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Saturday, May 31, 2014

Rosy Cheeks And All

I have had rosacea for a number of years. I remember hearing about it years before I got it, and not much of what I heard before or after my diagnosis was very informative. Since lupus and rosacea both cause facial skin redness, there were occasions when I was working in retail and customers would ask me if I had rosacea. The most memorable was a woman who was one of three or four sisters, some of whom had rosacea. They had a tough time remembering the name of the ailment, though, and created a way to help themselves remember. Which is why she looked at me and asked me if I had Rosie O'Shea. I thought it was a clever way to remember the name, so it sort of stuck with me.

Naturally, since I already had a red face, I ended up with rosacea as well. I have read that it isn't uncommon for people with lupus to have secondary diseases that may or may not be immune-system related. Among these are fibromayalgia and rosacea, both of which I have. When I was diagnosed, and even before, all that I had ever heard was that it was red skin and acne. I knew that some people are treated with antibiotics, and I had also heard about laser treatments, but that was about it. When I asked at my doctor's office about going on antibiotics, they were against it because of the potential for super-infections. I was given a prescription for a topical antibiotic, but when I went to get it filled, it was seventy-five dollars for a teeny-tiny tube, which just wasn't available in the budget. So I just dealt with it. 

Just like with lupus, having rosacea makes people pay attention to your face for all of the wrong reasons. Having never been the prettiest girl on the block, I experienced none of the vanity crushing that might have come from having my beauty marred by Miss Rosie O'Shea. But all of my life, until lupus came into the picture, I had really lovely skin. I didn't deal with horrible acne or uneven skintones or such. Yes, I had oily teenage skin and some pimples, but never more than a few. With rosacea, I have found myself, at this mature stage of my life, with all of the skin problems I never had before.

Yes, like with the lupus, my facial skin is red. But now, it is even redder. And it is covered with areas that are even more red, and full of blemishes. To add something interesting to the mix, in between the blemishes there are often patches of dry, flaky skin. It's almost like my skin has no idea what it wants to do, so it just does a little bit of everything. When I experience physical or mental stress, the rosacea flares up just like lupus can. (Although I didn't know this was the case until just recently.) For example, when I went to Europe, my face turned even more red and broken out. I thought it was because of the humidity and warm temperatures. But when I was hospitalized last December for vertigo, I began to suspect that there was more to it than that. When I came home, my face was covered with literally hundreds of blemishes, most of which were bleeding. I washed them off in the shower, but by the afternoon, there was another crop, and by bedtime my face looked like it had been hit with buckshot. That will make anyone feel hideous, even if they've never been a beauty.

Trent had a special treatment in January to help prevent future facial carcinomas. Transplant patients have a tendency to get facial skin cancers, and this treatment helped rid his face of precancerous cells. He was supposed to go for a followup in February, but both of us came down with an intestinal bug, so he had to reschedule for the first available time, which ended up being in April. First the MA checked all of his paperwork and took his vitals, commenting on how wonderful his skin looked. When she left, I told Trent that I wished we could afford a laser treatment for my face, because I was just tired of how awful my skin looked. A resident checked him out, and was soon followed by the doctor. She always recognizes us when she comes in, and her face lights up, which makes us feel really good. Trent had a little spot on his scalp, an area not treated in January, that they wanted to remove and biopsy.

When Doctor Pacheco returned to the room in less than a minute, we were both surprised that a treatment room was available so quickly. She looked at Trent and told him that it wasn't time for his procedure; she wanted to speak with me. As luck would have it, the hospital was going to start using a new laser treatment system in May, and needed a demo patient that had rosacea. I was thrilled. Seriously, I felt like a kid at Christmas. I was going to be getting a free laser treatment! The treatment was only for redness, but she would be able to prescribe antibiotics after I became her patient. I was even more thrilled.

During the few weeks between then and the treatment, I got online and did a couple of searches for information about rosacea. And started to learn a lot of things. First off, rosacea is not acne. It does not respond to acne treatments or medications. I know this to be true, because I tried to use acne treatment/cleansing wipes on my face. All that happened was that my skin swelled up a bit and then peeled. And the blemishes were still there. Apparently nobody really knows how rosacea works or what it really is. But there are the blemishes, and the redness which is caused by there being too many blood vessels close to the surface of the skin, which is called telangiectasia, which is what the laser treated. But there were other things that I was not aware of, like people having triggers that will make their symptoms worse.

Another thing that I learned is that untreated rosacea can cause permanent thickening of the skin on the nose. This redness and thickening is like the kind we associate with heavy drinkers who get a red, bulbous nose later in their life. When I read this, I thought, "Oh, a nose like W.C. Fields." And guess what? Mr. Fields, who was indeed a drinker, also had rosacea. So his nose wasn't red from the booze, it was permanent disfiguring from rosacea. The next day I happened to spot some photographs of myself from about fifteen years ago, and there is a bit of a change in the size and shape of my nose. This is not as common in women as it is in men. We do like to say that if it's uncommon, it'll happen in our house!

On my next search, though, I learned something that sort of stunned and scared me. From time to time I get this inflammation at the base of my eyelashes, with little bumps and scales. My eye doctor said it was probably an inflammation in the follicle of the eyelash, so I chalked it up to luck and just dealt with it as it happened. Then I read that this is actually a symptom of rosacea. It can cause burning, irritation, and bloodshot eyes, along with the feeling of having something in your eyes a lot of the time. Left untreated, it can possibly cause permanent changes to your vision. That blew my little mind, let me tell you.

So I went and had a free laser treatment, and not just for reasons of vanity. It wasn't horribly painful, but the next day my face was so swollen that my lower eyelashes were resting on my eyeballs. And if I tipped my chin down just a tiny bit, it was resting on my chest. Twelve days after the treatment, there is still a bit of swelling, but not a great deal. And although I will always have a blush due to living with lupus, Trent and I, and our friends, think that it's noticeably less red, and more like pink. And my doctor did prescribe antibiotics. But the mail-order pharmacy, which has the exact antibiotic listed on their "90 day supply for $10" list, wanted to charge me more than $200 for a one-month supply because we haven't reached our deductible yet. (Don't get me started on the costs of medicines!) So I cancelled the prescription because we really have grown attached to eating on a daily basis around here. I know, some people are so weak and selfish!

So, after all is said and done, I still have rosy cheeks, but maybe not so red as they were before. I still have breakouts, but will discuss a more reasonably priced treatment plan with the doctor when I go in for a followup visit. I'm hopeful that in a few weeks' time, I will feel like I am back in my old skin again. I'll look, feel, and be a bit healthier, even though with lupus it will be rosy cheeks and all!

A shot of me just before treatment:

And five days after treatment. Still not photogenic, but that's life!