Tag Archives: psoriasis

Life with Psoriasis

my period essentials | clue app, pain relief, and period underwear!

Periods, on their own, can quickly become a nuisance when our lives are so busy and we are always on the go. For all hours of the day, there’s just this constant care and constant pain. But when you’re struggling to cope with your mental health (or have a physical disability, or both) your period may seem like a dreaded monthly task. I know when my period is on its way, my joint pain increases. I become more vulnerable emotionally and place myself into a dark space. My heating blanket becomes my best friend and my disability becomes a little bit harder to cope with when my period comes around. Realistically, periods are not happy and beautiful times where women are frolicking in flower fields with their tampons. It’s lying in bed with numbing cramps and having to spend time properly caring for yourself to prevent things like odor or infection. But with these four period hacks, I hope that this will make your “period week” (or longer or shorter), a little easier:

Track your period with an app!

I found that tracking my period with an app helps me prepare for my period every month, as well as help me understand my body more. I only just started tracking my period this year, and it’s helped ease the anxiety of not knowing when my period was coming and how to care for myself properly. Before tracking my period, I’d always be caught off guard by my period and then I’d have a panic attack because I felt underprepared. Once I started tracking my period, as well as listening to my body, then I felt I was in more control of something that was natural but inevitable. I use the Clue App (not sponsored, I just really love this app!) to track my period. With Clue, you’re not just tracking your period, but you’re tracking your mental wellbeing, your habits, and sleep…just to name a few things! Looking at how much I’ve been improving with stopping and listening to my body and look at how I care for myself monthly, it calmed me down and changed my perception of my own period.

Keep a heated blanket on yourself often!

Last winter, my mom sent me an electric blanket and it saved my life. My psoriatic arthritis/psoriasis becomes terribly inflamed in the cold. However, my roommate was from a colder climate and liked to keep the A.C. on in the winter. I struggled with the cold temperature of the room, often shivering under my heated blanket. We couldn’t seem to find a compromise on the temperature. While it was never hostile, I definitely suffered. Especially when I was on my period. Not ever being able to regulate my body temperature and constantly being cold, increased both my menstrual cramp pain and my joint pain. I am so grateful for my heated blanket and have noticed a difference in coping with both my psoriasis and cramps by wrapping myself in a heated blanket and setting the temperature to “high”. (The great thing about heated blankets is that you can set the temperature and a timer to both save energy and prevent injury if you fall asleep!)

Try some period underwear!

I never thought I’d ever wear period underwear, but I will say it was one of the greatest things I’ve ever done. While in Hong Kong, there wasn’t any overnight pads. Our only option was to buy thin daily pads and then these thick period “diaper-like” devices. I actually really liked them, however they were pretty tight and I needed to size up (but I think there was only one size but one size clearly doesn’t fit all!) However, I went to be comforted every night, not worried about if my pad was going to shift and I was going to bleed through my pajamas or sheets. They may be a bit uncomfortable because it’s a new feeling, but I was hooked once I wore these.

Keep water + pain relief by your bedside to save your energy!

There are some days when I take my period harder than others. When my joint pain is inflamed along with my cramps, it’s very hard to get out of bed. So, I keep everything beside my bed so I can save my energy to go eat meals or taking care of myself in other ways. I can also save my energy by using a really large water bottle so that I won’t have to keep walking up and down the stairs to refill my water bottle. I take Ibuprofen multiple times a day for either menstrual cramps or joint pain. Last night my cramps were bad and the worst they been in a while, I took three Ibuprofen and was able to sleep at a decent hour.

Comment below what your period essentials are!

OPTIONAL READ: *I’m thinking about starting a Bible study series! Let me know if this is something you’d like to read!* I’m so excited to announce that I am an affiliate of The Daily Grace! They offer Christian-based stationery that’s super cute, bible study tools, mugs, and even a magazine subscription service! Click the link below to take a cruise through their products and use it when you make a purchase. (*This post is not sponsored by The Daily Grace, but being an affiliate means that I make a small commission when purchases are made!*) : https://www.thedailygraceco.com/?rfsn=2946246.eb8c5) thedailygraceco.com/?rfsn=2946246.…! If you’re not ready to commit to anything, you can start with a FREE bible study and prayer guide!*

Love always,

-TPC

Twitter

Pinterest

Standard
Uncategorized

my 5 favorite movies to watch on a self-care day

Hi there!

As you guys know, I love movies. I always have. The first movie I saw in the theaters was Lilo & Stitch (2001). I was amazed at how a story could be told on a screen, and not just in a book. In just two hours or less, when you watch a movie, you can be immersed in someone else’s story. And sometimes, there’s this magical moment where a movie really imprints on you and affects for the better. I’m still pretty traditional in that I cherish my DVDs. Don’t get me wrong, I love Netflix and I love the portability of Netflix. But my DVDs are forever. I’m the type of person that will see a movie a million times, and still buy the DVD. (Just as I’ll read a book at a library, love it, and will buy my own copy.) I picked five of my favorites to watch on a self-care day. Each day I take a few hours to myself to watch a movie with popcorn (see my disability morning routine) as it gives me a chance to rest my body and immerse myself in another narrative that isn’t me and my chronic illness/disability.

