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.

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....

Circumstances

Half the month as gone and I'm behind.  Not to say things haven't been happening.

Let's run down the list.

1. I'm learning to identify how Lupus and my allergies play together.  Since I have some aggressive seasonal allergies, I'm learning how my Lupus reality and my allergies play off each other. 
2. I've completed a novel and am shopping for an agent.  While this isn't directly health related, it is something that affects my stress levels.  After all rejection is a stressful thing.  For that matter so is success. 
3. Work has been moving full steam ahead.  Lots of changes happening. Not bad, just a lot of balls in the air that require me to stay sharp.  I'm still dealing with some exhaustion.  The cognitive haze that I was dealing with last summer has not returned. I do believe that that is a due to the Plaquenil.
4. I have several writing projects in various stages.  Just because one project is finished, doesn't mean that I rest on my laurels. I have to continue to write, my goal is to augment my income as a writer.  Therefore this is essentially a second job.  

Then of course there are the normal family and day to day things that never stop.  My life is full. Better than it was.  Is it where it was a couple a years ago? No. Will it ever be? Probably not. I'm okay with that.  I rather know the big bad in my life. Then I can find my work arounds.  I can still live my life.  

Live can be lived in the most extraordinary circumstances.  As a person, you have to be willing to see the opportunities where they lay.  And the opportunities are vast.

Am I glad I'm sick? I'd rather not be.  Will I wring my hands and decline like a Victorian maid?  Absolutely not.  

A New Year, Same Attitude

2011 has started with a whimper.  I do mean that literally.  I have a sinus infection that has taken me hostage, complete with a vicious headache.

So I feel like crap.  Various levels of crap is nothing new.  I find that it's the attitude by which I wade through my difficulties that give me the edge.

I firmly believe that I have things to do, small planets to kick out of orbit, and plenty of chaos to create.  I can do it whether I feel like a million bucks or like the bottom of a trash barrel.

I'm meeting 2011 with an attitude and proud of it!

I hope you do too!

And There's Progress

Tonight I had an interesting conversation with a family member who has been very resistant to my Lupus condition.  Denial would be an accurate description.  I've not made a huge issue with her, mainly because I've recognized that I can't change a person's mind. I can only make changes in my life, my perception, my reactions.

In the course of this particular conversation, not only did this family member acknowledge my Lupus, but the limitations that came along with it.

Inside my head, I was doing cartwheels and shouting 'HUZZAH!'. To the exterior observer, I was calm and collected not letting on to my inner joy.

This is a huge turning point, in our relationship. We talked openly about how Lupus was affecting me.  How the medication I was currently on was helping me, but not necessarily taking care of everything.  This was the first real, productive conversation we'd had about Lupus since September.

Will there be set backs?  Oh, guaranteed.  That is the nature of relationships.

Does this give me hope? ABSOLUTELY.

Patience is the name of the game when dealing with a circumstance that affects your entire spectrum of life.

Some Days are Like This

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

Tis the Season...

So the Holiday season has descended with full force and gusto.  People are humming the incessant Holiday jingles that pervade every public outlet in the land.

I'll be honest, I like a quiet holiday season.  When I want the holiday music, I'll listen to it.  When I want to listen to it.  Please don't think me a Scrooge.  My holiday shopping is done. I have a few gifts to finishing sewing, then stuff in the mail.  We are getting the house decorated.  But, I'm low key.

One of the things I started last year, before I received my Lupus diagnosis, was to say 'no' to events that I didn't want to go to.  Yes, this is a very social season, but when you are dealing with exhaustion non-stop socializing is like having a broken alternator in your car.  The battery gets drained and never recharges.

With the changes I've implemented in my diet, exercise and medication, I'm feeling a lot better.  That being said, I know that I still can't overextend myself.  My alternator is still faulty and needs to be replaced.  I just need to be aware of my limitations.

This season is a reminder to be Grateful, Compassionate and Hopeful.  These are the attributes that will get me through the times when I'm not feeling the best.

As I face this holiday season, I promise to embrace the spirit of the season now and through out the coming year.  To give thanks for my blessings, share Goodwill with all and share of myself.

A Creative Life

I've reached my NaNoWriMo goal and survived the month of November.  That's right folks, over 50,000 words have been typed by these fingers.  50,000 coherent words that make a story.  Okay, a rough story. After all it is a first draft, but a story none the less. 

There were days when I thought my brain might not be up to the challenge, but I think the Plaquenil started making a difference.  At least the over all achiness that had been plaguing me has seemed to lessen. Of course now I'm noticing how badly my head is aching.  If it isn't one thing, it's another.  

