Chronic Illness Warriors: Supporting Each Other Through Pain

When chronic pain came knocking in my early 30s, little did I know that I'd be diagnosed with rheumatoid arthritis and later, palmar plantar postulosis psoriasis. I felt lost and alone in my struggles, which is why I've made it my mission to be a support system for others going through similar experiences. In this heartfelt episode, I, Jen, share my personal journey and the challenges I faced, from dealing with brain fog to failed attempts at getting help from my doctor.

But we're not alone in our battle with chronic illness! That's where Christine Miserandino's life-changing Spoon Theory comes in, helping us understand the physical, mental, and emotional fatigue faced by those with chronic illness. Together, we'll share stories, life hacks, and tips to make life as a Spoonie more manageable. If you're a fellow Spoonie Sister, I'd love to feature you on the podcast and have you connect with others over a cup of coffee or tea. Let's support each other in our shared experiences and thrive despite our chronic conditions.

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Transcript

Speaker 1: 0:42

Hi my Spoonie sisters. I'm your host, gracefully, jen, and it's probably that time again where I should share a little bit of me again, because we have new listeners and it's just that time. So, welcome to my Spoonie sisters. I'm Jen and my story began in my early 30s with chronic pain that started in my left knee. One morning I went to take the stairs up three flights to my locker at work, like I usually did, when suddenly I had a sharp burning pain shooting down my entire knee, causing me to limp the rest of the way. Something just didn't feel right, but I was not sure why at the time and, honestly, i checked it up to overdoing it at the gym. Gradually it worsened over time and more joints began to follow the trend. My doctor he sent me in to get my knee checked out. Everything came back okay. I went on my merry way, but it continued And, like I said, it didn't feel right and things changed. So gradually it worsened and more joints just kept on going. My hands were swollen. My fingers were stiff, warm and inflamed. It hurt to try to grab anything or to grip. If we were having a meal that involved a steak knife. I always had to ask my husband for help because it hurt too much to try to grip the knife and cut my steak. In December of 2012, i was sent to a rheumatologist and he diagnosed me with rheumatoid arthritis And, granted, this was my second rheumatologist, because I hated the first one and this one was so much better. So I got my diagnosis. I thought, okay, this is it, i have my answers. But I also thought my life was over too, because I really thought that meant that I was going to be like a 90-year-old woman and be crippled. And what a lot of people don't realize is that's really not how it is anymore. We can manage these diseases and still live a seemingly normal life. In 2016, i began having what we discovered to be allergic reactions to my biologic infusions, and in 2007, i had an additional diagnosis palmar plantar postulosis psoriasis added to my chart, and this was caused by having an allergic reaction to TNF inhibitors. So here we are at rheumatoid arthritis and palmar plantar postulosis psoriasis And that's such a mouthful to say all the time. It's a rare type of psoriasis, it's painful and it's awful. Honestly, i felt overwhelmed and alone after getting both of these diagnoses, which made me passionate about answering, listening and virtually holding hands with others through some of the darkest and scariest times. I partner with and I highlight women suffering from autoimmune diseases, rare diseases and disorders of all kinds, mental health and anxiety, and we also sprinkle in a couple of my Spoonie brothers too, because why not? They're part of our Spoonie community too. I strive to be the support for newly diagnosed or struggling warriors, the way I desperately needed and did not have in the beginning of my journey. For those with a question, please feel free to ask. Hi, my Spoonie sisters, i'm your host, gracefully, jen, and it's been a while. It's been a while since I shared from just myself, and we have a lot of new listeners, and so I thought I would go back and once again do another recording sharing a little bit about me and why I got started with all this. So welcome to my Spoonie sisters. We've been around for just over a year now.

Speaker 1: 6:55

All right, let's go back in time. I'm Jen, and my story began in my early 30s with chronic pain that began in my left knee. One morning, i walked into work and I decided I was going to take the stairs of three flights to my locker, as I usually did, because to me, this is another way of getting a little bit of exercise in, and why not? It's not far to go. But that morning I had a sharp burning pain shooting down my entire left knee and this was causing me to limp up the stairs the rest of the way. Something just didn't feel right, but I wasn't sure why at the time, and I talked to my doctor about it the next time I saw him And if I remember correctly, i think he had an MRI done on it or something, and they just didn't find anything, and so I just kind of pushed it back and didn't think anything of it, and I think this was back in about 2009 or 2010. So it was a couple years later when exactly the same thing happened walking up the stairs and I was in a pain. I chalked it up to thinking I'd overdone it at the gym, just kind of assumed that Let's go with it. But gradually it worsened over time and it kept hurting And by then he started to run some blood tests.

Speaker 1: 8:22

The next time I saw the doctor And he said you know, i think there's some kind of rheumatism going on with you, but I'm not really sure what yet. So let's work on getting you into a rheumat Oh my gosh, sorry guys. See, this is what it's like to have brain fog. A rheumatologist That is the word. He wanted to get me into a rheumatologist, but I guess I left a part out. So this was after a failed attempt at him helping me, because originally, before the blood work, he actually thought I had a sharp infection in my knee. I cannot believe. I almost forgot to tell you that. So I was on months worth of antibiotics with nothing improving, And it was when more joints began to hurt and get inflamed and swollen and warm.

