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.

Horizontal and Vertical Adjustments

So much for my resolve to post more regularly.  It's allergy season and I'm starting to feel as bad as I did this time last year.  To top it all off, I decided to get proactive and get allergy tested.  I've lived in Virginia for almost six years and haven't gotten the specifics of what sets me off other than oak.

I'm off my allergy meds, sitting at work, wishing I was any place else.  Preferably asleep. The irony?  I couldn't actually sleep if my life depended on it.

AND, I'm breaking out in spots.

I AM UNAMUSED!

I know that Lupus is requiring a different mind set from me.  I'll be honest.  I'm having trouble adjusting. I feel like I'm a bad picture on a television screen. Out of focus and out of whack.  Part of me wants to look as bad as I feel, while the vain peacock in me reigns that in.

I'm grateful for the small things.  My sense of humor, my friends, the fact that I can still work.  I'm grateful that I can string my thoughts together for a good whinge.

I'm working on focusing the picture of my life.  Coming to terms that the new picture will be nothing like the old one.

That's going to take a while to reconcile.

Family Politics

On top of dealing with the vagrancies of Lupus, I also have to deal with all the issues of an older parent who is dealing with their own health issues.

Stress is on of the factors that contribute to Lupus flares and I live in a pressure cooker of stress with very little respite.  I go to work so that I can have a break. Yes, that's right. Work is less stressful than my home life.  How sad is that?

Here's an example of what I have to deal with.  Today was a general broadcast for my church. We could stay at home and listen.  Normally this is a nice break from the normal worship service.  Mom, who is hard of hearing, was having trouble with her hearing aids. This frustrates her to no end.  I can understand this.  I respect this.

She has headphones that she can use to focus the audio from the television into her hearing aids.  Of course she looks like she rocking out to something. Not enjoying a worship service.  As I try to convey they make her look cute, she takes complete offense and tells me I'm attacking her.

I don't make a big deal over the Lupus at home.  I just don't.  Mainly, because, I have to justify everything to my mother.  She wants detailed descriptions of everything, then she second guesses everything.

No, she does NOT have a medical degree.

I stand my ground and tell her that I'm not attacking her she is having none of this.  Apparently, her deafness is all about me.  That's right folks.  I have figured out a way to capitalize on the hearing impairment of my mother and make it all about me.

The moment those words crossed her lips I was flabbergasted.  FLABBERGASTED!!!!!!!!!!!!!!!

It's bad enough I have to deal with Lupus, but the insane imaginings of an aging parent is getting more than I can handle.  I'm going to have to fly the surrender flag soon and give the responsibility to the other siblings.  They will have to make up their minds on how to divide up care.  I just can't do this anymore.

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.

I'm Sore Again

I'm having trouble figuring out what constitutes a flare in my Lupus experience.  My one constant exhibitor in this journey has been the over all achiness and fatigue. In the last few weeks, my hands, joints and muscles are back to letting me know the are not amused with their current predicament.

I can't even blame it on any New Year's resolution gone bad.

On top of that, I'm finding that at night I'm experiencing numbness on the side which I sleep. I know it could be from sleeping to long on one side. Here's the kicker. I'm a restless sleeper. I toss and turn all night long.  Even when I turn the numbness takes awhile to abate. I have to lay flat on my back, which is annoying as a side sleeper.

Next doctor's appointment is in three weeks.  I'm documenting.  I just don't know how to describe everything. How do determine what's important and what's not.

I'm worried about being a whiner.  I'm worried that I'll miss something important.

I'm worried.