As I brave my winter skin, I also brace myself for the stares and comments that come along with it. As a New York native, I can say I am fairly accustomed to the bizarre and odd things that one sees in this city. Cirque du Soleil on the train… questionable food on the streets sold from even more questionable vans… fashion statements galore… you name it, we have it. But what happens when you are on the other end of the staring?
I don’t care how long you have Psoriasis, you never get used to the stares. You never get used to the moving of seats on the train just to get away from you. You never get used to the questions. And, oddly enough, for a city that considers itself so diverse and open-minded, I think we can be one of the most close minded cities in the world.
I’ll never forget standing on the street one day waiting for my car to be taken out of valet. A little kid, maybe four or five years old, was getting out of the car with his parents and he asked his mom if she thought all the bug bites on my skin hurt. It was maybe one of the most innocent things I had encountered concerning my disease. He didn’t mean anything by it and it was almost sweet. But the way it hit me and hurt me will never leave me. Kids can be so innocent and so raw.
Walking by unusual people every day never bothered me. It still doesn’t. But to suddenly be my own little side show was surprising to me. I never really saw it that way but I was this little freak roaming the streets of New York. I didn’t fit in! And all because of my SKIN!
I think my point is… take it with a grain of salt. Try not to slide your sleeves down to make people feel comfortable, or sit by yourself on the train away from everyone intentionally. If someone has an issue with your skin, let them ask you about it. You’ll be surprised how many people will sigh when you say, “it’s just psoriasis. it’s not contagious.”
As you know from reading my blog, I try to maintain a healthy diet for my Pso-Sanity. Well, luckily I’m not much of a sweet person but when I got a craving, I tried to find alternatives to sugary things I liked. I came across these fruit “roll-up” imitations a while ago and they hit the spot. You don’t even need to add sugar!!!
Everyone has their own method to making these at-home fruit “roll-ups” or “fruit leather”. You can google a bunch on the internet but here’s my method. I do not use a dehydrator but if you have one or want to purchase one, I’m sure the process goes along much smoother.
Prep time: 5 mins
Cook time: 6 hours
Total time: 6 hours 5 mins
What You’ll Need:
4 Cups of strawberries
Wax paper (O.K. to cook in oven with or you’ll have a melted mess that doesn’t taste good)
Shallow baking tray
1. Preheat oven to its lowest setting, somewhere around 150 to 170 degrees.
2. Line two half-sheet pans with parchment paper or a Silpat baking mat.
3. Puree the strawberries in a food processor or high-speed blender.
4. Taste the puree and add sugar if needed. (I do not add sugar as I feel like it’s healthy and sweet enough as is.)
5. Spread the fruit puree in a thin, even layer on the baking sheets. The puree should not be more than ⅛ thick. (To measure, stick a skewer in the puree and then measure how far up the skewer the puree comes.)
6. Dry the puree in the oven until darkened, dry to the touch and pliable, approximately six hours.
7. Peel the fruit leather off the Silpat or parchment paper and cut into strips
8.Store in an airtight container.
Of course mine sometimes look like broken messes of sticky delicious fruit roll-up pieces but, hey, who cares if it’s healthy and yummy, right!?
Eating healthy is an important part of keeping your chronic illness under wraps. I find the best way to make sure you’re doing this is to meal prep but not everyone has time for that.
So here’s a super easy, quick, healthy kale salad that a friend whipped up for me. It’s definitely a new favorite.
Extra virgin olive oil
1/4 cup grated Parmigiano
1 bunch of kale, tough stems removed
Chicken cut into cubes
1/2 red onion
Coat a large pan with olive oil. Toss in thinly sliced onion and bring the pan to medium heat. Toss in cubes of chicken and stir until fully cooked and onion is soft. Remove from the heat and reserve.
In a bowl, toss in the kale, the cooked chicken/onion, chop up one avocado and place inside mix, sprinkle with Parmigiano and add dressing (but don’t soak the salad). Taste and season with salt if needed.
Recipe courtesy of Nikki Bucks, cook extraordinaire and fitness instructor.
So, as you may or may not know, I do tend to travel a lot. Whether it’s for work or play, traveling with psoriasis can suck! So what do I do?
This weekend I was in Chicago attending the HealtheVoices conference and it was amazing (but I’ll come back to that in another blog). What WASN’T amazing was my packing skills. I can’t tell you how many times I’ve been on a plane (not nearly as many as Beyonce but you know…) and I still can’t get it together. I’m always scrambling last minute. (insert frantic emoji)
SO … I decided to get it together.
BECAUSE my skin is so sensitive and I do need special creams and lotions and shampoos, I packed myself a little “Pspot-On Carry-On” toiletry bag. Everyone is different and I am no medical professional but I’ll tell you what I pulled out of my little bag of tricks… (and, no, it wasn’t a lamp).
