Lupus and Sunshine

It is quiet this morning in the cozy cottage.

So quiet that the only sounds are the ticking wall clock and the lone song of a brave bird outside.

The bird must be confused.

There is snow everywhere.

But, I'm grateful for that confused bird.

There’s a whiff of spring.

I feel such a longing to be out in the sun.

I turn on the computer, click to my favorite web cam:

Ocean City Maryland Boardwalk Cam

The sun is shining there.

I feel like an astronaut peeking at an unattainable territory through a tiny porthole.

I can't be in the sunshine.

Lupus hates sun.

My lupus also hates fluorescent lighting.

I feel that I have become a mole.

Before lupus I would have been outside on that Boardwalk all day, on the beach, in the water with my boogie board, splashing and playing with my guys, sunning on the beach and basking in the sunlight with a really good summer read.

I haven't adjusted to all the losses that are adding up since diagnosis.

I can't afford to visit that sad place in my heart too often.

That could lead to despair.

I am grateful that I have lived (and will continue to do so) a very full life. I threw myself into the ocean. I gloried in that sunshine and I have such an enormous amount of beautiful memories of the sun.

That care free time now feels like an affair that ended on the best of terms.

No regrets.

I had my time in the sun.

Life is too short...

if there is something you've been meaning to do...

best get at it...

You don’t know if there will be sunshine tomorrow.

TODAY: July 2011: Once again, I was pretty narrow visioned about being newly diagnosed with lupus and thinking I was encountering things for the first time. I had completely forgotten one of our trips to Ocean City before I was diagnosed with lupus. My whole scalp became a mess of flaking skin with sores and hair loss. My face took on a bizarre two toned cast in blotches. Some blotches a deep dark tan, and other blotches pale white. I just shoved a hat on my head, covered my face in make-up and tried to hide the problem as best as I could. I still carry the scarring from that trip.

I didn't know my boogy boarding days were at an end. With the lupus diagnosis came the evidence that my joints were calcifying, in particular, one of my shoulder joints.

I think the biggest difference in avoiding lupus triggers is that I am a parent now. Risks that I took years ago became unthinkable as a mom. With the confirmed diagnosis of lupus, I did not want to step out of line with my treatment regimen (which included staying out of the sun) because I did not want to do anything that could make my health even worse.

We did take a trip back to Ocean City about 4 years after I wrote this entry. It was nothing short of a disaster. I was not ready, I was still in the last throes of the depression.

 I got quite ill from just the road trip and the heat. I was so ill that even managing to walk from the condo to the beach was unbearable for me physically and more so, emotionally. The trip re-opened the wound. I tried to just walk a few blocks to a paperback book store, and had to turn around and head back to the condo. The heat triggered mental confusion and I had a hard time finding my way back. I was angry and crying and my poor husband had no idea why. I was not emotionally strong enough, yet, to rally from the disappointment.

But, the best thing about that last trip is what it taught me. I learned during that week to enjoy the more simple things that a vacation gives. I sat in the shade of the balcony, slathered in sun block, quietly reading and just chatting with my husband. My son and I enjoyed just hanging around the condo. I learned that vacation is for enjoying each other... to re-create not wreck-reate.