The Things I Hide About my "Invisible" Disease Lupus - Part 1

Lupus and other auto-immune diseases are often called "invisible" diseases because for the most part you can't look at someone and see that they have Lupus. In fact I actually just call my list of conditions "Lupus" because that's the only disease most people have heard of, even if they aren't sure what it is. I'll save my list of conditions for another time.

I was thinking about the whole idea of an "invisible" disease and realized that actually there are a lot of things that are invisible because I intentionally hide them. Since this is Lupus Awareness Month, I've decided to "show" some of the things I hide about my "invisible" disease and provide some information no what I'm showing you via information from & links to The Lupus Foundation website. I'm doing this in parts...so I can change my mind about what pictures I want to post...LOL. Okay so here I go.

The Beautiful Butterfly
Usually the one thing people have heard about Lupus is something about a "butterfly" rash on the face. It's not quite as pretty as a butterfly, believe me. I thank God for MAC & the invention of concealer. What the heck does a butterfly rash look like? Well one looks like this.

I look like I'm blushing all the time. You may notice the weird thing I'm doing
with my mouth & the dark circles under my eyes, those are a topic for another post.

Right Side Close-Up

Left Side Close-Up. Lovely broken blood vessels that look like red strings.

Up My Nose Close-Up

Okay, so that's a start. It really doesn't look like a butterfly to me, mine is kind of more all over. This is actually my "rash" at it's best as it's been improved by steroids and I haven't seen the sun in a few years now. What's the big deal with a red face?

This is actually Acute Cutaneous Lupus Lesions:
"Acute cutaneous lupus lesions occur when your systemic lupus is active. The most typical form of acute cutaneous lupus is a malar rash -- flattened areas of red skin on your face that resemble a sunburn. When the rash appears on both cheeks and across the bridge of the nose in the shape of a butterfly, it is known as the "butterfly rash." However, the rash can also appear on your arms, legs, and body. These lesions tend to be very photosensitive. They typically do not produce scarring, although changes in skin color may occur."

Okay, so I started with something simple, easy to hide too. A little make-up and concealer and the red is gone, but this means that I have to wear make-up all the time if I don't want to look perpetually sunburned, blushing, like I'm having a hot-flash, or a number of other things that people have asked me if I am suffering from when they see this, particularly when it's more "active".

Psychologically for me this one is difficult. This is my face. Aside from make-up you can't really hide your face. I actually tried to have laser treatment on my face in hopes of lessening the redness. I went to a very well known dermatologist in Pasadena and explained all of my medical conditions and medications as I was afraid that certain medications that thin my skin and make me sensitive may preclude having laser treatment. I was assured that it was fine and so started the zapping.

They used this square thing and went portion by portion. I was told by the woman actually doing the zapping that it was not supposed to hurt really and it didn't at first. She moved from the left side of my face up and around my forehead. It started to sting. She then started down the right side of my face and it started to really sting. I saw the lady's face who was giving me the treatment, she looked concerned. One more zap and I screamed in pain, her expression turned to fear, & she ran out of the room to get the doctor. I sat up and looked in the mirror, my face was red of course, but within a minute blisters started forming on the right side of my jaw.

There was chaos in the office as everyone came in to see "the girl with blisters on her face". I was told this had never happened in 15 or 20 years and blah, blah, blah. Ice packs were brought out and salves and other stuff I'm not even sure what it was. The lady who had been doing the zapping was clearly holding back tears and looking to the doctor for some explanation. As usual with any and all odd reactions, symptoms, test results, etc. the doctor came up with the grand explanation..."It must be the Lupus" (umm...hello, I told you about the Lupus BEFORE...so this wouldn't happen). I was sent home with a grocery bag full of stuff to put on the blisters which had gotten even bigger in the chaos. The doctor bandaged up my face & off I went with my grocery bag. The lady who zapped me called twice a day for about a week to "check" on me (make sure I wasn't going to sue her) and told me over and over again how this had never happened before and she just couldn't understand it.

The truth was, I COULD understand it, because it probably was the Lupus.

So, I ended up with 2 rectangular (the zapper thingy) shaped scars on my face, the are very light and relatively unnoticeable (so I'm told). Of course, I can see them just fine and to me they are these huge, glaring, reminders of my disease, my vanity, that I'm not as pretty as I used to be, that I can't fix this problem, that some doctors are idiots, that you should trust your gut (I had a feeling it might not work, that's why I asked so many questions, told him about every condition, & every medication), and that I am Living With Lupus (and a bunch of other stuff). 

This show and tell is tame. So my next installment should be something more interesting...how about "The Buffalo Hump"? See you for Part 2.

Musings From the Past-6/2009

6/2009 update - Up & Down, Up & Down...that's the best way to describe my medical conditions...it's annoying. I never know if it's going to be a good day or not...my calendar revolves around doctor's appointments, my daughter is getting (if not already) too heavy for me to pick up), a simple trip to the Renaissance Faire (for which I rested up for for days, even spending the day before in bed) resulted in a tiring but fun day followed by a horrible reaction to the sun which went systemic. I was threatened with IV Infusion and spending time in the hospital. And now I'm NEVER allowed any prolonged or really ANY sun exposure :-(

Whine, Whine, Whine! LOL

This is me and my manservant/husband. My dress without the petticoat underneath. It looks so much better with the petticoat (by the way, I made that dress & my husband's shirt myself), my face looks so "moon faced" (aka: round/fat) here, a side effect of large doses of Prednisone. 24 hours after this picture was taken, I'd be flat on my back in bed with giant blisters all over my shoulders (the one place I forgot to put sunscreen and wasn't covered up). The sun caused a flare which went wildly systemic and I was down for about 3 weeks to a month...just from the darn sun...for gosh sakes, I live in California! I can't get away from the sun. The Faire was fun. I haven't been since, I'm too scared to go. My dress is somewhat on display on a dressmakers figure (a mannequin who's dimensions you can change). I think next to my wedding dress, I loved wearing this dress second, but with the huge petticoat to make the skirt fill out like a true Princess's should.