Hey, there’s a day for me! (World Psoriasis Day)

29 Oct

I just found out, via another blogger, that today is World Psoriasis Day!

I have psoriasis, which is a lovely little skin condition that is incurable.  It can cause spots or flakiness or giant patches of red or scales. And cracking skin and bleeding and sensitivities.  And in some lucky folks, it comes with a side of arthritis.  It also comes with a lot of itchiness and a lot of questions from complete strangers.

But really – I’m okay with it.  There are worse things in life.  Which is not the usual tale of someone dealing with psoriasis.

Let me explain…

A few years ago, I discovered there were sites and message boards for people with psoriasis.  A whole community of people, all dealing with this thing that was sort of mine alone.  I rarely meet someone with psoriasis. so I was instantly curious as to how others managed their flaky skin.

What I found was a bit shocking to me – posts from people who felt their lives were inhibited by their skin condition.  People who had stopped wearing short sleeves or shorts, who didn’t attend events because they were embarrassed by their skin.  People who thought they’d never have a relationship because of their skin.

I was stunned.

It had never occurred to me to hide my flakes and scales and red patches.

I kept reading, trying to understand, and I realized the biggest difference between others and myself was that they all had years of nice skin before psoriasis hit.  They knew what life was without psoriasis.

I am clueless.

My story began when I was a wee infant.  I broke out in scales.  The doctor decided I was allergic to breast milk and my mom should stop breastfeeding me immediately (I’m sure he was polite enough to leave off the “you dirty hippie you” part).  I was declared to have eczema.  For the next few years of my childhood, I was treated for eczema.

Yeah, turns out psoriasis doesn’t like eczema treatments.  Instead of relief, I ended up with angry skin.

Then one day, the psoriasis, which had kept to just my knees and down, elbows and up, ears, and scalp, crept onto my face.  My face!  I was about ten or eleven, that time in a young girl’s life when you feel freakish enough – and lord knows, I was freakish enough.  I mean, I was adorable, yes, but I also had a horrible speech issue (an articulation and probably a phonological disorder), crooked teeth, I was a total shrimp compared to my peers, and the flaky skin.  I couldn’t deal with it on my face as well.

My mom took me to a dermatologist.  She explained my history, how I’d been diagnosed with eczema, but none of the treatments were working.  I can still remember the doctor saying “Well of course they’re not working, she doesn’t have eczema.  She has psoriasis!”

OH!

Being the total library nerd that I was, I went to the library and looked up psoriasis.  I learned how to spell it, what it was, how their was no rhyme, reason, or cure.  I learned that I’d just have to keep dealing with it.

I was pretty good with dealing with it.

Actually, I was a total snot.  If adults asked my tiny ten year old self if I had tried lotion for my dry skin, I’d tell them how it wasn’t dry skin, it was psoriasis, I’d spell it out for them, and give them a medical definition.  I also remember one day, standing with friends, and some girl was all “OMG, your knees, what’s wrong with you?” and I was all “It’s psoriasis.” and she was all “Ew, is it catching?” and I was all “YES!” and lunged at her….then laughed as she screamed and jumped back.  Then laughed as my friends went “She’s always had it, it’s not catching, stupid.” to the girl.

Yes, I was a smart-ass, even as a child.  It’s genetic.

But my flaky, itchy, patchy skin was always a part of me.  No one in my family made a big deal over it, so it never occurred to me that I should.  I even found some good in it – the thick plaque scales on my knees meant if I fell, I rarely cut open my knee – I usually just knocked a few layers of scales off.   I spent my childhood summers running around in shorts and sundresses, never even realizing I should care about hiding my psoriasis.  In the winter, I was fine with it because knee socks and longer sleeves hid it at its worst.  I got used to the cycles of it, learned how to shave my legs around it (no easy task), learned that things like baby oil were not my friend (holy burning pain Batman!), and kept telling questioning people what it was.

“It’s psoriasis.  There’s no cure.”

It never occurred to me that I should hide from the world, because that option was never even thought of as a child.  It was just part of who I was.  So by the time I met my husband in college, I didn’t think twice about my skin.  I was more worried that I’d scare him off with my crazy self.  I’m not even sure he really noticed my skin – maybe a “What’s that?” and me explaining, and him going “Oh, okay” and we both moved on.  His only concerns over it is when it’s bothering me. And the best part was, as I aged, my psoriasis became less – just the knees, just the elbows, just the scalp, a tiny patch here and there.  It was good.

Then I got pregnant with my first child.  And it all disappeared.  For the first time in my life, I had normal skin.  Well…almost.  Where it’d been on my upper arms, it left light patches of skin, like all the pigment was gone. But that was okay too.  Three months after giving birth, it came back with a vengeance, and in places it hadn’t hit before.  So where it’d only been above my elbow, it was now from elbow to wrist.  My lower legs became patchy again, as did just below my ankles.

I remember my doctor noting it, offering me steroids to treat it.  I declined.  See, except for a brief time when I was 10 or 11 and tried tar creams and such, I’d never did anything for my psoriasis except try not to anger it.  The idea of going from nothing to steroids was a bit freaky.  But I had the excuse of “oh, I’m breast feeding.” to be able to decline meds.  And after a few months, my skin settled back down to just a few patches and all was good.

Then I got pregnant again.  And it all went away, again.  Only to flare up, again, after giving birth.  This was my new cycle.  I once again declined steroids.  I dealt with it on my own – mostly just ignoring it.  I went through this cycle two more times.