Photo by Charles 🇵🇭 on Unsplash

The Fault in Our Stars

Out of any and all of the movies I’ve ever seen in my life, I always go back to The Fault in Our Stars. I watch it at least once a month, I swear. It’s just something about that movie that’s so hopeful and magical, yet raw and real. It’s witty, and sad. I watch this movie when I’m happy or feeling low, in any mood. I love Shailene Woodley and pretty much every movie that she’s ever done. (See below to The Spectacular Now) I long to go to Amsterdam, because of this beautiful movie.

Me, Earl, and The Dying Girl

I watch this movie when I need a good laugh. But from the title, it doesn’t seem as if this movie is a laughing matter. But RJ Cyler as “Earl” keeps the movie lighthearted and fun, even when the topic of the movie is far from fun. The quick one-liners and awkward moments of silence depicts the reality of painfully quirky high school friendships. I first watched this movie after a friend recommended it in 2015 when it was first released and I bought the DVD winter break of that year. Ever since then, it’s stayed in my permanent collection and I just watched it last week!

The Spectacular Now

Another Shailene Woodley classic. I first saw the trailer for this movie on a cruise ship (while on family vacation) and I couldn’t wait to get back to the States to watch it. But when I got back to the States, I probably forgot to go see it. That was until I was in Wal-Mart and huzzah! There was The Spectacular Now movie on DVD. I got TSN DVD at the same time as getting the Me, Earl, and The Dying Girl DVD, and it was a tough decision–honestly-to pick which one to watch first. This movie also has an emotional place in my heart as I can relate to Shailene’s character, “Amy” on a few personal levels.

Up

I usually don’t cry in movies, but I teared up when I first watched Up. I also watched this movie in theaters with my mom and my best friend at the time. Sadly, we stopped being friends after we saw this movie (we didn’t have problems, but our families clashed for reasons we couldn’t control). I find this movie so pretty and colorful. I recently watched this movie with a close friend when I was at a low in my life, and it helped me. So, I guess this movie represents friendship and healing for me! And the ending is so satisfying.

Toy Story 3

All of my friends know that I have an obsession with Lotso (the bear that smells like strawberries. I know he’s evil. I know he’s the bad guy, but he’s my favorite. I have two plushies of him and a ton of Lotso merch!). Toy Story 3 just gives me the warm fuzzies, because of the ending. Woody and the gang just fight so hard, always stick together, prevailing against Lotso. I just find it to be so cute at the end when Andy gives the toys to Bonnie before he goes off to college. I thought it was the perfect ending. I like Toy Story 4, but I enjoyed Toy Story 3 much more.

Comment down below some of your favorite movies!

*I’m so excited to announce that I am an affiliate of The Daily Grace! They offer Christian-based stationery that’s super cute, bible study tools, mugs, and even a magazine subscription service! Click the link below to take a cruise through their products and use it when you make a purchase. (*This post is not sponsored by The Daily Grace, but being an affiliate means that I make a small commission when purchases are made!*) : https://www.thedailygraceco.com/?rfsn=2946246.eb8c5) thedailygraceco.com/?rfsn=2946246.…! If you’re not ready to commit to anything, you can start with a FREE bible study and prayer guide!*

Love always,

-TPC

Twitter

Pinterest

Standard
Travel with Psoriasis

Celebrating #NationalIceCreamDay in D.C. with Jeni’s!

#NationalIceCreamDay

Yesterday, we celebrated #NationalIceCreamDay with Jeni’s Splendid Ice Creams!

I’d found that they were “going on tour” in a cute ice cream truck and was heading to the northeast! I was pretty excited! Mainly, because I was looking forward to trying Tyler, the Creator’s “Snowflake” debut flavor (mint + white chocolate ice cream. Never was really a fan of mint ice cream, but was willing to try it just because of Tyler, the Creator). A man in front of us enthusiastically asked for “that mint flavor”, to which I perked up because I’m a huge fan of Tyler the Creator and and I looked forward to one of the employees sliding out a small cup of green and white ice cream. But unfortunately, it was unavailable and one of the employees said it was only at select stores. However, I was impressed by the friendly service of those working at the truck and how they even offered coupons to take! Nonetheless, there’s nothing much to complain about when you’re getting delicious FREE ice cream from a truck!

The Brambleberry Crisp flavor that I got was absolutely heavenly! It tastes just like a berry pie and had pie crust pieces in it. The berry filling was rich and sweet, but it wasn’t overwhelming. The ice cream was also smooth and creamy. This is a high quality ice cream that everyone needs in their life!

The truck was located at a local Whole Foods, which I hadn’t been in since late high school early college. (Surprisingly enough, one of my first dates was at a Whole Foods sophomore year of college. He took me to the hot bar, where I shoved Mac + Cheese into a recyclable container and ate it in his car. Very romantic, ladies! I know.) Whole Foods is very big, but it has everything you need. We also noticed a burger and fries station in-store. I also couldn’t help but pass up on the cute llama (or alpaca??) plant holder in front of me!

