My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
Jen's Path to Understanding Pustular Psoriasis
Ever felt overwhelmed by a health condition misdiagnosis? In this heartfelt episode, join me, Gracefully Jen, as I recount my personal journey with psoriasis, starting from the first sores that appeared on my ankle back in 2016. Initially mistaken for a skin infection, my condition went through a series of misdiagnoses until a visit to my rheumatologist revealed the surprising truth: a rare form of psoriasis called pustular psoriasis, caused by my TNF inhibitor treatment. Listen as I share the emotional highs and lows of navigating this challenging diagnosis and the steps I took to find an effective treatment for both my joint and skin health.
This episode is not just my story but a beacon of hope and support for others facing similar challenges. From the confusion and frustration of initial misdiagnoses at urgent care to the moment of clarity with my rheumatologist, I walk you through the entire journey. If you or someone you know is living with psoriasis, this episode is packed with valuable insights and encouragement. Don't forget to check the show notes for more information on the new podcast I was interviewed for, and show them some love as well! Let’s raise awareness and support each other in our health journeys.
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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.
Speaker 1: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.
Speaker 1: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.
Speaker 1: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.
Speaker 1: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.
Speaker 1: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?
Speaker 1: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.
Speaker 1: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.
Speaker 1: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.
Speaker 1: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.
Speaker 1: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.
