My lupus story

I was initially diagnosed with systemic lupus when I was about 6 months pregnant with my son. For those of you who have been pregnant, you know you have a ton of blood work done consistently during your pregnancy. Well, after one of my routine tests, I received a referral for a rheumatologist. I had never heard of this type of doctor so I looked it up. A rheumatologist specializes in disorders of the immune system, like rheumatoid arthritis and lupus.

When I saw the rheumatologist, she explained to me that I tested positive for lupus but since I didn’t have any symptoms, it could be from my pregnancy. She then said if I don’t develop symptoms within three years, then it was pregnancy induced.

Fast forward, three years. I noticed that my legs were swelling a lot. I saw my general doctor but he wanted to dismiss it as age and due to prolonged standing. Although I did stand a lot at my job, I would not accept that answer, and I told him that I was only 33 I should not have swelling in my legs! As a result, he did a bunch of blood work to figure out what was going on.

I will remember this day always…my family and I were on our way to our cruise vacation when my doctor called and asked me to come in that day. He told me I had blood and protein in my urine and didn’t think I should go on my vacation. WTH?? I was going on that vacation! He called a Nephrologist (kidney specialist) he knew and gave him a quick and dirty update of my situation. They prescribed me a few meds and told me to stay out of the sun and do not eat any raw fish or vegetables. I then promised to see the Nephrologist as soon as I returned from my trip.

So, once I got back from my cruise, I went to the Nephrologist and I was told that I have a low platelet count, which means I could bleed to death and that something is going on with my kidneys. Based upon my labs, they were concerned I may be headed toward kidney failure and I may have to start chemo…CHEMO!!! I just looked at the doctor like he was crazy. I didn’t feel that sick, I didn’t look that sick…but, I was really, really sick.

I have to be honest, there was a brief moment during this time when I wasn’t sure I would be around to see my children (6 and 3 at the time) grow up. Dealing with a lupus flare was the hardest thing I have ever had to deal with. I wouldn’t wish it on anyone.

I thank GOD that I never had to go through chemo, but I did have to take several medications every day three times a day. I had to see a rheumatologist, nephrologist and hematologist three to four times a month EACH!! I saw the hematologist every week and had blood work done every week. I had a bone marrow biopsy that was unbelievably painful! I also had a kidney biopsy that showed inflammation, but no damage. Hallelujah!!

I wanted to share with you how devastating a lupus flare can be for those experiencing them. They may look fine on the outside but they aren’t fine. So, if you know someone who has lupus and they tell you they are tired or they aren’t feeling well…believe them.


Erica Nicole Johnson
May 28, 2019 at 1:20 pm

Thank you for sharing. I too suffer with Lupus and sometimes draw to others who may be experiencing certain things through out there journey. Thank you again for being brave and having the courage to be transparent

    June 3, 2019 at 12:17 am

    Thank you for reading and sharing your comment, Erica. There really isn’t much information given to us about lupus. I never wanted to highlight the fact that I have it but felt it might help others to share, so they won’t feel like they are alone. Thanks again!

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