We eased our way on down to the wharf, but before reaching there, I snapped a shot of some local street art! Then we found this AWESOME pro-feminist Ruth Bader Ginsberg (my queen) jacket that was hand-painted!

We then visited a bookstore that had relatively every modern book that’s out right now. I was hoping for more of a vintage bookstore. Inside, however, were more up-to-date books such as Michelle Obama’s Becoming and Trevor Noah’s Born a Crime. There was a whole teen section that I fangirled over, but quickly realized that I’d read the majority of the books there, like All The Bright Places, Paper Towns, and Turtles All the Way Down. We left the store empty-handed, but wanted to stop by “milk” before we headed home.

I’d seen this place a million times on Instagram and Pinterest, so I was sort of brainwashed by the aesthetic of the place and what they offered from social feeds. The menu was a bit overwhelming for me, and I hadn’t noticed anything on the menu from vlogs or Pins. The employees that were working there also were maybe having a bad day and were just kind of not too nice. Plus, we found that a small cake (the one pictured below) was around $30. Even smaller items seemed overpriced. Going somewhere for the aesthetic and buying something overpriced can be an entire post in itself. (*Let me know if you want to know my thoughts on this!*)

The Wharf was beautiful and relaxing, but only for a few minutes. I enjoy being at the water. But because it was crazy, insane hot with a heat advisory, I began to sweat and my skin began to burn. (This is a common symptom of the psoriasis that I have. But it’s sort of triggering for me because it brings back dreadful memories of last year when I’d sweat and scratch and turn into a burning little ball.) At this point, I was about to have anxiety attack because I was beginning to scratch and I worried myself. We couldn’t find our car for a solid 20 minutes and I was slowly trickling down a spiral of panic and overheating, trying to ignore the stinging at my neck. Luckily, we finally found the car, and on the ride home, we passed by the Washington Monument! (*You can see my mom driving below! Teehee!*)

Comment down below if you’ve ever been to D.C.!

I am now taking submissions for guests posts on this blog! So, if you have psoriatic arthritis, a disability, chronic illness, or struggle with your mental health, I want to hear from you! DM me on Twitter or drop me an email at thepsoriasisclub@outlook.com, if you’re interested.

*Also: Recommend some YA books to me! Looking for some new summer reads!

Love always,

-TPC

Twitter

Pinterest

Standard
Life with Psoriasis

my (morning) disability routine: blogging, movies, and medication!

Not every day is exactly the same when you have a disability. But for me, it’s easy to fall into a routine. I find routines to be very comforting and safe. It gives me a sense of pacing and grounding in my life. When my routine is thrown for a curve (such as when I was in school or when I recently went on my graduation trip–where most things are very spontaneous–I find that’s where I begin to struggle. My routine is not glamorous, or Pinterest worthy, or aesthetically-pleasing. My routine consists mostly of trying to get through the day and onto the next one. But it’s mine…and I’ve accepted it.

Photo by Ioana Tabarcea on Unsplash

6:30 a.m.

My mornings usually begin a little something like this, minus the cat (I’m allergic + also afraid). For the past week, I haven’t been sleeping in. Instead, I’ve decided to take advantage of the morning. After graduation, I began sleeping in until 10 a.m. after going to bed at 3 a.m. I quickly realized that this was not benefitting me, so after my graduation trip when I received my job, I started waking up around 4:30 a.m. Since then, I’ve quit my job for my health (you guys seem to really gravitate to this post) and now I let my body wake up naturally. Usually around 6:30-7 a.m. with no grogginess. However, I do wake up with joint pain every morning and have to wrap myself in my heated blanket until further notice!

7-9 a.m.

I treat my blog, like a job, which then provides structure and routine for my day. After spending a little time pinning on Pinterest and responding to any DM’s or blog comments I may have gotten while I was asleep, I jump right into making my blog post for that day. When I had previous blogs in the past (I used to be a lifestyle blogger right before I got sick two years ago, but quit because it felt unauthentic), I planned every post. Now, I wake up and decide that day. I use Pinterest for inspiration sometimes, but I try not to put the pressure on myself to fit in with what everyone else is writing. I don’t focus on SEO or keywords. I write what I feel.

The first thing I do before writing a post is creating a blog graphic. I use Canva, and have for years. Their interface is incredibly easy and I like their wide range of social media templates, fonts, and colors. *This is not sponsored by Canva, but maybe one day! :)* I then choose any photos I’d like to use from Unsplash (a free photo website where photographers upload beautiful images that are perfect to use for either blogging or social media! No cheesy stock photos here!) After the blog post is written, I spend about another hour scheduling tweets on Hootsuite. I find Hootsuite to be the most effective for me because I can easily copy and paste hashtags from the previous day’s blog’s with their content calendar. Hootsuite also has a mobile app too, making it easier to post tweets if you’re unable to spend time promoting blog posts or other social media things. I schedule my posts and tweets for 11 a.m. EST, putting in as many hashtags as I can. Then, I schedule again for four more times throughout the day. After I started doing this and pinning my blog posts to Pinterest, I noticed my engagement increased little by little each day!

9-11 a.m.

