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Monday, November 29, 2010

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.  

Friday, November 19, 2010

Insanity at its Best!

I've been away for a little bit. I've been engaged in the madness of National Novel Writing Month.  This is where crazy writers engage in a form of self-inflicted torment to produce 50,000 words in 30 days.  It roughly amounts to producing a first draft of a novel.  All the while going about your normal day to day activities.

Yes, this is insanity at its BEST!

I share this with you because, I've done this for the past seven years.  Five of which I've reach the goal.  Last year, I completed my first novel and am shopping around for an agent for publication.

Writing is a passion, a life affirming act in my life that makes any trial, tribulation, or task ultimately worthwhile.

Knowing that I have Lupus explains that days where I'm writing and I have what I used to call my 'brain farts'.  I would have the word on the tip of my brain. I could see it, taste it, feel it, but I couldn't for the life of me formulate the actual word to put it on the screen of my computer or on paper.

As a writer, can I tell you how frustrating it is to lose words?

Now I know it to be cognitive haze. A solution I found would be to bracket the section, describe the word, then keep on writing.  Often the word would pop into my mind around 2 a.m. (yeah!).

Rest is key to my writing.  I have to make sure that I get enough solid rest for my brain to give me its best.

Why am I telling you all this?  Because Lupus is simply inconvenient. It is something that I work through to get the rest of my life done. Do I ever get annoyed with it? Of course!  I don't want to be tired, brain dead or hurting. That being said, I will live my life with an eye to the future I want to have.

Friday, November 12, 2010

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.  

Wednesday, November 10, 2010

I am What I Eat?

The more reading I do, the more I come to realize food plays an important role in how I'm feeling.  The truth is that I'd pretty much figured this out before the diagnosis and had been struggling to make sense of what worked.

Here's where the conflict comes.  The farther you stray from reputable web sources (i.e. the LFA, NIH or similar sites), the wilder the claims.  'You can be CURED!' by becoming a strict vegan.  Give up all things white in your diet and the Lupus will go away.  Hop on one foot during the new moon while patting your tummy and the Lupus will be a memory.

You get the picture.  The last LFA web teleconference I was on, Dr. Philip L. Cohen, M.D., Rheumatology Section Chief, Temple University School of Medicine, said something that stuck with me.  While the person who suffers from Lupus has basic similarities, the symptoms and treatments can vary wildly because there are 30 to 40 genes that contribute to this disease.  Not all the genes have to be triggered to bring on the symptoms, but it certainly makes the diagnosis and treatment difficult.


Back to my dilemma with food.  I am convinced that my diet affects how I feel.  I'm seeking out everything that I can find that will give me a direction.  People I know that have walked this road before me have chosen a vegan life-style, which seems to be working for them. 


I enjoy food, I enjoy cooking. (which would explain my voluptuous figure.)


I'm finding the less processed food, more fresh I eat, the less tired I feel.  I also have less soreness.  Of course, it doesn't help that I tend to be a stress eater.  Which I've been working on.  


Fortunately, I have a palate that enjoys all kinds of food.  More importantly, I need to figure out how to make sure that I'm meeting my nutritional needs while managing this disease.  


Stay tuned as I figure out what works for me.  

Monday, November 8, 2010

Keep Going!

The thing about Lupus is that the person who has is has a choice.  1: circle the wagons and wallow in their own mire of poor pity me, or 2: reach out and find people who are also going through it and fight through it together.

I found a quote this weekend by Winston Churchill this weekend that I thought was apropo to a Lupus flare:
If you're going through hell, KEEP GOING! 
I don't have to be doing this alone.  While our individual journeys are unique, we can draw strength and inspiration from each other.  Making it easier to go through the early stages of diagnosis, a flare or just the day to day living of this disease.

It's easy to sit mired in my own head, never seeking out support or friends that could help me.  There is a whole wide world out there of people facing similar fears.  Fear is so much easier to handle when you deal with it together.

Thursday, November 4, 2010

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.

Tuesday, November 2, 2010

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!

Monday, November 1, 2010

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!