Episoder
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Joining us on this very special episode is attorney Bradley Thomas, an SSDI and Disability attorney from Texas. We know how complex and difficult the path to SSDI and Disability can be, and we went to an expert to give good advice and direction for anyone facing the eventuality that they can no longer work in the ways that they used to.
This episode is an essential listen for anyone with chronic illness.
And like always, we enjoy your feedback, so jump on into our group discussions on our Facebook page. It's a place where you can always go to find that grace or community you need.
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy. We also now offer a monthly version!!
Have a great week, everyone!
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What do you actually know about Lyme Disease? Yes, it comes from a tick bite. Yes, it can make you very ill. And yes, it's a long-term chronic illness that can be extremely debilitating.
Jean Marie Hatton joins us on this episode to talk about her experience with Lyme and how it has impacted her life. We learn about how easy it is to get, and how many times you can miss the signs (hint: only a small percentage of people get the tell-tale rash from the tick bite).
So sit back and enjoy the episode. You'll feel more knowledgeable afterward (and maybe check yourself more often for ticks...).
And like always, we enjoy your feedback, so jump on into our group discussions on our Facebook page. It's a place where you can always go to find that grace or community you need.
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy. We also now offer a monthly version!!
Have a great week, everyone!
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Mangler du episoder?
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Not all chronic illness diagnoses are straightforward. In fact, most of our roads to diagnosis are uphill, winding, and treacherous. Nikki Fordey joins us on this episode to discuss her own path to being diagnosed as well as how her EDS has impacted her overall life--something any Spoonie can relate to.
And like always, we enjoy your feedback, so jump on into our group discussions on our Facebook page. It's a place where you can always go to find that grace or community you need.
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy. We also now offer a monthly version!!
Have a great week, everyone!
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Narcolepsy is a chronic disorder that is highly misunderstood by most people. It's not just people dropping off and falling asleep at a moment's notice. There are many other nuances to the disease, and on this episode we speak with Morgan Berliner about Narcolepsy, how she was diagnosed, and how the chronic illness affects her life.
And like always, we enjoy your feedback, so jump on into our group discussions on our Facebook page. It's a place where you can always go to find that grace or community you need.
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy. We also now offer a monthly version!!
Have a great week, everyone!
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We are joined by a special guest, Madison Corley, from The Endo Resistance Project and The Sour Collective Magazine to discuss something that affects millions of women around the world: Endometriosis.
Often misunderstood and underdiagnosed, Endometriosis is a painful disease that Madison has struggled with most of her life. It is a full-body disease that too many medical professionals write off as something else like anxiety or just menstrual cramps.
Yet endometriosis affects women in increasingly detrimental ways. And with changes in the laws covering our bodily autonomy, this disease brings up not only medical questions, but legal ones, too.
So join us for this discussion. And don't forget to check out Madison on The Sour Collective website or on TikTok at EndoResistance or TheSourCollective.
Also, make sure you grab The Chronic Spoonful Life Planner. We now offer a monthly version for just $11!!
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The Arthritis Dietician, Cristina Montoya, is back to discuss with us how our diet can have a significant effect on how we feel. We talk about different foods, and how even if we think something might be anti-inflammatory, it may or may not be for each of us on an individual level.
Cristina also tells us about her new program, that she just finished Beta testing, and how it can benefit those with chronic illness--offering them a better relationship with food.
Join us for this enlightening discussion!
And like always, we enjoy your feedback, so jump on into our group discussions on our Facebook page. It's a place where you can always go to find that grace or community you need.
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy.
Have a great week, everyone!
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This week we discuss the New Year, and what that means. Resolutions that fail? A new start? Or just the same old you, different day? We know the New Year isn't the easiest for us with chronic illnesses, and Spoonies have to be careful about setting unreasonable expectations for January.
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You wanted a holiday episode full of brightness and so much cheerfulness? This is a chronic illness podcast, after all! We bring the real to you, and the real deal is that the holiday season is tough stuff, especially for Spoonies. So this week we're talking about how it's okay to not be okay with the holidays.
