Sunday, March 02, 2008

My polka dot problem...

This is pretty much just me complaining and describing a personal problem that I'm having. I doubt very much that I'm going to relate it back to anything, so if you're not interested in reading about my personal life, I'd skip this one.

I've taken to joking a little bit that I'm going to bring back spots, but I have what is known as a "skin condition". Say hello to my right and left legs. Those lovely red spots are called plaques, and are caused by psoriasis. If my derm's reaction is any indication, I've got at least a moderately seriously case. The words "Oh, that's not fair" have left his mouth on multiple visits. Sadly, his sympathy has done little to ease my discomfort. As you can see, it's kind of all over my legs, particularly my lower legs. It's also covering my torso, arms, face and head. Even on and in my ears. Which is to say, pretty much my whole body. I sort of think I'm lucky, in a way, that it's worse on my legs than anywhere else. And, really, it could still be worse, even there. Unluckily, it's second worst on my head and face.

If you don't have psoriasis, I think it's generally considered a relatively benign thing to have. Relatively speaking, of course. It's not going to kill me, for example. As far as I know, it's not going to cause any major organ damage, either. It's not going to attack my brain. It's not going to do... well... much of anything, except cause those rather bright red spots to appear all over my body.

Did I mention that they burn? No? Oh, well. They burn, too. They itch almost constantly, but I use moisturizing lotion to try to cut back on the itching, and that helps a lot. Periodically, though, I experience what I can only describe as an intense burning sensation. Like my leg is covered in acid. While that comes and goes, it's most intense usually when I'm getting a little tired, and I'm preparing for bed. A few times, the pain has been intense enough to give me spasms. Which can make it difficult to fall asleep, to say the least.

Another interesting fact about psoriasis: it's exacerbated by stress.

Which is awesome, because, as you might imagine, having itchy, burning, bright red splotches all over you body, including your face, can be a fairly stressful situation. Particularly since, and this is really awesome, too (which is to say, distinctly not), they become dry and flake off. The skin on the spots gets very dry, and almost leathery in texture, or sometimes raised and coarse. Then it flakes and peels off, almost like a sunburn. Only, this happens on a daily basis. And has a tendancy to look like dandruff, when it comes off my scalp.

See, psoriasis is basically the body producing skin at an accelerated rate. Normal skin cells mature and fall off the body about every 28 to 30 days. Psoriatic skin cell take only 3 days to mature and move to the surface. Then, instead of being shed off, they pile up and form those bright splotches. Which then crack and flake, since they're mostly formed by piles of irritated dying and dead skin cells.

It was bad enough when it was just my legs that were afflicted. It was painful, and annoying to be constantly putting on lotions and trying to resist the urge to scratch. But, as it's spread over the rest of my body, I've also had to start dealing with other people's reactions. Because, uh... people stare. I've taken to wearing a hat, even while I'm indoors, unless I have to to take it off, because it helps cover up the flaking skin on my scalp and along my hairline (Oh, did I also mention psoriasis can lead to extensive hair loss? No? It can lead to extensive hair loss), but it's not like I can hide my face. I've let my beard grow in, which helps a little, but I think that's mostly psychological.

My friends and co-workers know about it, but I'm not going to stop and tell every random stranger that gives me weird looks when I'm trying to shop "Oh, yeah, I'm not diseased or dirty. Well, I mean, I guess I am sort of diseased, but it's a genetic skin condition called psoriasis." Nor would I want to.

If you do any research on psoriasis, one of the things you'll discover is that there's lots of talk about the link between depression and psoriasis. Or how psoriasis sufferers go through a loss of self-esteem. Well, duh. You know why? Because people tend to be both fascinated and repulsed. The worst is when I'm having a good day, and it's not itching too much, and I manage to forget about it for a little while, and I'll go out, and someone will look at me in that way that makes it clear that they're... I don't know exactly what they're thinking... but they're staring at me. And I don't know whether to be angry, or offended, or embarrassed, and I mostly just want to go hide.