As an adult,  my psoriasis has been pretty calm for the most part.  It was definitely worse when I was a child.  But it’s also become a barometer for my stress levels.  If I am under a lot of stress, I break out in more psoriasis.  Really, it’s amazing to me that I’m not just one big walking flake.  But psoriasis had a few more surprises up its little sleeves.  Like the time that due to a lot of stress, I realized that I’d broken out in a total body rash – or as I found out, just another form of psoriasis.  I went around for part of one summer covered in tiny red dots.  It was awesome.  Yes, that’s sarcasm you hear.  But, it stayed off my face, so that was decent of my old friend, wasn’t it?  And it did go away.

I have learned over the years that anything full of chemicals is not my friend.  Soaps can be mean to me, because if they’re already drying, they will cause me pain.  Cold weather and forced hot air vents are not my friend because they will cause my skin to dry out more, to the point where anything brushing up against my shins hurts.  I found out that radiators, with their hot water and moisture, is my winter friend.  I learned that shea butter is my friend, and that The Body Shoppe and Lush will give you samples to try.  Goat milk soap is lovely, as is cream made with nettles that my husband brought back from Scotland once.  And I can still remember the thick patches of plaque psoriasis that covered half of me as a child, and know that the little bits I do deal with now are pretty good.

Now….well…I have these light patches all down my arms.  I didn’t realize how much so until one day I stepped out of the shower and saw all the red patches.  That lead to a trip to Lush to find a more potent body cream (I’m trying out the Dream Cream, on recommendation from the lovely young man who works at Lush and has a brother who has psoriasis and uses it.)   I also have a card, a referral to a rheumatologist, to make sure that my achy fingers and feet doesn’t turn into a more hand-threatening form of arthritis.

Otherwise, it’s all good.  Or at least, my normal.  It is what it is, and just part of life.  I’ve never hidden it because it never occurred to me to hide it.  I just like to think that we all have imperfections, mine just show a little more.

My arm, just now.  It's very hard to take a picture of your arm by the way.  I hope you appreciate it and all its flaky glory!

My arm, just now. It’s very hard to take a picture of your arm by the way. All the lighter patches is that pesky psoriasis of mine, creeping around.  I hope you appreciate it and all its flaky glory!

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I have to make a teal pumpkin

22 Oct

A couple weeks ago, a friend of mine posted about how she cried when kid-safe candy was found for her kids.  Another day on Facebook, a friend dealing with a very rare disorder shared the fears and frustrations of raising kids on a limited diet.  I remember when another friend’s son had his first anaphylactic reaction to peanut butter (the first time he tried it).

Needless to say, Halloween is a holiday that causes a bit of a panic attack to moms like them.  Moms who have to spend hours researching foods online, reading labels in stores, food prepping in the kitchen.

We’ve always been lucky in the food department.  Maura has no allergies, no food limitations, no food aversions.  She can eat whatever she want…well…that’s edible.  She enjoys a wide variety of foods, loves fresh fruit and eats her veggies happily.  I can place a full bag of candy in front of her and not have to pick through to weed out something that she might react badly too.

I am aware of how lucky we are, and aware that not everyone is in our shoes.

I will also admit, when I heard about The Teal Pumpkin Project, my first thought was “well dang, where am I supposed to find a teal pumpkin?”.  There was a moment of “I don’t want to have to do yet another extra thing…” in my head.  Which immediately left as soon as I went to buy Halloween candy.  I found myself doing my usual selection of variety packs of fun sized stuff, making sure there were plenty of nut-free options.  Then I started looking for non-food variety packs.  Because despite that momentary feeling of “not one more thing to do” that I had about finding a teal pumpkin, I knew that teal pumpkin or not, I could still have non-food selections.  Which I found in a huge pack of glow bracelets and necklaces (thank you Target).

Then I realized that I’m just going to have to have a teal pumpkin.  I can’t not do it.  Not when a friend on Facebook posts a link to the project with “Please do this!”.  Not when I’ve watched friends spend their kids childhoods making sure they eat safe foods.

So I’m going to make a teal pumpkin..  It’s going to be awesome.  My plan is to find a fake white pumpkin, paint it teal, then coat it in fabulous teal glitter so that sucker shines out into the night.

Because every kid should be able to enjoy Halloween.

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Day 5 of my captivity….

21 Oct

The jailer is in a good mood, probably because her form of torture is so very entertaining to her.  I did try to wrestle her away from the torture device only to lose. I can feel my brain slowly oozing out one ear.  I don’t know how much longer I can last….

Maura’s still sick.  Barely.  Just a slight temperature, but enough to keep her home.  She’s in a great mood, but the constant stream of “Dinosaur Train”, “Winx” and “The Rescuers” has erased any knowledge I gained in college.

We did go to the doctor yesterday, to make sure there wasn’t some underlying cause for the fever.  Ear infections and strep were ruled out, but there is a virus going around and it seems to have gotten hold of the girl.  This morning she still has a very slight temperature, which means yet another day home from school.

We’ve hit the phase of me going stir crazy and her well enough to be strong-willed.  I’m also saying ridiculous things like “No, we aren’t watching “Mulan” in Spanish.  You can’t speak Spanish because I can’t speak Spanish.”.

(Maura is into turning on the closed captioning, and knows how to change languages on Netflix.)

(And it’s nothing against the Spanish language.  But if the girl decides to speak it, I will need to learn it first.)

I’ve now decided that I really need to learn how to bi-locate.  This way, I can be home with the little sicko, but also run out and go grocery shopping, or write, or do something besides plot the demise of every whiny little dinosaur on that friggen dinosaur train.

 

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