The reality is that no matter what, I'm a storyteller.  Whether I'm telling the story of my Lupus journey or the stories I have stacked up in my head like a busy airport waiting to land on my computer hard drive.  I'll alway find a way to get the story told no matter how I feel.  It is integral to who I am.

Not expressing myself is tantamount to muzzling myself.  Been there, got the t-shirt.  No one should ever feel that they can not express how they are feeling.  

Feeling free to fill ones soul with the essential creative exercises that fulfill us.  For some that is organizing spaces, finances, lives (I tend to be a bit of a clutter-bug). For others the arts call to them.  For others acts of service is a creative exercise that fills voids to over flowing. The simple act of being creative is a stress reliever. 

As I live a creative life, I am a better person. I am fulfilled, happy.  Whether my stories get read or not, the act alone is gratifying.  

Moments of Celebration

Yesterday was National Pit Bull Awareness Day.  I celebrated by hanging out with an amazing group of Pit Bulls and their owners for most of the day.  Quizz, my amazing side-kick, participated in two classes then, by the trainer's recommendation, went for his AKC Canine Good Citizen Certification.  He passed with flying colors!  I'm such a proud mama!

That's right, I'm CGC Certified!  Woot!

It was a long, fabulous, busy day. How could I not love hanging out in a place with such amazing energy?

The problem is that I'm so paying for it.  I knew that I'd be paying for it when we finally got home.  I'd been on my feet for almost 8 hours straight, by the end of the day my joints were starting to get really sore.

This is the conundrum I'm finding with life with Lupus.  There are things that are important to me. Things help define who I am.  Too not do them, then what's the point. I'm not going to admit defeat.

I will have my moments of celebration.  My moments of achievement.  These are the things that define a life.

My Dazzling Hire Wire Act

To be honest, I'm feeling a bit like a performer of a high wire act.  Everyone is oooing and ahhing over the performance of the bravery it takes to walk the wire, but no one really wants know what it takes to learn how to do it.

I've got really good friends that let me babble out my frustrations.  I can't begin to express how priceless that is.  They are my team that helps prep the equipment and costumes. Making sure everything is safety checked, all the sequins and sparkly doo-dads are in place.  More importantly, they are there with my safety net in case of catastrophic failure.

The ironic thing is that while I'm getting use to all the things that Lupus means, I'm experiencing this amazing creative renaissance.  I feel compelled to document my journey.  Write my stories.  Essentially run my various races as I can.  I know that I'm limited, but I'm working within those limits.  

If I find my way blocked, I'll find another way over, under, around or through.  There is always numerous ways to get the job done.

As I walk the wire, placing one foot in front of the others, dazzling the crowd with my balance and grace.  I know that I have a safety net for which I'm very grateful for.

"Looking Sick"

I'm finding it challenging to have to defend how I feel when I don't 'Look Sick'.

What does that mean, looking sick?  Do I need to be breaking out into pink polka dots and zebra stripes? Seriously?

The truth about this disease is that sometimes it simply does not manifest itself in physical signs that can be readily identified.  Sometimes it does.  Do I have the 'butterfly'? Yes, but I've had that for years.  I always chalked that up to a ruddy complexion, so it's considered a normal part of me.  I'm fortunate not to have the discoid blemishes.

I just feel fatigued. I wake up exhausted. I hurt.  My joints ache, I have weird pains in my muscles.  My head hurts.  None of this is particularly new, just worse than it has been in years past.  All of this is hard to quantify.  Without gushing blood, open wounds, projectile vomiting or spiking fevers, there is nothing for someone outside my body to see.

When I'm trying to convey to my aged mother how I'm feeling, it becomes a oneupmanship - who's feeling crappier.  Apparently, I'm taking attention away from her.  She won't acknowledge that I could be having a bad day.  After all I'm functioning.

Well I've been 'functioning' for a long time.  I have to.  Who else is going to pay my bills, take care of my dog and do the things that are necessary.

I have a high tolerance for pain and discomfort.  Because, I've never put myself first. Well all of this changes.  I'm starting to get really angry.  My health, how I'm feeling, this disease is not a competition.  IT'S MY FREAKING REALITY!!!!!!

How dare it be minimize it because of fear.  I respect her fear, but I can't condone her diminishment of what I'm going through because she can't deal with is.  I am not looking for sympathy.  Frankly, I'm not looking for special circumstances.  I just want to be able to refuse an invitation or say 'I'm not up to going out today.' without getting a guilt trip.  Or without the most condescending of phrases, 'You don't look sick.'

I'm even angry at myself for allowing myself to play second fiddle.  I'm important.  My needs have to come first.  This is not being 'selfish', this is about me being healthy.

