Urban Tymes Media

"Got Tymes?"

My Life With Lupus… by Tawanda Blake


There is nothing more startling than for your body to malfunction with a complete disengage to your immune system, and you don’t know where that switch is to turn everything back on so that you can become yourself again. More importantly, you don’t understand or know the reason that it had a glitch to begin with. Here is a classic example: pulling out of a dealership with a brand new car and the car stalls. Yet, there is no logical explanation to why that happened. I mean this car doesn’t have any miles on it because it is a new vehicle (Your Body). You take it to a mechanic (a physician) that tells you, there is nothing wrong. The problem persists, you have the motor checked manually, and can’t find a resolve. The issue continues. The “Ah Ha!” light goes off, and your mechanic (Physician) finally puts your vehicle on a diagnostics machine (Specialist) only to find out that it’s  a troublesome fuse that’s making the whole car blip. This is the same thing with Lupus, it doesn’t matter what your age is, and it is not a disorder that you are born with. Onset can happen at any time. Unfortunately, there is a wide range of symptoms that affects you, but rarely a definitive solution or answer to your problem until a subspecialty professional performs a full work-up to see what is causing the disruption to your immune system.

Characterization: Lupus is a chronic inflammatory disease that occurs when your body’s  immune system attacks its own tissues and organs. Inflammation caused by lupus can affect many different parts of your body such as joints, skin, kidneys, blood cells, brain, heart and lungs. Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other illnesses. The most distinctive sign of lupus is a facial rash that resembles the wings of a butterfly unfolding across both cheeks. This does occur in many but not all cases. It’s been stated that “some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight.” There is no cure for lupus, but treatments can help control the symptoms.

Lisa Face ShotLisa Hollis: It was 2004, and I was 24-years-old at the time of my diagnosis. I kept getting sun burned really badly and my skin would peel all the way off. The physicians thought it was sun poisoning at first because I would walk from my house to my car or from the parking lot to the store and my skin would just peel away to the white meat. I missed many days of work because I couldn’t go outside. I kept going back and forth to the doctor. My physician inquired if I had been on vacation because I was sunburned so badly. It scared me so I went to the ER, the dermatologist, and then finally to a Rheumatologist that diagnosed me with Lupus. It took them 6 months to diagnose me. I never had any symptoms. It is just one of those things that you have to watch out for. I was scared because as I researched Lupus, and as you know, it affects your whole body, and I was worried about not being able to have kids, or if my hair would fall out. Will I need to quit working and live on disability, or would I die an early death? It seemed that as I talked to people about Lupus, most of the people would say my (Insert name) had Lupus, and they died or was on disability. That was not what I wanted to hear at 24-years old. As time had gone by, I met people every day who were living a full life with Lupus. They are living a full life, and so am I. I love going to the Lupus walk as well as events to be around other people who share the same diagnosis. I am thrilled that a large number of African Americans are present and represented since it is prevalent in our community. This year it poured down during the walk, but it was still a lot of people present, walking and cheering with umbrellas and ponchos. The walk is rain or shine, “Lupus doesn’t take a day off because of the rain, and neither did we”.

My diagnosis brought a different aspect to illnesses and pains; I often have to wonder is this something new with my Lupus or something else. In addition to periodic fatigue, I have moments where my joints ache really bad, and it’s difficult to do day to day tasks such as lifting my two year old son up, or even writing because of the hand and finger cramps. Overall, I live a full life where I work as an early intervention coordinator and part time hair stylist. I volunteer in the community and participate on my church’s mission team doing local and internal mission trips.

My friends and family have been a great support system. They are always there to fill in the gap on days I am not at 100%, or just for encouragement to let me know that everything would be ok.

With my diagnosis, it included lots of blood work, and different tests including a biopsy on my face. To have a definite diagnosis of Lupus, you have to have so many symptoms present that mimic other illnesses. The doctors need to rule them out. This is the reason it took so long to find a diagnosis and the reason that I had to see my primary doctor, dermatologist, and rheumatologist. You may even need to see a neurologist depending on the affected body part. A person with lupus usually sees these specialists on a regular basis and may have to see more including an ophthalmologist. I currently see an ophthalmologist because one of my prescriptions can cause a build on as well as blindness. My Lupus is managed now, although I have days that I am extremely fatigued, but nothing compared to what was going on before. I have several friends that have it as well as their parents. I don’t have any diagnosis in my family. I’m the only case. I have a son now, and when I was pregnant with him, they monitored me to see if he had flairs. However, my son is fine. I’m just happy that I know now, and I am able to share my story with other people so that we can talk about it. My friends and I participate in the “Walk To End Lupus”. I’m not the only one who is going through it.

My only words to share are, “Don’t give up. Find a support system because it’s not a death sentence. You can still have a very fulfilling life with lupus.”

For more information, you can visit the Lupus     Foundation of America at: http://www.lupus.org/newsite/index.html


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This entry was posted on July 7, 2013 by in Urban Health and tagged , , , .

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