The Single Perspective Single Thoughts for the Single Community By Kanefus R. Walker

 In Links to Lupus News, Story Sharing Project

Lupus…My Story – May 2022

It was in the latter part of 2008 going into 2009 that I found my body was going through a thing. Nothing I had ever remember experiencing. Joints swollen, body hurting and stiff daily. These symptoms seemed to last so long, that at one point, feeling this way had become a part of my daily life. I didn’t know what it was to feel “normal.”

My youngest brother was getting married in June and I had been asked to be a bridesmaid, so I had to look the part. Losing weight was a must and so began a regular workout routine along with a change in my eating habits. I had to look fabulous in my dress. The stiffness and hurt that my body was feeling had to be from my workout…or so I thought.

Because of my diligence to my workout and eating plan, some of the weight had come off and I was pleased with the outcome. However, the wedding had come and gone but my struggles continued to persist. At one point, walking had become more and more difficult. My knuckles were so swollen they looked black. Using my hands was a true challenge. Getting in the tub was easy but getting out was another story. Opening a bottle of water was impossible.

I resided on the 2nd floor in my parents’ home. In the mornings I would gather all of the items I needed for the day, so that when I came downstairs, I would not have to go back up until bedtime. I needed assistance and I knew a visit to the doctor would probably be the next step. Before making any appointments, my real “doctor”, my mom, said to me, “I believe you have Lupus.” You see she had had experience with it because each of my four siblings (I’m the youngest) had all received that diagnosis.

As my symptoms continue to worsen, I decided to take myself to the ER. Not a good idea. It was difficult to turn my head side to side, especially when the car had to be put in reverse. With God’s mercy and grace, I made it to the ER, moving extremely slow. I finally see a doctor, only to be told to go home and take some Tylenol and “it” would go away. He could not tell me what “it” was. No tests, no prescriptions. I think he thought I was making this up…especially since I didn’t look sick.

I went home only having to return. The second visit proved helpful. I finally saw someone who could really see me and what I was going through. This doctor ran tests, blood work, urine samples, a battery. While he couldn’t diagnose it for sure, all of my results pointed in one direction…Lupus. My mom, the real doctor, was right the whole time.

I was paired with a Rheumatologist down at John H. Stroger hospital for my follow-up and next steps. That was almost thirteen years ago. Today, Lupus, for me, is in remission, however my challenge is Rheumatoid Arthritis, another member of the autoimmune family. My joints are not swollen, but pain can be a constant reminder especially when the weather changes.

After my diagnosis, I became more involved with learning about Lupus. I joined a local support group and today I am the leader of that group. There is still so much to learn about this disease. People are diagnosed daily and it still remains to be something that many do not know or hear about and for those of us that live with it, there is no cure. So the fight continues.

My prayer is that one day Lupus becomes worthy of the attention that some of the more prominent health challenges receive. It may not be in my lifetime, but as long as it happens at least I’ll know I had a hand in getting the word out. May is Lupus Awareness Month. I pen this in honor of myself, my family members and everyone out there that have been diagnosed, about to be diagnosed and especially those that have lost the battle. I salute you!!


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