The Chronic Spoonful

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!  

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!

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!

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!

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!! 

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!

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.

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!

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!

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!  

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!

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!

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!

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!

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!

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.   

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 & Regulations Clear the Shelters PetSmart Foundation Spay & Neuter Clinics Paws with a Cause (Service Dogs) Assistance Dogs International

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.

It's the heart of summer, and there is no reason why you should have to be stuck at home while everyone else gets to go off on their travel adventures. Many people think once they get a chronic illness their days of travel are over. That's it. They're done. They are home bound and they'll never be able to achieve those bucket list travel dreams. Except you can, with a little more planning (okay, yes, always a little MORE with Spoonies, we get it) and maybe some adjustments. On this episode we discuss how you can make traveling a little easier for your spoonie life, and what things you need to think about before you go that maybe you didn't need to think about before. Some of it you may know, or you may even do already. You may even have some "aha" moments. And who knows, in our infinite Spoonie knowledge, we may have missed some things. (Us? NEVER!! Haha!).   What we hope you get out of this is the idea that you can still travel with chronic illness. You can still get out there and see the world, and enjoy more than your couch. We encourage you to also share your experiences in the Facebook group, because we are sure we didn't cover all aspects of traveling with chronic illness.  And as a reminder, you can still get the My Chronic Spoonful Life Planner in both the digital and quarterly hard copy versions. This planner will help you keep your Spoonie life in order so you can have all your info in one place! Have a great week everyone!

We all know about edibles - those gummies and cookies infused with THC and CBD. However, cannabis can go so much further and actually be incorporated into our diet in ways that can help us alleviate pain, decrease inflammation, and add vitamins and nutrients to our daily intake. That's why, in the third and final episode of our Cannabis and Chronic Illness Series, we're discussing cannabis and nutrition with Cristina Montoya, a registered dietician, who is also certified in cannabis nutrition. She talks with us about how we can go beyond what we know about ingesting cannabis, and how we can incorporate more of the plant in our diets. She explains how using cannabis in the kitchen can be easy and nutritious. Christina also has an AMAZING story of how she came to use cannabis in her food...it wasn't an easy choice for her at first. She also lives in Canada, so she explains the difference in being a cannabis user in Canada vs. the U.S., something we haven't discussed on other shows before.  Really, there was so much to talk about, we just couldn't stop talking. It was hard to end the show when we did!  We could've talked to Cristina for hours. If you'd like to visit Cristina's website, the Arthritis Dietician or enjoy her Instagram, we know you'll continue to learn so much more from her. We also hope you've enjoyed the Cannabis and Chronic Illness series, and with all the information we didn't get to, we're sure this won't be our only series on the topic. Let us know what you'd like to hear more about in the comments or join us in our discussion on our Facebook page. We'd love to hear from you!

Any experienced Spoonie will tell you that there is a level of frustration when it comes to getting relief from their symptoms or chronic pain. A lot of the time we can get some relief from our symptoms using traditional pharmaceuticals, physical therapy, food therapy, etc. However, a lot of research is beginning to show that CBD and THC can be keys to symptom and pain relief for people with chronic illnesses. On this week's episode we dive deeper into how cannabis can be used to relieve these symptoms that plague us. We welcome Holly Anderson, Administrator for the Medical Cannabis DIY Community. She discusses how cannabis, especially strains of CBD, have helped her overcome symptoms of her traumatic head injury--and how it's helping those around her. We dive deeper into the types of cannabis and CBD out there, how they can affect us, how we can combine strains, terpenes, and experiment to find what is our best combination for our situations. We also talk about how to find your community and your people when it comes to this new cannabis adventure we're on. Overcoming this stigma that we've created around cannabis can be the hardest part in getting started! So take a listen. And join us in the Facebook group to continue the discussion! If you want to go deeper and get started making your own medical cannabis, you can join the Medical Cannabis DIY Facebook group, or if you want to discuss more and ask questions before you even think about trying cannabis for your chronic illness, email us or join us in our private Facebook group to explore the issue further! Have a great week, everyone!

