Dental Work

I'm getting a crown on a back molar.  That wouldn't be an issue, if I didn't have to go back in and have it recast because something happened to the original cast at the place where the crown is being made.

Why am I talking about this on a Lupus blog?

Because, I have a mother of a headache that is exacerbated by allergies and a flare only to be irritated by the tension of holding my jaw tight for three minute intervals why the most nasty stuff in the world is in my mouth for the mold.

My mouth is still tender.  My sinuses are in revolt.  My head is ready to explode.  AND my system in general just wants me to fly the surrender flag and curl up in a ball to go back to sleep.

Even though I feel like an extra from the dentist scene of the Little Shop of Horrors, my dentist is a good guy. He is aware of my condition and gave me breaks between castings.  I just have to be aware that this is something that will have a more profound affect on me in the future.

I am unamused.

Principles in Food

Starting last Sunday, I decided to make a shift in my eating pattern.

A shift I have been pondering, pondering very hard (kinda the way I think of exercise), for the last year.

I have shifted to a more vegetarian lifestyle. I've been doing this more and more over the last year. But I made the commitment yesterday.

Research shows that a more plant based diet helps with the inflammation issues in Lupus. Although I will need to avoid alfalfa (though I don't eat alfalfa on a regular basis) because there are properties in it that can trigger lupus flares.  Which would be one on of the reasons to restrict any product that might have ingested alfalfa. (so long anything that moo'd or bleet'd).  There is nothing that says I can't enjoy anything that swims. :)

My choice is guided by the following principles:

And again, verily I say unto you, all wholesome herbs God hath ordained for the constitution, nature, and use of man—

Every herb in the season thereof, and every fruit in the season thereof; all these to be used with prudence and thanksgiving.

Yea, flesh also of beasts and of the fowls of the air, I, the Lord, have ordained for the use of man with thanksgiving; nevertheless they are to be used sparingly;

And it is pleasing unto me that they should not be used, only in times of winter, or of cold, or famine.

All grain is ordained for the use of man and of beasts, to be the staff of life, not only for man but for the beasts of the field, and the fowls of heaven, and all wild animals that run or creep on the earth;

And these hath God made for the use of man only in times of famine and excess of hunger.

All grain is good for the food of man; as also the fruit of the vine; that which yieldeth fruit, whether in the ground or above the ground— (D&C 89)

Lupus was not something I chosen to have in my life. I'm still struggling with how to cope with it. I need to be smart and sensible about my choices.  I can work to make my body as healthy as possible.

I choose to give my body a fighting chance. That includes the food I eat, utilizing my faith, and not beating myself up to badly over the course of this life long experience.

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.  

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.  

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.  

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.

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.