The Circle Game


Good things never last forever.  And bad things come and go too.  I’ve had a steady uneventful four months of relatively good health in the lupus department.  So it shouldn’t come as a shock to me when I see the obvious signs of a lupus flare starting to circle back again.  First it was about the kidney problem.  The nephrologist said I had lost some kidney function, but for now we will simply monitor the situation.  That was good news.  Now, I’m accepting the fact that the vascular rash that is the primary nemesis of my particular brand of lupus has returned.  The familiar cycle of hives on my face is, well, back on my face.  The small vessel vasculitis on my legs is slowly reappearing.  My arms, torso, back and thighs are affected again.  The stinging feeling on my arms and back has returned.

I have no idea why.  It just is what it is.  And the circle game begins again.

I’m diligently taking all my medications.  I get infusions at the hospital every three weeks.  I have a very long and expensive trail of paperwork that my insurance carrier sorts through on a monthly basis.  I’m an insurance underwriter’s nightmare.

So this is when I start trying really, really hard to be Little Miss Pragmatic.  This disease comes and goes in cycles.  It will probably get worse before it gets better.  And I have faith that the vasculitis WILL improve.

One of the most frustrating things about having lupus is accepting the cycles of feeling well and feeling ill.  I’ve had this diagnosis since 1992 and I still manage to get all pissy when I develop flares.  I get all snug and cozy when I get lucky enough to enjoy a pain-free, rash-free stretch of time.  Heck, I even start to feel …. dare I say it …. relatively normal!  And then I get blindsided when my autoimmune system starts to go haywire.  Again.  And again.


For now, I will start back up chanting my “coping with lupus mantra” …..

I will stay out of the sun.

I will wear long sleeves.

I will not get overheated.

I will try to avoid stress.  (However, if anybody reading this knows a sure-fire way HOW to do this, please get in touch.)

I will tell myself that even though I may not look the way I want to, I’m still the same person on the inside.

I will rely on the strength of my faith, family and friends.

I will continue to pray for a cure.

I will tell myself that I am not my disease.

I will remember that living with lupus is a circle game.


7 responses »

  1. Holding stress at bay … good question

    Since my battle with adiction to alcohol ended 7 years ago, I have found that certain people are simply put, stress amplifiers. With the risk of sounding negative, I truly believe you need to avoid them, and find / embrace positive people. Easier said than done, but it has a major impact.
    I also am a list maker. Human nature seems to hold multiple tasks and worries at the fore-front of everyday thoughts. I make plans to accomplish what I CAN. Some things are simply beyond our control, and accepting this is liberating … at least for me. I devote small periods of time for serious thoughts and goal making, and then try to take the world with a humorous approach.

    Best wishes and God bless,

    Eric your kind words are much appreciated. And you are spot on about being around positive people. Like you, I try to give some time to dealing with the serious stuff, but then move on. Living in the moment is another thing that helps me get through the tough times. Thank you so much for being supportive!

  2. man, the line about getting pissy when you develop flares sounds soooo much like me.

    I hope that you know you are not alone and that things do get better, it’s just a small bump in the road and remember to take things minute by minute. you have a beautiful outlook and should know I read your blog for inspiration. thanks for everything you do — and you are not your disease!

    take good care of yourself ~

  3. I just wanted to wish you well! Your blogs fantastic. Your blog reminds me how to get strength from within.
    People say I am too happy to be sick, but its all on how you look at your life.

    Of course we all have our moments (hence why I am here). We all want that 10 year stretch of good health -_-. Hah but we know how it usually goes 😀

    I hope your bad spell gets over itself as painlessly as possible.

    As for the disease thing? Immune system, not you. We have no idea what small trigger is different with us. It could be a chemical for all we know.

    🙂 Maybe we are going to be zombies! Woo, could you imagine!

    Im sure people bug you about the sun sensitivity too XD.
    It doesn’t help being so pale either.

  4. I bought a book called “The Lupus Recovery Diet”. Have you checked it out? It’s worth the effort! Wishing you well.

    I have the Lupus Recovery Diet book you mentioned. It has a lot of really great information. I don’t know if I’m ready for some of the extreme measures it calls for, but at some point it might be worth a try!

  5. I am so sorry to hear about your kidneys and I am keeping you in my thoughts and prayers. What you said about not looking the way you want to but still looking the way you want on the inside, really resonated with me. I’ve had lots of (admittedly vain) issues with my looks after going through chemo, radiation, and a mastectomy, not to mention steroids and forced menopause. I really do NOT love that you have to deal with this vicious Lupus circle, but I really am very inspired by your attitude and how you deal with it every day. And I’m glad to know you weren’t posted on the side of a milk carton! 🙂

    Wow! Thanks for feeling inspired. That makes my day!

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