
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
The Power of Mail: Turning Chronic Illness into Advocacy
When life deals you a complicated hand of chronic illnesses, what do you do with it? For Erica Falco, the answer was clear – transform it into a mission of connection and hope for others walking similar paths.
At just 30 years old, this former elementary school teacher navigates a complex medical reality that includes stage 4 endometriosis (found throughout her body, even in her lungs), gastroparesis requiring a feeding tube, MCAS, POTS, Sjögren's, mitochondrial disease, and small fiber neuropathy. Yet instead of letting these conditions define her limits, Erica has channeled her experiences into creating beautiful moments of connection through her CareMail program.
The heartbeat of Erica's advocacy is sending cards, stickers, fidgets, and love notes to fellow "warriors" facing chronic illness, mental health challenges, or difficult circumstances. This simple act was born from her own hospital experiences, knowing how meaningful it is to receive something in the mail besides medical bills. The program has sparked touching connections, including daily email exchanges with an elderly woman who says Erica's correspondence has brought childlike joy back into her life after many difficult years.
Between managing medications through her feeding tube, attending multiple medical appointments, and navigating the challenges of healthcare systems that often dismiss complex patients, Erica finds small moments of joy through coloring, reading, and spending time with her beloved dog. Her advocacy is fueled by experiences with medical gaslighting and a desire to speak for those who struggle to advocate for themselves.
Looking ahead, Erica hopes to expand her reach, possibly through educational conferences and new social media platforms. "I want to minimize suffering because this world is so broken," she shares, highlighting her core motivation to ensure no one feels alone in their health struggles.
Want to support Erica's mission or request CareMail? Reach out to her on Instagram @ericaafal where she welcomes messages about your favorite colors, animals, and what might brighten your day during difficult times.
Delivering Happy Mail around the world!
We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.
Join our mission to send 100,000 cards of support to patients with long-term illnesses.
About our organization | Cards2warriors
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.
Let's Get Started - Rare Patient Voice
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Today we are joined by Erika Falco, a passionate chronic illness and disability advocate. At just 30 years old, erika has already lived through more than most people can imagine. She's a former teacher turned full-time advocate, living with multiple chronic illnesses, including stage 4 endometriosis, gastroparesis requiring a GJ tube, mcas, pots, sjogren's HEADS, mitochondrial disease, small fiber neuropathy and more. Despite the challenges, she's filled a vibrant life filled with creativity, connection and advocacy. One of Erica's most heartwarming projects is her Care Mail program, where she sends cards, stickers, fidgets and love notes to fellow warriors facing chronic illness, mental health and struggles or unimaginable circumstances. She also finds joy in reading, spending time with her dog and crafting with coloring and sticker-by-number projects. We're excited to hear Erica's story, her advocacy work and how she's turning her challenges into community and hope for others.
Speaker 2:Hello, hi, I'm happy to be here. Thanks for hosting.
Speaker 1:Yes, and I have two lovely co -hosts today. I have the lovely Stasha and the lovely Steve. Is it weird to call you lovely Steve?
Speaker 3:Not when your last name begins with lovelace.
Speaker 1:There you go. Well, hello everyone. I am excited for us to deep dive into the conversation. Erica, can you share a bit about your journey from being a teacher to becoming such a strong advocate in the chronic illness and disability space?
Speaker 2:Absolutely. I started my teaching journey back in 2017 when I graduated from my undergrad, which was Marist College it's now Marist University and I had my degree in special education and general education, specifically for grades first through sixth grade, and then I went on to Queens College and I got my master's in literacy, and that goes from birth through sixth grade. So I was able to teach for like eight to 10 years total and, with all of the different like schools that I've been in, I was mostly in one elementary school for like eight to 10 years total and with all of the different like schools that I've been in, I was mostly in one elementary school for like eight years and then another school for about a year, and then I dabbled in literacy for about a year, and then I've done like a lot of summer camps for, like preschoolers and stuff, which is why I was really interested in like getting them to read and things like that. But then, unfortunately, around the time of COVID and in 2020 ish it was like January about I started to get really sick with my chronic illnesses and kind of took my life in a different direction.
