This should be the second book I write.
Well, prol’ly the first…seeing as how most of my extended circle of family & friends haven’t a clue about Lupus, much less that I actually have it.
The second book I hope to start penning next year will be entitled, “Even SuperHeroes Chug Mocha-Choco-Vodka-Valium-Lattes”…or, something to that effect.
My name is Pattie Brynn Hultquist.
I have an autoimmune disease called “Lupus.”
“Autoimmune disease: An illness that occurs when the body tissues are attacked by its own immune system. The immune system is a complex organization within the body that is designed normally to “seek and destroy” invaders of the body, including infectious agents. Patients with autoimmune diseases frequently have unusual antibodies circulating in their blood that target their own body tissues.” ~ MedicineNet.com
There are different kinds of Lupus:
Systemic Lupus Erythematosus: The most common form of Lupus, mild to severe, which can include damage to major internal organs such as the lungs, heart and kidneys.
Cutaneous Lupus Erythematosus: This kind of Lupus affects the skin. An individual may experience many different kinds of rashes, lesions or sores over areas such as the scalp, face, neck, nose and vagina. Many recognize the “butterfly” rash that occurs across the bridge of the nose and into the cheeks.
Drug-induced Lupus Erythematosus: A Lupus-like disease caused by the consumption of certain medications. Symptoms will usually tend to disappear within months after stopping the medication(s). Rarely will this kind of Lupus affect internal organs.
Neo-natal Lupus: Not an actual form of Lupus, but, rather, the effects upon a newborn born from a mother with Lupus whose antibodies act upon the gestating fetus. Symptoms/effects generally disappear within several months of birth.
P. Brynny has “SLE”, or, Systemic Lupus Erythematosus. She also has a butterfly rash upon her face, but…unlike those of nature…isn’t so pretty.
For P. Brynny, Lupus is affecting her heart and kidneys. She often has bouts of “pericarditis”, which is the swelling of the lining around the heart. It hurts. A lot.
Inflammation from Systemic Lupus Erythematosus is causing damage in her kidneys. This is called “Lupus Nephritis”. She must undergo regular kidney screening by urine and blood tests. It is annoying, a time restriction upon all things else she’d rather be doing.
P. Brynny has a lot of friends and a husband who are really, really supportive, but the depression creeps along beside her every day. This is because she used to do a whole bunch of things, all concurrently, and now is limited, on occasion, to how much and how often she can do the things she has to do, let alone can make time for herself to do. It’s frustrating.
P. Brynny is frustrated by the lack of awareness for a disease like Lupus, and by how long it often takes to get a diagnosis. This is because Lupus mimics a plethora of other syndromes, symptoms and disease. If P. Brynny had a dollar for every time she was excused by the reason of “Stress.”…P. Brynny would own her own island lair, complete with cabana boys and drinks with lil’ pink umbrellies in them.
P. Brynny keeps a lot of things to herself. While it looks like she’s as transparent in her journey as Windex, it really only resembles an iceberg. This is for two reasons:
1. P. Brynny hates to be considered “not normal”. Bat-shit crazy, yes. Not healthy, aka, normal? Nope.
2. P. Brynny doesn’t want people to pity tha’ fool. Seriously. If people helped or assisted because of her illness ONLY…that’s pity. And, it has no place in her life.
“At least it’s not cancer.”
Four years ago P. Brynny was handed a timeline like it was a prescription. A “get your shit in order” prescription.
P. Brynny most assuredly does not have cancer. P. Brynny has an autoimmune disease that, like cancer, can serve your ass to you on a silver plate dressing with a side of bitchslap.
I’ve had to write up funeral plans and bequests. I think of not being here for my children…my grandchildren. Maybe I will. Maybe I won’t.
Depression holds an umbrella over the ceiling of hope.
But, P. Brynny keeps on keepin’ on. She has lost friends to Lupus, just like you’ve lost loved ones to cancer.
Lupus is real.
Lupus is a beast.
Lupus drains the living essence from P. Brynny’s body on any given Sunday.
P. Brynny keeps on keepin’ on.
P. Brynny is a fighter…but P. Brynny needs a break from the Cosmos, the Asshat one.
P. Brynny has hope.
Because, without hope…there’s really no point at all…and that just doesn’t conform with the ideology of this Canadian Chronic Badass.