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.

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.  

I'm Annoyed

I am NOT a happy camper.  I have weird spots erupting around my body. This last week, my legs have been itching.  Like I had a bunch of ants running up and down them.  My left leg in particular.  Then, I went to Bark in the Park on Saturday (I'm involved in dog rescue so I kinda had to, but I had the hat, sunscreen etc.) and I just ended up feeling really crappy when I came home. My face a glorious fushia.

I woke up Saturday morning with a discoid blemish 1/2" wide on my upper inner thigh. Let me tell you.  That was alarming.  It was surrounded by smaller raised pink bumps.  It's not sensitive, just really ugly.

Then that afternoon, I found a raised blemish on my face.  Along my cheek bone.  I'm keeping a photo journal of the blemishes.  That way I can show my doctor when I see him next.

I'm frustrated and annoyed.

I'll get my fight back tomorrow.

Burying my Head in the Sand

Telling people outside my family about my Lupus has been a lot easier than figuring out how to tell the siblings about it.  I know that my friends will support me 100%.  I can trust them to be their for me through thick and thin.

They've never looked at me and said, "I just don't understand why you don't take better care of yourself."  Like Lupus gives you a choice.  You can be doing everything right.  Eating right, exercising, but this is a disease where the immune system futzes out and rebels.  In the computer world, we'd say a gremlin was in the hardware.

I love my family. I've discussed this with my mother.  She's processing this.  My father passed away from an unrelated terminal illness.  This is not something she wants to deal with.  I can't blame her. But part of me does.  She's my mother and I want her to listen.  So, if she's not listening, I'm pretty sure that the sibs won't react well either.

I'll tell them eventually, but the approach will be tough.  There is no easy way to do it.  I'm laying to the ground work.  Putting Lupus support information on the blogs I write that I know they read, on my Facebook page.

I know that in their own way they love me and don't want anything to be wrong with me.  I've seen them drowning in the depths of their denial.  Frankly, I'm not sure that I have the energy to deal with their fear.

Yes, I'm being passive aggressive about this.  I haven't fully processed this myself.

I'm going to go back to being an ostrich.