You Have Lupus. Now What?

I did feel strange the day I went for Jury Duty. In fact, after arriving at the courthouse, I was so tempted to let the officer know that I was unwell and asked to be rescheduled if that was at all possible. I was not sure how these things worked. However, I was almost certain that I would be dismissed as a juror so I went through the whole process of being interviewed by Judge. As I had thought, I was dismissed.

The first signs

My husband picked me up, and I thought I was having an intelligent conversation with him until he turned to me and asked, “what are you saying? Why is your mouth dropping? Are you having a stroke?"

I had no idea what he was talking about. He got onto the freeway and drove the 20 minutes to the nearest hospital.

“I believe you had what is called a TIA, a mini-stroke,” announced the ER Doctor, “you seem fine now, if you promise to see a neurologist within the next couple of weeks, I will let you go home.” Of course, I opted to go home, confused but satisfied that if it were serious he would have kept me there.

Ongoing symptoms

The following week while sitting at my place of worship, the whole room took on a yellow-tinged color. I felt unreal, sweaty, and shaky. “We need to go,” I whispered to my husband. I got up from my seat before he even had time to respond, for fear that I would pass out. When we got in the car, he asked what was going on and I told him how I was feeling. We were about five minutes from our house, so we drove home. I was still feeling unwell, so he called 911.

This time, the doctor admitted me to the hospital. I had difficulty walking and bathing myself for a couple of days but felt fine. Another TIA was the diagnosis. After three days of testing, I was sent home with a prescription of aspirin, statins, and high blood pressure medication, and a follow-up referral to the neurologist that I saw at the hospital.

Finding the right help

I was not too happy with the neurologist that I saw at the hospital. So I asked my sister the name of the Neurologist that correctly diagnosis her husband’s illness when no other doctor could, Dr. H.

Doctor H. looked over my hospital report from the hospital and asked a few questions. Then he said, “I would like to run some more blood work, just to check one more thing.” I do not know why I did not ask the one more thing he was looking for.

His assistant called days later and told me that my B-12 levels were dangerously low and that I would need B-12 injections. Then she asked the strangest question. “Which rheumatologist do you see?”

“Rheumatologist?” I asked, "what is a Rheumatologist, and why do I need to see one?"

The nurse said, “well, he did not tell me that”

I asked, “can you have him call me?”

Dr. H. called me within a few minutes. He talked about the B-12 levels and the problems that low levels caused. Then he carefully and delicately explained why I needed to see a Rheumatologist. Finally, ever so gently, he said my blood test indicates that I have SLE Lupus. Well, I thought, at least it is not cancer.

What I knew about lupus

Lupus? I had heard of only two people in my life that had this disease. They are both dead. The seriousness of the disease hit me in the head like a baseball bat. No, there must be a mistake. I knew little about lupus, except what I saw in the friends that I lost to the disease. Hair loss, fatigue, and avoiding the sun, that was it, and then there was the steady downhill climb to death. That was all I knew, because that was all I saw.

I went to see my PCP to get a referral to a Rheumatologist. She looked at Dr. H.’s notes. "Dr. H. states that you have Lupus.” It was in such a tone as “Dr. H. states that you have a cold.” NO, I have the disease that killed two of my friends! I wanted to scream.

My first rheumatology appointment

I was going to be so prepared when I walked into the Rheumatologist's office. I researched the living daylights out of LUPUS. I read blogs, visited the websites of WebMD, Mayo Clinic, John Hopkins, The Lupus Foundation, and others. I read personal accounts of individuals that had the disease. I went to the library and got every book that was there written by anyone with an MD or Ph.D. after their name.

I went into the Rheumatologist's office, except I was meet by the PA instead who looked down at my lab reports and said, “you have lupus,” then handed me a pamphlet and walked out the door. Now what?

“You have lupus,” handed me a pamphlet, and walked out the door.

Needless to say, I found another Rheumatologist and I am completely satisfied with my care. I know this journey will not be easy. However, I have what I need to endure.

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?