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.

One Step at a Time

I have a love hate relationship with health insurance.  Don't get me wrong. I am grateful that I'm able to work to have' affordable' insurance.  But lately, with the passing of the new health care bill I'm not so sure anyone has been done any favors.

At work, my HR department is scrambling to keep up with all the last minute changes that keep coming down the pike.  While I know that I'm insured, I can't access any of my insurance information on-line at the moment.

With all of this, the actual costs keep going up.  I'm single and I'm complaining.  I know that families are being impoverished by the costs.  Work is always running Wellness programs that encourage us to be fit and healthy.

The problem is with Lupus, participating in those programs is tough.  I know that it is a Catch-22, the better I eat, the more exercise that I get, the better I'll feel.  It's getting into the swing of it.  I'm tired. I'm struggling to maintain my status quo.

I sometimes feel as though my insurance is contingent on me getting better.  When I know that there is no 'better' only management.  I didn't ask to get sick.  I'd like to not feel like I've done something wrong when I'm trying to figure out all my costs when it comes to my health insurance.

How do I manage all of this?  Like I do everything else, one step at a time.

Smelly Things

I'm currently the victim of chemical warfare in my office building.

A catastrophe happened over the weekend, where the kitchenette flooded. The maintenance people sucked up all the water, then put on a fan to 'dry' the carpeting.  Then today, some enterprising cleaning person decided the damp carpet looked dirty and sprayed the most noxious carpet cleaner on the floor in the middle of the work day, with the fan pointed out into the hallway spreading the fumes into the entire office space.

Yes, my head is splitting. I can't eat and I'm currently in an email battle with the dimwits at corporate facilities and the building maintenance. I haven't puked yet - only because the mere thought of food sends me into a panic so there is nothing there.

As I tried to explain to the chemically brain-rotted maintenance person, as he started to add a layer of aerosol fragrance to the already nasty chemical stew floating in the air, that he was making people in the area sick -  I was told that he felt fine and that I didn't know what I was talking about.

I felt that projectile vomiting, while it would have made my point, was beneath me.

This afternoon, the smell of the chemicals has dissipated, but the damage is done.  I know that the next couple of days may turn into a complete cluster, courtesy of the nincompoops here at work.  I can only hope that when I get into the fresh air some of the headache will go away.

If not, someone is going to pay for my missed work.  It won't come out of my vacation.

Seeking Illumination

I'm trapped in what I fondly refer to as 'Office Hell' every working day. In an 'effort' to save the planet and be 'green'. My company has replaced all light bulbs with energy efficient fluorescent bulbs.  Yeah me!

I've known for years that the fluorescent bulbs has sent me over the edge when it came to my ever present headaches.  There is a flickering that I have always seen.  It doesn't seem to bother most people, but as long as I could remember, I've been sensitive to the fluorescent flicker. With my job I'm on a computer 8-10 hours a day. Some days, I give up all pretenses of looking like an adult and wear my polarized sunglasses in the office all day.  Let me tell you - it really does help. Between the monitor and the light bulbs, I should be curled up in a dark corner by the end of the day.  Believe me, I often feel like I am.

I can't get away from the fluorescent bulbs they are everywhere. Even at home, I share a home with an aging parent who insisted on changing all the lights out to CLF's to save money. This fall I changed all the bulbs in my living spaces back to full spectrum incandescents. That has made a huge difference. By the end of the day, I've reduced the eye fatigue so I can function through out the day. The lights aren't changing a funny color on me  (when my eyes got really tired in fluorescent light everything would go yellowish).  Moisturizing saline drops help work through the eye fatigue.  

I've never been a sun worshiper, I inherited my father's fair English complexion. But, I'm very aware of how light affects me.  It's like the story of Goldilocks and the Three Bears - I can't have too little or too much.  I have to have just enough light to thrive. 

So, I seek illumination on the subject of light.

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.

Two Halves Become Whole

I have to admit that I'm not doing so well at the Work/Life balance thing.  Really, honestly it has to do with a deep seated fear that if I slow down, I'll end up stalling.

I know that fear is irrational.  But it is valid.  I feel myself slowing down.  I resent needing to slow down.  I've always been the one juggling a ton of things and getting them done. While it is a cold comfort that I have a reason that my brain fogs out when I do too many things, I just get irritated with this limitation.

Okay, yes I'm pitching a bit of a hissy fit.  If the visual of me kicking my heels on the floor and banging my fists in time with my feet like a three year old helps the visual, enjoy.

So, you've heard from the irrational, scared, angry part of me.  The more accepting, zen part of me is doing her best to pick up the toddler self and calm her down.  Letting her know that in the end it will all be okay.  That the limitations are just something to be worked around, over, under, and through.  It's okay to be upset by the changes.  The cold hard reality check is that there is absolutely nothing I can do to change my circumstances.

Instead of whinging about it, the rational part of me tells me to let things go.  I don't have to do everything I want to do at once.  At work, I can slow down.  I NEED to slow down.  The people with whom I've work with, who know me and trust me, will work with me in my new circumstances.  It's me that has to be okay.

Yes, I give myself permission to be slower and feel like crap while I'm getting the stuff done that must get done.

I'll celebrate the good days and be grateful for everyday that I have.

As my rational self soothes my fearful toddler self.  The two will merge to become a stronger person able to still make the leaps of faith needed to live with gusto and have the serenity to step back as circumstances dictate.

'Tis the season .... For the Plague!

Sneezing, coughing, sniffing can be heard across the floor at work.  In elevators, I waiting for that stranger to sneeze without covering their mouth, exposing everyone to their icky germs.  Seriously, what DID their parents teach them as a child.

I've never been a particular germaphobe, but I do know that I have been more susceptible over the last several years to the bug du jour.

As a kid, even a young adult I had a really strong immune system.  I could pretty much survive anything. I only recall getting the real flu once in college. Trust me projectile vomiting in the middle of the sidewalk because I wasn't going to let no stinkin' bug keep me from my mid-terms was a memorable moment in my life.

Now when someone sneezes in my direction, I throw hand sanitizer at them, followed by tissues and a threat of violence if they come any closer (I feel that any jury would find in my favor if it got that far). I'm considering wearing a mask for the next 6 months out in public.  People would avoid me then! :)

That brings me to today.  The annual Flu Shot extravaganza.  I didn't use to get them.  Frankly, the years I got them I seemed to get the flu more often.  Now?  I get them every year.  I usually have a little reaction to them but the end result outweighs the initial inconvenience.

The Lupus Foundation of America recommends the Flu vaccination as well as the Pneumonia vaccination due to the suppressed immune system issues of the Lupus patient.  The key is that the vaccination can not have 'live virus'.  The nasal spray vaccination has this.  So a shot is necessary.

So many people come to work sick.  I'm much more aware of the impact of one cough, sneeze or runny nose.  I can't be responsible for bringing the plague to work. Frankly, I expect the same responsible behavior from the people I work with.