Are you all ready? We've only been hyping this cannabis series since the start of the podcast, and we're diving into it! We're totally excited to bring this to you! Our first guest in the series is Michael McGee. He's the founder of the Medical Cannabis DIY Community Group on Facebook. It's a patient-helping-patient group that comes together to help each other learn to save money by making their own cannabis capsules, tinctures, oils and edibles as well as learn about medical cannabis and how they can customize it to help themselves. On this episode, Michael shares his vast knowledge of cannabis that he has learned over the years, and why he developed this group. He also introduces people new to medical cannabis what cannabis is, the different strains, why terpenes can be just as important (if not more so) as what type of cannabis you're using, and how you can save money on your medical cannabis. Obviously, everyone, there is soooo much to be shared about cannabis and chronic illness, and how the herb can help many patients deal with things like chronic pain, fatigue, brain fog and more. So this is why we're bringing this to you in a series. We want to break through the myths, de-stigmatize using cannabis for medical needs especially, and help those that might be interested in trying something that has helped many patients. If you're interested in joining the group, you can find the Medical Cannabis DIY Facebook group here, and you can also find them on Instagram here. Have a good week, everyone!

How many spoons do you have? How many spoons do you spend on yourself? Not as many as you should, right? Just like everyone else, people with chronic illness can be prone to not setting healthy boundaries. Except when you have a chronic illness, those boundaries are more important than ever. On this week's episode, we talk about what boundaries are, and why they're so important. We also cover why they're just imperative for people with chronic illnesses--more so than for healthy people. And what would an episode be if we didn't offer up some advice right? So we go over how to set healthy boundaries--and we don't sugarcoat it like it's easy. We know this will be a difficult episode for many of you to listen to, so please come to the Facebook group to share your experiences--good or bad. Share your feelings, frustrations, successes. Ask for advice or even give some advice we may have missed on the episode. It's a community! Have a good week everyone! P.S. Also...don't forget to check out the My Chronic Spoonful Life Planner! It's a game changer for tracking your Spoonie life!

Oh, Lupus, you special autoimmune disease. Most people have heard of Lupus, but few know exactly what it is. That's because Lupus is great at mimicking so many other rheumatological diseases that it tends to be a unique experience for every patient. There are some tests for it, but those tests aren't the be-all-end-all for diagnosis. There's also the misconception that all Lupus patients die and can't live normal lives. Not true. So we end May with our Lupus Awareness Month episode, where we'll go through all the reasons Lupus is called the great imitator by the medical community and why it's so hard for Lupus patients to get a diagnosis and what it means once you are diagnosed. Since Nicole has spent the last 18 years with her diagnosis, she'll talk about the road to getting diagnosed, what treatments helped her and what other treatments are out there, and what it's like living with Lupus. And yes, there is a life to be lived even if you have Lupus.  We encourage everyone to take a listen, because Lupus often doesn't come alone. It comes in pairs with other disorders. So while you may not have Lupus, you may have one of the comorbidities that come with Lupus. Or you may have some of the signs that you have Lupus, too. Or maybe you have a friend who has Lupus and you want to know more. Like always, we thank you for listening. 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 good week everyone!

The road to chronic illness diagnosis is a winding, tricky, sticky, long and frustrating one. We aren't going to sugar coat it. Often we go a long time before we even get to a diagnosis, and by then we're already lost and exhausted. Then we have to continue on this road after our diagnosis of trying to navigate our illness. Those early days can be so confusing and full of a Pandora's box of emotions that overwhelm us. On this episode we try to be a bit like a GPS navigating our newbies to the chronic illness world through this road we're on. We'll go through all the things we've learned on our chronic illness travels. Sharing lessons we've learned, things we've gleaned from others, and share tips and tricks for making it to acceptance and learning to just live our best lives with our chronic illness. For those of you not-so-newbies, this episode will be a reminder of just how far you've come from those early days, and we encourage your to listen and then go to the Facebook group to share your experiences. And hey, you might pick up a tip or two along the way. The more we share, the more we grow. And as a reminder, we have the My Chronic Spoonful Life Planner available to help you organize your chronic illness life. It can help you track your daily progress, meal planning, blood pressure, blood sugar, water intake, exercise, doctor visits, insurance, and more. All the things we wish we didn't have to track--but we totally do. It's available in a digital format or a quarterly hard copy. For those of you entering the Johns-Hopkins Study Nicole was discussing, you can find out more information on it HERE. Also, if you're feeling anxious about all the post-pandemic openings, we do have an episode on how to manage that anxiety. You can listen to it HERE. Thanks again everyone for listening! Have a great week!!