Defined by my Substance

'Death is at your door step and it will steal your innocence, but it will not steal your substance.'

 Mumford & Sons - Timshel

As I work through everything in my head (there is a lot of stuff in my head), I can't help but think about the frailties and limits of this life.  But at the same time, I'm in complete awe of the human will to move forward and survive.

All this sounds really contemplative.  What I'm really saying is that I want to be defined by my choices and the people who I know and who know me along my journey.  Whether I'm feeling good or bad, I really believe it will be how I handle my now that will ultimately define me.  

I don't want my substance to be stolen.  I want to be strengthened as I move forward in my moments of adversity.

I Give Myself Permission To

I admit to having a Type A personality.  I have a drive to get things done. Mind you, in my own fashion and time.  But get them done none the less.  This illness interferes with my Type A-ness.  It is a fundamental infringement of the need to get things done.

So, I hereby give myself permission to do the following:

1. I give myself permission to take things step by step.
2. I give myself permission to rest as I need to.
3. I give myself permission to create.
4. I give myself permission to put things off until tomorrow.
5. I give myself permission to not make excuses to make others feel better about my situation.
6. I give myself permission to accept myself exactly the way that I am (cellulite and all).
7. I give myself permission to ask for help.
8. I give myself permission to ask for what I want.
9. I give myself permission to to be important.
10. I give myself permission to screw up and fix it as I can.
11. I give myself permission to be vulnerable.
12. I give myself permission to live any dream I dare to dream.
13. I give myself permission to hit the reset button on my life as many times as I want.
14. I give myself permission to love.
15. I give myself permission to say 'no', if the request is too much for me at that given time.
16. I give myself permission to not let negative people stay in my life.
17. I give myself permission to be successful.
18. I give myself permission to keep my focus on what is important to me, not what others say is important.
19. I give myself permission to stop thinking about what others think of me.
20. I give myself permission to be happy.

What do you give yourself permission to do?

Acceptance of my Now

I’m mourning the death of my perception of youth and accepting my now.  My now isn’t old, or decrepit, it’s just slower.  I don’t know if I know how to down shift my life.  I know that I’m going to have to learn fast to make it work.  I have no choice. I have a life to live.

I’m sick.  I own that.  But that won’t be the face that the majority people will see.  Most people won’t be able to tell, unless I say something.  That is the way of this disease.  But I have to make those concessions to be the person that I want to be and stay ahead of this thing. 


The people I trust and love will always be there and support me as I journey.  Their company on this path will be invaluable.

I guess that instead of running (not that I've ever been a runner) I'll be sashaying with fierce style and determination at my life.  I have miles to go and milestones to pass.  In this now that I live in.

Sleep Deprived

I can't remember the last time I slept the night through.  Seriously.  I'm waking up 2-4 hours into my nights rest or a couple of hours before my alarm clock.

Click! My brain turns on and I can't make it go back to sleep.  It has been this way for years.  As I'm researching, I'm finding that I'm not the only one with this problem. (At least the lack of sleep part.  I don't know if everyone is experiencing the active brain part.)

I do know that this turns into a vicious cycle.  Lack of sleep>Runs down any body and mind defenses>Body rebels> Mind rebels> Everything gets sick> Down for a couple of days or weeks> Recovery (kinda, at least can function again). Lather, Rinse, Repeat.

My reality doesn't let me have much down time - physically or mentally.  Yes, I know that I have to make it for both.  I'm working on rearranging my life to accommodated this new set of restraints.  But when you are a Type-A personality who has a hard time NOT forging ahead....

Yep, I need some sleep, just to survive my inner battle with myself.  I'll let you know who wins.

Optimum Speed for Our Circumstances

Saturday was a general conference for my religion.  Where leaders address members globally with words of wisdom and edification.  This is a two day televised event.  Open to the public.

I only mention it, because of something that Dieter Uctdorf said.  'We would do well to proceed at the optimum speed of our circumstances.'  That simple phrase struck me profoundly.  I know that I often push myself beyond what is prudent.  Sacrificing my health and sanity in the process.

The irony is, if I were to slow down, moving within the means of my energy and my circumstances I could accomplish so much more.  I know that sounds like an oxymoron.  But it's not.  It is a signal of self acceptance and love.  Acknowledging myself.

I'm still figuring out and accepting my limits.  There are more than I'd like.  That being said, I know that I can still dream and live a full life all while dealing with my now.

A Dimmed Vim

I'm starting to resent the restriction of my super powers.  Seriously. I use to be able to leap buildings in a single bound, flying around at the speed of sound AND deflecting bullets with a single glare.

