Picture by Marc-Olivier Jodoin
Years ago I heard of the disease Lupus from a classmate. Of course I acknowledged her telling me about her situation, but I did not fathom the plight she was in nor did I ask questions of her. Given what I know now, If I could travel back in time and offer more concern and empathy to her, I certainly would.
I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
So What Exactly Is Lupus?
In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.
My SLE also features some collateral damage in the form of Anti-phospholipid antibody syndrome, Raynaud's Syndrome, Transient Ischemic Attacks (TIAs aka mini-strokes), seizures, heart inflammation, costochondritis, tachycardia, increased liver and kidney activity, Osteoarthritis, photo-sensitivity, muscle weakness, sporadic and severe nerve pain.
In an effort to ward of organ damage and manage pain, I take anywhere between 9 and 12 different prescription medications per day (3 of 12 being "take as needed"). Most are taken twice daily and include a maintenance chemotherapy drug, 2 nerve suppressant drugs, heart medication, an anti-malarial, corticosteroid, and of course pain killers.
The Wolf Within Me
Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans it seems.
A “Good Day” With The Wolf
Well I am a father, a husband, and provider for my family. At work I am a manager and I believe myself to be a productive member of a team. So from outside appearances “I don’t look sick” beyond hobbling around in pain at times. I push myself as best as I can to be a good provider, member of a family, and a decent coworker.
On the inside, the wolf and I have our disagreements. Even in remissions, which are evidenced by quarterly lab tests, I am in a constant state of discomfort and pain.
I have terrible pain in most joints. My knees, ankles, shoulders, fingers, and tailbone being the worst. An Orthopedist once conducted an MRI for each knee and told me that I have knees of someone 30-40 years older than me. On the average day I feel as though I was tackled and slammed down on a frozen football field just the day before. I cannot sit or stand for long periods of time without getting up or moving. The more sedentary I am, the more pain, stiffness, and muscle weakness occurs.
Now on the flip side, the more active I try to be, the more tired and fatigued I get. Lupus fatigue is sometimes called “profound fatigue”. I equate the fatigue to how you felt if you ever had pneumonia or a truly nasty battle with influenza. You are so tired that you struggle to walk from one room to another. Things like taking a shower exhaust you. Just like with Lupus, that fatigue is from your immune system at war.
I also have sporadic and severe nerve pain. My Neurologist said it is unexplained peripheral neuropathy that is common among most Lupus patients he sees. For me it’s like being stung by a bee out of nowhere in your hand, back, head, or feet. You even get startled and look or feel quickly as though there was a true venomous bite. And as quickly as it happens, its gone within seconds to minutes. I also experience strange sensations as though someone is pouring a cup of water over your head, arm, or leg. Once again nothing there, no logical reason for the feeling.
What I describe above is when my lab results are good or decent, so remission and good days. My next "Life With Lupus" article will be about what a day is like during a Lupus flare.
Please follow me on News Break if you relate or would like learn more about Lupus.
I plan my next Lupus articles to be…
· Life With Lupus: When The Wolf Escapes
· Life With Lupus: Medications
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