This week we're diving deep into the world of Ehlers-Danlos Syndrome (or EDS) with Rachel Kamen--a life long EDS Warrior. May is EDS Awareness Month, so we thought it appropriate to devote an episode to discussing what EDS is, how it's diagnosed and how those of us who have EDS live our lives with the chronic illness. And why not talk to one of the biggest experts we know on EDS, because Rachel was diagnosed when she was just a child--something that doesn't always happen. EDS isn't an easy chronic illness to live with, since there are usually dislocations, bruisings, subluxations, digestive issues, and more to deal with (not that any of our illnesses are easy), and Rachel walks us through her journey. She's seen almost all of it plus hospitalizations, fighting for her own care, experimental procedures, and hope. She's seen hope even in dark times. We hope her story can be as informative and inspirational to you as it has been to us. Take some time to learn more about EDS, and share your thoughts on our Facebook page. Also, we have some AMAZING news!! We hit our 500th download this week!! Woohoo! As promised on the episode, we want to congratulate Gwen on being our custom t-shirt winner. We'll email her and let her know she won. So exciting. Congratulations Gwen.  In the meantime, we're cooking up our next giveaway. Time to get to 1,000 everyone!! And finally, as a reminder, don't forget to pick up your copy of the My Chronic Spoonful Life Planner. You can get the digital version that is compatible with your note taking apps like GoodNotes or Notability or a hardcopy, quarterly version here.

As people are getting vaccinated and the world is opening up, there's a whole lot of us that are suffering from what is being called post-pandemic anxiety. For people with chronic illness, this is even more prevalent, because we have so much more to consider with autoimmune issues, fatigue, physical limitations, and more. It's hard when the return to normal feels anything but normal, right? And what is "normal" now anyway? The questions just swirl around our heads, and it creates this anxiety about the future.  So we asked a professional to help us navigate all of this anxiety. Our special guest, Carrie Corby, LCSW, came on the show this week to answer our questions about how to deal with this post-pandemic anxiety--especially as it relates to those of us with chronic illnesses. We discuss how to calm all the voices in our heads. Carrie gives us proven techniques to calm us down when anxiety threatens to overwhelm us. She also gives us tools to help navigate a system that seems stacked against us as the world reopens. So take a listen! And, we heard your feedback on the My Chronic Spoonful Life planner. While we're still offering the quarterly planner in a printed and bound form here, we are also offering you more flexibility. You can now get the planner as printable sheets and a digital copy to upload into your favorite note taking app like GoodNotes or Notability. You can get the My Chronic Spoonful Life Planner in that form here! Now you can carry a digital copy with you anywhere. So easy and no longer limited to quarters!!

Summer...Summer...Summertiiime. When healthy people don their bathing suits, head to the beach, drink what they want, picnic and frolic with joy unfettered.  Meanwhile, Spoonies are going down their long checklist at home wondering if they can handle Summer at all. The answer to the question is...it depends. Whomp. Whomp. On this episode we discuss how people with chronic illnesses have to look at the summer a little differently than those who are healthy and what precautions we have to take. It's not that we can't enjoy Summer. We can if we prepare properly! Also, a reminder that the My Chronic Spoonful Life Planner is ready for purchase. It has everything you need to keep up on your chronic illness "stuff," like how you're feeling on daily basis, pain levels, blood pressure, exercise, doc appointments, and more! You can check it out HERE. Oh! And don't forget that when we reach 500 downloads we're giving away that custom tee!! We're getting closer! So keep telling your friends and family to download the episodes, but also sign up for our email list. It's super easy. Sign up here! And you get the bonus freebie of the prescription tracker! Woohoo!! Alright everyone! Enjoy your week!

