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

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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?

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

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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

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