I was able to control my gestational diabetes for the last few weeks through diet alone. I gave birth to my son at 39 weeks via a scheduled c-section. He weighed over 11 lbs when he was born. I was happy to start the next chapter in my life and get to feeling well again.
Unfortunately, that day never came. I continued to be nauseated, fatigued, and in pain often. I had horrible abdominal pain that would flare up and then I would begin vomiting. After months of no relief, I got extremely sick and had lost weight.
I was admitted to the hospital and they began running tests to find out what was wrong with me. After many scans and tests, a HIDA scan revealed that my gallbladder was hardly functioning. I didn’t have any stones or infections, it simply had ‘quit working’ as the doctors explained it. It was only functioning around 10% of what it should have been. They also discovered I had stomach ulcers. I was scheduled for surgery and had my gallbladder removed in 2014.
Finally, I believed these health issues were behind me, that this had to be the end of the problems I had been experiencing for the last year. At 27 years old, I was ready to get back to the old me. Yet again, that day never came.
Over the course of the next two years, I would see many doctors on my quest to find out what was wrong with me. My joint pain had started happening more often and I began to experience debilitating muscle pain and nerve pain, especially in my face and head.
My PCP referred me to a rheumatologist after a positive ANA test. I hated still being in the ‘land of the unknown’ phase. During my first appointment they asked me a ton of questions and then ordered a whole lot of blood work. At that time, my trigeminal neuralgia was the most debilitating aspect of my life at that point and the rheumatologist referred me back to a neurologist.
After the neurologist could not come up with an explanation for my array of symptoms, I started to flare again. I called my rheumatologist and they were able to see me pretty quickly. They ran more tests and while my ANA was still positive, the other tests they ran were negative. They believed that I had Undifferentiated Connective Tissue Disorder. I was relieved to finally have a diagnosis and an explanation for what had been happening to my body. They started me on Plaquenil and said that it could help with my symptoms.
About a month later, my oldest son had a baseball tournament. It was a weekend long tournament and it was hot and sunny out. I spent all weekend in the sun cheering him and his team on. By Monday, I felt like I had been hit by a truck. I had red flushing on my face and chest and upper arms. I had a giant sore at the roof of my mouth. I took pictures of the rash and sores in my mouth. I called my rheumatologist and they saw me within a day or two.
After being seen by my rheumatologist that day, they were able to see the outward symptoms of my illness. They asked me if I had been out in the sun recently. I told them about the baseball game and did not really think much of it. After taking more labs, my anti-DSDNA came back positive that day. They called to tell me that I actually had lupus. I had heard of lupus in the past, but honestly had no idea what it really entailed.
I was stunned to receive such a scary diagnosis but was happy that my rheumatologist believed me and was willing to treat me. I am now on Plaquenil, Benlysta, and Methotrexate. I began to do a lot of research on lupus and was stunned at some of the things that I learned.
My health problems started early in life. I was always a sick child when I was younger. I had developed a bad sulfa allergy when I was 8 years old. I always gotten what I thought was sun poisoning. I would break out in rashes all over my body after being in the sun or using [eek] tanning beds in my teenage years. I had nasal sores for the last few years that I thought were due to severe allergies. So much of what I had gone through was actually happening to other lupus patients. I couldn’t believe it. How could I have missed this and how could so many doctors miss all the signs?
What was even more shocking was when I learned that it takes an average of 6 years for a person to be diagnosed with lupus. 6 years of uncertainty, 6 years of physical pain, 6 years of mental anguish, 6 years of traumatic experiences with some doctors who have no compassion, 6 years of being untreated for a disease that can cause death, 6 years of being treated like a pain medication seeker, 6 years of life that we can’t ever get back. Ever.
That’s when I decided that I wanted to advocate for lupus awareness. I wanted everyone I knew and didn’t know to understand what lupus was and to recognize the symptoms. I have served daily as an admin on one of the largest lupus groups on Facebook for the last year. I am currently a lupus blogger and started the blog Lupus Lyfe as an outlet for my personal lupus life experiences and as an inspirational space for other lupus warriors. I hope that my story can inspire those that may be undiagnosed or newly diagnosed to keep fighting for their own personal advocacy.
Take these pictures and entries to your doctor. Ask for a referral if you are not offered one. Join support groups, whether online or in your hometown. Having a support group is one of the things that has helped so much since my diagnosis. People that are going through what you are, they get it. They get it in a way that our friends and family members never will, no matter how hard they may try.
To all those that are fighting for a diagnosis or fighting to live their life with lupus, don’t ever give up hope. Within the last few years, dramatic progress has been made in the study of lupus and medications to treat lupus. This is due to an increased awareness and funding for lupus. I certainly believe that a cure will be found one day; but until then, I will advocate for lupus warriors across the globe until I take my last breath. Always remember, you are not alone in your lupus battle, we fight together.
LupusCorner appreciates Britt Clark and everyone who shares their experiences with lupus. Interested in sharing your story? Write to us at: firstname.lastname@example.org
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