Yes, it's okay to cringe at Christmas caroling. It's okay to dread the dreidel. It's okay to go to sleep before that midnight countdown on New Years'. Our bodies are our priority, and this time of year tests our bodies, minds and souls.
So, no, we're not going to do an episode on ways you can make your heart grow three sizes. You can find those "good cheer" podcasts everywhere. This episode is about being okay where you are with who you are this season. It's about getting through these next few weeks until January 2nd when we can all breath again.
Oh, and we know we've been gone for a bit. We address that, too. Did we mention we're being real? Yeah, because things have been a bit real for us, too. So, thanks for standing by and thanks for joining in again. We appreciate all of you!
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Diet culture has always been around, but it seems to be hitting new highs as of late. In the Spoonie community, we don't have a stronger armor against the bombardment of diet culture. Actually, with our doctors and health professionals always telling us to be healthier about what we eat, how we exercise, etc., we can often succumb to these fad diets or "quick fixes" more easily.
This week we discuss why diet culture is actually toxic to the chronic illness community, and we need to focus more on our health rather than diets. That quick fixes and fad diets aren't our friends.
And like always, join our group discussions on our Facebook page. It's a place where you can always go to find that grace or community you need.
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy.
Have a great week, everyone!
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Chronic illnesses aren't just made up of diseases of the body, but also disorders of the mind. Somehow we forget to include mental illness in our list of chronic illnesses from time to time. Well, not today. On this episode we get the privilege of talking to special guest, Peyton Garland, the author of Not So By Myself, and a fellow Spoonie living with Obsessive Compulsive Disorder--or OCD.
We get the opportunity to explore the ins and outs of OCD with Peyton from what it actually means to have OCD, how the term has been co-opted by Type A people, and the many ways it can impact a person's life.
Peyton also shares her story of how she discovered she had OCD and why that discovery changed everything for her. She also talks about how her illness made her feel isolated and alone, and what she did to overcome some of those feelings (including writing a book!).
Oh, and don't mind a couple little jaunts off the beaten path of what we should have been talking about. It's podcasting...you never know what you're going to get!
So join us for this awesome discussion with Peyton. We're excited to share it with you.
And like always, join our group discussions on our Facebook page. It's a place where you can always go to find that grace or community you need.
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy.
Have a great week, everyone!
And have a great week everyone!
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Here's the gist of this very special episode...yes, we talk abortion on this episode. No, we don't debate abortion on this episode. How is that? Well, as you know by now, we respect everyone's opinions here. This podcast is a NO JUDGEMENT ZONE. So when we decided to do an episode to talk about how the Texas abortion law would impact Spoonies, we knew we had to not debate the right or wrong of abortion itself. We are just going to talk about the law and what it means for someone with chronic illness. Period.
And yes, we know this will be a hard episode for die-hard pro-life folks. We get you. However, there are deeper impacts legally that just pregnancies and fetuses and maternal health. It impacts and entire legal and health system...and that impacts anyone with chronic illness in huge ways. We have to talk about this law. So, it's okay if you want to sit this one out. We respect that, because we respect that you believe what you believe, and abortion discussions are insanely emotional for people.
This decision to do this episode wasn't one we took lightly. We know abortion is so controversial. However, not discussing something that impacts Spoonies because it might upset some people or lose us listeners or get us some hate mail...well that was unacceptable to us. We're here to talk about living with chronic illness, and this law could impact a part of many of your lives (and potentially the rest of us as other states adopt this law or laws like it).
So we moved forward and tried to give the discussion the utmost respect it deserved with the least amount of judgement for either side of the abortion debate. Our focus really tried to stay on the law. And so we ask, and we say this in bold, that you refrain from debating abortion in the comments here, on Facebook or on any of our social media. We will delete inappropriate, harmful, hateful, or hurtful comments, period. We're not debating abortion. We're talking about the law and the law only. Again, let's keep this a respectful zone. Honor one another and the struggles we go through.
