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.
O.K. So Tina wasn’t singing about stress but for people with Psoriasis, stress certainly doesn’t feel like a “secondhand emotion”. So, why exactly DOES stress affect our bodies so much?
Well, stress can cause a lot of ailments and discomforts in the body. First let’s look at stress by itself. Stress is an emotional and sometimes physical reaction that your body has in response to an outside threat or demand. When you feel threatened, your nervous system reacts by flooding the body with stress hormones, including adrenaline and cortisol, which gear the body up for emergency action. So why does my skin react??
Although medical professionals still have a lot to learn about Psoriasis, they do know that it is an autoimmune related skin condition. It is thought to occur when the immune system turns on the body creating an overproduction of skin cells (that’s why we have those fun white patches of built up skin). I don’t know about you but if my body is going all civil war on itself, It’s stressed out!!
So, if you’re body is like mine and stress is a trigger, here are some handy dandy tips and suggestions:
-Exercise! Get your butt up and get that adrenaline coursing. It will release your happy hormones too!
-Meditate. Put some OHM in your life.
-Put down that bad habit. Alcohol, drugs and even smoking can heighten your stress levels. Cut them back or cut them out!
-Get enough sleep. Catching those needed ZzZ’s helps your body re-energize and relax.
-Reduce caffeine and sugar. These temporary “highs” will send your system into crash mode as soon as they start wearing off.
-Eat healthy. Believe it or not, changing the way I eat helped my psoriasis tremendously.
Is stress a trigger for you? What do you do to help manage it!
“Be kind, For everyone you meet is fighting a hard battle.” -Plato
It’s Invisible Illness Awareness Week (September 28 – October 4) and I’m encouraging everyone with an Invisible Illness to stand up and stand out!
As most of you know, I was diagnosed with Severe Plaque Psoriasis only a few years ago. I try to keep my blog posts light and happy but the truth is, it can be a crippling illness.
When I learned that I would have Psoriasis for THE REST OF MY LIFE I broke down. I sat in bed with my computer open, reading other peoples blogs, for days and cried. Seems silly but it was a huge blow for me. At the time I was COVERED in spots that varied from dry and flaky to sore and bloody. My scalp, my ears, my eyebrows, my neck, my arms and legs, my torso… everything… covered. The only things pretty clear were the palms of my hands and feet and the center of my face (aside from my eyebrows). The hot water burnt my skin and made me bleed, sleeping was impossible because I was consumed by open wounds and sores and the slightest move was painful, my scalp just had CHUNKS of dry skin that i picked constantly… i picked it so much, i wondered if i was picking through my skull! I was tired, I was in pain, I was miserable, people were disgusted by me (even if they didn’t say so), I love to cook but avoided the kitchen because I knew no one would eat anything I made (I would hesitate to eat anything someone who looked like me made!)… it was awful. I saw NO END to my illness and technically there IS NO END; this is something I will have for the rest of my LIFE. But I’m only in my 20’s! I’m single! Who’s going to want to date me??? How can I get jobs like this??? My life was at an all time low. Even the lotions and creams that soothed my skin temporarily had to be saran wrapped on and were sticky and messy and smelly. I saw no end to this…
But I looked at Brooklyn, my little wonder pup, and thought “hm, this little life depends on me and loves me and wags her tail no matter what I look like…” So I started SeeingPspots to vent, to motivate, to help people like me who were in bed reading about their psoriasis for the first time. I decided to be PRO-ACTIVE instead of IN-ACTIVE. Yes, this is a lifelong battle for me. Yes, it’s gonna suck sometimes. But I revel in my skin when it’s clear and I do the VERY BEST at being positive when it’s not. We are ALL fighting battles of various proportions… be the best version of you, always. ❤
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Severe Plaque Psoriasis
2. I was diagnosed with it in the year: 2014
3. But I had symptoms since: 2013
4. The biggest adjustment I’ve had to make is: Accepting the person underneath the skin
5. Most people assume: I am being vain and am not actually suffering
6. The hardest part about mornings are: Facing the day and being positive when I am sad or don’t want to look in a mirror
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My Phone
9. The hardest part about nights are: Sleeping
10. Each day I take 5 or 6 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Try everything and am a huge advocate of treating your insides the way you want your outsides to look like
