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
Mind Over Misery Part1
Chronic illness transforms not just our bodies, but our entire emotional landscape. What happens when persistent physical pain collides with mental health? How do we find joy when our bodies seem determined to hold us back?
"Mind Over Misery" brings together a diverse panel of chronic illness warriors who open up about the rarely discussed emotional sides of their health journeys. From polymyositis and lupus to arachnoiditis and complex regional pain syndrome, these guests navigate vastly different diagnoses but share remarkably similar emotional challenges.
The conversation begins with a profound exploration of grief – not as something to rush through, but as an intentional process essential for healing. As one guest powerfully frames it: "The level of pain needs to be matched by the level of intentionality." We hear how each person navigated the devastating loss of their former self and discovered unexpected gifts amid their suffering.
As the discussion deepens, our guests share their personal toolkits for maintaining emotional equilibrium during symptom flares. From the endorphin rush of gentle movement to the comfort of loyal pets, these practical strategies showcase the resourcefulness chronic illness demands. Most striking is their collective wisdom about balancing optimism with honesty – finding ways to acknowledge suffering authentically while still nurturing hope and resilience.
What emerges is a masterclass in transforming adversity into growth. Rather than pursuing toxic positivity, these warriors demonstrate something more nuanced: a hard-won ability to embrace both the darkness of chronic illness and the light of who they've become because of it. As one guest reflects, "I am thankful for my illnesses because they've made me a better person."
Whether you're battling health challenges yourself or supporting someone who is, this episode provides invaluable insight into cultivating resilience when your body feels like it's betraying you. Ready to discover how to develop the mental fortitude that chronic illness demands? Listen now and walk away with strategies that can transform your relationship with pain.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Welcome back to my Spoonie Sisters podcast. This is a powerful episode of Mind Over Misery. Today we are diving into the emotional side of chronic illness, the mental health struggles we don't always talk about and the resilience it takes to keep going. Grab your favorite cozy drink and join our panel as we unpack grief, growth and the mindset shifts that help us rise above the misery. Thank you all for joining. Thanks for having me.
Speaker 2:Thank you so much.
Speaker 1:Thank you. If your chronic illness had a theme song, what would it be Right?
Speaker 2:away REO Speedwagon. Roll the Changes.
Speaker 1:Excellent, that's a great one.
Speaker 3:I'm going to have to go with Bon Jovi's Living on a Prayer.
Speaker 4:Another good one.
Speaker 3:That's great Yep with.
Speaker 4:Bon Jovi's Living on a Prayer Another good one. That's great. Yep. Scott Stapp, who was the lead singer for Creed, went out on his own and he did an album. After his recovery from a drug addiction. He wrote a song called Purpose for Pain, and that's my theme song.
Speaker 1:Oh, okay, you've got to listen to it. I will, and Lisa how about you?
Speaker 3:I don't know the original singers, but it's Keep on Truckin', baby Ooh.
Speaker 1:Now I don't know if this would necessarily be my theme song, but I did a video I guess a parody to a Green Day song not long ago I don't know if any of you saw it and I kind of changed the lyrics around and of course I'm going to have a mind blank on what the song is.
Speaker 2:If I remember, I'll let you all know, but I love Green Day, among many others. I'm going to ask you all one more Describe your chronic illness using only emojis. You know the two masks for theater dramatically dramatic, differently, different expressions, and that's what it's like. There are stark contrasts in the journey.
Speaker 1:Would you use any other emojis?
Speaker 2:The next reply is this I'd pick them all because crying feeling sometimes unstoppable. For example, I recently had a breakthrough after working on healing one particular trauma from going through surgeries one, two and three and that's made me feel. Lately I've been able to tap into some new energy. But virtually every emotion is in the mix.
Speaker 3:Yeah.
Speaker 4:I like that You're coming up with some good ones. Yeah, mine's gonna be stepping on a nail with electricity going through it.
