The Chronic Spoonful

The Spoonies' Guide to Traveling with Chronic Illness

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!

Cannabis & Chronic Illness Series Episode 3: Cannabis in the Kitchen

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!

Cannabis & Chronic Illness Episode 2: CBD & THC - The Keys to Symptom & Pain Relief

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!

Cannabis & Chronic Illness Series:Episode 1 Featuring Michael McGee -- Founder, Medical Cannabis DIY Community

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!

A Spoon for You, A Spoon for Me: Setting Healthy Boundaries

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!

And Now We Present...Lupus! The Great Imitator!

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 TCS GPS: Navigating the Road to Diagnosis & Acceptance

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!!

Snap! Crackle! Pop! A Life Lived with Ehlers-Danlos Syndrome

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.

Post-Pandemic Anxiety with Special Guest, Carrie Corby, LCSW

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!!

In The Summer Time: Spoonie Tips for Enjoying the Season

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!