Just Out of My Grasp - My Personal Journey with SLE

Ahoy Fellow Fathomers, I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I found out on June 19, 2013 the reason for many of my ongoing health problems is because I have systemic lupus, also known as SLE.

Thank you for listening, each week I will have a new installment chronicling my journey. Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.

Hugs for today …

The second type of lupus is:

Cutaneous Lupus Erythematosus

“Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.”

For a few softball seasons, I sat down from a mother who always had an umbrella present when the sun was shining. She had a beautiful dark complexion, yet, seemed obvious she wasn’t tanning to achieve her tone. I never asked because it really was none of my business why she always sat under the shade of an umbrella during games. I myself get too wound up watching my daughter play and jump around quite a bit, sometimes pacing.

However, after I received the diagnosis of SLE, in talking with fellow moms on the team, I found out she also had lupus. She has the type of lupus that becomes aggravated with sun exposure. Something else clicked for me at that moment.

Last summer I was working in the yard and got a sunburn on my lower back. I didn’t think much of it except for the usual burn and stinging and chastising myself I was stupid enough to burn my pale skin again. On day 3 of recovery, IT HIT- the ITCH. I sat at my work computer, minding my own business when I felt a twinge just beneath the skin in one spot of my lower back. Like some little alien was inside of my poking me from the inside out with an ice pick.

Seriously, it was THAT bad.

I grabbed my metal letter opener and began to dig into my skin on my lower back. Arms contorted backward at odd angles, I could not reach every offending spot at once. I jumped up and like a monkey against a palm tree, I connected every possible inch of my lower back against the edge of my cubicle and slid side to side and up and down in an attempt to allay the burning assault.

When I realized life wasn’t getting any better and all reason went out the window, I approached my supervisor, letter opener in hand, still scratching, and said I had to GO. Blinded to anything else but the purchase of some Solarcaine and aloe vera gel. Driving through the rain in city traffic, I alternated between crying and cursing all the way to the Wal-Mart 20 miles away from my job. I ran like a mad woman to the first aid supplies, back to the self-checkout and skipping a bag, almost shed my shirt in the store to apply what I hoped would be relief.

NOPE.

Long story short, I ended up itching, braless, wearing a loose tank, clutching a letter opener in the emergency room, clawing at my back and practically howling like a feral cat with mange. The doctor had no good advice and feeling sorry for me actually DID NOT charge me for the visit because there was nothing he could do. Time had to literally heal this wound. Oh, and he recommended Benadryl.

I took lots of Benadryl.

Suffice it to say I no longer regard the sun with such little respect. Never again wanting to experience the pain of corrosive inside out hives again, I use an umbrella now and sunscreen regularly.

I also have many sun damage spots and the discoid rashes of my own. I visited a dermatologist for a suspicious spot on my back, he performed a biopsy and sent to the lab and it thankfully came back benign. These many new strange rashes and lesions are common for me and and another symptom of my lupus.

www.lupus.org