I remember the hope that I was filled with when I used to go to the dermatologist. As a kid you think that going to the doctor will fix anything. You're sick, you go to the doctor, they give you some magic pill or potion and *poof* you're cured! The dermatologist called what I had psoriasis, which didn't mean squat to me at the time. I just wanted the magic potion. And they did give me a potion. But it didn't do anything. Neither did the next one. Or the next one.
Over the years I tried lots of not-so-magic potions for my psoriasis or eczema or whatever they wanted to call it at the time. There were lotions, creams, gels, ointments (bet you thought all those things were the same didn't you...), shampoos, you name it. Lots of them smelled nasty. That's because a lot of them were tar based and really really expensive. I remember the one made from peanut oil that I had to put on my scalp overnight and then wear a shower cap to bed. That was LOADS of fun and it didn't even work. I've tried millions of home remedies and every combination of coconut oil, apple cider vinegar, baking soda, honey, and essential oils you can imagine. Nothing like using my Kitchen Aid to whip up vaseline, baby lotion, vitamin E and a few other mystical ingredients. I've tried consuming special foods and vitamins, supplements, etc... Nothing works. I had one dermatologist recommend shaving my head. When he left, the room the nurse, in confidence, said, "I keep telling him to stop saying that to women but he doesn't listen." In reality, shaving my head actually might have helped.
There are a few things that do help. Sunlight helps (so shaving my head wasn't the worst idea ever). Areas of my body that get natural sunlight usually clear up in the summer. But with living in this God forsaken winter landscape, there are whole months IN A ROW where my skin doesn't see the light of day through the layers and layers I need to stay warm. In fact, if I had to say the only thing that has ever really worked to clear my skin, natural sunlight would be it. And even that doesn't work sometimes. I have a current medication that actually works. IF you put it on twice a day. IF you slather it on. And IF you don't throw up at the $100 a tiny tube price tag. For $100 a tube I just live with the red scaly patches, unless they show up on my face. I reserve the $100 a tube medication for spots on my face.
Exercise helps, in general. Immediately after I run it usually looks way worse due to the redness and flushed skin. But once that fades, the natural endorphins do their magic and it "helps". So does anything that makes me deliriously happy, like when I met Tim. Clear skin! (At least temporarily) My psoriasis, and I suspect most, is stress induced. Don't even say, "just reduce your stress". I had a doctor tell me that once too. Thanks for that super helpful advice. I'll just get rid of stress. Now, how do I go about that again....
Living with psoriasis means making tough choices. For example, I don't wear shorts. Much. Around home I'll wear shorts. But in public it is a stretch for me to even wear capris. I remember one year when I took Libby to the POA Congress show in St. Louis. It was a particularly bad break out year for my skin. It was 107 degrees in the shade and I was wearing jeans. A concerned friend told me to just wear shorts - no one would even care. I tried it and had shorts on for maybe one hour before someone commented on my legs, "OMG - what happened to your legs? Are those bites or some kind of rash?" Yeah, I went back to wearing jeans and haven't looked back.
Living with scalp psoriasis also means that there were years where I couldn't wear a pony tail. Sometimes scalp psoriasis doesn't just stay where it is supposed to and creeps out where the world can see it. You get really used to not wearing dark colors, making it snow everywhere you go and people telling you what kind of Head and Shoulders you should be buying. I remember watching that scene from Breakfast Club where the girl shakes her flaky hair out on the desk and thinking to myself that she had nothing on me. I also remember the merciless teasing and my classmates acting like I had a choice in the matter. It was the most frustrating thing in the world to be harassed for something I had literally no control over and had been trying to fight for years.
Dating with psoriasis was also super fun. (That's sarcasm.) Of all the things that were harder about dating at 40, being frank about the fact that my skin sucked was easier. I guess I figured of all the things that were probably a challenge about dating me, crappy skin was the least of my issues. I had an ex who called me a dalmatian. Who doesn't think being called a spotted dog is a compliment? *raises hand* Another complained about the cost of the medications. I quickly learned to just live without.
I guess maybe education is the key. There was a time when I was teaching 8th grade health class and we came to the section on skin disorders. I was teaching about psoriasis and there were comments all over the classroom, "gross" "that's disgusting" "I'm so glad I don't have that." To that last comment I said, "well, I do." It got quiet enough to hear a pin drop. They all looked at me. I said, "Yes. You heard that right. I have psoriasis and had it for years. You're right, it is kind of gross and not a lot of fun. But there isn't anything I can do about it. There just aren't effective treatments for every kind of psoriasis." That class will probably never forget that lesson, mostly because some of them were horribly embarrassed. But we all need to realize, not just that one section of 20 some 8th graders, that passing judgment on someone for a disease they have no control over isn't fair, but it also isn't kind.
There have been maybe 3 times in my life when my psoriasis has completely or nearly completely disappeared. It was a glorious time that I enjoyed and look forward to happening again. Possibly someday. There was no rhyme or reason to it getting better. I wasn't using any special medication or treatment. I was just happy. The rest of my life, minus those first 10 years, I have had psoriasis on my scalp, arms, legs, in and outside of my ears, eyelids, face, torso, virtually every square inch of my body has had the scaly patches at some point. Currently my entire torso is covered, I have it on my scalp, in my ears and a few patches on my arms and legs. It itches, it's unsightly and I'm glad it is jeans and sweatshirt season.
And lastly, what can you do if someone you know has psoriasis? A few things -
1. Remind them they are beautiful and who gives a crap what their skin looks like.
2. Tell judgmental people who feel the need to comment on it that they should shut their trap.
3. Do not offer them unsolicited advice on treatments, but do respectfully share if you hear of a new treatment. Just be kind as we have probably heard of it, tried it and been disappointed.
4. Do not gift with scented lotions as we probably have already regifted a thousand bottles already. Most of the scented lotions do nothing for our skin and do more damage than good.
5. And please - if I hear the word "essential oils" one more time, I will remove you from my friends list.
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