Hi , my Spoonie Sisters , it is your host , gracefully Jen , and I am here to talk to you today about psoriasis . So recently , I had the pleasure of being interviewed for a new upcoming podcast , and I am so thrilled that they reached out to me and asked me to be part of this , and so I'm going to share a little bit about them in the show notes .
So be sure to go check out the podcast and give them some love .
I'm going to share with you a little bit of my diagnosis story , and I don't know any kind of helpful information that I can come up with about my whole psoriasis journey , because I feel like in the past , when I've talked to people or been on other podcasts , I share with you my story about rheumatoid arthritis , but not about psoriasis .
All right , here we go . In 2016 is when it officially started , I noticed little sores popping up on my ankle and slowly kind of climbing up my leg .
There was probably maybe two or three in the beginning , and , honestly , we didn't think this had anything to do with my autoimmune conditions whatsoever , and so I went to an urgent care doctor because , for anyone that's familiar with this , when you are on infusion medications , like I was at the time you have to skip getting an infusion if you have any kind of
infection or anything like that . So I went to get checked out and to find out what was going on so that we could attack it . Attack it immediately , get this figured out so that I could , you know , stay feeling good . I wanted my joints to continue feeling the way they had been feeling , which was pretty darn close to remission .
So I went to this urgent care doctor and they believed that I had an infection somehow caught from either the pool or the hot tub at the gym we were going to , and so they started me on some antibiotics . I think they gave me some kind of ointment to put on and you know I did a follow-up with my family practitioner and they were on the same page .
Know , I did a follow-up with my family practitioner and they were on the same page . So a few weeks later I went to see my rheumatologist for my monthly infusion and I got into the office and I said you know this is what is going on .
I wanted to show you and find out if I'm still okay to do my infusion today , and you know , and if I can't , what do we do from here . She took one look at it and I love her . I love her so much . She took one look at it and she said you know , dear , I think I know what this is , but this is not a skin infection .
I'm going to go get the other rheumatologist . She wanted to talk to her fellow co-workers and so when they came back , they returned there were three of them and I'm telling you , there's nothing like having three rheumatologists come in to look at you and to discuss you . It's kind of a scary feeling . I was absolutely intimidated and freaked out .
I thought that meant there was something really terrible going on . And so they came in and they're holding my hands and looking at them . They're looking at my feet because by then I was starting to get little sores on my hands and looking at them .
They're looking at my feet because it's , you know , by then it's I was starting to get like little sores on my hands and feet , little little , but the ones on my legs were pretty big and a lot of uh-huhs and okays .
And it was actually , if I remember correctly , the older of the three , a gentleman , that looked at me and he said this is a rare form of psoriasis and it's called pustular psoriasis . And , of course , my rheumatologist chimed in and they explained that in 1% of people they have this rare reaction to TNF inhibitors .
And that was the kind of treatment that I was on , and they called it pustular psoriasis . And so I immediately had to stop taking the one thing that was helping my joints and now find out what we could do to help both my joints and my skin . Gosh , you know , I've been asked how that made me feel and I'm , you know , looking back .
I just remember feeling heartbroken . Heartbroken because I had seen the light , the light of how I could feel so good , and now feeling like I'm at the beginning , all over again and having to figure out what we're going to do . So what we did was she decided okay , let's start with the dermatologist , see if we can get this under control .
Everything the dermatologist had me try . He had me try three different things . They were painful . The first one was a spray , followed by an ointment , and then I think it was a cream . For the third one , the spray , it felt like I was pouring acid on my skin . Oh , my gosh , I can't even express the burning feeling .
I already felt like my skin was melting and now to feel it melting all over again . It was horrible . I wouldn't want to wish this on anyone , and so finally , I went back to the rheumatologist and I said I don't want to see this dermatologist anymore . Everything he's trying is not helping . What can we do ?
And that's when we started doing weekly injections that treat both rheumatoid arthritis and psoriasis , and you know , we started to see a little bit improvement , but you know , I still kept having the overgrowth and accumulation of thick bits of skin building up , and then the pustules and the popping . It was just awful .
So finally we landed on a pill , and this pill I had to take it every day , and in the beginning it made my stomach upset and it gave me some migraines and stuff like that . But I kept telling myself this is tolerable , I'm going to get through this and eventually your body gets used to it and I'm telling you , my skin started to clear .
You know , every once in a while I'd still get a breakout in my ear or my scalp or whatever sometimes my hands , but my skin was clearing up . And so you know , the diagnosis is in 2017 , but it's 2024 . And I'm so thrilled to tell you that on a rare , rare occasion , I get sores , but not very often . It's more of like a scaling and a flaking .
Now , if it happens , and it's usually when I'm stressed out or forget to take my medication . And since that initial medication that I was on , I'm now on another one . I'm on a JAK inhibitor and my skin is even more healed than before . I can actually look at my hands now and they look like my hands .
So I guess I want to tell you , if you're going through a psoriasis journey of some sort , there's light at the end of the tunnel . Don't give up . Find what's soothing for you . Keep active with your voice . Tell them how you are feeling . Tell them when you are not accepting that something's failing you .
Tell them when you don't want to see a person anymore because they're not taking you seriously . And if you need my toolkit , I'm absolutely willing to share it with you . I can tell you what lotion is my favorite . It is actually called Utter Balm . I'm happy to provide the link in the show notes for you . It is soothing , it doesn't burn , it feels good .
I would use it multiple times a day and it's like a dream . I buy it on Amazon . I'm happy to share with you what kind of things I've used on my scalp . If you want , on Amazon , I'm happy to share with you what kind of things I've used on my scalp . You know , if you want to know , I'm here to share because I want you to feel good too .
I'm not a doctor . I'm not a professional . What I am is a fellow patient that doesn't want you to feel the way that I felt , and I want you to remember you're not alone . Thank you for taking the time to listen to me and to hear more of my psoriasis journey , and if you ever have a question or want to reach out to me , my Instagram is always open .
You can find me at MySpoonieSisters or GracefullyJen . My DMs are always open and until next time , don't forget your spoon .