I've been ruminating on talking about this for a while, now. I'm sure I could relate it to all kinds of different things, but, hell... even while I'm sitting here looking at that picture on my blog, and thinking about how depressing it is that I pretty much look nothing like that now because, yeah, I'm fucking polka-dotted, I also feel terribly guilty. Because the thing is, compared to the other two men in my immediate family, I won the genetic jackpot. All three of us suffer from a chronic, incurable ailment. At least mine is mostly cosmetic. MS and seizures seem a lot more significant by comparison.

Anyway, there it is. I don't know what else to say. So I won't.

17 comments:

J said...

We love you Roy and are sorry you are suffering so.
If there is anything we can do, let me know. I did pull an ad out of one of our magazines a few weeks back that has some awesome before and after shots. I thought you might want to give it a try.

Bach-us said...

There is no reason to feel guilty, though, because nobody wants to have a disease, no matter how it compares to others in terms of seriousness. So it makes sense that you wouldn't want to be sick, and at the same time you recognize that others have it worse.

I know it's probably not much comfort, but you sound like you're handling it very well.

EG said...

My sympathies. I have a friend with quite severe psoriasis, and when it flares up, it just seems like there's no good solution beyond waiting for it to go away. Which is a whole lot of no fun.

But seconded. Other people being worse off doesn't make your problems go away, so I think you should go ahead and resent this. It's a pain in the ass and it really isn't fair.

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Nique said...

Can you take comfort in the fact that you've made me feel better about my skin issues? I have eczema on my hands, which sucks, but at least it's not as bad as psoriasis.
I've had eczema my whole life and I can deal with the pain just fine, because I'm so used to it, but I guess one just never gets used to the reactions of others. My hands are basically covered in bloody, pussy sores. It's not very attractive, but you'd think people would have the courtesy to mind their own business. My boss actually said to me in a disgusted voice "what happened to your hands?". I wanted to say "what happened to your tact?" But she's my boss so I told the truth. She was just relieved to know it wasn't a work related injury.

Sometimes I feel like rubbing my hands in people's faces when they stare, just to freak them out.

Katy Tukcer said...

I'm sorry to hear that you're in pain and not feeling well.

I'm currently waiting to see a dermatologist as I get sores on my hands and chest (very itchy) during the summer. Made my trip to Greece a little less celebratory for sure. Though these things may not be the end of the world, they freakin' SUCK when you have to deal with them a lot. Also, people staring makes nothing better.

Spend a day in bed with cookies and a good book. That's what I do when allergies to the world etc get me down (ie today)!

Mark said...

I'm sorry to hear the problems this is causing you. Is it something that flares up and then goes (mostly) away, or is it a chronic thing? Did this just start happening recently?

I have a bad case of scoliosis which required me to wear a cumbersome back brace all throughout high school. It was under my clothes, but I moved awkwardly and obviously high school is not a great time to be going through this sort of thing. Anyway, the point is that I know what you mean about the feeling guilty thing, because what did I really have to complain about? Other folks have to deal with so much more... But in the end, you have to deal with your situation as best you can, and I think it's certainly ok to be frustrated and upset about it.

Anyway, best of luck...

Roy said...

Thanks for the kind words, all!

nique: I know what you mean. People can be really tactless about it. I don't mind when someone I know asks me politely and with concern for my well-being, but the people who stare or who act disgusted... it's like, what? You think I don't notice what my skin looks like? I think if someone asked me the way your boss did, I'd be sorely tempted to act completely shocked "Wait... what's wrong with me... OHMYGOD! MY HANDS!" Which is probably an inappropriate response to an inappropriate question.

Which is to say, I'm sorry about your hands, and that you also get shitty responses to your condition.

mark: It's hard to say right now. It flared up back in October or November, and it's sort of been getting slowly worse with time. My hope is that I plateau soon, and that I can find a treatment that works to start it going into remission, but it's considered a chronic disorder. If I'm lucky, it'll go into remission. If not... well. Yeah. I'm trying to avoid the harsher treatments, if possible. There's what they call the ladder of treatment. The lower rungs are where I'm at right now. The problem is that they're not the most effective treatments. The benefit is that they're not toxic. The more effective treatments tend to have the unfortunate side-effect of being highly toxic.

I wonder if most people who have a disorder like this feel guilty about it in some way?

Nique said...

