Friday, July 26, 2019

The sun is not my friend. So let the shopping commence.

Dang. They're back.

My spots. Or, more accurately, the lesions from my Subacute Cutaneous Lupus Erythematosis.

After most of my neutrophils went missing last month, Dr. Young Guy discontinued my immunosuppressant meds and we adopted a wait-and-see king of strategy moving forward.

We're waiting to see if  a couple of things happen: first and most importantly, we're watching to see if my neutrophils or any of my other blood counts drop again. This would indicate that something more than a drug side effect was to blame.

Secondly, we're waiting to see what this old autoimmune body does in response to the absence of these medications. And, after five weeks, BICJ and I are annoyed. Actually we're downright crabby. Because a few things are making their unwelcome reappearance.

I definitely am beginning to feel the dreaded malaise creeping back -- that feeling as though I'm teetering on the edge of getting an infection. You know how that feels? As though you're running a temp (even though you're not) and my body aches everywhere. Ah, I remember this feeling well. I've experienced it ever since my first flare of disease activity back in 2003.

And, my rash is slowly making its appearance again. I'm spotty and dotty on my face, my shoulders, chest, back, and legs. There's far fewer lesions than I've had before, but they are definitely there and it seems that they are inviting their friends. Grr.

Dr. Young Guy has advised me to take my sun protection very, very seriously since exposure to UV light found in sunshine seems to raise autoimmune disease activity significantly. And, though I always have been careful, lately I've added a few extra tools in my arsenal in sun protection.

So I slather high SPF sunscreen everywhere first thing in the morning, and reapply it later in the day on my face and arms. After which I put on sun protective clothing.

Did YOU know that a regular cotton t-shirt, even if it is long sleeved, does not provide excellent UV protection? I didn't. But now I do after reading this, found here

A typical white t-shirt has a sun protection factor around 7, and this drops to about 3 when it is wet. - Carolyn Vachani RN, MSN, AOCN

My goodness. This informational nugget led me to the one and only pleasurable facet found in this whole experience: shopping. Yes. Because of my disease (insert poor me dramatic gesture here) I have been forced, yes FORCED, to increase my wardrobe considerably in the interests of keeping my autoimmune activity at bay.

Sigh. One does what one must.

I've discovered something very interesting about myself as I've acquainted myself with the various brands that specialize in sun protection: I love to dress like a golfer. I think long sleeved, lightweight, colorful golf polos are amazing. AND there's a tennis player lurking inside me as well. Wearing a crisp white stretchy top. With pants that bend and stretch where I do and a pair of comfy shoes.

Who knew?

Not me. Especially since I neither like or excel in either sport. Well.....I do have to concede that driving around a green manicured golf course in one of their carts is a lot of fun. And one has to appreciate a sport in which a drinks concession cart toodles its way around too. Nice. I think it would especially enjoyable if one was sporting a snappy high SPF golfing outfit and sipping an adult beverage.

Just don't put a tennis racket or a golf club in my hands, for heaven's sake.

So here are a few of my favorite finds so far.

Marcus loves sitting in the shade with his grandma. I love his little orange hat. 

I love love love the shirts made by Coolibar.

I wish these came with a guarantee that once I slipped it on I'd look like this gal.

I got mine on Amazon; I don't get any revenue should you choose one of these beauties BTW.

I've also discovered UV Skinz, and San Soleil. Both manufacture wonderful UPF 50+ clothing. But they're pricey. I sprung for full price for my first shirt then wore it continuously until I found more on sale.

Do you have a favorite brand of sun protection clothing?


Anonymous said...

Hi Julia. I have been a long time lurker of your blog (!) and found it very informative when I was first diagnosed with lupus and sjogren's in 2014. I also like Coolibar clothes and have had them shippped over to me in Australia. Slightly ironic when in Aus we have one of the highest skin cancer rates in the world!
I wondered if you had heard of this product Which I have also had shipped over to Aus (usually buying on Ebay. I have found it useful for treating my cotton T shirts etc.
I found it recommended by Dr Thomas in his Lupus Encyclopaedia (a very good read if you haven't seen it)
Hope that helps :)

Julia Oleinik said...

Hi Nicola,
I have not heard of this product. Thanks for the tip!