We're in a time when a lot of us Spoonies may be in that lump of people looking for jobs right now, and trying to find a job when we have a chronic illness is not the same as when you are a healthy person. There are just a few things we need to consider and things we need to know. So of course we decided to do an episode on it (are you shocked. We think you should be shocked. Ha!). So on this episode we discuss everything from what you should do before you start searching for a job, where you can find jobs that fit your needs, what to put on a resume and cover letter (and what not to), and how to manage the interview. My Chronic Spoonful Planner is LIVE Also, we're so excited to announce the launch of the My Chronic Spoonful Life Planner!!! Months of planning (haha, pun not intended) went into this, and we're hoping it is super helpful to all of you. It has all the things we think you'll need to keep your Spoonie life in order. It's one planner to rule them all - how you feel every day, your med tracking, meal planning, food tracking, exercise tracking, doctor appointments and outcomes, medical history, and more. You can check it out HERE. If you want a taste of it, you can sign up for our email list and get FREE prescription tracker:  Also, use the discount code SPOONIE to get 20% off, because we want feedback. This is our first edition, so let us know what we need to add, shrink, etc. One more thing...when we reach 500 downloads, we'll be giving away a one-of-a-kind tee. So, tell your friends and family. We'll choose from our email list, so remember to sign up on our website! And as promised, here are the job search and resume sites we mentioned on the podcast: FlexJobs Virtual Vocations Indeed (and you can check Remote) LinkedIn Canva (for resume design) CVConnect Have a good week, everyone!    

This week's episode deals with a subject that could, if you know anything about migraines, go down into a dark, dark hole. But our guest, Lauren Fairbanks from the "Enjoy the Journey" podcast, never lets it get there.  Lauren has a perspective on her chronic migraines--a disease that has plagued her since childhood--that many of us can find inspiring and uplifting. It's unique and one that we can all take a little away from, and in the end you can't help but feel a little more joy in your spirit. So join us this week as we learn things about migraines you never knew (really, there is some crazy stuff about migraines that Lauren shares that made us go, "Whaaaaat?), and maybe make your day a little brigher. Also, if you made it this far in the show notes, we have a special pre-announcement for you since our editor (*cough**cough* Nicole!) could not cut the announcement into the show. We'll make our official announcement next week, but you can get in on this EARLY!!! Woohoo!!  The My Chronic Spoonful Life Planner is AVAILABLE! We're so excited to share it with you all, because we know it will help you keep all your Spoonie info in one place. This quarterly planner helps you track how you feel every day, symptoms, food, exercise, doctors, doc visits, medical history, prescriptions, etc.  You can check it out early by clicking on this link.  And, since you're an awesome podcast listener...you can get 20% off by using the discount code SPOONIE.  We'll make bigger announcements later, but back to the show, right??

Oh no! The dreaded body image episode! Well, it's OUR body image episode, and, like you and probably everyone else that has a chronic illness, we deal with body image issues, too. So, we're taking a real and honest look at body image and chronic illness, because most body image discussions only focus on healthy people.  In this episode we get real on what it's like when you have either an overt physical illness that people can see or when your illness is invisible and what that does to your psyche. It goes deeper than just feeling bad about how you look. We address what it's like when you don't have control over what's going on with your body, what it's like to go shopping for clothes when you've suddenly gained 80 pounds from your meds, how you feel when people judge you, and what it's like when the media pounds you with the "perfect" looking people. However, you know we're not that podcast where we'll just complain like crazy and leave it there. We have to give you solutions! So we'll go over ways we can feel better about ourselves--yes, even with our chronic illnesses. Yes, there are ways we can embrace how we look even though we're sick. We'll tell you why, and some ways you can do it. We're always a joy. As a reminder from the episode, we want to give you the link to our website. Remember, if you sign up now for our email list, you'll be the first to know when the My Chronic Spoonful Life Planner is available and get a discount! Also, when we reach 500 downloads, we'll be giving away a one-of-a-kind Chronic Spoonful Podcast t-shirt (drawing from our email list). Finally, we also promised a few companies we knew of that had some clothing that were good for chronic illness peeps who had things like ports or needed adaptive clothing: IZAdaptive ézéPlus Tommy Adaptive  