Now, I'm lucky if I can get through the front door at work.  Okay.  I can  get to work and get through the day, but my vim is seriously dimmed and my vigor is that of a flat basketball.  I'm used to going full steam ahead.  I'm still trying.  But about mid afternoon I have some serious brain haze.  It's a good thing that I tend to write everything down at work or I'd never get anything done.

Supposedly the plaquenil will make a difference when it kicks in.  But that will be months from now.

So I'm hanging on the ledge of the building I couldn't quite leap over by the tips of my fingers praying for a) the strength to pull myself up OR b) a kind stranger or friend to see my predicament and pull me to safety.

It's a terrible thing when a superhero loses her vim.

Faith & God

I've never been one to cry 'Why me God?!?!?' in the face adversity or difficulty.  I firmly do not believe that God sits down an decides to afflict me with an illness, a trial or a circumstance.  I believe that God is bound by the natural laws that bind the Universe and must therefore work within that frame work.  Illness comes out of the environment, genetics, or stressors in our lives.  Most things we view as trials are the result of choices we have made (good or poor).  Sometimes both happen due to circumstances completely out of our control because of the choices of other people.  How we live with the circumstances will be our legacy.

So I really have no patience for people who get mad at God because of their circumstances.  Please note, despite being at the beginning of my diagnosis of Lupus I've been struggling with the symptoms for quite awhile.  I've had other struggles as well.  I won't judge your struggles or your path, but I will tell you to suck it up and move forward if you start playing the poor pity me card.

You see, I firmly believe that despite the circumstance I find myself in God has not deserted me.  He has not turned his back on me and asked me to walk this path alone.  Instead, he had provided me with friends, family, doctors, nurses and other forms of support on this journey.

My job, if you will, is to reach out and open the door to this well spring of support.

God and His Son are always walking the path with us.  We have to be the ones to open our eyes to their presence.  If our eyes, minds and hearts are shut to all the opportunities of love, friendship and support available out their for us, that's on us.

I want to be able to be defined by my life, not by my illness.  So, when others cry, 'Why God? Why me?' I'm going to be living my life to the fullest extent.  Knowing that I am not alone.

Attitude! I've Got it!

Never let it be said that I don't have an attitude.  I grew up with the attitude that I wasn't sick or incapacitated unless there was blood gushing, temperatures busting triple digits with hallucinations, or body parts missing.

Just feeling a mind numbingly crappy with a miserable headache is a walk in the park.  Okay, a dark, scary, thug infested, keep your personal belongings hidden for your safety, without any type of lighting kind of park.

So, I act confident, move forward and carry on.  Swinging my scepter of attitude like a scythe in front of me to clear my path.

How's it working for me so far?  Swimmingly!  No body parts missing. No blood gushing. And, no triple digit hallucinating inducing fevers as of yet.

I seriously need a nap.

It's Not just in my Head!

All my life, or since I was a teenager I've had headaches.  No one could explain them. I had one male doctor (who was an a$$), who had the gall to tell me I was a mere woman and it was just a female thing.  His answer obviously was unsatisfactory!  I reported him to the local medical board.

Each doctor labeled it as stressed induced migraines, or just migraines.  'You need to have less stress in your life.' 'Work a job with less stress.' Have been common refrains that I have heard.

First of all.  I'm single.  I am the sole bread winner.  If I don't work, there is nobody to put food on my table or kibble in my dog's bowl.  Who are they to tell me to work a less stressful job?  Who are they to tell me to relax?  When they, the doctor's, are clearly not following their own advice?  (Have you seen a doctor after a full day of appointments in an HMO practice?)

I'm not saying that there is not a grain of truth in what they are saying.  Managing my stress is important.  But telling someone to turn their back on their livelihood is just plain irresponsible.

Back to my original topic, my headaches.

I've lived with these headaches for a good portion of my life. It hasn't been easy.  The Topamax really hasn't done much, at least that I can tell.  Imitrex does nothing, the only thing that dulls it is midrin during the day and firocet with codiene at night when it is really bad.  And I'm really careful about taking it.

As I'm researching lupus, I'm finding that headaches seem to be part and parcel of this new reality I find myself in.  So, I it makes me wonder if I have been dealing with this disease a lot longer than I ever thought.

The headaches are part of the package, I'll do what I've always done. I'll carry on.  I'm working on managing my time, stress and work loads. I'm saying 'no' more often, and not making excuses about it.  I'm resting when I need to.  I've lived with the headaches this long, I can continue to do so.

The label of Lupus is just that. Thing haven't changed really.  It's been two weeks since I've started the Plaquenil and I'm not noticing a lot of difference.  Just the vicious over all body ache of last summer seems to have abated.  Now its back to the headaches and the new and improved joint pain.

Education is the key to the management of this new twist in my life.