Oh Me, Oh My..

I find this journey I am on fascinating and frustrating.  That's right my life has turned into an oxymoron.

I still struggle with exhaustion, which drives me around the bend.  The irony is that caffeine just makes it worse, so I'm working on a balanced diet (I miss Diet Dr. Pepper). I feel like Lupus is turning me into a old woman.  I AM NOT OLD!

And, I still am dealing with headaches, though they are now a dull roar instead of stabbing pain.

The body is still achy and unhappy.

Have I whined enough?

The good news is I am forced to manage my time and interests with an iron fist.  Saying 'no' tactfully has become an art form in my personal and work life.

Would I be this organized if I didn't have Lupus?  Maybe a little less driven, but determined to make my goals.

All I know is that my reality has shifted and I'm learning how to deal with it.

Domino Effect

A week ago, I was involved in a car accident.  Aside from some muscular issues, I came out of it okay AND my car can be fixed. I can not tell you how lucky I was.  It could have been so much  I'm now feeling about 90% back to normal.  

The good news is no one was seriously hurt AND they can fix my car.  

Why do I tell you all this?  It would seem that my Lupus wanted to get into the act.  Apparently, it was feeling neglected. sigh.

Really?  

I understand that I experienced a traumatic event, but couldn't the flare I'm experiencing coincide with the days I felt crappy from the accident?  Of course not.  I'm achy joints, experiencing headaches and my fatigue level has gone up a notch.  

Don't get me wrong, I am filled with Gratitude.  The entire experience could have been so much worse.  I just wish my body would get its act together.

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.

Happy Face

One of my favorite movies of all time is an Australian film called 'Strictly Ballroom'. When things are going poorly in the film, the mother goes around saying 'Happy Face! I want to see your Happy Face!' The litany goes from a forced happy voice to that scary 'I'm hanging on by my last nerve and I'll take you over the edge with me' voice.

Honestly, there are some days when I feel like I need to be screaming HAPPY FACE! I'm putting on my HAPPY FACE!  Just to get through the day.  I really don't want to put my 'I feel crappiness' on anyone, so I slap on a smile and get through it.

Yes, I live deep in the land of Denial.  And I'm proud of it!

This doesn't mean I'm ignoring my needs.  I'm just going about setting my boundaries quietly.  Enforcing them without making a fuss.  No matter what, the family doesn't want to deal with my illness.  And frankly, it's exhausting at times having to justify how I feel.

I have really good friends who bear a lot of brunt of my whinging.  I do my best to make sure that I give them equal time.  After all the world really doesn't revolve around me.

With the advent of Spring, I'm not feeling so springy.  My allergies are kicking off some flare activity.

So, I'm going to just keep yelling....

HAPPY FACE!!!!!!

Maybe I'd better step away from the keyboard....

Christmas Celebration

This Christmas has been a weird mixture of celebration and reticence.

Christmas is the time where people have been know to test the limits of my patience and endurance.  For the longest time I had no idea why.  Maybe, I was going crazy. Maybe, I was just plain cranky. Maybe, I was just a witch.

The relief I felt when I had an explanation given to me in September was a pure relief. I was none of the above.  Simply put - I was sick.

Having a parameter to work within suddenly made my ability to enjoy the holidays much more attainable.

This brings me to this merriest of days.  Instead of reading my mother's mind, holiday preparation became more of a team effort.  I could say 'no' and not feel guilty, picking and choosing what was important to me.  Making the interactions I chose that more valuable and remarkable to me.

Today, we had a ton of people over.  Kids running amok. A small dog like creature who was finally put into place by my very cranky cat. And my very happy pit bull who was the happiest of social butterflies.  Giving as much love as he received.  When the noise levels reached super sonic levels, I just found a quiet corner for a little bit.  Others gravitated with me seeking the same quiet.

Not that I don't have special memories of past Christmas's, but today is special to me because I could understand what my needs were and address them.

When the hoards left happy and full, the silence that filled the house was deafening yet comforting. The cessation of noise flung my already simmering head into a full blown migraine.

