Showing posts with label Life with Lupus. Show all posts
Showing posts with label Life with Lupus. Show all posts

Monday, December 10, 2018

Life with Lupus: Light and Pericarditis


I thought to check in and share what the latest experiences have been regarding light in my life of lupus. As the days grow shorter, I celebrate the darkness. Less light makes life so much easier. Exposure to UVA and UVB can jump start a lupus flare.

On the downside, I find this time of year with the slant of the sun, glare increases: off the dining table, the tile, granite. Ha! Even Christmas trees are covered in a light that glares.

Thinking that the glare is the trigger, I was able to get prescription sunglasses. Working with them on in front of my laptop and using less precaution in the house, not darting through bright rooms, still resulted in a flare. There's the possibility of some other variable in the mix, but my gut is that sunglasses, alone, are not enough to allow me to sit in the light inside our house. I haven't been able to find research on such specific qualities of light.

Image result for pericarditis


Aside from sitting in a dark room for a couple days to recover from flares, my latest lupus manifestation is pericarditis. A $15,000 ER visit and further followup tests gave me this diagnosis. Inflammation triggers fluid in the heart sac which very much mirrors a heart attack. The fluid and pain eventually pass, in that case after 3 hours. I've read it can linger days or weeks. Scarring often results, which exacerbates the condition. So there's my new symptom that warns me to escape the light, work less, and breathe. Since the hospital visit, I've only had short episodes.

One note: even with insurance, many hospitals will adjust their fees with financial aid according to your income. It's worth submitting the paperwork, often found online.

The first image above is my collage from the former site, Polyvore, and the second is linked to the Mayo Clinic source.

While I appreciate the dark, I think of those struggling with depression in the absence of sunlight this December. Blessings on you.

Monday, February 4, 2013

Life with Lupus: February, 2013


Logo from this blog.

An update! 25 days into my second flare, the prednisone has been more taxing than in the first 2012 episode. As it rattles through me, shutting down my immune system, I'm weak. My friend said if a gust of wind caught my dress, I'd float away.

So here are shout outs for all those tying me down. To my husband, who deals with me being awake until 3 am and then starting the day at 6. He is patient to sleep with the light on, the bath running, the pages rustling. And he hugs me when I'm crying for no good prednisone reason.

To my eldest daughter, who picks up my duties and brings me fabbity food of fun. To my youngest who thinks of me from afar and stops to text.

To my friends and family, who message, cook, send gifties, and spend their time sitting beside me in my bedroom.

To my brother who is flying out to see me!

To my doctors who listen to me and ask what I would like to do.

I'm reading a fascinating book called Shakespeare's Tremor and Orwell's Cough, the Medical Lives of Famous Authors by John J. Ross. Within the section on Herman Melville, who suffered bipolar disorder, post-traumatic stress disorder, and ankylosing spondylitis, is this quote concerning his ability to still write in the midst of his illness:

"it demonstrates how the love, support, and infinite patience of spouses, family, and friends can modify the course of chronic illness for the better."

Thank you for helping me! xox