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.

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