With all that being said...we hope you listen with an open heart and mind.
Thank you all for supporting us, being kind, and we do wish you a good week!
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It's amazing to us how many people don't know that they have certain rights when they walk into the door of a medical facility. We shouldn't be shocked. It's not like anyone went out of their way to make sure you or any of the rest of us knew we had them. They didn't. We think there may have been some blips on the news about the Patients' Bill of Rights, but that's about it.
However, these rights are essential for Spoonies to know. We can't tell you how many times we're in our groups online and someone tells us about a disrespectful doctor or how they received a treatment that was contraindicated with something they were already on. They had no idea they could refuse treatment, or that they had a right to respect in a medical facility.
But you do have rights. You have a lot of them, and these doctors, nurses, other care staff and the administrators need to respect them. IT IS THE LAW.
Whew, we get really heated when we talk about this, because it gets under our craw when we feel our fellow Spoonies are being mistreated. The Patients' Bill of Rights was designed to protect you and ensure you would get proper and equal treatment. So on this week's episode we go over each aspect of the law and what you have a right to expect. We lay it out in detail.
And let us tell you, it's no short episode, but it's an essential one. You might need to take a break, take some notes, whatever you need to do. But don't miss this episode.
And like always, share your stories and advice on our Facebook page. We'd love to hear your insight!
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy.
Have a great week, everyone!
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Try doing a Google search for Best Places to live when you have a chronic illness, and you'll get a bevy of articles listing out where to live. Top ten lists, top five...even top 100. All of them outlining why their list is best, and they know what's right for you. But when it comes to best places to live for Spoonies, there's only a few things that matter--and a lot of the time those things are highly individual.
On this episode, we discuss where some of these lists got things right, and where you need to take the lists with a grain of salt. We look at how each person might find places that are on the tops of these lists problematic, but where they might really like those areas. We also outline what you should consider before a move and how you should consider a new city or state.
And we're sure there are going to be varied opinions on some of these top localities. There is local pride at stake in some cases, and also you all may have some great advice to share about places you've lived and why they work or don't work for fellow Spoonies. So post away on our Facebook page. We'd love to hear your insight!
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy.
Have a great week, everyone!
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When we say hobbies, what's the first thing that comes to mind? Yep, we knew it! That lady crafting away, right? But not all hobbies are craft related, and there is one out there for you! Hobbies can be an important part of a Spoonie's life, because they help reduce stress and keep us engaged. Yes, that sounds so cheerful of us, but studies do show they do the body good, and on this episode, we discuss why Spoonies need hobbies, what hobbies are good for Spoonies, and how you can share your hobbies with the group.
It sounds fluffy, we know. We're not going to be talking about creating origami birds (though totally valid hobby, by the way) or scrapbooking your pictures from eighth grade (oooh, braces! Fun times!). We're talking about what makes certain hobbies work for the chronic illness mind, body, and spirit. All the things we think get broken when we're diagnosed. Except, with hobbies, we can regain some of that back.
How? Download the episode and find out (yeah! teaser!!).
And then share your hobbies on our Facebook page. We'd love to hear what works for you. Share pictures of your crafts (YES! CRAFTS!), video games, swim achievements, stamp collections...whatever your hobby may be. You may inspire someone. Who knows?!?!
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy.
Have a great week, everyone!
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We know it seems weird that we're doing an episode on hygiene, but truthfully it's one of the most draining things on our daily spoons count that we could think of. Hygiene and chronic illness are two things that clash constantly in our daily lives, and we just take that clash for granted all the time--so we decided to talk about it.
After all, what does hygiene mean to you? In today's germaphobic world, the first thing that comes to mind is probably just washing your hands, right? Well, no...we're not doing an entire episode on washing our hands (but yes, it does come up. Covid protocols, after all!). Hygiene is a pretty broad topic, and things like showering, washing our hair, brushing our teeth...well, those are only the tip of the iceberg when it comes to giving out spoons each day of the week.