Speaker 1:I'm feeling it right now actually I hope we're gonna be a distraction for you oh yeah, and when I get my pizza, for sure.
Speaker 3:Definitely, definitely, praying hands, because I'm constantly reaching out to whosoever out there Spirit, dangers, whatever can help me. And then hearts and, like Stasha said, sprinkles of magic, glitter, stars. And then also, like Rick said, the sad emoji, the frustrated emoji, the crying emoji. So I think it's all of them.
Speaker 1:I actually pulled up my most used emojis and I figured I'd share those with you all, because that probably just goes with me, right, right. So I have the one where you're smiling but it looks like sweat's coming down. I use that one a lot with people I don't know why, smiling, but it looks like sweat's coming down. I use that one a lot with people, I don't know why. I use the melting one where you kind of have this weird face on look on your face and you're melting into the ground. I use that one quite often. That's my way of saying I'm not doing so great, but I'm trying. The one where you have your face plant I use that one.
Speaker 1:Tears, I have some happy things in there too. I have some happy things in there too. I've got flowers, palm trees, strawberry. I like to talk about food a lot. I hope that helped loosen us all up a little bit before we dive into these deeper questions. The first one is living with chronic illness often means grieving the life we once had. How have you navigated that emotional journey? What helped you the most in making peace with your new normal?
Speaker 2:I'm always ready.
Speaker 1:Okay.
Speaker 2:And I mean this in a positive way. It's because I live it every day. And for those of you who don't know me, surgery number seven on my left knee all started from a football injury in the last game of my senior high school football season. Surgeries one, two and three back before I was 20. I had a fully arthritic knee four, five and six in my late season and in 2019, surgery seven, which has left me my knee in a state of trauma. I experienced, for my baseline pain, a dozen or two instant flashes of pain, generally in the six to 10 range, and so it's a daily thing. I haven't found any relief. I live it daily. I've got answers to questions and I've made it a passion. I felt really strongly that I've got to prepare myself and get answers to questions, to survive and thrive in my own unique way. So part of the answer to the question about grieving is to be fully intentional. Fully intentional.
Speaker 2:One of the things I learned through surgeries four, five and six is that the level of pain needs to be matched by the level of intentionality. I'm a lion of intentionality in so many ways in my life. I look at grieving as something to do very deliberately because so much good comes from it. I practice probably every day some measure of good grief and I'll conclude with this thought, because this is a powerful question. We could spend the whole afternoon talking about it. I found that the benefits of grieving and in doing it very intentionally, found that the benefits of grieving, and doing it very intentionally, brings about a lowering of cortisol stress. It lowers the pain. So I know what it's like not to do it and the pain that comes from that.
Speaker 1:I think that's so true, thank you Hi.
Speaker 4:So for me, my journey started back in 1982 when I had my accident. It took me years of suffering to get a diagnosis. In fact, my diagnosis came in 2014. And when I read the MRI report, it said arachnoiditis and all these other things that I knew, with the exception of arachnoiditis. I started diving in doing my research and life got dark. It was very tough because it's such a rare disease and when your neurosurgeon comes in, gives you the diagnosis and he hangs his head and shakes it and says I'm sorry, you know you're in for hell, but I'm so resilient because of everything that I've been through in my life.
Speaker 4:It didn't take long for me to recover from that and as I did my research, there was very little on the internet back then about arachnoiditis. There's much more now. There are groups on Facebook and I resigned myself to try to become the face of the disease, which it has no face. I have quite the story to tell. As you know, I played a part in sports history and that kind of put me on the map.
Speaker 4:I've been telling my story on podcasts and just the other night actually Tuesday I was on a call with four other gentlemen that have the same disease. It's called brothers in arachnoiditis, and they all agreed with me that we need a face and I would be a good one. So I'm not looking for the attention, but I am trying to put forth an effort to show people that there's life without medication, even though you have one of the most painful diseases. I suffer daily, but I have good days, bad days and survival days. The good and the bad days I take advantage, I make life happen, I push through the pain and I tell you what I'll be 63 this summer. I've suffered since I was 20, but I feel better than ever. So I've really come to terms with it and I embrace it now.
