Living with Lupus

I would like to share a secret about me and I don’t want you to be jealous, but I have super powers.

One of my powers is the ability to absorb the cold temperature of anything that I touch. Even on the most brutally hot Carolina day a touch from me can send a shiver down your spine. I don’t even always have to touch anything cold to conjure this chilling effect.

Another super power of mine is continuing to exist while my body conducts spontaneous assassination attempts against me.

You may ask, why do I have these super powers? If you have not guessed it by the headline, it is because I have lupus, a chronic autoimmune illness with no cure, that is commonly triggered by environmental factors and stress. Environmental triggers include increased heat, sunlight exposure, anything that triggers the immune system, and allergens such as those kicked off by the Carolina’s annual pollen apocalypse. May is Lupus Awareness Month and supporters wear purple during the month to bring awareness to the disease and in a show of solidarity with its sufferers.

Autoimmune diseases are a category of disease whose identifying feature is their inability to recognize ‘self’ cells within the body, instead seeing normal, healthy cells as ‘invaders.’ This mischaracterization of cells causes the body to launch an extensive attack against its own cells, resulting in the body’s immune system attacking and attempting to destroy itself from within.

My diagnosis came early for a lupus patient, in my twenties, but my symptoms truly began at birth.

In my teens my knees decided they no longer wanted to work properly, which at first was chalked up to growing pains. For a myriad of reasons this was how life continued, one part of my body after another acting up, until I was in my twenties and undeniably in a lupus flare. I learned real quick that you must be your own advocate because no one is going to fight for you. Commonly lupus patients are brushed off by the medical community because their symptoms are fleeting and the same set of symptoms may come and go or not reappear for years.

Following weeks of testing and having so much blood drawn I would have to be given orange juice and an enforced rest by women in lab coats before I could leave my doctor’s office, the day finally came.

I waited somewhat patiently for the Rheumatologist, a doctor specializing in autoimmune related conditions, to tell me the news. When he did, I was prepared and a little relieved to have it finally confirmed. I now had a name and an explanation for why I am always sick, a reason for my growing list of embarrassing symptoms, and hospital visits.

What I was not prepared for was the contempt I would face from my fellow man for an illness I don’t want, didn’t ask for, and can not afford. I was unprepared for a life of medication and testing to ensure the medication, or the disease itself, wasn’t causing permanent damage somewhere in my body. I was definitely unprepared for the hair loss and bald spots I would face in my twenties.

I absorb cold temperatures because like many with lupus, I also have vasculitis. A form of vasculitis is Raynaud’s Disease which can occur on its own, Primary Raynaud’s, or secondary to an existing condition, like lupus. The disease causes spasms in the blood vessels, often resulting in the extremities turning cold and changing in color from white, purple, red, or blue. In some cases the spasms can be severe enough to cause frostbite and gangrene.

Two forms of lupus are Systemic Lupus Erythematosus (SLE), which causes damage to every system of the body, and Cutaneous Lupus Erythematosus (Skin lupus), which damages the integumentary system.

SLE patients can still be affected by skin conditions such as photosensitivity, hives, and the malar rash. This brightly colored pink-to-red rash is characterized by its coverage over the cheekbones and bridge of the nose, reminiscent of a wolf’s bite or the shape of a butterfly on the face. It is this ‘mark of the wolf’ that gave genesis to the term lupus for the disease, as ‘lupus’ is Latin for ‘wolf,’ and dates back to a thirteenth century physician who is first credited with coining the term.

It is a disease that does not discriminate though it prefers the female gender by 80%, and African-Americans and Asians in higher numbers than their caucasian counterparts. Previously, a diagnosis was believed to be a death sentence. With new developments in medicine, 80% to 90% of lupus patients lead relatively normal lives, though some still succumb to the disease annually.

Lupus can be an isolating disease and it is often tempting for patients to feel alone, but there are actually an estimated 1.5 million Americans suffering from the disease, with an estimated 16,000 cases of new “lupies”, like me, a year. There are many celebrities with this disease, such as Selena Gomez, Seal, Paula Abdul, Nick Cannon, Lady Gaga, and Toni Braxton.

An SLE sufferer, Gomez shared a kidney transplant she underwent due to the effects of her lupus with the world in 2017, and has faced criticism ever since. Despite knowing that she has an incurable disease and is on serious medications, many have consistently mocked her weight and questioned her life choices.

Lupus is more insidious than just being a disease of vanity, hallmarks of the condition have been narrowed down to a specific list of criteria that rheumatologists go by when confirming a diagnosis; skin rashes, photosensitivity (allergy to sunlight or certain types of lighting, such as fluorescent), oral ulcers, non-erosive arthritis, inflammation of one or more serious membranes, renal disease or failure, cognitive impairment, blood disorders, and the presence of antinuclear antibodies and other immunologic disorders.

In a nutshell, a lupus flare, or active disease activity, makes you feel like you have been hit by a bus.

Lupus attacks almost every organ in the body. Common symptoms of a flare are extreme fatigue, joint pain and swelling, muscle inflammation and weakness, nausea and vomiting, headaches and migraines, nerve damage, cognitive impairment, thyroid issues, chest pain, seizures, poor kidney function, sepsis, hair loss, fever, swollen lymph nodes, cardiovascular complications, photosensitivity, and rashes.

Patients must undergo consistent lab testing to monitor disease activity, ensuring the disease is not silently active within the body. In addition to a lot of lab work, patients are periodically subjected to X-Rays, MRI’s, EKG’s, and tissue biopsies.

With skin lupus, the disease attacks the skin with various unsightly rashes, often resulting in permanent scarring and hair loss. It is even more imperative for patients with this form of lupus to stay out of the sun’s rays and other flare inducing lighting.

Frequently those wishing to become pregnant are anxious about their ability to carry a baby to term.

I managed to do so twice, so I assure you, it can be done.

A pregnant lupus patient is considered “high risk,” a fancy term for a lot of medical monitoring. Some pregnant lupus patients see a cessation of their symptoms, while others, like me, spend time in and out of the hospital on short-term disability.

Learning to live with lupus has been challenging and I often have been asked if I feel angry about it. The Lord and I have held many discussions on the topic leaving me with the confidence to say that I honestly am not.

In my nursing background, and in going through life in general, it has blessed me.

Having lupus allowed me to relate and empathize with the patients in my care in a way that a healthy person simply could not. Living with lupus is a constant reminder to be patient and kind, because at any time in life I could be interacting with someone who is too exhausted to be pleasant or who is choosing a bright, sunny smile as a shield for their struggle too.