How does PsA impact your daily life?
*This giveaway has closed but we still welcome community members to share how PsA has impacted their daily life.*
In what ways does psoriatic arthritis impact your daily life? Do others in your life recognize and understand the effect of PsA on your day-to-day life? Please share your experiences with us!
I suffered from plaque psoriasis since I was little. When I got older and started a career as a CNA I started having issues with pain in my joints of my fingers , my lower back and toes... I also developed carpal tunnel in both wrists. It got to the point where my fingers were bothering me , the pain is awful. 3 yrs ago I lost my grandma due to covid and it shook me really bad and kicked the psoriatic arthritis into gear.. I was diagnosed 2 yrs ago, I can't open things, and my fingers started deforming along with having "sausage digits: . I wake up and cry in pain, I have extreme fatigue, brain fog and now have depression, I had to stop working . I was on medicaid and was able to get on humira, but it wasn't working.. while trying to get approved for tremfya they took my medicaid away... I can't afford insurance even for myself. I'm a wife and mom of 2. My oldest has Autism.. I feel useless alot and alone because nobody understands what I'm going through. I wish I could get help , I'm scared that I won't be able to use my hands.. I'll be 42 this year.
Iām so sorry you are going thru this. I am a single mom and no insurance. I have been approved for Tremfya that worked for over 5 years and cocentyx which didnāt work through patient assistance. Donāt give up!!! Please. Gentle hugs. I have both also.try to get Medicaid again. See if you can get a hearing. Thereās no reason why you should have lost it with your condition.
To put it simply, I do not exist without my PsA.
I was diagnosed with skin psoriasis at age 4, and about ten years later when I became a pre-teen the arthritis set in. My entire life has been navigating the roads between doctors, pharmacies, getting better, and flaring up. I am 22 years old and I feel as if I have an elderly body. The pain, the anxiety, it is all part of my character at this point.
But, despite the crushing weight and embarrassment of my failing immune system, I do not let it control me. I still go out with skin psoriasis plaques on my face where the world will stare and judge. I still wear shirts that become snowy with flakes from my scalp. Some days I show up with medical braces on my knees and back to ease the enthesitis and PsA, other days I take my forearm crutches because I'm weaker and need the support. I take my biologic injections with bravery, power through the intense illness from oral medications, and rise above the people who tell me that I'm "faking it" because they will not ever understand what it's like to be in my body. PsA is my truth, the cards I was dealt, and without it, I would not be the person I am.
Thank you so much for sharing so much of your story with us, you have been through so much in your life already. I love your attitude towards everything. These things that happen and we experience in life, shape the people we become. There will always be those who have something to say. I also where I recently wrote about this exact thing in our sister community, for plaque psoriasis. I am sharing it with you. https://plaquepsoriasis.com/living/skin-display.
- Clair ( Team Member)
Since 2017 or was it 2018? It seems like an eternity now. Living with PsA I equate to a game of roulette or other games of chance when I wake up in the morning. I never truly know until about 2 hours into my morning HOW my body is going to react. Maddening at times.
As this has progressed and I'm still trying to find a happy medium between what I WANT/NEED to do and what my body ALLOWS, I feel as if I am dealing with 2 different personalities trapped inside.
Don't worry, I don't need therapy for those extra voices. A dark sense of humour is how I tackle it.
Rather than thinking of life with PsA as like a box of chocolates, I think it is more akin to a box of exploding cigars. You may not know what you're going to get, but you know it's gonna suck. 
Hello
, I like your humor. Oh, I get it. We are not alone. We all have been through so much, but we also have a voice. I was diagnosed with psoriatic disease in 1963. It has been a very long road. There are times when we don't know what our body is doing. It's like the least of 2 evils. Yeah, I don't need therapy yet either, maybe a drink. What do you say to yourself every day to keep moving forward.? Thanks for sharing.
How doesnāt it is the better question sometimes. I have to watch what shoes I wear, remember my menagerie of meds, decide on how to approach my day depending on how many joints hurt that day, heat and ice my feet, legs, and back (thatās the bare minimum). I had to reconfigure my diet because my meds distorted my taste and smell. I either cannot sleep (right now itās 4:55am and I slept for an hour earlier, and need to be up in 2 hours) or I sleep for 14 hours and it is not enough. Itās made me battle more with my depression, rage, and sadness than my trauma.
And the best/worst part, is even when all of this compoundsā¦ Iām still so thankful to feel. To be aware of my body and finally learn to listen to what my body needs. To learn to love my skin even when my neurological creepy crawlers are taking pitch forks to my arms and legs. To open my eye daily and smile and remind myself how blessed I am that I woke up and am present in each momentā¦ as best I can be.
, I totally know what you mean - the innumerable ways that PsA affects our lives certainly make this question a rather difficult and overwhelming one. I wouldn't know where to start answering this! Your response demonstrates just how much PsA affects every area of our lives. It's admirable that you are still able to feel thankful and grateful through this. I know it can be a huge challenge to get to a place where that's possible. I do hope you're able to get a bit more sleep before you have to be up. I absolutely hate it when my sleep is disrupted š¬ Best of luck in the giveaway! š -Catherine, Community Moderator Hello
, Thank you for sharing so much of your journey with us. I have been living with severe psoriatic disease for 61 years. Not one step of this journey has been easy, but I'm doing it. We go through a lot as you know. You keep your head up. I understand everything that you wrote. I'm not even going to add to what you wrote. You nailed it. Keep moving forward and up. We are not alone in this journey. Diane (Team Member)