Speaker 2:It's intentionality in action right there. Thank you, yeah.
Speaker 1:And, honestly, what I think is there's a lot of groups out there that women get part of right To talk about chronic illness and chronic pain and all that, but I think there needs to be more options for men out there. You deserve some guys to talk to.
Speaker 4:Men in general aren't really good at sharing their feelings, so maybe that's why. But yeah, I found this group and it's really helped. It's something I look forward to every week. Talking to these guys, I've made four fast friends and when you have something like that in your life to look forward to on an ongoing basis, it makes such a difference, such a difference.
Speaker 3:I think that, definitely, when I was first diagnosed, which was in 2004, I sat with that for a long time and you know and aggrieved my plans, went over my plans for my life. What was I? You know, my whole thought pattern had changed and getting used to that plan, the new normal, the different plan. Then I started doing research on how am I going to manage this? Can I manage it holistically? Can I manage it only with Eastern and Western medicine options? Can I get on meeting people?
Speaker 3:Of course, having a spiritual life, staying working would be important to me with any capacity, just being in life. I think those things helped. And of course, I think exercise, to any level, any, I don't know if it's 10 minutes a day and you're just walking, you know, on the treadmill, on one, moving your body somehow, is really good for the mind or mind-body connection, and so I keep that way. Of course, diet, which is never fun, the anti-inflammatory diet is not the most exciting, but it does work and that's why holidays are hard. It's kind of heartbreaking in the beginning and in the middle. I mean you just can't do what you used to do, but then you become grateful for what you can do, I think each of us have similarities in our stories and our grieving process, but then we have the differences, especially having different illnesses.
Speaker 1:Right, I look back and when I was first diagnosed, I was almost 32, raising three middle school age kids, and I did. I grieved hard because I thought, wow, I'm so young, I shouldn't be living this life. But I also wasn't thinking about the fact that I was going to learn a whole new thing. I was going to learn that these illnesses, they affect all ages. There's no rhyme or reason, but I am so thankful for who it's made me out to be. I wouldn't change a thing, as crazy as that might sound to people. I am thankful for my illnesses because they've made me a better person. They've made me more loving, compassionate. I'm checking in and embracing other people in a way I don't think I would have done, and so I'm glad I walked out of that grieving pit that I was sitting in, thinking my life was over, because it's not. Look at all the amazing people I've met. I've met awesome people, like all of you, and I wouldn't change a thing because of it.
Speaker 2:I applaud you. You're reminding me of a song, jen. The lyrics go something like I'm thankful for the scars, for without them I wouldn't know my heart. I forget who it by. You can sort of interpret that or apply different words to it. I do the same thing I'm thankful for all 13 scars. I wouldn't know who I am today without all that I've gone through.
Speaker 1:Maybe that needs to be my new theme song Now. I got so excited to talk to all of you that I just drove us directly in, but I think I didn't take the time to let each of you tell each other what it is you live with.
Speaker 2:So the doctors after a sensitive surgery number seven on my left knee in 2019, it was a partial revision of a total knee replacement from 20 years before and at first, revision of a total knee replacement from 20 years before and at first they diagnosed me with complex regional pain syndrome. Working with a pain management doctor last year, he believes we've ruled that out. Last week I saw a doctor. I thought I would never talk to the kind of doctor about options that I never thought I'd consider it's amputation, that I never thought I'd consider it's amputation, and, based on the conversation, there are a few things I'm going to look into before going further down that path.
Speaker 2:But it's those random blasts of instant agony over time. Over the past five plus years now, there are over 20 pain sensations that I experience, most of them instant agony, and I never know when each next one is coming. So I live with this. I think starting with the conversation about grief is the place to begin. I don't think I'm a resilience coach. I've been a caregiver for over 20 years and a lot of people think of grief as painful and grieving as painful, when in fact that's not the actual pain.
