First I was told I had systemic Lupus (SLE) and then I was told to avoid the sun. A double life sentence.

I stayed inside. I got depressed.

While inside, madly researching my new diagnosis, I found an on  online lupus support group.   Each person had a different approach to the sun. Some seemed to have it all figured out and others not so much.

Some lupus sufferers stay inside almost all the time except at night. They feel like vampires, they say. Others carefully limit their time outside to early mornings and evenings. Some determined and prepared warriors go outside, armed with protection at any time of day.

Lupus Worrier to Lupus Warrior 

With the help of this support group, I moved from an inside Lupus worrier to an outside  Lupus Warrior.  These courageous lupus men and women prepare for the outside at any time of day. They arm themselves against sun exposure.

We are determined. We try out, find, and share the best sun protection available.

We know we are in a kind of life and death (or deeper disease state) situation.  Sun protection is serious business.

UV Rays Can Be Life Threatening

When we talk about sun exposure, what we really mean is exposure to ultraviolet (UV) radiation.  

UV-A rays can affect the DNA in the blood vessels without causing a sunburn or other external signs of the exposure.

We might not know when the damage has been done until it’s too late.

All lupus people are aware of their sun time and make sure they do not over do it. The price to pay is just too high.

With unprotected sun, we get sores on our head, bald patches, rashes on our faces, extreme fatigue and aching joints. And maybe more.

Types of UV Rays

UV-A and UV-B are the types of ultraviolet rays that that get through the ozone layer to reach Earth.

UV-A rays are longer and can get deep into the middle layer of the skin.

UV-A can trigger cutaneous lupus.

UV-A  can cause flares of existing systemic lupus.

(The is the one I have:systemic lupus).

UV-B  rays are shorter and can damage DNA and cells.

UV reactions can take many forms.

 UV Photosensitivity 

Photosensitivity could mean a systemic response, like feeling sick, having chills, fever, even joint pain, or that you sunburn more easily.

Sometimes, though, the photosensitivity reaction may not be visible.

What We Look For In A Sunscreen

We use the best sunscreen out there. We don’t care how much it costs.

This La Roche-Posay Anthelios 60 is the only sunscreen that my lupus dermatologist will recommend. It is broad spectrum, has mexoryl base, and UVB and UVA. This meets the requirements for lupus sun screen.

In Canada

In United States

Sunscreen Should Not Be Your Only Protection

But sunscreen shouldn’t be your only protection. Physicians  say it’s important to seek shade when you can, and wear at least a 3-inch brimmed hat and clothing with an SPF of 50 built into the fabric.

In this article “7 Wearable Ways to Protect Yourself Outdoors” , Lupus Resources organization tells us that UPF 50  allows 1/50th of the sun’s UV rays to reach us.

Why I Buy Only Columbia 

Columbia has UPF 50 hats, shirts, neck gators, and pants.

This company patents its new age materials that keep you cool (omni cool technology) and protected from the sun.

Columbia’s mission is to help you stay outside longer.

The Best  Sun Blocking Hat That Stays On Your Head When The Wind Blows

At the top of my gear list is my Columbia hat. It has a draw string to prevent it from blowing off my head. The hat is light and has breathing mesh, so no hot head. It bunches up in my tiny backpack and keeps it’s shape. I have several.

Here is the lastest Columbia hat that I just ordered. I like the name: The Forester.

Neck Gaitors Are Versatile

These are great for feeling protected outdoors. Neck gaitors provide protection from cold during early morning walks and UV rays when the sun is out. It provides both cooling and warming for your neck – depending on the weather. And it can turn into a headband or face mask. If it is really hot I wet the gaitor and that really keeps me cool. I have several.

I live in these shirts. They are 50 SPF to block UV rays. The shirt is light and keeps the sweat away from your body (omni-wick). I have several.

Here are the Columbia pants I love.

And these too

When we know we are protected from the sun’s damaging rays, we can head outside with our sunscreen in our backpack/purse/pocket. We know we are covered. We know we are safe. Then we can start to relax. And have some fun.

Gentle Outside Adventure

When we have sun protection, we are free to explore the outdoors. Anytime, anywhere. And we don’t have to go far away to do this. Just getting outside is a form of gentle adventure.

Being outside gives us vigor. Trees provide health benefits. And the fun and beauty of it all  is captured in a recent post from sagebrushfarmnv.com about finding adventure outside.  They found beauty, fun, a waterfall, a new trail while they were breathing in the health benefits of tree aerosols.

On average we spend 93% of our time indoors. There are so many things keeping us inside including employment, screens, childcare, cooking, cleaning, and our emotions.

To help each other get outside even for a few minutes every day please  join fb group Ditch Inside for Outside Tribe  link here. 

I look forward to meeting you there.

Until the next time, take a deep breath, “Healthy Tree, Healthy Me”

Verla