Once everything is scheduled, I usually can relax for a while I enjoy a healthy breakfast. (see what i eat in a day or photo above) Around this time, I try to put my phone down if the arthritis in my hands begin to flare. I try to enjoy the news, but often times it’s pretty sad, so maybe I’ll watch YouTube videos. I really hate scrolling through social media because I found that I can’t enjoy my food when I do this, but it’s a bad habit I need to break.

I occupy myself until my post uploads and my tweets are sent at around 11 a.m. EST. There’s always a lot of anticipation for this. When I first started blogging (not too long ago), I’d constantly be checking my stats and wondering why no one was commenting AS SOON as my post was uploaded. Now I’ve become more relaxed, accepting comments gratefully as they come.

Photo by The CEO Kid on Unsplash

12 p.m.

From this point of the day onward, I don’t have much going on. The pain may or may not have reached a peak. Pins and needles shoot through my back, shoulders, and legs, which is why I get up so early and tackle blog things when the pain is just numbing and annoying. I take first dose of pain medication, which then makes me drowsy, and I fall asleep for about an hour. Then, the morning is over! For these past few days, the pain has been hard to endure. So I take it easy. We’re also experiencing a heat watch, which means it’s dangerous for babies, the elderly, and those with health conditions to even be outside. Frankly, I like staying on my couch. For someone with a chronic illness, this is an accomplishment for me: moving from the bed to couch as it requires to take the stairs, which then inflames my joint pain. I really only have the energy to watch a movie and eat popcorn, so I spend the rest of the day trying to tame my flares and distract myself.

I chose this photo as sort of a confidence booster for myself because often times I am called “lazy” by family members and friends for not being able to be “active” in ways people think I should be. It hurts, but I’m doing my best. That’s all I can do.

Thank you so much for reading! Comment down below one thing that you have to do every day!

I am now taking submissions for guests posts on this blog! So, if you have psoriatic arthritis, a disability, chronic illness, or struggle with your mental health, I want to hear from you! DM me on Twitter or drop me an email at thepsoriasisclub@outlook.com, if you’re interested.

I’m also thinking about creating a Twitter chat for us! Let me know if this is something you’d like to participate in.

Love always,

-TPC

Twitter

Pinterest

Standard
Journal

i quit my job for my health, but now i’m lost.| how i’ve been feeling lately #1

Hi there.

I’m going to be honest with you: I do not feel my best. Mild, but prevelant anxiety has crept it’s way back into my life. I feel as I am in a fog, sort of listless in life. I do not enjoy this feeling in the slightest. But for today’s post, I will just vent and put everything out there. If you’d like to read more upbeat posts about psoriasis advocacy, here are some recent posts:

But if you’d like to stay, you can. And if you’ve ever felt the same way I have, you can always return here and read this post. You are not alone.

I’ve had to quit my job.

After graduating last month, there was pressure to find a job–immediately. I searched for weeks on Indeed, applying as fast as my fingers could type. For about a month, I was swimming in the sea of oblivion, not knowing if I’d ever get a job.

And then huzzah!

A job fell into place. But just as sudden it fell into my lap, it suddenly became toxic. I was hired the day I was interviewed and was convinced that the job would be smooth sailing. However, that wasn’t the case. There were many issues from the start that I pretended didn’t exist. Besides that, the job was physically taxing on my body. Even though I only worked a few days a a week, I was required to transport heavy equipment and move things that I wasn’t expected to while others stood around and watched. On Monday of this week, I came home and my hip was locked so tightly that I wasn’t unable to walk up the stairs. I cried for hours, went to work the next morning, and continued to suffer more. I understood that there was nothing that the company could do about my pain. But besides that, the environment itself was draining and I was often being commanded by the male employees and told to undo things just to redo them and be critiqued. I was also being rushed from the male employees for them only to get frustrated and snatch the work from my hands. Also, a male employee claimed he was “passing by me” and brushed up against me.

I quit the next day, after my manager coincidentally called me asking “how are things?”, and I didn’t hold back.

I’ve felt very alone this week.

Not being in school for so long and not being around my friends has taken a toll on me. I spent a lot of time alone and reflecting, often getting caught in my head and trapping myself in negative thoughts. Not being around people who are like me has caused me to feel very confused at where I am.

I’m struggling with the arthritis pain, upset that I haven’t adapted to it yet.

I’ve been struggling with psoriasis and psoriatic arthritis for close to two years. But since graduating, my pain has seemed to increased. I’m not sure if the depression/anxiety cycle has affected the pain in my joints, but I’m having a hard time coping. I know the pain is not my fault, but I often blame myself more times than not for how I’m feeling. It’s very hard to function when the pain is this strong. I remember the days (not too long ago) when walking around in the sun didn’t affected me. But now I spent most of my days in bed, blogging and reading, trying to distract myself from the pain. It’s frustrating to have pain every single day and not get a break.

I feel very lost and it’s as if I’m floating.