So, with the help of modern medicine, I settled in for a long winter nap.

Yes, the holidays are manageable.  With planning, perseverance and chutzpah.

Merry Christmas everyone!

One Person's Clutter is Another's Organization

According to some, I am a clutterbug.

I refer to myself as a vertical filer.  I have vertical files where I need them, exactly where I need them.  God help the soul who decides to 'help me'.

Organization is a very subjective thing.  I tried Franklin Covey and found myself boggled by the complexity.  It took me longer to do their process than it did to actually accomplish the task.

This brings me back to my need to be left alone.  I found myself cleaning this weekend.  My inner piler was deeply offended by the process.  Don't get me wrong.  The end game was good.  But I'm still looking for things that I put in safe places.

It will take me a while for me to recover from my cleaning fit.

With my Lupus, I'm finding that a certain tweaking to my organizational skills helps me keep my stress levels down.  But I still have a lot to do to reconcile the two.

I'm going to go make a pile. I'll feel better.

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.  

Lupus & Work

My new reality is really my old reality.  No much has changed in my grand scheme of things.  My day to day living experience is still up and down, good and bad, etc.

It's Life.

What has changed is my understanding of the 'why' of my physical condition.  There is a certain satisfaction knowing that I'm not losing my mind.  For a while there it was a close thing.  It's a relief to know there is a reason for all the aches and pains.  That, through patience, I'll be able to manage this.

How I deal with work, now that's a challenge.  Generally, I can make everything work.  But I have a small problem.  I'm a type A personality with a definite overachieving issue.  I want to get the job done.  I like to work.

My acknowledgement of Lupus is forcing me to re-evaluate how I do things at work.  How many responsibilities I take on and when I ask for help.  I'm not very good at asking for help.  The LFA website has a great article about making my workplace more manageable.  I'm slowing getting the changes I need implemented. Re-jiggering my workspace to be more ergonomic, working with facilities to help me out with the glare.

All this is something that I can ask for according to the ADA.  I'm not planning on stopping work anytime soon, so I have to find a way to make my work environment as friendly to my current situation as possible.

Yes, I have Lupus and I'm learning to ask for help.

I Need A Gun

Maybe that is too bold of a statement.  But in my fantasy, I could shoot myself and put myself out of my misery, then be back when I'm pain free! (I know, totally unrealistic. Who said fantasies were anywhere near reality?)

I'm back to being achy, headachy and miserable.  Really, I think a bullet might solve the issue.

No, I'm not suicidal, I'm just hurting.  I'd want it to be a Groundhog day experience with the ability to control what I got to re-experience.  But, as we all know, it just doesn't work that way. sigh

I can't get back in to see the rheumatologist until Thanksgiving week.  My family is not getting the whole I'm tired, sore, and achy leave me alone thing. And I still have to get up every day and go to work.

I was doing okay for a while the achiness was marginal, just a twinge or so here and there. Now it's back to the 'I feel like I've been beaten by a spiked bat'.  I'm not sleeping well. I can't get comfortable, I toss and turn, waking myself up.  I just don't know what to do.

The last thing I can do is get stressed out about it, but I'm finding it to be a vicious circle.

I'm just going to do my best to just breathe.  Relax, the best I can.  And pray for relief.

And if all fails, find a Nerf Gun and go to town!

Desserts

Today started with a stress inducing phone call of the personal nature at work.  Not a way to start a packed day.  The person who started my day, was angry.  So angry that they had to spread their virally infectious nastiness and crap all over my morning.

Enter, stage left, a stress headache.  It's been waiting in the wings to take center stage for a couple of days now. But I've been successfully avoiding it, until this morning.

Stress has never been my friend. I do my best to avoid it.  Often times it would seem to an outside pair of eyes that I am in an avoidance pattern.  The reality is I pick and chose my battles.  Really.  There are things worth fighting about and things not worth my times.

The thing this morning? Not worth my time. But it certainly had an impact on me.

So, I'll work on being destressed and concentrate on my desserts - Chocolate straight up!