Speaker 2:That's I believe I've found in researching it. That's, it's processing what is painful. The pain is from what we lose. We talked about just now what we lost in terms of our former selves and how we're blessed with who we are and this growth of character. There's a lot to live with and there's a book to each of us can write. I'm writing the book on the methodology that I use for resilience and that I help people with, called Plan to Be your Best as you navigate pain. In a way and here's my concluding thought for your wonderful question Thank you for this time I'll never actually stop writing the book because I've got to continuously tell my story and express what I'm going through.
Speaker 1:I think that's powerful. It's going to help support someone out there. Someone needs to hear your voice. Thank, you.
Speaker 3:Thank you. In 2004, I was diagnosed with polymyositis and then, about maybe six years later, lupus showed up. I think it was always there, but it became more prevalent. So yeah, so lupus and polymyositis.
Speaker 1:What role has mental health support, such as things like therapy, support groups or even medication, played in your chronic illness journey?
Speaker 2:It's been absolutely foundational, it's been essential. I know what it's like to not have it, such as when I went through the first three surgeries and recovering from those, as well as the. I was not prepared. I found that, even though we go into each of our journeys not fully prepared, it's never too late to become able. And becoming able includes being really deliberate about mental health, identifying and understanding the patterns of thoughts and feelings that we have, validating them and expressing them. And mental health for me means not going it alone. There are. I have a counselor that I've had for years that gives me an opportunity to do everything from what I just described identifying, understanding, validating, even letting me lament, because lamenting I look at and I experience it as a level, a level to get to another level, to express it. So mental health is a it's necessary. It's also the keys to being resilient, finding each of our own unique resilience and finding our own unique ways of thriving Driving. Thank you.
Speaker 4:I never really sought out mental health help, Though I needed it. A long time ago I started subscribing to the philosophy of stoicism. It was born out of a Greek philosopher named Epictetus. He basically said everything in life is a choice the way you react to somebody in line behind you that gets angry and your reaction is your choice. You don't have to react. You don't have to have that knee-jerk reactions, Knowing that.
Speaker 4:I chose to be happy despite the fact that I suffer immensely, Like right now. Sitting in this car seat is like sitting in an electric chair. Cars are very hard for me, but I choose to put a smile on my face despite the pain. I recently went through a divorce. My disease was so tough on my family around me my wife ended up leaving and she filed for divorce two years later. But I chose to have a good relationship with her to show my kids that you don't have to be bitter and angry because somebody loved you for 20 years and they decided to leave. We're still good friends. She's remarried.
Speaker 4:The first soccer game, when I met her new husband, I approached him, extended my hand, said Hi, I'm Steve Lovelace, I'm the ex-husband and I want to have a good blended family. So let's get together, let's have a beer. It was my choice, and he came over to the house the other day. First thing he did was walk up with a smile and shake my hand and asked me how I was doing. So the choices we make matter. I choose to be happy, I choose to be positive, because being positive is so hard to do in today's society. But again, it comes down to what Steve wants on the inside and how he wants to reflect to the world outside. So that's how I deal with it.
Speaker 3:I definitely have talked with different types of therapists or people that can help. You know, in the beginning more so and a lot of research on my own of tips and tricks that would help me get through the times when you know I had already had appointments in the rest of the week. You know, in the beginning, where you just have some idle time, there's definitely transformative things that they can help. You know therapists can help you with and I also think good friends, truly good friends, that you talk with, that understand your situation. It's very important.
Speaker 3:Family can sometimes, you know, give you a different outlook than you might be seeing for yourself because they know you so well. I think it's important to have a good attitude, like Steve said, I mean to be as happy as you can. None of us know really when our expiration date is on this earth, whether you have an illness, an autoimmune and autoimmune whatever it may be or not, and there is no way to know that you know. So living each day as happy as you can is a lot nicer than living depressed, sad, mad, angry. Thank you.