Speaker 2:So you know, when COVID hit, the endometriosis got really severe. I needed a lot of blood transfusions, iron infusions, and I was so sick. I was like 96 pounds, which is not a healthy weight for my body type, and just really really struggling. You know, I couldn't hold food down and I was bounced back and forth between the gastro and the gyno and you know how that is, and I was really struggling and I didn't have a diagnosis really yet until my second excision surgery where you know, pathology found that I had about 32 lesions of endometriosis found all the way up into my liver and gallbladder. It was actually also found in a biopsy that a pulmonologist did in my small airways, in my lungs. So it's crazy how that disease can just be widespread and you know it's insane. I actually just read an article about a girl who found it in her, in her like nasal cavity, which is insane, yeah.
Speaker 2:And then kind of all of my other chronic illnesses started to present themselves. I think you know, in 2021, I met with a neurologist who was kind of widespread in what he deals with. So I was diagnosed with the POTS, the MCAS, the Sjogren's, my mitochondrial disease. He did some genetic testing and we found the progressive mitochondrial disease that causes muscular dystrophy and all of that. Yeah, now you know, life looks a little different from teaching until now, but I kind of use my teaching to spark the creativity online. And now you know, I'm learning how to do videos. I'm not the best at it, but you know, practice makes perfect and I'm kind of working with what I got and I really want to help others and not make them suffer as much as I had, to make their journey a little bit lighter and easier.
Speaker 1:I wanted to bring this up because there is something that you and I both work on together and we support giant microbes, which is perfect for anyone in the education realm, because how fun is that. I wish I had one on me. Oh, I do, I do. I have this. One is a skin cell. These are a fun way to educate people about all kinds of things. It can be anything. My grandson loves, the dinosaur bones, anything from that to there's.
Speaker 2:There's antibody, there's oxytocin.
Speaker 1:Blood cells.
Speaker 2:We could go for.
Speaker 1:IBS. Yeah, but it's such a fun way to educate people. My gosh, there she is. Look at those. Oh my god, they're so cute. I know, steve, we got to get you on board with this stuff.
Speaker 2:It's so much fun, it's a hoot, send us your address and we'll, and we'll, get you covered.
Speaker 3:I've seen you with these before and I've always been curious because you have so many. Yeah, very cool. I don't have the types of diseases that you guys do. Mine is a little bit different, but still there's some crossover.
Speaker 1:Yeah, absolutely, and I think you know, even despite that, there's still ways that you could utilize and have fun and educate people. And that's what is so fun about giant microbes they are just, they are fun and they are wanting to teach people things.
Speaker 2:So yeah, agreed, they have all the different types of stuff you live with multiple Mm-hmm, mm-hmm.
Speaker 1:The next thing I need to get is some earrings of some sort. I haven't decided which ones, but they have some really fun earrings. I just got the mug for the self-care day.
Speaker 2:It was in July, it was like July 26th around and has all of the different designs that they carry on like a white mug and it's so cute.
Speaker 1:Well, that's fun.
Speaker 2:Their team is creative, yeah, anyway, this is not an ad, we just happen to like that this is not an ad, but the podcast may be sponsored by these little cute giant microbes.
Speaker 1:So you live with multiple chronic conditions. How did your diagnostic journey, with everything you manage, from forts to feeding tubes, to monitoring your blood sugars? What does a day in the life look like for you? I know that's a big question.
Speaker 2:I guess I'll start by. Every day looks different depending on like which symptom is presenting itself like more fully. I wake up generally a little later than others, so even like a 12 o'clock podcast recording is early. Like I tend to make all my appointments like late afternoon or even mid afternoon and then I'm a night owl. I'm up like until like 3 am. I like to sleep because my ME-CFS is just wild and I can't wake up for the life of me. I wake up.
Speaker 2:I pretty much have all of my medications set up like they're pre-made in my like nice, beautiful color-coded case and then I have to just add some water and dissolve them, crush them sometimes, and then administer through the J portion of my feeding tube. You also have the option to do it through a G, but I just feel better if it's not my stomach, because that's the part of my body that's paralyzed. So I do it through the jejunum and then, after I finish meds I pick out a cute feeding tube tubie pad that goes with my outfit for the day. It doesn't always have to match, but I like it too. I either call the pharmacist or go to a doctor's appointment, or I have two to three appointments built in as maintenance care pretty much every day, and I use Mondays and Wednesdays as doctors that I haven't been able to get in for a while.
