Paying the Piper

I'd say that the last few months have been easy, without incident and happy.

I'd be lying.

I've accomplished a lot.  If you couldn't tell, I write.  I have a number of blogs AND I've finished a manuscript for my first novel and am seeking representation AND I work full-time AND see to the welfare of my senior parent AND trying to maintain a balance.

I'll be the first to admit I've dropped a few balls along the way.  My body rebelled.  I pushed to far and paid the price.

Here is the hard part.  I still don't 'look sick' according to people who are around me.  How do I explain to them looking sick has nothing to do with the body aches, the headaches, joint pain and debilitating exhaustion.  And let's not forget weird rashes.  And my particular favorite, my particular blessing,  reoccurring shingles.

I find ways to soldier through it all. I have to.  I rest when and where I can.  The rub is, only I can pay my bills, put food on my table and kibble in my dog's bowl.

I'm living on a deferred payment plan and if I am not careful, the bill will come due in full.

My Minefield of Denial

I'm the first to admit I'm happily sitting smack dab in the middle of a minefield of denial.  With my fingers in my ears, singing LA-LA-LA-LA-LA at the top of my lungs.

I'm having issues with seeing how to reconcile the limits of Lupus with my job, my goals, and my dreams.  Yes, I'm grateful that I now have a label to put on the misery I've been experiencing over the last several years, but I HAVE THINGS TO DO!

A good friend reminded me last night, that I needed to throttle back and re-prioritize things. I needed to reset my level of expectations. Stop going full throttle and listen to my body.  If I didn't, my body was going to stop everything for me.

Deep down, I'm feeling a lot, and I do mean A LOT, of resentment about this.  Psychologically, my physical weakness is making me feel old.  I am not old. I'm not even past my prime.

I'm faced with a deep seated fear that I won't be able to provide for myself.  This fear is really gnawing away at me.

This leaves me sitting in the middle of my minefield of denial, with my eyes squeezed shut, babbling loudly, hoping it will all go away.

I'll let you know how this works out for me.

Some Days are Like This

It's better to suck at pessimism that to suck at being an optimist!

The Elephant in the Room

  This month on the Lupus Foundation of America site, they hosted 15 Questions with Ms. Cindy Coney: Dealing with Stress - Balancing Family, Friends, Activities and Lupus.  I have to say that I found it encouraging to find that I wasn't the only one dealing with issues of stress, work/life balance and communication when it came to Lupus.


  I'm having problems communicating to certain family members about my struggles with this disease.  Because I'm still functioning, not collapsing in a puddle of writhing agony, bleeding from orifices, or projectile vomiting I must be exaggerating.  The most difficult part of this is that, this isn't the first time my family has dealt with a serious illness. My father passed of a serious fatal illness.  Even then, he didn't want to talk about the details.        
It was more the elephant in the room that no one talked about.  


  Here is my truth.  I can't live that way. In my case, Lupus isn't going to be fatal, it will be very inconvenient. It will impact me when I'm not careful.  Or when my body has a flare that I can't control.  I have to say no to family members and they just get a look on their face that says 'she's just being a drama queen.'


  No, there is no drama.  It's just me taking care of the elephant in the room. Because if it's not cared for, things will get ugly really fast.  

Keep Going!

The thing about Lupus is that the person who has is has a choice.  1: circle the wagons and wallow in their own mire of poor pity me, or 2: reach out and find people who are also going through it and fight through it together.

I found a quote this weekend by Winston Churchill this weekend that I thought was apropo to a Lupus flare:

If you're going through hell, KEEP GOING! 

I don't have to be doing this alone.  While our individual journeys are unique, we can draw strength and inspiration from each other.  Making it easier to go through the early stages of diagnosis, a flare or just the day to day living of this disease.

It's easy to sit mired in my own head, never seeking out support or friends that could help me.  There is a whole wide world out there of people facing similar fears.  Fear is so much easier to handle when you deal with it together.