When Lupus Throws You for a Loop


What’s a lupus loop?  During one of my countless online research quests, searching for the elusive treasure chest that holds the answers to the lupus mysteries of my rebellious body, I stumbled upon this:  Lupus (say: loop-us)

Reading it tickled me and I couldn’t help but smile.  “Loop-us” made me envision a giant animated purple butterfly donning a cowboy hat (purple colored, of course) chasing a bunch of us who have lupus, while trying to rope us with a lasso.

Back from the land of unicorns and treasure chests, I found myself contemplating more profound and sentient possibilities.  Seeing “loop-us” phonetically, prompted me to think how lupus literally “loops us” together via connections.  Lupus has been the vehicle that forged some of my most treasured personal relationships that might not have come to fruition otherwise.lupus relationship

Who are the “us” in loop-us? 

For starters, we are us – you and me. 

 

Other bonds that personify the “us” in loop-us, are people who have lupus with their family and friends, colleagues, medical community, and their higher power.

Here is a quick list of my lupus loops:

  1. God
  2. Family
  3. Friends, which includes my fellow lupies (folks with lupus)
  4. Employment
  5. Medical community (doctors, nurses, therapists, etc.), including alternative health practitioners (Reiki practitioners, acupuncturists, massage therapists, etc.)
  6. Enlightenment through perspective and experiences (Ok, so it’s not a “people” loop, but this is a prolific loop for me.)
  7. Humility (Refer to #6’s justification)

Do you have other loops of relationships and associations that I haven’t mentioned here?  If so, please share them with us in the comment section.

Lupus Loop

My God Loop
There is a high probability that the loop between my higher power and me might not have transpired if I was never subjected to the hardships of lupus.  It was not until I was diagnosed with and suffering from severe lupus symptoms that I finally opened my heart to my higher power, God.  (Spiritual Loop)

 

I distinctly remembering feeling lost and defeated in strength, spirit, will, and hope.  My physical health was a mess and deteriorating.  My personal life was a drama worthy of a Lifetime movie.  I suffered from Reynaud’s phenomenon, achy joints, migraines, malaise, and extreme fatigue to the point of constant exhaustion, regardless of how much sleep I got.  I was in constant pain, fear and anxiety, shadowed by hopelessness.  Living through crushing physical and emotional challenges and hardships, compelled me to realize that hope is one of the most powerful and vital elements in life.  Hope gives you something to hold onto.  Hope breathes for you and has the power to resuscitate you.

Romans 5:2-4

“…And we rejoice in the hope of the glory of God.  Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”

No matter what a person’s circumstance or situation, if they have hope, then he/she can survive and possibly thrive.  Hopeful possibilities keep me alive.  Opening my heart to God brought me back to life. (God and Enlightenment Loops)

Fellow Lupies Loop
The “us” part of “loop-us” includes everyone living with lupus.  Attending lupus giftmy monthly lupus support group is immeasurably uplifting and rewarding because everyone there understands 100% what I go through.  We are able to relate to one another, free from communicating in exhaustive detail how it feels, and what we endure and occasionally suffer through because of lupus.  Fellow lupies simply just get it, and that is so refreshing and comforting. (#LupiesLoop)  This loop is not limited to only folks with lupus.  Having a chronic illness inherently generates empathy among people who have other incurable diseases, such as multiple sclerosis, fibromyalgia, diabetes, etc.

Friends, Family, and Humility loop
Lupus made me reach out to people for help.  (Lupus can be such a bully.)  This disease dictates that I cannot possibly be as autonomous as I once valued.  I used to be far too independent, to the point of being recalcitrant.  Confiding in other people about your lupus is an opportunity to connect (loop) with them in an earnest, sincere way.  While daring to move beyond the boundaries of a superficial relationship with someone may create vulnerability, it allows the possibility of creating a stronger loop.  Lupus has humbled me in countless positive ways, where I am not only gracious to accept help, I am also honored to give help. (Humility Loop)

More on Friends and Family Loops
The word lupus is from the Latin word for wolfWolves live in groups called packs.  “The pack, the basic unit of wolf social life, is usuallylupus wolf a family group. It is made up of animals related to each other by blood and family ties of affection and mutual aid.”  There is a smidgeon of irony in the coincidence that not only is it natural and essential for wolves to exist within their packs, the same proves true for humans.  We are social creatures who need each other.  Wolves are looped by their packs.  This is evermore significant for those of us with lupus who are looped with our human “packs”.

Simply stated, we need each other.  Remember that lupus is neither you nor me alone, lupus is we.  Relationships are the recipes of how happy, fulfilling, and rewarding life can be, despite lupus.  With our family and friends, we create invaluable synergistic loops.

 

Employment Loop
In my career (when I was able to work) I disallowed an important loop.  At work, I felt alone because I hid my lupus from co-workers and supervisors for fear I would be subjected to mistreatment.  I learned the hard way that hiding my lupus only compounded the stress to my current fragile health.  Once I revealed it and shared what I was dealing with, I was able to collaborate with my supervisors and achieve a more conducive work/life balance.  As a result, my number of sick days reduced by about 75%.  When I saw the quantitative results, I was amazed and felt vindicated for asserting my needs because of my medical limitations.  I was also irritated at myself for waiting so long to confide in my co-workers and supervisors.  Consequently, I tried kicking myself in my keister, but (no pun intended) I’m not flexible enough.  If you are working right now, please, please, please prevent your career loop from making you sicker.  Stress and over exertion could lead to a lupus flare.

Medical Community
Self-explanatory. Basically, those of us with lupus are sick and we need medical help.

One Final Lupus Loop (not mentioned in my list above)
The sober lupus reality includes the hostile, everlasting hold that this disease has over our bodies.  There is no cure for lupus.  That factoid in itself clutches its victims with no foreseeable release.  The proverbial “rope” of lupus within and around me keeps me in place, stagnant at best.  Lupus makes me feel trapped.  I cannot step out of the lupus loop.  There is no escape right now.  This equates the need to adapt and live as best as possible within the confines of lupus.  It’s really tough.  I am physically, mentally, and emotionally lupus claustrophobic. 

Lupus Loop Hopefully, one day there will be a cure for lupus and the lupus loop will dissolve forever.  Until then, please hold onto hope with me and let lupus loop-us.

Enlightenment Loop
See everything above.

 

References:

Lupus

https://resources.lupus.org/entry/what-does-lupus-erythematosus-mean

http://www.wolfweb.com/facts-pack.html

Pictures courtesy of Pixabay

Lupus Awareness

May is lupus awareness month. Bringing publicity to lupus can make a difference in funding research and hopefully finding a cure. On a personal level, when is the right time to make others aware of your lupus?