Speaker 2:And then you know Thursday's PT and Friday is music therapy and Saturday is hyperbaric. So, yeah, I get home, maybe around 4, 4.30. Saturday is hyperbaric, so, yeah, I get home, maybe around 4, 4.30. Really like to see what I get in the mail, because sometimes people write back from my care mail and that's always special. I'll get to showering, I'll do my nightly meds and yeah, and then I'll pretty much relax for the night, either with a good book, a nice comfort show, or I like to do a lot of arts and crafts. My favorite right now has been like an adult coloring book and those markers that are viral, that are really fun. So yeah, and then I cuddle with my dog and we call it a day.
Speaker 1:I don't think it's near me, but I think something you need in your little toolkit is those stickers that you color yourself. I think I need those.
Speaker 2:I think I might need those.
Speaker 1:It'd be fun for you to attach to your mail your happy mail that you send out.
Speaker 2:Yes, I think they would even love if, like it, colored some and like, stuck it on the envelope, or even just gave them a strip and they will color it for themselves.
Speaker 1:I will locate my book and I will send you some, because I have more than I could possibly ever need. Thanks, jen it. I have more than I could possibly ever need. Thanks, jen. It was actually one of my sweet friends on here that sent it to me. Steve is showing you what makes him happy.
Speaker 3:That's my golden doodle Shelby. Yeah, she's my constant companion and on the worst of days, man, she's always like right next to me. She doesn't like the thunder, so she's obviously a little closer today. But yeah, you mentioned your dog and they are so beneficial for anybody that's going through chronic illness, having something like that.
Speaker 1:Absolutely, and Shelby is the cutest, sweetest thing.
Speaker 3:There was a. It was a television show back in the eighties, I think it was Family Ties. At the end of that show the guy would say sit, ubu, sit, and the dog would bark that was his dog. I guess I always remember that because I've just always been a dog fan. I brought every stray home in the neighborhood. When I was a kid my mom would be washing dishes. She would see a dog in the backyard. I was here, stay. I would have to come running, get dog out of here.
Speaker 1:I can really picture this.
Speaker 3:Yeah, so I've been. I've not been without a dog since I graduated college.
Speaker 2:Yeah, I don't think I could ever go without a dog. I mean my dog, my old poodle. He passed away when I was in high school and I cried the whole weekend. So on Monday we we got a new dog. I just couldn't do it. I was a mess and I just love them so much.
Speaker 1:I don't have a dog anymore. My husband is a cat person, but I grew up with both dogs and cats. Oh, who is that?
Speaker 3:I realized that she had skin issues. She was a Sharpay and a Drake Pyrenees mix and the Sharpay caused her to have all kinds of yeast infections. We had her on prednisone for a long period of time trying to fight all that off and finally it just got to the point where she was so miserable and I was miserable for her. I put her down and I didn't even realize the day that I put her down was my mom's birthday. So now every year that comes around, but you know I still have her with me here in my office.
Speaker 2:So yeah anyway, my dog pal passed three days before my high school graduation. It was the perfect storm and just terrible. I was devastated. We got Cooper right before my like senior banquet. When he was a puppy he chewed all over my new, brand new heels. I had to get a new pair because his bite marks were like all in it. But he's so worth it. And he's 12 now and he still got like. He still has the energy of like a brand new puzzle.
Speaker 1:Yeah, I miss Alani all the time and I drove my husband crazy because after we had to have her put down, I insisted we had to go look at cats, and it was not even a week later. We found Callie. And Callie is quite unique If anyone's ever seen me post pictures of my cats. Quite unique If anyone's ever seen me post pictures of my cats. She is small, with midget legs, a stunted tail. She's cross-eyed and she jewels when she's happy. I can't even make this up. She's the weirdest cat I've ever seen or heard of, but I love her. I'm here for your entertainment. Hey, stasha, why don't you chime in on all this? We're talking pets, so tell us all about yours.
Speaker 4:Yeah, we've got a couple of cats that we rescued last year that are a lot of fun. They definitely keep me entertained. My little striped guy is really notoriously always into trouble, so he's a lot of fun, and his brother will just sit there and watch him from afar. So I can usually tell which direction Aslan is up to antics by spotting his brother Yule.
Speaker 1:I love when you send me pictures or videos. I actually challenge you to post more of those in your stories. I think us animal people would really love it.
Speaker 4:It's a good idea.
