Life With Lupus: When the wolf escapes

TJ Wolf

Life With Lupus: When the wolf escapes

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So What Exactly Is Lupus?

For information about my Lupus, please see my previous article.

For additional Lupus information, the Lupus Foundation is an excellent source.

What Does "When The Wolf Escapes Mean"?

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.

When the wolf breaks free of the cage, it wreaks havoc on me and various systems in my body. This havoc continues until medications are increased or added to suppress it once again.

This havoc can occur despite me taking all my medications daily as instructed.

My wolf has its own plans it seems at times. This escape from the cage is referred to as a "Flare".

Flare

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 for 5 of the last 6 quarters (or 15 of 18 months).

How do I know this?

  • #1 unmistakeable symptoms
  • #2 confirmed by 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 distress
  • Skin rash
  • Sores form on the scalp
  • Increased Raynaud's sensitivity
  • Nausea
  • Dizzy and lightheaded
  • Blood pressure spikes
  • Tachycardia
  • Costochondritis
  • Unexplained syncope events
  • Unexplained vision issues
  • Unexplained hearing issues
  • Transient Ischemic Attacks (TIAs)

...and many times it changes daily.

What Does Profound Fatigue Mean?

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 occasionally it's caused me to lay down on the floor wherever I was to prevent collapse and injury.

A comparable feeling is when I had pneumonia many years ago and I would get tired from trying to walk from one room to another.

Untreated

What if you can't get the wolf back in its 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.

Remission

In addition, I've been extremely fortunate that corticosteroids prove effective in putting the wolf back in its cage to trigger "remission". The problem is taking corticosteroids long-term is not feasible due to the serious side effects they cause. So although my wolf keeps escaping over the past year and a half, treatment with Prednisone pills or Decradron injections has granted me small periods of relief.

Now if I could just lock my wolf pal up for good and throw away the key! Well, hopefully that day will come in the future.

Thanks for reading my article about Lupus and hearing my story.

I plan my next Lupus articles to be…

  • Life With Lupus: Medications
  • Life With Lupus: Mortality
  • Life With Lupus: Perhaps I'm A Better Man...Make That WolfMan?

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My primary mission is to spread awareness about the disease Systemic Lupus Erythematosus (SLE) and many of its comorbidities. Given most physical activities cause me pain nowadays, I've taken on writing as a new hobby, form of therapy, and method to interact with others. You will find I also experiment with articles related to business and careers.

Atlanta, GA
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