I don’t like talking about my condition with my friends. I usually just keep everything bottled inside. Just a few nights ago, I did open up to a friend and I felt guilty. I felt guilty because I opened up to them. They were asking questions about the pain, trying to find a situation in how pain related to them. But they haven’t responded to my messages in about two days and I fear that I have burdened them with my problems. I don’t like speaking about psoriasis unless it’s with someone who has experienced the same as me, because I think others without it, struggle to process the severity of it and flee or they say, “I’m sorry,” and we move on. No one is obligated to listen to me. I will not force them to.

Thanks for making it to the bottom, if you did! I’d like to make this a series called “How I’ve Been Feeling Lately,” maybe posting weekly updates on my physical and emotional health. Let me know if I should continue!

I’m currently taking written submissions to be featured on the blog! Send me a DM on Twitter @lepsoriasisclub or send me an email: thepsoriasisclub@outlook.com

Love always,

-TPC

Twitter

Pinterest

Standard
Life with Psoriasis

psoriasis q + a: what it’s like living with psoriasis/psoriatic arthritis

Lately, as I’ve been writing more blog posts and trying to find others with psoriasis to connect with, I’ve been wondering if there was anyone who wanted to learn about psoriasis? I am always more than happy to provide my experiences on treatment, mental health, and my journey. But, I was beginning to feel like maybe I wasn’t answering the questions that those without psoriasis wanted to know. Luckily, Unwanted Life guided me, and gave me questions to answer to bring awareness to psoriasis + psoriatic arthritis! Thank you so much for this. 🙂

What’s the difference between having really bad dry skin problems and psoriasis?

The biggest difference is that psoriasis causes your immune system to weaken, whereas dry skin can just be caused from the soap you’re using, your environment, your diet, and stress levels. Dry skin may cause a little bit of flaking and minor pain. Dry skin is relatively the same across the board. With psoriasis, there are different types that all vary in levels of pain, treatment, and damage to the skin.

What are the different kinds of psoriasis and how can they affect you?

There are several different types of psoriasis! Just so I don’t share any incorrect information, here are the definitions as stated on The National Psoriasis Foundation website (psoriasis.org)!

  • Guttate Psoriasis:

Guttate psoriasis appears as small, round spots called papules [PAP-yules] that are raised and sometimes scaly. Guttate lesions usually appear on the arms, legs and torso, with rare cases forming in the scalp, face and ears.

Guttate psoriasis often develops suddenly and may appear after an infection like strep throat. It is a good idea to consult with your health care specialist to be checked for strep throat if you have guttate psoriasis, as that infection can occur without any obvious symptoms.

  • Inverse Psoriasis:

Inverse psoriasis (also known as intertriginous psoriasis) shows up as very red lesions in body folds. It may appear smooth and shiny. Many people have another type of psoriasis elsewhere on the body at the same time.

Inverse psoriasis is found in the armpits, groin, under the breasts and in other skin folds on the body.It is particularly subject to irritation from rubbing and sweating because of its location in skin folds and tender areas. It usually lacks the scale associated with plaque psoriasis due to the moist environment. It is more common in overweight people and people with deep skin folds.

  • Pustular Psoriasis

Pustular [PUHS-choo-lar] psoriasis is characterized by white pustules (blisters of noninfectious pus) surrounded by red skin. The pus consists of white blood cells. It is not an infection, nor is it contagious.

Pustular psoriasis is primarily seen in adults. It may be limited to certain areas of the body — for example, the hands and feet. Generalized pustular psoriasis also can cover most of the body. It tends to go in a cycle with reddening of the skin followed by pustules and scaling.

  • Erythrodermic Psoriasis

Erythrodermic [eh-REETH-ro-der-mik] psoriasis is a particularly inflammatory form of psoriasis that often affects most of the body surface. It may occur in association with von Zumbusch pustular psoriasis. It is a rare type of psoriasis, occurring once or more during the lifetime of 3 percent of people who have psoriasis. It generally appears on people who have unstable plaque psoriasis. This means the lesions are not clearly defined. Widespread, fiery redness and exfoliation of the skin characterize this form. Severe itching and pain often accompanies it.

What treatments are available for the different kinds of psoriasis?

Quite a few treatment options are available, such as injections, oral medications, topical creams, and even light therapy (phototherapy). I have only ever used topical creams and taken pain medication for my inverse + guttate psoriasis. Treatments like phototherapy or injections are incredibly expensive, and unfortunately, I am unable to afford them even with insurance. I know that both of these treatments have to be administered by a doctor, which require weekly or bi-weekly visits. There are phototherapy kits on Amazon to use as a home remedy, but I would recommend having a doctor administer the treatments in a medical setting.

Which moisturisers do you recommend for the dry skin psoriasis sufferers?

A few posts ago, I mentioned the wonders that the Curel Hydratherapy Wet Skin Moisturizer did for my skin (see how i saved my psoriatic skin). MG217 Medicated Multi-Symptom Coal Tar Ointment, MG217® Medicated Conditioning Coal Tar Shampoo, and Psoriasin Deep Moisturizing Ointment . (MG217 is approved by The National Psoriasis Foundation! My Patient Navigator Emma sent me several samples from this brand!) Anything with coal tar in it is extremely effective in relieving psoriasis symptoms. I’ve had complete healing from lesions and “holes” left from guttate psoriasis. However, it is very potent in both color and smell. Coal tar will stain your clothing, bedding, and skin a greenish-yellow tint. It has spread across my clothing, leaving trails of yellow streaks on white clothing in particular. If you use any of these topical creams, be sure to wear dark clothing!