Speaker 1:I'm always full of ideas If you ever need anything. If you ever need an idea, just call me. I'm always full of ideas. If you ever need anything, if you ever need an idea, just call me. I'm here for you. Every single person out there remember Jen has ideas. So, Erica, your CareMail program. It's a beautiful way to support other people. What inspired you to start doing this and what kind of impact have you seen it make for others.
Speaker 2:I was inspired by other people's, I guess, like their sectors of like care mail that I've received and I know that coming home from a long hospital admission and getting things in the mail other than medical bills are just the best and just made me so happy and uplifted and just I felt cared and loved and I know like throughout this journey it can feel isolating and lonely and I felt all of those emotions and I started it because I knew that other people needed that uplifting that I did when you know, I was in like the worst season of my life and it's nice to give back in the way that I was given to during like the rough parts of my health journey and I like getting things even other than stickers.
Speaker 2:I like stickers and fidgets and just the love cards and anything that can fit inside of an envelope. I feel like the person needs more than that. Then I'll bring all the supplies to the post office and I'll get one of those bubble wraps or even small boxes and I'll put a little bit more in there. It depends on the circumstance and what they need. But yeah, I really I was inspired by other people because I know there are so many programs out there, like Warrior Card Swap that I do and Cards to Warriors. So I was inspired by their programs to kind of do my own.
Speaker 1:Yeah, you and I both participated in both of those for quite a while. And while I still do both of those, I like to send my own happy mail too, because it's just fun to get something other than bills and junk in the mail. I know Steve's nodding because he's got medical bills coming up the wazoo right now. Wow, because he just had a heart attack and his son had an injury. I mean, we can't even make up the craziness that happened to Steve recently.
Speaker 3:And I had my issue as well, sliced it open.
Speaker 1:Yep, steve's been a little bit through it have one, you're just prone to getting others.
Speaker 3:Your body's just, you know, fighting all that inflammation, fighting all this stuff, and you just get so beat down, so weak, that they just tend to add up. So I just keep looking for the next thing to pop up that you know they're going to diagnose me with, and just hopefully it won't get any worse. I just kind of take it all in stride, much like you, so I admire you for it.
Speaker 2:Thank you. I wonder why all of our illnesses come out so profoundly in our teeth, because you said for you it was 20. I was 24 years old, I was almost 20. And that was when I was at my sickest point. I would say, but I wonder if it's a swap in the hormones or what is it that, like the dormancy of all these things, kind of come out around that.
Speaker 3:I mean, maybe it's because we're coming to that ending part of our growth period right, where your body's just doing all these crazy things growing up. My, you know my height leveled off in my early 20s. My body stopped changing in my early 20s, so maybe there's something to do with that, hormonally speaking.
Speaker 1:I've heard doctors and even rheumatologists talk about it before. This was explained to me too, because I started having symptoms when I was 30 years old, but no official diagnoses as far as like my RA or anything like that, until I was 32. I'm realistic with myself. I had a horrible endometriosis in my 20s. Ultimately, I had to have a hysterectomy when I was 26 years old. Not ideal, but it was the cards I was dealt. What they had told me at the time was a traumatic event can trigger these in our bodies. That's all it takes One, just tragic. It could be a surgery, it could be a car accident. They just explained that. Any traumatic thing happening to your body and all of a sudden, something that's hiding their dormants. Here you are.
Speaker 3:Yeah, wow, yeah. And a lot of it starts like there was something about early childhood trauma and how that affects you later in life. With respect to that, I was abused by my father, so that could have been, you know, one of the triggering mechanisms that that I had to deal with. Plus, I was suffered with abandonment issues as well when he left. But yeah, I think it just makes you stronger when you battle all these things. It's not ideal to have to deal with all the diseases, but it makes us stronger than the general population. I believe we're more resilient to the way life treats us. You know, on down the road, Absolutely.
Speaker 2:I feel like I have something I've also dealt with my sorry. I've also dealt with abandonment issues and things like that. Not from well, my father and mother split up when I was 10, but because he had an alcohol problem and there was some cheating involved. But I, you know friends have left me in this journey and you know I do have some like attachment issues of that kind and you know abandonment issues are real issues of that kind and you know abandonment issues are real and you know I just want to, you know, acknowledge that because you know I don't think that it helped my chronic illnesses having that. You know I wanted to bring that to the surface because I also deal with the abandonment issues.
Speaker 3:Yeah, I think as a result of mine, I can't remember any one single relationship that I ever walked away from. As a result, I would stick it out like a pit bull holding on to a button, I mean.