We're in a lot of different chronic illness groups, and one of the topics that seems to cross all the groups is the frustration we have with our care. A lot of you new to the medical world don't know how to get what you need from our doctor, and it can be so scary and frustrating. You don't know how to ask for what you need, find out what you need, or where to go when you don't feel like you're getting what you need. So we decided to address the issue on this week's episode. Both of us have been in the medical world for a while. Nicole received her diagnosis over 17 years ago, and she's a nurse. Meanwhile, Kelli has a more recent diagnosis, she's worked with doctors in mental health and detention facilities. We have a good amount of experience working with and around doctors. So we explain why sometimes it can be difficult to get what you need from your doctor--which isn't always their fault, by the way. It's complicated. However, you can do quite a few things to help yourself. Well, isn't that just the way of being a Spoonie?? We walk you through some red flags, how to research your doctors, and when the relationship just isn't working for you. We also make a fun announcement about our soon-to-come My Chronic Spoonful Life Planner that we're super excited about!!! Eeek! So join us this week for all the crazy banter and conversation. We hope you will find something that helps you navigate your relationship with your doctors! And feel free to share your advice in the comments and in the Facebook group! We'd love to hear from you!

This week we were so excited to welcome Dr. Susan Masterson to the podcast to talk about her book, You Mean It Isn't In My Head: What Sjogren's Syndrome Is and What You Can Do About It (available now on Amazon). So many of us go from doctor to doctor for years being told what we have is anything from a cold to depression to menopause. It's always something minimal or it's just in our heads. Until it's not. Dr. Masterson walks us through her Sjogren's journey and why it was so important for her to write this book. Spoonies get being dismissed for years, and that satisfaction of finally getting that diagnosis, but she also takes us through Sjogren's itself and how it differs from other Chronic illnesses. On top of that, we talk about diet, exercise, and self-care–all things we need across the chronic illness spectrum. Join us this week on the Chronic Spoonful Podcast. You can download the podcast on your favorite platform or on our podcast page. Also, Dr. Masterson is offering a free e-book on her page if you sign up for her email list today! We totally recommend doing this. Once you sign up for her list, she will be sending you updates for her upcoming classes on self-care. We can all use a little more self-care in our chronic illness journeys! Sign up for Dr. Masterson's list today!

On this week's episode of the podcast, we discuss Chronic Illness Spring Cleaning--or how Spoonies can Spring clean their lives emotionally, socially, and physically for better living. The weather is getting nicer, so everyone starts talking about opening up their homes and cleaning floors, counters and closets. However, when we're chronically ill, we have so many other things we can be cleaning up that are so much more important, because we carry so much baggage from whatever disorders are plaguing us. So on episode 4 of our podcast, we get everyone prepared. How do you Spring clean your life on so many levels? We're not offering platitudes or simple statements like, "Just get a positive attitude." C'mon. We all know that doesn't work. If we want to make our lives better, we have to do the work, and we have to make the changes. So we discuss how Chronic Illness Spring Cleaning is different than other types of Spring cleaning. Tune in this week to listen, and then join us in the Facebook group to discuss.

Brain fog is something that almost everyone with a chronic illness experiences, some more than others. On this episode we discuss what it's like for Spoonies to live with brain fog confusion, disorientation, walking around like you're in a bowl of jello, etc.--and we'll give you ways you can try to cope with it. 

There are just things not to say to someone with Chronic Illness, and somehow friends and family didn't get the memo (we still love you friends, and family). On this episode we talk about some of the top things no one should say to a person with chronic illness and maybe some suggestions for how to respond or how our allies should rephrase  things.

On this very first episode of The Chronic Spoonful Podcast, you'll get to meet your fantastic and quirky hosts, Nicole & Kelli, and we'll talk about what's happening in the real world that impacts Spoonies and what we can do about feeling isolated when you have chronic illness.