Tag Archive: Spoon theory

A Day In The Life

A Day In The Life

 Today is International Lupus Awareness Day. Those of you who know me; or have followed my blog, may be aware that I have Lupus. I usually write something poetic about that specific struggle; but I have decided to just share my day with you, instead. Let me first start by saying…this is not a ploy for sympathy; sympathy will not change anything. I know you may have heard of Lupus…but are you aware of it?

I wanted to share my day with you, because sometimes the “Lupus Talk” can be overwhelming…or perhaps it is hard to picture what it is like. This is MY day with Lupus…it will be different than many other Lupus survivors; as the true “Gem” of this disease is that it will attack us all differently.

It all started so simply; I am going to run an errand. I know I won’t be gone long; so I don’t take the necessary precautions. I will go over those momentarily. I put on a t-shirt and pants…throw my hair up in a hat and I am off.

Unfortunately I got stuck in a traffic jam for 30 minutes and it is 86 degrees; the sun is beaming down. For most people, this is not a horrible thing…but I have Lupus and everything is different for me.

In 30 minutes, I have severe sunburn…my face has blisters. My skin is hot to the touch…not because the wind wasn’t blowing, but because Lupus has destroyed my body’s ability to cool itself off…I never sweat. For those of you that don’t realize this; when you cannot cool your skin…it can be very damaging. By the time I get to my errand, I am physically ill. I have to run to the bathroom…I can’t seem to stop getting sick.

By the time I get home; my skin is burning…my face swollen and blistered. It hurts to open and close my eyes, because Lupus often comes along with other auto immune diseases; so I also have Sjogrens. Sjogrens tends to dry my eyes out; causing them to swell and often they turn black and blue. I am running into the bathroom…after getting sick once again, I tear off my clothes so I can take a cool shower…I must cool my skin down.

As I told you earlier, Lupus attacks us all differently. Severe sun damage can do more than sunburn and blisters; it has, previously caused some organs to shut down. I have gone into a coma…had several strokes.

I want you to be aware. Lupus is more than a purple ribbon. Lupus is more than a “Spoon Theory”. Lupus is more than a word. Lupus, for 1.5 million people in the U.S. alone, is a way of life. Up to 15% of Lupus patients will die from this disease…but what that means is up 225,000 Lupus patients , in the U.S., will die; that is 750,000 people worldwide. While Lupus patients are 90% women…it is usually more severe in men. Lupus tends to show up more in minorities; but can affect all people.

Don’t just “Hear” about Lupus…be aware. Be aware that when he/she says she is tired or in pain…it is REAL.

I was raised in a deeply spiritual home. I was taught to be thankful for every moment. But I will tell you…Lupus made me aware. I am aware that my day can change in a moment’s notice. I was in a coma for 2 ½ months; that does something to a person. I am thankful for every single day that is more “Normal” than the last. My kidneys and liver have shut down; my lungs have developed blood clots; yet I am thankful. I am still here…so today…I wanted to share a day in my life. Be thankful for what you have and be aware that some of us have it a little harder than you may realize.

As always, I wish you love and light.

Spoon Talk

Spoon Talk

What is this spoon talk

Amongst Lupus heroes

They symbolize our energy

How fast it can go

You need one to get up

But don’t be too fast

For one spoon opens your eyes

That’s how long a spoon lasts

Throughout the day you have

Limited spoons to use

By mid day you are

Running on a short  fuse

Who would have thought

A conversation would take

So much energy…a spoon

Concessions we must make

Oh and the smiles

They are deceptive too

But she doesn’t want

This to be a burden to you

So she smiles and laughs

While spoons are being spent

Until she realizes that

Her energy…it went

I guess if fatigue was

The extent of this disease

It would be a cake walk

Like a soft blowing breeze

But there is the pain and swelling

There are the organs shutting down

There are the tears she sheds

When no one else is around

There is the knowledge that

Lupus tends to create

Pain, bruising, swelling

The rashes, fatigue…the aches

Its amazing exactly how much

One shining smile can hide

Fear of the unknown

Lupus is a frightening ride

She gives a spoon for this

And a spoon for that

It may get you going

But how do you get back

Every idea you have

Every motion you make

Every attempt at normalcy

Is ALL lupus takes

So I am sharing with you

On this unspecific day

Be aware that this disease

Wants to kill all in its way

So my prayers are lifted up

And my heart it breaks

I know your struggles

How your strength breaks

Lupus and spoons

One day will be done

Keep hope in your hearts

This war will be won

I am sending you a smile

Healing energy and joy

For those days when

Your life feels a void

From my heart to yours

Til we fear the spoon no more

I wish you love and joy

Make memories galore

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