And would they work for people who just have really bad dry skin?

Possibly! Though, it may be too strong for those who have mild dry skin.

How has having psoriasis affected your mental wellbeing?

In my last post psoriasis confidence?: i’m still not comfortable with my body, I gave sort of an in-depth account of how psoriasis caused my self-confidence to plummet and even affected my perception of myself as a woman. It has mostly affected my mental state in negative ways, causing me to have a low-self esteem. I’m still on the journey to accepting my body, but on more days than not, it’s hard.

What has helped you with your mental health recovery with tackling your psoriasis?

Talking about it with people who will listen has been the most effective method to helping me recover mentally. Sometimes, even if people don’t listen, I still talk about it anyway, just so it doesn’t fester in my mind and cause a panic attack. I’ve also begun riding my bike to relieve stress and actually, this is good for when you have arthritis, because it keeps your joints moving. Yet, I’ve also found that spending time alone has provided positive and negative outcomes in healing. For example, sometimes I like to be alone where I can read and be under my heating blanket in the quiet. But other times, I need to be around people because I don’t feel safe with being alone. Overall, just talking about it and finding a community online has begun to help me.

Is psoriasis something you’re born with, like a genetic disease, or is it something that can affect anyone?

I was not born with psoriasis, but it is a genetic disorder! I formed psoriasis after years of stress and anxiety, which was enhanced by a poor diet and lack of nutrition when I studied abroad in Hong Kong. I did have “eczema” as a kid, but looking back, I think it might’ve been a children’s form of psoriasis. But I’m not too sure.

What coping strategies do you have that you find affective for living with psoriasis, so that other suffers can benefit by using them for themselves?

  • Having open discussions with friends and family
  • Researching online everything you can so it’s not as scary
  • Reaching out to NPF because they have a reassuring and kind social media team that answers any questions you have, any time you have them
  • Speaking with a trusted doctor and being honest about your mental health
  • Looking for online support groups/others who have psoriasis
  • Watching YouTube videos online about how others cope, and listening to their stories
  • Be willing to try different methods of healing (topical creams, phototherapy, counseling for mental health, medication, meditation) and do not give up if a cream or medication doesn’t work. It took me about 2 years months to find an effective treatment!

Thank you to anyone who got this far in the post! I know it’s a bit long, but I wanted to answer the questions to my best ability. Thank you again to Unwanted Life for DM’ing me these really thoughtful questions. (Go ahead and give their blog and Twitter a follow too! They’re really supportive! 🙂 )I hope this helped you, and please don’t hesitate to reach out to either me or NPF with anything that you need.

Healing from psoriasis is possible. Just talk about it. Raise awareness. Try everything. You are not alone! 🙂

Love always,

-TPC

Twitter

Pinterest

Standard
Life with Psoriasis, Mental Health

psoriasis confidence?: i’m still not comfortable with my body

It’s been hard to admit, but I’m still not comfortable with my body.

I still am not content with how I look.

And trying to heal from the scars it leaves behind had been a long journey that I’m still on.

my hand.

This is my hand. I took this photo a little over a year ago. I don’t know if it’s too noticeable, but here (spring 2018) I was already showing the early signs of psoriasis. However, I was misdiagnosed by a doctor, who called it “neurotic excoriations.”

My hands would be covered in these itchy and burning patches that would bring searing pain every time I washed my hands. Then it started spreading up my arms, across my chest, and then down to my legs. At the worst point, I was unable to shower, go outside, and then later…wear clothes.

With psoriasis came hyperpigmentation, skin splitting, and lacerations. From around late fall of last year to early spring of this year (and even now), I didn’t know what it was like to feel pretty. I avoided looking in the mirror. When I did, all I’d see were my dry patches and flakes. Once the lacerations healed, I was left with dark scarring on my back, arms, and legs from the damage psoriasis had caused. I’d wear hats and hoodies every day to cover up my body. I felt ugly, and still do–even to this day. My body confidence has never been high. I’ve always felt I was subpar to the other girls in school. I tried to change myself (see my self image story) to make myself like other girls.

I wasn’t going on dates. I wasn’t hanging out with friends. In high school, I spent a lot of time alone, with my self-depricating thoughts about how I looked. When I was diagnosed with psoriasis, everything heightened. I beat myself up for letting the stress get to me. I blamed myself for forming psoriasis, cursing my body and asking God why He placed me in my own mold. Last semester, I determined that I would fit better in with male friend groups. I struggled with dissociating from my female identity because I didn’t think I was worthy enough to “be a woman”. I wore baggy clothes and a backwards hat every day for entire spring semester, because I didn’t think I was worthy enough to be feminine. (Mental health is an interesting thing, and I’ve never spoken about my dissociation from my female identity until now.)