12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t change a thing
13. Regarding working and career: My illness has certainly morphed what I want to do with my life in a positive way
14. People would be surprised to know: not much… I’m an open book.
15. The hardest thing to accept about my new reality has been: that people are vain and when I’m not pretty on the outside the amount of people who want to be around me decreases significantly
16. Something I never thought I could do with my illness that I did was: wear a bathing suit again!
17. The commercials about my illness: make me a little angry. They can be inaccurate. They show the elation of the patient AFTER being clear but not how we feel PRIOR to clear skin.
18. Something I really miss doing since I was diagnosed is: sleeping better
19. It was really hard to have to give up: crappy food. But I allow cheat days =)
20. A new hobby I have taken up since my diagnosis is: Blogging ❤
21. If I could have one day of feeling normal again I would: Right now I am pretty clear, so I do whatever I can: cook, work out, take hot showers… little things my skin doesn’t permit when it’s in super flare up mode.
22. My illness has taught me: to not judge a book by it’s cover. The happiest people are sometimes fighting the largest battles.
23. Want to know a secret? One thing people say that gets under my skin is: grammatical errors
24. But I love it when people: point out MINE lol
25. My favorite motto, scripture, quote that gets me through tough times is: saying the “Hail Mary” prayer
26. When someone is diagnosed I’d like to tell them: I PROMISE, it is going to be O.K.!!! and give them a (gentle) hug
27. Something that has surprised me about living with an illness is: that I am stronger under pressure and adversity
28. The nicest thing someone did for me when I wasn’t feeling well was: love me anyway
29. I’m involved with Invisible Illness Week because: I believe in spreading awareness for my illness
30. The fact that you read this list makes me feel: special =) THANK YOU!! ❤
A few months ago I was introduced to an amazing group of people that I like to call my “Pso. Family”, and that’s exactly what they are to me (minus the Italian screaming across the table and the occasional “Fuggetaboutit”). Even though psoriasis affects 3% of the worlds population, that’s approximately 125 million people worldwide*, the community of people who are willing to speak about it is relatively small. This doesn’t surprise me. We have become so accustomed to covered our skin condition literally with clothes and even just hiding indoors that we seem to have incorporated this stigma with us in a mental capacity.
I am fortunate enough to be an advocate and volunteer for The National Psoriasis Foundation. This invitation has not only opened so many amazing doors for me but it has allowed me to interact and welcome fellow psoriasis sufferers into my life. Not only are these people my support system, my friends, my colleagues, and my heroes in a lot of ways but they are also my second family.
Even if you don’t feel comfortable talking about your psoriasis, I highly recommend finding a support system that listens to you when you need to talk and supports you when you need to be lifted up a bit. There are so many things to dislike about this disease but my Pso. Family is not one of them. Find your “family” and I promise it will make a world of difference for you and your skin.
Now can somebody pass the meatballs and sauce??? Fuggetaboutit!
So, I’ve had psoriasis for over a year now. For some reason it seems to pop up more in the spring/summer time than in the fall/winter months (don’t ask me why, it’s usually the opposite for most people).
Anyway, it started on my face this time which is the FIRST TIME it’s ever been on my face. I suppose it was bound to happen at some point. It’s hard to have psoriasis pop up on places that are hard to hide (likkeeeeee my face, unless I wear a mask or stocking over it but I don’t plan on robbing a bank anytime soon). My advice? Just FACE it!
So what? You have a few spots on your face or your hands or any other place that’s particularly noticeable. My whole theory is if YOU don’t treat it like it’s a big deal, then others will react less to it. Don’t draw more attention by trying to hide it. Own it. And of course take care of it. Keep the area clean, put on your topical lotions or creams, DON’T PICK and take it easy. It’s not fun but make the best of it.
*Everything stated on my blog is my own personal opinion and thoughts. You should never take it as medical advice and always seek out a professional physician*