Speaker 2:I'm me too. Me too, I'm the same way.
Speaker 3:Good, better and different. I try to make the most of it, and I think a lot of people are like that, and I become a collector of things as a result of that as well. Just, you know, my little little world of this is mine and I don't want to let it go, so I just keep getting more and more like coins and bikes. I collect bikes as well.
Speaker 1:I think it's important for people to realize too. And then it can look like different things. It's not always apparent. It can be friendships, it can be uh, somebody thought you were going to be spending your life with, and there's other things that can come into play. There can be abuse. I don't know where I'm going with this, but it all kind of can be a nasty soup working together against us. There's something to be said for mental, emotional and physical abuse and how that comes out in our bodies eventually.
Speaker 4:Personally, I found that the abandonment issues that I suffered as a child led to a lot of self-abandonment too, and honestly, I think that for me is part of that avalanche that helped to trigger the hidden disease in my DNA. Because Because, as I was coming of age, I was dealing with all of the things that had happened to me up to that point and I think it really that stress all coming to a head with the hormonal changes and everything. I think that's kind of what tipped it over the edge, I feel like. But then going forward, I had never been good at don't know how to take care of yourself and you don't prioritize yourself because abandonment is just natural once that's what you've had ingrained in your psyche, right. So for me, I've had to uncover all of that before I could move forward in really getting to the bottom of what's going to make me feel better. All the medications in the world I don't think would have saved me without figuring out the abandonment piece.
Speaker 3:Yeah, I fell victim to a lot of self-sabotage almost kind of what you're describing, where I wouldn't intentionally hurt myself but I wouldn't walk away from a situation where I knew I was going to get hurt, right, so I would just go ahead head first into it. And it wasn't until I realized that that I started to kind of come back full circle and started to love myself, started to love my life and figure out that it's not all that bad and I still need to take care of myself. But there's still that inkling, and maybe it's just from, you know, the abuse or the abandonment or just the combination thereof. So, yeah, just be aware of that and love on yourself. Trust me, this is that positive aspect that Erica mentioned initially.
Speaker 1:I think this episode is taking a turn. I didn't expect, but I see the value in it, because how many times do you hear people talking about this kind of stuff, especially in episodes? A lot of times we're coming, like Steve and I have talked about before, bringing the rainbows and butterflies and the positivity, because that's what we want to bring to people. We want to bring encouragement, but it's okay and it's healthy to talk about the dark and the hard too. They're very real things. I always encourage everyone to deal with it as best as you can. I think each of us have in our own ways, but we've lived through hard things. These hard things make us the people that we are today. I see incredible people in front of me.
Speaker 3:We are all fighters. Best advice I ever got from a therapist was don't dwell on your misery all day long. Give it its time. Give it 20 minutes, give it 10, give it 30, whatever. Then shut the book and get on with your day, but don't let it haunt you, because you know I always say this it's a boat anchor right. It will hold you back and you'll get nowhere in life. So yeah give it its time, yeah.
Speaker 2:Wise wise words. I didn't know how much I needed that quote from you today, steve, but I really did. Good, good.
Speaker 2:I'm glad I've been stuck in like a little bit of you know a hard circumstance. That just happened and it was a big misunderstanding and I just keep thinking about it and it's preventing me from sleeping and it's giving me all this anxiety. It's okay to designate time to be in it and think about it, but then shut the book and then go on with your day and don't make it your entire day. My therapist also said you can schedule time for it where you're thinking about it, but then make space and time for other things and don't just let it consume you Absolutely.
Speaker 1:Not only is it taking away from good things in your day, but it's all consuming. That's not healthy on your body either, because then we have things like loss of appetite, loss of sleep. Stress is not a good thing. We don't need our cortisol levels skyrocketing on top of everything we already deal with.
Speaker 2:Exactly.
Speaker 1:Now I imagine sending these little pieces of joy has a ripple effect. Has there been a moment or message from a recipient that really stuck with you? Oh my gosh.
Speaker 2:Yes, like too many. But if I had to like give the like, glimmery ones are the most memorable. They're all memorable. I just want everybody to know that every card that I get or everything that I send, they're so meaningful to me. I'm so grateful for these relationships that I've built through this whole program.