I don’t think I’ll ever be as comfortable with my body. When I asked The National Psoriasis Foundation about how to cope with the scarring, they said, “time.” Right now, time is all I really have. I try to keep my skin as moiturized, but I can’t help the flashbacks I get when I look down at my skin and am reminded of the days where I’d lie in my bed and my skin felt as if I was on fire, not knowing if I’d make it to see the next day.

There was a beacon of hope when Kim Kardashian West released body makeup, and showed the amount of coverage the foundation provided, especially for people with psoriasis. Kardashian West has struggled with psoriasis for years, often speaking on her struggles, but sharing how she’s now accepted it. I was interested in buying this foundation. But then I wondered if it would really help me gain confidence…if I was just covering up the scarring, without accepting it first?

https://www.youtube.com/watch?v=UaZBQ7zDedQ

While I haven’t fully accepted my body or come to terms with it, but I know that there’s a potential to get there.

Thank you all for encouraging me to write this. Comment below what you link about KKW’s “pro-psoriasis” foundation! *Also, do you guys like my new logo??*

Love always,

-TPC

Twitter

Pinterest

Standard
Life with Psoriasis, Travel with Psoriasis

what look for in a disability accessible amusement park

Amusement parks, while fun and exciting, can create either memories of happiness or dread for someone with a disability.

Psoriasis and psoriatic arthritis is more than a skin-deep condition. It goes beyond the skin layers, and what I’ve learned is that what lies beneath the skin is more of a struggle to cope with rather than the skin sores and dry patches themselves.

Even though I have managed to tame my psoriasis flares, the joint pain from psoriatic arthritis is something that creates daily challenges for me. I cannot stand for long periods of time, especially in the summer heat. Walking far distances in parks can quickly become difficult, especially when there are not ample benches. I overheat easily, because my skin is already warm and inflamed on any given day. I tend to have shooting pain in my neck, wrists, and knees. Most days don’t pass without a nap curled in my heating blanket. On days I’m unable to nap, I become irritable, which then increases the pain.

Last week, I travelled to three major theme parks to not only experience what they had to offer, but see if they were accessible for someone with disabilities. Although going to an amusement park used to be a no-brainer, now I am a little hesistant when traveling to locations that have spread out attractions and require constant, all-day walking.

Disability Access Passes

There is no shame in obtaining a Disability Access Pass. It will create ease in your experience, and if this is something that you find helpful, then don’t be afraid to share it with others. However, I wasn’t aware that Disability Access Passes existed until AFTER I went to Disney World, Legoland, and SeaWorld Orlando. Yet, I was happy that this service was offered. They are all pretty much the same across the board: those with disabilities are allowed to either enter in the exit of a ride and enjoy the attraction at their leisure without the strain of standing in line. Or, you’re assigned a return time to come back to avoid the long lines. I really wish I’d participated in these services, as each day became harder to navigate the park with stand-by lines. But here are some links to Disney World’s, Legoland’s, and SeaWorld’s DAPs:

Disney World

SeaWorld Orlando

Legoland (Hero Pass)

Ample Seating/Indoor Rides

I recommend looking at video walkthroughs of amusement parks before buying a ticket. If you’re unable to get a wheelchair (or think you may not need one, like I do, but wish I had), it’s important to know how the park is laid out. I’d been to Disney World quite a few times and had known that there was plenty of indoor rides and benches to sit on when my arthritis started to flare.

However, I was not aware about how large SeaWorld Orlando was and the lack of benches and sitting areas. SeaWorld Orlando is laid out in an interesting way that requires walking right under the sun. There are pockets of trees to create shaded areas, but the park is virtually uncovered. I only went on one indoor ride that provided temporary relief. However, it was a motion simulated ride that ended in subzero, artic temperatures called Empire of the Penguin. It was so cold that staff was wearing parkas. But cold trigggers my psoriatic arthrtis, so I was not happy when I got off this ride.

Yet, I had a more enjoyable time at Legoland Orlando. It had plenty of shaded areas covered by trees along with benches to allow me to stop along the way. Quite a few of Legoland’s rides either had covered stand-by areas or indoor rides. Two indoor rides that were so accessible, I was able to ride them for than once was the 4D theatre and the Ninjago ride. The 4D theatre had bubbles, water, and air-conditioning so it was a safe space to cool off. The Ninjago ride was very fun, but did get tiring as it requires to use your arms repeatedly to activate the 3D screen. You sit in a large car that holds four people and you wear 3D glasses. In order to participate in “battles” to have to swing your arms forward in chopping motions to send simulated objects that will hit things and earn points. Here’s a video example:

Inside the Magic

If this is something that may be difficult, no worries! You can sit an enjoy a smooth ride in air-conditioning.

Wheelchair Services

At all three parks, wheelchair services were offered. But it seemed as if SeaWorld was the least accessible for those in wheelchairs. There was a fair share of dips and hills on the walking paths that sometimes were expected and/or straining. Ironically, the least accessible area of the park was entering Seasame Street Land. I had a really hard time naviagating through this area as there is a large, downhill slope before you reach Seasame Street Land that was incredibly dangerous for those with and without wheelchairs. Also, the park is spread out, but packed. It’s a bit unnerving. Rides are in the back areas of the park, but when you reach that area, there’s a lot of other attractions that it becomes jammed with other park goers, making it practically inaccessible.