Speaker 1:I agree with all of you so much. You're just blowing me away with your answers on all these questions and I have been counseling over the years. I've even tried betterhelpcom Totally recommend that to people that are looking for an easy on the go option. A lot of podcasts out there offer codes for like a free trial for a week, and that's how I did it. It's great because you can actually do it through an app or you can do it by text or phone or email. Just it's to your preference, right? That's why I liked it so much.
Speaker 1:And having that core group of people that you trust and feel comfortable with, there's nothing that can replace that. It is important to have those people that you can go to and say I'm a mess today, I'm struggling, you know, maybe it's because your body's in pain, or maybe just struggling emotionally, for whatever reason. Having those people that can kind of reframe our thoughts, redirect where we're going, that's just not something we can replace. It's something so important in my life. All right, our next question when symptoms flare or you hit a mental low, what are some tools or even rituals that you lean on to protect your emotional well-being?
Speaker 2:We've talked about the three steps of resilience. It's the first component of the plan to be your best method and the steps are to tune in. Second is to plan and third, be your best. They're basically three relatively simple steps, but what you do in each one matters tremendously. I can tell from what Steve shared. It sounds like what and this is very true with the people that practice this.
Speaker 2:When I practice it, it builds the resilience toolkit things that you can go to and rely on for, as Steve put it, making choices and then being your best, following through. It's in that plan step that you create a list of options and make the choices. Be your best is following through on it, and some people and I'm able to most of the time, rip through these three steps to quickly realize what I'm experiencing, how I'm reacting to it, make a choice and then follow through. He keeps repeatedly probably ripping through it very quickly and making that choice.
Speaker 2:Some of the things in my resilience toolkit, for example, are along the same lines, where I'll get to making statements such as this is all a part of my amazing life journey or my best days are ahead of me, which I wholeheartedly mean Sometimes getting there, especially if because I experience probably being in the pit a couple of times a week, especially this past year, this past winter, when my baseline pain was about three to four times normal for a couple of months, doing some grieving, good grief, every day. It's part of those three steps always getting to that point. So it's those steps that I've found have been to use your words, stasia. I think it was central, it works and it's something that you can practice and rely on.
Speaker 1:I'm glad that you shared about that, rick, and for the rest of you, if you haven't heard his podcast episode or about his resilience toolkit, ask either him or I. We can send it to you, share that with you. I think that's definitely a helpful tool.
Speaker 4:I'm flaring right now and obviously I can still laugh despite the immense pain. I'm like at an eight or nine. The thing that helps me the most is this girl right here, right, Thank you.
Speaker 4:Thank you, yes, absolutely yes, absolutely like I said, my girl shelbo um she, when I, when I'm flaring, she knows it. She's right under my feet, she's rarely a foot away and because all my pain is focused in my right foot, I rarely have a shoe on but I always have a sock on. She's right underneath me and I rub my foot on her and it does not bother her at all. I think it comforts her just as much as it does. But that's the one most comforting thing that I do when I'm flaring and my flares will last for two, three days straight at level 10, no sleep, especially when storms move through.
Speaker 4:I take no pills other than a prednisone, maybe to preempt a storm moving through, because it affects the CSF pressure which sends me into a flare-up. So that's really about it. Other than that, on my days where I'm just kind of hurting you know, between a five and a seven I'm on my bike. It's truly the only time that I'm pain-free and I think the endorphins are probably the best painkillers of all. I always get that post-ride high from a ride or a walk and that helps probably more than anything.
Speaker 3:That's powerful. Well, on the bad flare days, sometimes you just need to say, okay, I'm going to commit to being in bed for a day or two and have some meals either brought to you or whatever. Sometimes you're not even hungry and I just okay, I'm going to get stronger, I'm going to get better, and this is how it's going to help. But, you know, in the medium flares I will like Steve, I think the endorphins there's not. If it's a yoga class, it's. If it's walking on the treadmill, taking a walk outside, now it's, you know, for the weather is nice, even just for a short time. Listening to birds, nature, affirmations, for sure.