Speaker 2:A woman named Rain and I email back and forth because she said she doesn't love technology and she wants to take a step back. So we email every day, giving each other like a little update about how we are and what's going on in our lives. Rain said that she hasn't gotten this type of joy in many, many, many years. I think she's in her fees. She shared what's making her feel like a little kid again years I think she's in her fees. She shared what's making her feel like a little kid again, and now she even got involved deeper with the warrior card swap. She's now part of their oops or oh crew.
Speaker 2:If somebody forgets to send a letter or can't for a medical reason or whatever reason, she's now a volunteer for them. She steps in and she'll send a card to those who haven't received it. I'm just like, wow, yeah. And then another. I sent out a bear with a feeding tube to a mother and a daughter who's battling gastroparesis. The amount of love that I got back from the daughter, scarlett and her mother, it was so, so kind. I'm actually wearing the mail that she gave back to me. It says I love a Tubi and she sent me this bracelet and her and her whole family and all of her friends that support Scarlett in her battle with gastroparesis they all wear one, so happy to rep it. It's something that I battle with every day. So, yeah, it's been really heartwarming this mail program.
Speaker 1:I love that and it's special when you get letters like that, whether it be in your email or a physical one or in your Instagram. It's so heartwarming and fills our cup, and I think that's why so many people like to do it is because it fills you. It's bringing you that joy that we're looking for. Advocacy can sometimes be heavy. What keeps you motivated to keep showing up for the chronic illness community?
Speaker 2:I guess it's all the pushback that I receive in my medical care. You know, doctors that gaslight me and ones that haven't taken me seriously, all of those plethora of experiences that I oh hospital right, I get an attending that like doesn't know about my chronic illness. That is awful and terrible and like it's trying to make decisions off of a textbook patient. That really irks me and I like to advocate for those who may not even have a voice to do it back. I'm in a Bible study with a lot of persons with several palsy that don't have the ability to speak besides a speaking device for them, and I want to be that voice for the voiceless. I really want to help those. It's okay to advocate and ask for things in your care that you know helps you. But I've learned, because you know your mouth and words are powerful, got to do it in a nice way, can't come off too strong either. You got, you know words are like honey and you got to say it in a direct way, but not in a way that I guess is going to be harmful, in a way that's going to be helpful. But you know, on the things that are going to help your care, like for me.
Speaker 2:I just did it with a new physical therapist. I wanted a continuity of my care from one that I worked with for four years and she didn't want to do that for me. So she's not my fit, right. She was refusing to tape my back and didn't think Kinesio tape was warranted and I was like what? So that's just bizarre, right? Like I have HEDS and my joints come in and out, and so I always say that it's okay to advocate, but try to do so in a way that it's going to come across but also nicely. You know, and I've learned that that's the best way to approach it. I couldn't say it any better than you. I think I just word vomited. But thank you, oh no no, I appreciate it.
Speaker 1:What dreams or projects are you excited about right now, either in your advocacy or your Care Mail program? What's up next for you for the rest of 2025 and even 2026? Wow, I know that's big right.
Speaker 2:I'm not sure I thought that far ahead, as I take day by day, but I guess, some dreams and aspirations is to expand my work with some of the affiliate and ambassador work that I do online. So, whether it be with giant microbes and doing some fun things with that perhaps doing a giveaway or, you know, volunteering at a fair or even conference where it's educating about one of my diseases I really want to do something like that and I want to. I want to reach more people. I want to maybe even get a TikTok and reach that chronic, chronically ill and disabled community.
Speaker 2:I want to keep making videos and, you know, and disabled community. I want to keep making videos and, you know, expand the people that I'm reaching to and just hope that. I want to help people. I want to minimize the suffering because this world is so broken and, like every day, you know, I turn on the news and it's just something else, one after one after the other, happening. I want people to know that I'm there for them and I support them and that they're not alone. And I know that a lot of populations are targeted, especially the chronically ill and disabled, and I really want to let them know that I'm here for them and reach more people.
Speaker 1:I think you're going to do it. I hope that somebody listening right now can put you in touch with the right people to help propel you and keep you going in the work that you want to do so. I'm going to call out our listeners right now. If there is a way that you know that you can help her get more involved, reach out to Erica. She will be so happy to hear from you. Yes, I now want to open this up to Stasia and Steve and see if either of you have any questions.