Legoland and Disney, however, were easier to navigate. There weren’t any significant hills I came across in either of the parks. The walking paths were wide enough for wheelchairs. While both parks are large, they are designed to comfortably fit wheelchairs, strollers, and walking park-goers without any added stress. (Expect for when Disney’s Magic Kingdom gets overcrowded for the fireworks, it may be hard to walk through, but this is at the end of the day!)

Overall, I would say that Disney World and Legoland have it down when it comes to accessibility services. SeaWorld does have room for improvements. Yet, all three parks offer something different, and fun for everyone!

Thanks for reading! Let me know if you’ve ever experienced an accessibility difficulties or would like to praise an amusement park for the services that they offer!

Love always, 

-TPC

Twitter

Pinterest

Standard
Life with Psoriasis, Mental Health

how i saved my psoriatic skin | coping with psoriasis

I can’t help but to get a little emotional when I think back over how much my skin has improved since I first noticed symptoms of psoriasis back in the fall of 2017. I’ve come a long way. Now, almost two years later, I feel like I’m in control, and I’m proud of myself from the progress I’ve made. The first step in coping with both chronic and mental illness is to give yourself a routine and know what works best for you. Routines can be calming in that you can control some aspect of your daily life. For me, routines provide a sense of relief and independence. Here are four things that saved my psoriatic skin:

The National Psoriasis Foundation

I cannot thank The National Psoriasis Foundation enough for providing me a source of support through one of my darkest moments. After a coworker told me that I had psoriasis (before I was clinically diagnosed), I immediately researched it and tried to find as many answers as I could.

Luckily, I stumbled across The National Psoriasis Foundation. I was matched with a “Patient Navigator” named Emma, who I’d email frequently to help figure out how to cope with my psoriasis. Around this time, I’d been developing guttate psoriasis alongside inverse psoriasis. Guttate psoriasis create small holes onto the skin that are basically open sores. This one is sort of terrifying to have scattered all over your body. However, the inverse psoriasis was the most pain I’ve ever experienced, as inflammation is on the inside of the skin, causing the skin to be sensitive to the touch. It felt as if an iron was always pressed against my skin.

Fortunately, Emma provided a warm reassurance that my psoriasis journey had just begun and that healing was possible. As a way to kickstart the healing process, she sent me samples of products catered specifically for psoriatic skin. These products lasted through my winter break and helped ease the symptoms. Psoriasis slowly began to feel like something I could conquer.

Also during that winter break, NPF invited me to Boston to attend the lighting of the Prudential Center. I met others who were just like me, finding their way through psoriasis and psoriatic arthritis. I was even asked to speak at the event! Having a strong support system eased my anxiety and fear that I used to have about my psoriasis!

Curel Hydratherapy Wet Skin Moisturizer

Photo by OhToBeAMuse

I don’t know where I would be without this product. This was in the sample pack that Emma sent me. During the worst flares, I couldn’t shower. My skin would immediately dry in water, causing my skin to burn and split open. I was using products (with CBD oils) that I thought would soothe my skin. When in reality, I was doing just the opposite. I’ll never forget my first shower with this. I was almost brought to tears as my skin began to smoothe again. I’ve been using this since late December and haven’t had an issue with it. It’s activated by water, so you don’t dry yourself before putting it on. After using it for six months, my psoriasis has completely cleared. I fully recommend this (even if you have ezcema or dry skin).

Mario Badescu Sprays

Unsplash

Mario Badescu saved my skin. I’ve used all three “colors”, however for psoriatic skin I found that the green tea one was the most effective in clearing dry patches and redness. I also started spraying this in my hair every day, and found that it eased the uncomfortable sores and scalp flaking that I used to be so embarrassed about. Now, I have little to no flaking when I brush my hair. Whereas before, it used to snow whenever I ran a brush through my scalp. It may not sound like a big deal, but it was unnerving and I became anxiously self-conscious whenever I’d scratch my scalp in class, and leave behind piles of dry skin.

Unsplash

drinking water + changing my diet

It may sound a bit juvenile, but drinking water daily did wonders for my skin. Before I was diagnosed, because I was in a foreign country and having a nut allergy meant I was limited to eating what I knew: McDonald’s. It was convenient and relatively inexpensive. There were two McDonald’s on campus that I’d always go to for a quick meal. But in doing so, I was poisoning myself with the grease and only inflaming my skin more. Now, I don’t eat fast food as much. Instead, I trade fries for a fruit smoothie for a snack and drink plenty of water throughout the day. It may be annoying to constantly drink water, but trust me, it flushes out the toxins that will cause you to flare up. It’s essential!

These are my top four things that truly saved my skin. It hasn’t been an easy or quick journey in the least. I don’t know if people know this, but a side effect of psoriasis is actually anxiety and/or depression. I can second that. If you’d like to see a post about how I coped mentally with my psoriasis, let me know! (Skin-positive post coming soon. Thank you all so much for telling me it’s something you’d check out!)

Love always,

-TPC

Twitter

Pinterest

Standard