Lupus: The wolf within me
This article is not intended to be medical advice or pharmaceutical advice.
The article is simply my own story and experiences as someone with SLE.
As always, you should consult medical professionals with regard to your own health and decisions.
Years ago at college I first heard about the disease "Lupus" from a classmate. 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. I honestly did not know what to say.
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") and equating to 18 to 22 different pills, a patch, and pain cream daily.
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.
If someone told me years ago I would be taking a minimum of 18 pills a day, I would've thought he or she was trying to kill me with an overdose.
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.
Good Days With The Wolf
Well I am a father, a husband, and provider for my family. I work as a Product Manager and I believe myself to be a productive and contributing 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, adecent teammate, and reliable 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. Recently I received treatment with a new pain patch that I apply each week that has helped more than anything thus far.
Now on the flip side, the more active I try to be, the more tired and fatigued I get.
I also have sporadic and severe nerve pain. My Neurologist said it is small fiber neuropathy which is common among many 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.
Flares or Bad Days With The Wolf
A flare is where Lupus is active and no longer suppressed or caged.
At the time of this article, I've been in flare and out of remission 8 of the last 9 quarters (or 24 of 27 months).
How do I know this?
- #1 unmistakable symptoms
- #2 confirmed via my quarterly blood tests
Blood tests usually reveal my Lupus activity in my Complement C levels. The Complement System serves as an indicator of how my immune system is functioning. Paired with symptoms it can indicate whether my immune system is fighting infection or waging war with me.
What's A Flare Like?
Please note that with Lupus, the experience is different for each person.
For me it is one, more, or all of the following...
- Profound fatigue
- Severe and excruciating pain in multiple joints
- Severe and unexplained nerve pain and peripheral neuropathy
- Unexplained fever
- Digestive system inflammation in the form of colitis and gastroenteritis
- Skin rash
- Sores form on scalp
- Increased Raynaud's sensitivity
- Dizzy and lightheaded
- Blood pressure spikes
- Unexplained syncope events
- Unexpained vision issues
- Unexplained hearing issues
- Transient Ischemic Attacks (TIAs)
...and many times it changes day to day.
What Does Profound Fatigue Mean?
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.
Profound fatigue for me is tiredness to the point of collapse. And no amount of sleep resolves it.
Something as simple as taking a shower, preparing breakfast, or getting ready for work can send you headed back to bed or a chair to take a break. And occassionally its caused me to lay down on the floor wherever I was to prevent collapse and injury.
What if you can't get the wolf back in it's cage?
Prolonged disease activity can lead to organ damage from inflammation and the immune system targeting healthy cells and tissues in error.
My Lupus also causes problems with my blood in the form of Anti-Phospholipid Antibody Syndrome (APS). APS or "sticky blood" can cause my blood to clot faster than other people resulting in deep vein thrombosis (DVT), stroke, heart attack, and of course clots.
I've been extremely fortunate to only experience Transient Ischemic Attacks (TIAs) that left no permanent damage.
In addition I've been extremely fortunate that corticosteroids prove effective in putting the wolf back in its cage to trigger "remission". So although my wolf keeps escaping over the past 2 years, treatment with Prednisone pills or Decradron injections has granted me small periods of relief.
Problem is taking corticosteroids long term is not feasible due to the serious side effects they can cause. As of the time of this article, I am close to one year straight on Prednisone maintenance. And I have quite the weight gain and not so chipper moon face to show for it!
Now if I could just lock my wolf pal up for good and throw away the key.
Hopefully that day will come in the future. And if not for me, then for future generations.
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