Speaker 1: 9:14

That's when he sent me to the rheumatologist And it took a long time to get in. And this first one I don't feel like he took me very seriously. He wouldn't give me a straight up diagnosis. He basically handed me three pamphlets and said here you go, i think you have one of these, read the pamphlets, but in the meantime we're going to get you on a high dose of prednisone And we're going to start you on a disease modifier. So what do I do? I go home and, like anyone, i research. I research what a disease modifier is, what the point of prednisone is, and honestly, it just kept getting worse.

Speaker 1: 9:55

My hands and my fingers were always in pain. I couldn't even grip a knife to cut up a meal if I needed to. My fingers barely even wanted to bend And in fact, at one point they actually had to inject my pointer finger just to get it to bend. It was awful, and after a year of failing different disease modifiers and having some bad reactions to a few of them And in fact I had a seizure Finally I just said you know what? Enough is enough. I want a different doctor. And so I transferred to a different dermatologist And automatically.

Speaker 1: 10:37

This one was amazing and everything was so different. I was listened to, he wanted to work with me about my care, and same with his PA. His PA was phenomenal The two of them. I just felt like a miracle happened. I finally had the help that I needed, but I continued to fail. Different drugs The methotrexate seemed to be helping, but not quite enough. So this is when they wanted to work on getting me into a biologic, and so once again, i go home and I research biologics, and that's fine.

Speaker 1: 11:13

You know, the first one didn't seem to do anything, and by then it is almost 2013. So I was diagnosed in 2012 with rheumatoid arthritis 2013. One after the next. They're just not working. Finally, i'm on one. It's wonderful, and I went into what felt like complete remission. Of course, it's medical remission, right, because they're giving you medications that put you there. That's fine, i'll take it. That was the end goal, right. But something was going wrong. I kept getting sick. If I even walked near someone that sneezed, i caught something, and my next couple of blood works just kept coming back. They didn't like my white blood count. They kept watching my white blood count and they just were not happy. And finally they said, okay, we're going to have to take you with all of this, your numbers are not getting better. And so they switched me to another one, and that is when I had the worst allergic reaction ever. I am allergic to TNF inhibitors and I had to find it out the hard way. So in 2017, i received an additional diagnosis of polymer planter postulosis psoriasis. Yes, that's mouthful And it's awful.

Speaker 1: 12:38

It is so painful, guys, i'm telling you. I get what looked like little dots on my skin, full of pus, full of fluid, and they burn and my hands start to itch And when they pop, it kind of feels a little better, but not at the same time, because I'm getting more And it feels very acidic, and the doctors described it as like a burn from the inside out, where, instead of touching boiling water and burning the top layer of skin, it's actually the skin underneath that looks like it's on fire And as these top layers come off, it's almost like you're seeing the burn. It's really strange, i'm telling you. I can't do it justice by trying to explain it, but it is painful and my hands and my feet feel like onions when I'm in a flare. We've gotten the rest of my body under control. My scalp no longer gets it, my legs don't get it anymore. Everywhere else is fine, it's just my hands and feet. So now I'm trying phototherapy, which is fabulous, and I love it. So far, all right. So, moving on, here we are. It's now 2023. And I'm living with rheumatoid arthritis and pulmonary plantar postulosis striasis rare type of striasis.

Speaker 1: 14:10

So, honestly, i felt overwhelmed and alone during those times of being diagnosed And that is what has made me passionate about answering, listening and virtually holding hands with others through some of the darkest and scariest times. That is why I created my Spoonie sisters, because I didn't want other people feeling the way I did And if we can at least find each other and chat about it and encourage one another. I'm all for it. So I partner with and I highlight women who are suffering from autoimmune diseases, rare diseases and disorders of all kinds, mental health and anxiety as well. I wanna celebrate these women. I want you to learn more about them and I want you to learn more about what they're dealing with, because you just might need to find someone that you get. They get you, and maybe you're newly diagnosed and you have questions. These are people that are going to answer your questions in heartbeat. So, like I said, i strive to be the support for newly diagnosed, struggling warriors, the way I desperately needed and did not have in the beginning of my journey.

Speaker 1: 15:26

For those with a chronic illness, our energy it fades faster. So we must be purposeful with the time allotted for each task And that's why we are Spoonies. So thank you, christine, miser and Dino for the Spoon Theory. That was such an awesome thing that she came up with with a friend when they were out to breakfast or lunch or whatever it was. I wouldn't have even thought of that, but she's a genius and I thank her for it. So, whether you're experienced or new, and the term Spoonie applies to you.

Speaker 1: 15:58

Grab your coffee or your tea and tune in, as my fellow Spoonie sisters worldwide And I share our stories and life hacks in living with chronic illness, but always remember to not forget your spoon. So all guests are on remension in this podcast will also be listed for your benefit. So be sure to leave a review and subscribe to my Spoonie sisters as well, and you can follow us on Instagram. We're on Facebook. We even have a group on Facebook. If you wanna join that And if you would like to be featured on my Spoonie sisters, please email me at myspooniesisters at gmailcom. We look forward to speaking and hearing from all of our sisters. All right, you take care and don't forget your spoon.