Got Any Spoons?: Recent Episodes
Ann Anderson
A place for the chronically ill community to share their stories, successes, and struggles in hopes of offering creative solutions and a sense of belonging.
Of course approaching the one year anniversary of losing someone very important, our thoughts turn to grief. In this episode we discuss grief as it pertains to chronic illness patients and even try to apply it to how the doctor's feel/act.
We've also added a resource to every discription which is the most elaborate checklist of symptoms associated with Ehlers-Danlos. You have to school a bit past some technical jargon but the checklist is there and easy to read.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
Here is another checklist of common issues with EDS: https://www.orthopt.org/uploads/Management_of_Hypermobility.pdf
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Tis the season! What season? Struggle Bus Season! And it doesn't just pertain to Spoonies but Amberlyn and Ann discuss the reality of the struggle and some ways to manage it. Hint: supportive friends and humor.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Both Amberlyn and Ann have some experience living in areas with severe weather and they've both gone through prepping education. While Amberlyn is much more formal with military training, Ann didn't do too shabby using using resources found at the library.
Now is a great time to be talking to your providers about getting a few extra days worth of medications in case of an emergency. Don't forget to have your shoes handy and ready to go.
And remember that part of prepping is thinking about the worst case scenario. You don't need to plan every detail in the event of a death, but it's a good idea to share basic wishes with your loved ones.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Yes, we're a few days late, but we discussed some "Good News" that was shared on Rare Disease Day, February 29th. We'd love to hear what you think.
We also got a new mascot and are in the process of naming them. (We are all inclusive so our mascot uses they/them pronouns.) Listen in to find out who the mascot could possibly be. Big surprise: it's NOT A ZEBRA!
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Ann has experience having a service dog and Amberlyn wants to know more so why not have the discussion on the podcast, right?
You may notice the new name: Tale of Two Zebras. Amberlyn aka Mrs. Labeezy and Ann aka Elder Zebra are making this thing official so you'll be noticing our efforts to make this brainchild a reality. Like so many things involving chronic illness, it will take baby steps and time to fully reach 100% official status. Thank you for joining us on our journey. Glad you're here.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Thank you to our special guest this episode. We had a lot of fun talking about POTS, living with chronic illness, and sharing stories. There were a lot of resources mentioned and I will be adding them to the episode description asap.
TBH: It was much harder editing the recording than I expected. It is one thing to live with health challenges, it is another to listen to others validate the experience. Listening back to the recording I was moved to tears and I need some time to process my feelings before finishing all the notes and details for reference. Thank you for your patience and understanding.
Very soon we will be doing an official intro to our "new" podcast: The Tale of Two Zebras. Amberlyn and I feel it is a better reflection of our podcast topics and discussions.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Sleep is suppose to be restorative but for EDS Zebras, it is often every but restorative. Who knew there was an illness where sleeping can actually be painful? Pillows quickly become friends. There are also higher risks of serious issues and it is strongly recommended that sleep troubles be discussed with medical professionals.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Welcome and Thank you for joining us. We are not doctors and we do not give medical advice. We DO share our personal experiences good and bad and what has worked for us. With it being the month of February and Valentines Day in the week, Mrs. Lazbeezy and Ann decided to discuss friendships and the challenges presented by being a spoon.
Here's a link to the reel that talked about 8 minute friends: https://www.instagram.com/reel/C3BM8ZkpMIG/?utm_source=ig_web_copy_link
We gave a shout out to the our TikTok creator friend, eryykc, and his brilliant life hack to remember what he needs to bring with him for the day and how to make sure those items get home. Here's the link to hear his idea from the source: https://www.tiktok.com/@eryykc/video/7332858626647854379?is_from_webapp=1&sender_device=pc&web_id=7173368752716793390
Mrs. Labeezy highlighted a Zebra "must have": handwarmers that are rechargeable, don't burn, and are highly portable. Here's a link and she is eligible for commission if you use the link: https://www.amazon.com/dp/B0CMQMYBK7?starsLeft=1&ref_=cm_sw_r_apin_dp_2DQG2WTP3K5B8D7V0KND&th=1
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Welcome and Thank you for joining us. We are not doctors and we do not give medical advice. We DO share our personal experiences good and bad and what has worked for us.
Our main topic of discussion this week is mobility aids. It's a hot topic and often a rough one with generational challenges of who, when, & why people should use them.
Trigger Warning: we do talk about depression and mention suicidal ideation along with giving specifics to our weight as it relates to some mobility aids.
Please visit Mrs. Labeezy's Amazon Link to see our Zebra "Must Haves". She is eligible for a small commission if you purchase by following the link.
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_cp_ud_aipsflist_aipsfmrs.labeezy_AQWPX1V8SSS04G2WRF8A
Last week I mentioned the Body Braid and shared the video that helps me get the most support out of my braid. I forgot to share a link to purchase the Body Braid, so let me correct that here: https://bodybraid.com/pages/products
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Welcome and Thank you for joining us. We are not doctors and we do not give medical advice. We DO share our personal experiences good and bad and what has worked for us.
The episode is a bit random and is a great example of our general randomness dealing with our chronic illness. I had never heard of the Ladle Theory so join in Amberlyn teaching me neat things.