We know clothing is important (for your skin, sanity, so you don’t get arrested… stuff like that) but let’s focus on some products. Here’s my arsenal:
-Grandpa’s Pine Tar Soap
-Grandpa’s Pine Tar Shampoo
-Blue Eiffel Naturals Face & Body Wash
-TheSleepyCottage sleep mask
-Any sort of baby lotion
-VitaminC Packet (just because)
-My own soft washcloth
-Any perfume I want (so long as I spritz it on my clothes and not my skin)
-A clean pair of panties (ask my mom… i can hear her nagging now… “Do you want to die with dirty underwear??” OK MAAAAAA, They’re packed! Ya Happy?)
I tucked all my toiletries into this beautifully sewn bag and It was a wrap! Why didn’t I think of this sooner????
Moral of the story??? Just have a handy toiletry bag ready to go. Throw some of the amazing products I suggested in it (or don’t) but be ready. You never know where a spot may go….
With that said, I’m having my first giveaway soon! Thanks to Etsy and all the absolutely amazing people working so hard on there, I’m happy to say that I’ll be giving away at least 5 really amazing travel packages. Why?
Well, I travel a lot. And it’s been really tough on my body and my skin. A lot of the time I carry my bag on just because it’s easier (or because I’m cheap and not paying $25!!) – so I know if I bring my creams and medicines and special shampoos, I risk having them tossed.
In the near future I’ll be posting a blog about traveling with psoriasis and to the first 5 people who post a picture of their psoriasis or their battle with psoriasis on my Facebook page …. Facebook.com/SeeingPspots … I will be sending you a toiletry bag (I have men’s and women’s, don’t worry) with creams and oils and soaps and lots of fun stuff to bring on your next trip.
I’ll be in touch soon but for now LIKE my Facebook and follow me. I’ll let you know a week in advance when this will take place.
When I was initially diagnosed with Severe Plaque Psoriasis I completely ignored all other forms of psoriasis. Why? Well, It certainly wasn’t to be cruel but I was just too busy wallowing in my own self psoriasis pity. I knew what version I had now and I had to focus primarily on what was happening to ME. Who cares about those other spotty people right? WRONG.
So fast forward a bit and It eventually sinks in that OH, because I have plaque psoriasis I am more susceptible to psoriatic arthritis at some point. Um, can anyone say yikes? Needless to say I was not happy about this revelation. But much like my realization and acceptance of plaque psoriasis, this too took a little bit of time to sink in but it sank… like the titanic. In fact, months after my own diagnosis and the constant wheel spinning of “where in the heck did this come from in my family?”, I was having lunch with my father and grandfather and BLAM. There it was. Right in front of me eating a pastrami sandwich. My grandfathers hands.
Curled up into painful piles of bones were my grandfathers fingers. I had always noticed them, they were hard to miss, but they didn’t LOOK like my skin so I never made the connection. As a very stern, stubborn, former navy dude, my grandfather (or papa as I like to call him) never went to get this officially checked out. It was waved off and grunted at as “no big deal” or “just getting old”. But it was very clear to me that I was looking at a case of very obvious Psoriatic Arthritis and I didn’t need a medical degree to come to this conclusion. So what came next? AH! The revelation that my chances of PsA just increased substantially. I felt the pain and dread lurch over me and force me into a submissive physical hunch. So what now? Acceptance? Submission? Knowledge? A little mix of all three? I was in favor of a healthy mix.
So to the web I went…
What is psoriatic arthritis?
Psoriatic arthritis is a form of arthritis that affects some people who have psoriasis — a condition that features red patches of skin topped with silvery scales. Most people develop psoriasis first and are later diagnosed with psoriatic arthritis, but the joint problems can sometimes begin before skin lesions appear.
So, again, why should I worry?
Well, I have arthritis in my family gene pool AND I have psoriasis so essentially I’m a psoriatic ticking time bomb. Factually, about a third of people with psoriasis will get psoriatic arthritis. People with SEVERE psoriasis (yup, like mine) could have a larger chance and USUALLY the skin symptoms pop up first. Lucky me, I know. According to an article by WebMD, “The Link Between Psoriatic Arthritis and Psoriasis” reviewed by David Zelman, MD**, “About 40% of people who get psoriatic arthritis have relatives with it or with psoriasis. Scientists don’t know which genes are responsible for these conditions.”.
So what now?
Buckle up and wait for the psoriasis train to pick me up and take me on another ride, again. Keep up with my doctors and my skin and prepare for the worst. As my papa would say “screw it, it’s all in your head anyway” and then he would order a martini. Psoriatic pinky up and all. Cheers!
FIND MORE INFORMATION at PsACounts.com !!!
*NOTE That the image in this article is NOT mine or my grandfathers (as in, they aren’t his hands but are super close to what his actually look like. I’ll have to catch him mid pastrami chomp next luncheon) but in fact belong to The American College of Rheumatology as watermarked. Thank you guys.