Speaker 3:You know I recently started my advocacy work as well with my disease and much like what you said. You know they gaslight you Nobody. The funny thing about my disease is nobody's ever heard of it, even through the medical community. It's very, very rare that anybody goes oh wow, I haven't heard of it. It's called arachnoiditis. It's killing me right now. My foot is. If you see me wiggling, it's because all my pain is in my right foot and it's hurting me so bad right now because of the weather. The barometric pressure always kind of messes with me. But, like you, I'm trying to get the word out there about the disease, to get people on board with it, because the more people know about it, the better off we're all going to be, because we can actually unite around the common cause to try to educate people and try to get to the forefront, get it to the main. So I really I admire your effort and yeah, I'm trying to do the same. I just haven't been doing it as long as you probably.
Speaker 2:Yeah, I pretty much started advocating I want to say around 2019, 2020, when I first started getting sick on Instagram and the focus was mainly endometriosis. But I've started to advocate for more of like gastroparesis and things that are more prevalent in my life right now, because I'm on a medication every three months like an injection, that kind of masks my endo, so I feel more compelled to sharing like about GP and like small fiber neuropathy and HEDS and mitochondrial disease that are like at the forefront. But I think you know, steve, that you know you coming on even to socials and educating people that way because, like you said, doctors don't even know about your condition most of the time. I think you know getting patients to know about it is also important because there might be a patient out there that has the same thing as you and can offer like ways to help you. I think that's even more important than getting, than educating the doctor sometimes.
Speaker 3:Yeah yeah. I started a podcast shortly after I did one with Jen here and the Spoonie sisters. I had said that I was going to start a podcast and I kept thinking and thinking about it and finally I did, and it's the only one that's geared towards arachnoiditis that's out there right now. That's just how you know underrepresented it is, and I have a co-host that also has the disease.
Speaker 3:We would love to have you on because we do all chronic illness and all these positive patient stories. We'd love to get your story out there at some point in time.
Speaker 2:Thank you so much. I think podcasts have been. You know how. Jen asked me what my goals and dreams are for the rest of 2025. I'd like to keep finding these beautiful podcasts that hold the space for me to speak on my chronic illnesses, but not only my story, the hard stuff that nobody wants to talk about. I would love to get onto more podcasts, so that would be an honor, Steve.
Speaker 3:Awesome. It's called Arachnoiditis Unfiltered, and we don't candy coat anything, we just lay it all out there. It's just a conversation, much like we're having right now Start from with a question and just kind of flow. Jen's going to be my co-host as well. From time to time we kind of bounce back and forth between each other's podcasts. So they're a lot of fun and you raise a lot of good awareness through them.
Speaker 2:That's so nice. I love that.
Speaker 1:I think Steve and I have several contacts we can put you in touch with too. There's so many good podcasts out there about chronic illness, and everyone has a different spin. I'm sure Steve and I will both put you in contact with more, because if that's what you want to do for the rest of 2025, let's make it happen.
Speaker 4:You mentioned that you try to keep a positive attitude and also some of the things that you struggle with with your health care and battling the medical system, as those with chronic illness often do. I'm just curious what practices do you have in your day to day to help you keep a positive attitude?
Speaker 2:That's such a good question. I don't know if I ever have been asked that, not even by a therapist. So, stasia, you are going in a great direction. Yay, stasia. So yeah, she's hired.
Speaker 2:If anything happens with my current modality, stasia, you know let's exchange numbers, okay, so every night before, like falling asleep, I have this five minute journal that I was gifted from Christmas of 23. And I was so sick at that point that I didn't pick it up. And now I'm using it. And it's true, if you write down like five good things that happened and something that you would like to see happen, and then five things that you hope will happen in like your next day, I just have noticed like such a big difference. And I have to say, like when I'm in the depths of despair, like in a really bad mental health day, I'm not picking up that journal. But and it's so funny you only pick it up when you're having like a good day. But I'm trying to use it like more often the night, like the night before. Then I go to sleep and then what I really like it's like what are you working for? And I'll I'll put a little mantra there Like my body is getting better every single day. I am getting stronger every single day and even if that's not true, I want my body to take that in, you know, because I really want my body as strong as it can be despite all the limitations.
Speaker 2:I also really like regular talk therapy. I do that every two weeks and my therapist is a chronic illness specialist. I also do music therapy. I don't know if you guys know about this program, but I do want to shout it out. It's called the Melodic Caring Project. It's really for like younger, like younger persons to, I would say, the young adult age. But you know it doesn't discriminate based on age. So I'm sure, if any one of you want to join, it's open.
