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.

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!

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.

"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.

Family

I did the auntie thing this weekend and watched my brother's kids with my mom, so he and his wife could get away for a well deserved break.  This was definitely a tag team effort as a lively group that ranged from 10 (almost 11) to 18 months.  They were all great.  Really.

The 18 month old was a trooper with his little cute put-put-put and sheer charisma, his sisters all helped wrangle him.  Even the dog helped keep him entertained.

I quickly realized how tired I was by the time Sunday arrived.  I can't imagine how parents with Lupus handle their family lives.  I'm single, no children, just my fur-child. And I'm wiped out.

Would I trade the experience?  Absolutely not. Am I going to be paying for it. Absolutely.

I pushed myself to hard. My mom fell victim to a 24 hour bug, so I was the responsible adult.

I DO know that sometimes you just have to get things done.  This was one of those cases.  Will I have to do it again?  Maybe.  I'll be better prepared next time.

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.