Speaker 3:Something else I do that I started early on in my diagnosis. I don't know. I think one of my therapists had mentioned them and they're called angel cards. They're really cool and they're by Doreen Virtue, d-o-r-e-e-n. Virtue. She's also an author of a couple books, I believe, and she has several different decks. And you know, you can sit in bed and ask am I going to get out of this flare? And it'll give you what that angel wants you to hear. And sometimes they're so spot on. It freaks me out, but they're really cool, angel cards.
Speaker 1:There are waves of time where I feel like I'm symptom free. Those are my favorite times. I think if any of us have ever had that, those are our favorite times. But lately I am noticing more and more inflammation and pain. I'm also having a really bad psoriasis breakout on just my hands right now nowhere else, which I guess that's a plus. But I did some recent blood work for the rheumatologist and my inflammation markers came back skyrocketed and I was like, wow, no wonder, no wonder.
Speaker 1:I really don't want to get out and do the walking and do the things that I normally like to. It's beautiful and it's warm. So finally, yesterday I looked at my mother-in-law and I said do you want to go on a walk with me? She said, yes, Okay, great, she walks slow anyway, so that's the perfect pace for me when I'm like this. But it's exactly what you guys are talking about Getting out there and getting those endorphins and getting moving. Even when it's hard and even when we're skyrocketed inflammation, it's worth it at the end of the day, even if I don't want to. The next question there's a lot of pressure in our community to stay positive and some of us, like Steve, we want to look for the positive right, and I'm that way too, but sometimes it's hard. How do you balance the optimism with honoring the hard days as well?
Speaker 2:This is another way to use the three steps of resilience. For example, there have been times when people ask so how are you? And especially if it's in a certain groups where the honesty is not the honesty is expected, it's like how are you really, is the question. Sometimes people will, if I say I'm okay, that they will say no. No, you shouldn't say that this is how you need to answer that question, with nothing but positivity and so forth. I've seen that multiple times and I've also seen how people have a difficult time reacting or they show that they're having difficulty being with someone in pain.
Speaker 2:There's a wonderful piece in the New York Times about a year and a half ago around Christmas time, I think it was 2023, where we're talking about pain, all wrong, and it made the point about everything from stigmas to people having a difficult time caring for people with pain or sickness. As we all know, sometimes people say the same thing, the wrong thing. So I practice using three steps of resilience in the way that I answer questions such as how are you? I will be honest, I will honor what I'm actually experiencing, but also in a way that illustrates and models my resilience. For example, you've heard me say that my baseline pain was about three or four times higher this past winter. I'll go ahead and acknowledge that and how difficult it was.
Speaker 2:One of the things that I did now I'm moving into the plan step. One of the things that I've done is more work on making sure that I'm expressing myself in multiple ways enough so that I'm validating and understanding what I'm experiencing and then making the choice to then tap into one of the 25 different things in my resilience toolkit. And now I keep following through on that over and over again so that I'm able to get to that point where I can say it's all part of my amazing life story or my best days are ahead of me.
Speaker 1:Again, such a good nugget. I could listen to you for hours, thank you, you guys are blowing me away over here.
Speaker 4:Yeah, I mean, I'm always positive, I'm always laughing. I did a podcast the other day and I was talking about everything that I've been through. I was abandoned as a child at four years old. I was abused by the father that abandoned me. My mom nearly died. I got shipped off to my grandparents, I mean I could go on and on.
Speaker 4:I just figured out that I'm good at suffering and I am just. I always have a smile on my face. I was always kind of the class clown back in the day and I'm still that guy to this day. Even when I'm in my worst, I can still laugh. When the sharpest pain hits me, I laugh through it.