Speaker 2:And I work one-on-one with a music therapist like this, you know, over the phone, and she could play the piano, she can play the guitar, she can sing, and whatever you're in the mood for, whatever type of music genre you want for that day, she'll perform it. And I'll just say, hey, I need some uplifting today, I need some Forrest Frank. That man is incredible, and so she'll do that for me. Or if I want Taylor Swift, she'll perform that. So it's those modalities that keep me going and I would see my too, like you know, reaching out to them and seeing how they're doing and sending my mail at least a couple times a week. All of that, I guess, contributes to like the attitude I have towards the day.
Speaker 4:I love that. That's really great answer. I'm a journaler too.
Speaker 2:So I think journaling is hard, so I commend you for that.
Speaker 3:Yeah, I tell you what. These journals are cheap. I get them on Amazon. They're not. They're not lined, they're dotted, just kind of get to you can days. I mean, you know the rough days. Sometimes you can't avoid jotting down what happened to you right, how you got through it. That's that 30 minute time that you just want to put it in there. But for the most part, you know it's all positive, it's very, it's just a great release, yeah. So I highly encourage everybody to buy a cheap journal and just doodle, write a couple of words, write a couple of sentences, a couple of paragraphs.
Speaker 2:I have some followers that even like get journals to put stickers in. I think that's so cool. Or junk journaling now is trendy and that's cool. You can save your movie ticket, your receipt and like make the page pretty like a scrapbook, Like. I want to try that. That's also in the cards for 2025. So let's add that to the list.
Speaker 3:There you go.
Speaker 1:I have a really hard time with journaling, so my journaling comes out as poetry. And I started doing this when I was 14 years old in literature class, because we did a poetry section and I really got into it and I loved it. And so all these years that's what I do, is I write what I'm going through, my thoughts, my feelings, in poetry, because otherwise if I'm trying to journal, my mind kind of meanders all over the place and I go all kinds of rabbit trails. So if you have a hard time, like me, I encourage you to consider doing something like poetry.
Speaker 2:I find poetry hard. I was never good at it, you know. And they expect the elementary school teacher to be like good at the poetry. I find poetry hard. I was never good at it, you know, and they expect the elementary school teacher to be like good at the poetry. I don't know, I wasn't that great at it, but I guess poetry doesn't always have to be rhyming right. It could just be like whatever style fits you.
Speaker 1:Exactly, and there's so many styles. I love free verse because there's no rhyme or reason to it. It's just your thoughts and you can try to make it beautiful or you can keep it simple. It's really up to you and, at the end of the day, not everyone's going to see my poetry, so it doesn't need to be perfect Exactly. All right, this is the big question for you. How can our listeners best support you and get involved with your CareMail program? Okay, so right now.
Speaker 2:I had a Google form, but something happened with the original Google form, so I'm planning on. This is my restart. I'll make the Google form, probably today, so look out for the Google form. But if you don't see the Google form or if you have technical difficulties with the Google form as I'm making a new one because the other one was closed DM me on my Instagram at Erica E-R-I-C-A-A, f-a-l, f-a-l.
Speaker 2:Erica Fowl no spaces, other symbols. Just DM me. Tell me what's going on. Tell me what your favorite colors are. Tell me what your favorite animal is. Tell me if you like fidgets. Tell me if you like stickers. Just tell me a little bit about you and I will send it in the mail as fast as the next business day. I love doing this for you guys and if you don't have Instagram, I could give Jen my email as well. You can email me or Facebook DM me. I could give that to you as well. I will provide all that information and don't hesitate, because I know reaching out for help is a little uncomfortable, but I'm here for you and I love to do this. It's my pleasure really to do it for you. Do you accept donations? So right now I'm not a 401c, but I have had people ask me what I need for my mail and I made an Amazon list. So, yeah, that would be great, but not necessary.
Speaker 1:Perfect, and I know you know anything is welcome when it comes to these things. Even if somebody wanted to send you some stamps, I'm sure that would be welcomed. Oh my gosh.
Speaker 2:Yes, stamps are so expensive these days, so I will always happily accept stamps.
Speaker 1:Well, thank you for your time. I know that the three of us have really enjoyed speaking with you today and I'm excited for listeners to hear more about you and how they can get involved. Thank you so much. All right, well, until next time. Everyone don't forget your spoon.
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