So on this episode we talk about different aspects of our hygiene and how we can help conserve spoons, what we should be focusing our spoons on, and what things we may not have been taking care of when it comes to hygiene that have been hidden hygiene killers all along! Oops.
Also remember to share your tips and tricks on how you conserve your spoons when it comes to hygiene in the comments or on our Facebook page. We welcome new ideas and our listeners and readers are always looking for help.
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy.
Have a great week, everyone!
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What's the last movie you saw where you said, "Wow! They totally portrayed that chronic illness right?" Okay, now...name a movie that isn't a documentary. Yeah, you have to really think, right? Chronic illness in entertainment is a thorn in most Spoonie's side, because we just don't always see ourselves portrayed properly on screen or on the page.
On this week's episode we talk about how we've been portrayed in entertainment over the years in various mediums. We discuss what movies and shows we think got it right, how they got it right, and why we think they got it right. We also talk about common flaws in the industry and why we think they continue to perpetuate these myths about our illnesses.
After all, aren't we tired of being used as silly tropes like the villain, the friend who dies of actually curable illnesses, or the sad disabled person?
However, we also get real about showing chronic illness on screen. Can it be shown realistically? When should it even be discussed?
We get into the writers room and how they should be looking at our chronic illness in real ways.
So let's take a little dive into chronic illness in entertainment, and maybe share a little about your take. Comment on your favorite portrayals, movies, etc. What have you seen that has worked or hasn't. We'd love to hear from you here or in the Facebook group!
We also encourage you to check out our My Chronic Spoonful Life Planner where you can track everything going on with your chronic illness. It comes in a downloadable form that you can print, a digital form you can use in apps like GoodNotes and Notability, or a quarterly hard copy.
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This week we talk about something we underestimate in our chronic illness lives - pets. We tend to focus on meds, therapies, cannabis, herbs...and anything we can put in or do to our bodies. However, studies after studies are coming out showing the benefits of pets for chronic illness patients.
So we're covering a wide range of topics when it comes to pets for chronic illness patients from service and support animals to our regular rescue pets. Many of us in the Spoonie community think the only potential we have for an animal in our lives is if we have a severe chronic illness that requires a service animal--but that simply isn't true.
We'll cover this week how it's possible for most of us with chronic illnesses to care for pets, even when our illnesses get bad or finances get tough. We'll also talk about how to find the right kind of pets for your needs, and what rights you have with what kinds of pets. For instance, what rights do you have with a service animal versus a support animal - and what's the difference between those anyhow??
Also, as promised in the episode, we're linking to some major national organizations below that can be helpful in getting you started on your pet-finding journey. However, you should also look locally for adoption efforts and any assistance in pet food banks or vaccination efforts. You can find those below.
And in the meantime, while we hug our podcast mascots (Calleigh and Finn want treats, but the vet says hugs are much better for them), you give love to your own pets and service animals. They are all deserving of love and respect for the unconditional love they give to us every day. And we would love, love, love to see your babies in the Facebook group and on Instagram. Let us fawn over them!!
Have a great week everyone
ASPCA
ADA National Network:
Laws & RegulationsClear the Shelters
PetSmart Foundation Spay & Neuter Clinics
Paws with a Cause (Service Dogs)
Assistance Dogs International
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This week we are so excited to have Suset Rosario on the show. Suset has Multiple Sclerosis and Fibromyalgia--quite the combo of chronic illnesses, right? But she doesn't let that get in the way of living her life as much as she can, and she doesn't let that get in the way of helping other Spoonies live their lives as best as they can, either.
We talk with Suset this week not just about her MS diagnosis and what MS is, but about the power of movement in the chronic illness community. She discusses how she works through the ups and downs of living with a chronic illness, and how she has vowed to help others. Her business, Resilient Flexibility, was founded to help those with chronic illness at any level move--even just a little. And to find freedom in those movements.
Join us for a vibrant and motivational discussion this week.
And check out Suset on Instagram at @healgirl, on her Youtube channel for some amazing tutorials, or book a private session with her.
- Se mer