Speaker 4:But I will say that there are times when I need to commiserate with other people that suffer, because you can only hold so much in before that emotional dam starts to break on you. So I'll go on to an arachnoiditis forum and I'll just look for somebody that's going through the same thing that I'm going through, and that's the only time that I really feel like I can be honest with the suffering that I'm dealing with. But it's very cathartic to do that. It's helpful, and it remains closed off in that society of other people that suffer through what I suffer through, and that's the way I want it, because I don't want that.
Speaker 4:Well, I did put something on Facebook the other day what arachnoiditis looks like. I was having a very bad flare. I rarely talk about my disease on my Facebook page, but I put it out to the world. I wanted people to know that. You know the positive, steve, that you see, these are some of the days that you don't see, but I don't do it for attention. I don't do it for your pity or for your misery. Ask me how I'm doing and I'll always say I'm doing good despite having a bad day. Because again it goes back to that Stoic philosophy it's a choice for me to be happy, to be positive, and I want to inspire others that may be suffering similarly that you don't have to be miserable because you broke a finger or you stubbed a toe or you got a diagnosis that you weren't expecting. Embrace it. It's part of your life and you can't move forward without it.
Speaker 1:Absolutely, absolutely, absolutely.
Speaker 2:If.
Speaker 4:I may.
Speaker 2:It's wonderful to hear what you're sharing, steve. You use the word suffer and I've found I'm a communications professional and so I can nerd out on words. There's one definition of the word suffer, which means to allow, and sometimes it's the way we frame it, such as I can tell you are. There is the hard part of suffering, but there's also that part where we allow in a way and not fight it Trade, the fight for flow, so to speak.
Speaker 4:Growth through suffering right and, as an FYI, my phone's at 8% when I drop off. I won't be able to get back on. It's been a pleasure, though, and I really appreciate the opportunity, janet.
Speaker 1:Absolutely, and I think, steve and Rick, I need to connect the two of you.
Speaker 4:Yeah, absolutely Please.
Speaker 1:I really appreciate each of you taking the time out. I think it's an important topic that people want to hear about.
Speaker 3:There's definitely a pity party in there, but not long Doesn't. But not long doesn't last long like why me? You know the whole thing. But but then I look and you know the kids look at one of my kids, will call and be like man, you know, I got a cold. What's? What's the regimen? You know just the kids, you know. I mean, I think the kids give you purpose. My husband, who I love, you know so much purpose to take care of him too during this time. He has a bit of a health crisis right now. So it's a little role reversal, but I think love. When I sit back and think of how much love is in my life, I'm like so grateful.
Speaker 1:Yeah, yeah, absolutely. And how special that feels right.
Speaker 3:Right, and how special that feels, right, right, you know, I think you and I talked about this on our podcast, or maybe it was MS disrupted. When you get a diagnosis and you realize, okay, you got a new normal, suddenly the stars and the moon at night look different, right. You have a different appreciation for the flowers. When you're taking a walk, you have a different appreciation, right. So love or having a dog or a pet or a cat, you know, it just takes on a new meaning.
Speaker 1:It absolutely does. I have two cats that want to spend all their cuddle time with me. There's something to be said with having pets and people around us. I think sometimes, at the end of the day, that's what helps keep us going. Yes, I don't really accept a lot of pressure within the community. If people try to give me pressure, good for you. I usually don't accept it. The pressure that's the problem is the pressure I put on myself.
Speaker 1:I'm very, very lucky to be surrounded by people that are saying Jenny, why are you doing this to yourself? You're already doing so much. How much of yourself can you give Andy, one of the co-hosts? She says Jenny, you are giving of yourself to strangers. Do you realize you do that? You come before these strangers and it's a good point. But at the end of the day, that's just who I am. I love being there for other people and supporting other people. That's kind of hard to change. I got to just lessen the pressure on myself. All of you for being here. This has been phenomenal. It was great to bring back some of my favorite guests. I love each of you and it was fun to do this roundtable together. Until next time, don't forget your spoon.