I've actually never felt guilty about any of my conditions (aside from the eczema, I also have dysmenorrhea, spherocytosis anemia of which the main side effect is low energy/fatigue and myopia so severe that it is physically painful to see. I can't wear contacts because I get eye infections and my glasses are so thick {yes, yes I do have the "thin" lenses, so no, you are not the first genius to suggest I get them} that they are quite painful to wear, as in they hurt my ears and nose. Also I get chronic headaches from straining to see, but can't afford to get new glasses each time my eye sight deteriorates. Oh, laser eye surgery you suggest? Wow, I can't believe I never thought of that, except I did, and it's not effective for people who actually need it. *please note the bitterness in that rant is not directed at you Roy, but at the idiots who think they have the brilliant solutions to my problems.)

ANYWAY! My point is that I don't feel guilty because I've never been the type to feel sorry for myself. (Previous rant aside ;) I was raised with a "suck it up" attitude. In my family if you get hurt you're expected to fight through it because pain makes you stronger. I think this is a healthy attitude because I don't pity other people who have it worse and I don't pity myself.

If anything I feel sorry for the poor schmucks who have never faced any adversity in their entire lives. Because those people have no character. They tend to be self-absorbed and ignorant because they don't know what it's like to suffer. And I'd rather be me than an asshole with an entitlement complex.

The Snobographer said...

I have facial herpes, so I get cold sores around my mouth sometimes. Many a schmuck has pointed out to me, loudly, and in front of a rapt audience, that this is, in fact HERPES! Some have even ignored my withering glares to continue this line of conversation by asking me if I ever get it downstairs.
I also once had a heinous boyfriend point out to me that a particularly large and painful cold sore I was suffering through was, "not very hot, babe" as if it was a poor wardrobe choice on my part.

Conclusion: People are stupid.

EG said...

Oh, yes. The cold sore jerks. When I told my ex-boyfriend that I got cold sores from time to time (I'm quite scrupulous about avoiding any risk of transmission at all when I even think I feel one coming on), he flipped (I was in my early 20s, he was in his late 20s)--downloaded reams of information from the internet to give to me (gee, thanks, honey...I knew nothing about it until you went on the internet), informed me that it was a form of herpes (you don't say?) and asked me if I'd been "tested" (???? you don't get tested, I told him--you just get a cold sore). I was pissed at him for weeks. And, I should point out, we were together for 2 years and I never gave it to him.

projektleiterin said...

You seem to be quite hard on yourself, like a lot of people. We show understanding for other people's problems, but are often so unforgiving with ourselves. We could stop worrying if we take ourselves too seriously and instead save a little bit of self-pity for us and spend the time we would spend worrying if that was ok on doing something more useful for someone else.

By the way, my doctor told me I had neurodermitis, but it's not one of the bad cases. I just sometimes get get ekzemas here or there or rashes. I know how the itching feels and how uncomfortable it can be to be stuck in your own skin and I only have small problems with the skin on my face. I think you're handling a difficult problem quite well.

sherye said...

terribly sorry for what you've been going through :( My boyfriend of 4 years has actually been getting spots similar to those on his arms and we could not figure out what they might be, he's going to the doctors soon to figure it out but I think this might be it. I read that it occurs between the ages of 15-25 usually and hes 20. From reading how you feel from day to day, I will make sure my boyfriend knows that it doesn't bother me because I could see a strong link between that and depression developing thank you for sharing and I hope you get better <3

Anonymous said...

Hello CookieBoy - hopefully your Psoriasis is better now - forget about the old wives tales - see a registered dermatologist and get either Humira or Stelara - they are the latest biologics that may help you. They have helped heaps of people with Psoriasis.

http://www.stelarainfo.com/stelarainfo/
http://www.humira.com

Keep up the good work :)

Anonymous said...

You ever consider that maybe you have Celiac Sprue? A few people in my family were diagnosed with it and it's related to TONS of different ailments.

OwnerOfASlut said...
This comment has been removed by the author.
JC said...

You and I need to talk and compare notes. When I saw your leg pictures and read about the places where you have it, I swore that I never made a website because your legs are a carbon copy of mine. Few spots on my hands, one on my scalp, elbows, and polka dot legs, at least 9 patches on each. I'm 31 and live in michigan and would like to compare notes with you. I've been through clobex, elicon, eluded, now using clobetasol solution again. What have you found that works well?