Please visit Mrs. Labeezy's Amazon Link to see our Zebra "Must Haves". She is eligible for a small commission if you purchase by following the link.
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_cp_ud_aipsflist_aipsfmrs.labeezy_4QNC0KVCS7YE81PGMVVW
I mentioned the Body Braid. You can find this product here.
Here's the woman who's video who helps me every time I put mine on.
https://youtu.be/_WzD6WJ6tQ8?si=jlo1rq_30lwUqGq5
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Welcome Mrs. Labeezy and the New Year. Had some technical difficulties but we should be good to go both here and on YouTube. Mrs. Labeezy covers the Beighton Scoring System found on the EDS Society website here. We cover some other Zebra basics and have fun relating with our unique zebra experiences.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
To learn more about the origins of the opioid crisis, check out HBO- MAX: The Crime of the Century.
You can learn more about Brent David Slone and his wife's fight for justice at https://youarewithinthenorms.com/2022/03/26/they-killed-my-husband-brent-david-slone-2016-cdc-opioid-guidelines%EF%BF%BC/
If you want to read about the Elliots' tragic demise, visit https://www.cato.org/commentary/after-crackdown-pain-clinic-tragic-double-suicide
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Mrs. Labeezy and Ann discuss clothing options that have worked to support the bendy zebra bodies. Links to come so check back.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
I am so excited to have Mrs. Labeezy back on the show. I will add links soon so please stop back by if you're looking for those. You can also find Mrs. Labeezy on the clock app.
Here is Mrs. Labeezy's "Must Haves" on her Amazon storefront. Check it out:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_cp_ud_aipsflist_aipsfmrs.labeezy_A0TB8S5PEQ474SPJKQMH
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
It can be a real challenge to stay warm for many who struggle with chronic illnesses and pain. I hope some of the ideas are helpful and would love to hear your best tips and trick to staying warm.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
It's the most challenging time of the year. I share some of my tips and tricks for the season and I share some brutal truths in my life right now.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
I am so excited to have Mrs. Labeezy on the podcast this week. We have big plans to continue working together in the new year.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Dr. Erin Nance has completed a series for the month of October where each day she covers a diagnosis that disproportionately affects women and is often missed or misdiagnosed as something else.
On day 21, Dr. Nance covered MCAS - Mast Cell Activation Syndrome and mentioned its nasty sidekicks it is often with; Ehlers-Danlos Syndrome and POTS/Dsyautonomia.
You can find more information about MCAS at GARD - Genetic and Rare Disease Information Center, along with NORD - the National Organization of Rare Diseases. Feel free to look up Ehlers-Danlos while on the sites as it is also classified as rare at this point.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Depression, I believe, is an unavoidable state for people with chronic illness and pain. It may not visit often or stick around long, but preparing for isn't a bad idea. Keep track of what works for you, note what works for others, and grow your toolbox.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
There's a lot on my plate right now and things are stacking so I've been seeking ways to mitigate the heavy load when letting it go isn't an option.
I address self-care and the challenges learning to love yourself can present if there's some conditioning to battle. Sarah Jarvis covers the Backdraft Effect in this article.
Then I go into a discussion of a new trend called Glimmers. They are the opposite of triggers. Here's a brief bullet point I covered to better define a glimmer.
I also share a well done (and free) resource on self-care through somatic movement. You can find the article here and it links to the YouTube videos that guide you through the practice.
And lastly, I am reinstating the season and episode numbers. I'm not sure when I stopped that or why, but they're back. This is season 4 and great things are on the way.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Y'all, I have so many thoughts on this subject. I literally recorded a full episode every day this week. I did research and wanted to offer something that would be helpful. In the end, the thing I find most helpful is the reason I started this podcast - knowing I'm not alone and spreading love.
I know I sound rough and it's appropriate for the week that included two er visits, one complete with an ambulance ride, another funeral of a beloved person in our life, new physical therapy, and weather that challenges the best of them.
Dear friend, you are not alone. Not in the darkest of times, ever. I will use a ladder and sit in the well if you need it. Promise me, we'll make a date to watch the sunrise. Call or text 988 - https://988lifeline.org/
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Food Allergies are hard at any time of year. And like with most other things, the holidays have a way of ramping up the stress to maximum amounts. I discuss ways to identify food sensitivities, hidden sources, and helpful products.
1) The Teal Pumpkin Project
2) Alpha-Gal Syndrome
3) ALCAT Food Sensitivities Right now there's a great Groupon for a huge discount on this particular test
4) Everlywell
5) Nima
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Oh how I wish the holidays weren't all about food, but alas - they totally are. I cover some gifts for spoonies as well as some ways to bring back the art of conversation. Which I forgot to mention: Whenever someone asks me "What do you eat then?" I respond with, "My favorite conversation."
It's okay not to attend some events. Do what is best for you.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
This time of year can be challenging for the healthiest of people. I offer some tips, tricks, life hacks, and paradigm shifts that I hope are helpful to my fellow spoonies. Also, so food for thought if you are trying to accommodate a special Spoonie in your life.
Here are a couple of experience based gift lists:
https://www.cosmopolitan.com/style-beauty/fashion/g34565548/best-experiences-to-gift/
https://modernminimalism.com/best-experience-gifts-for-kids/
https://www.washingtonpost.com/wellness/2022/12/01/gift-guide-disability-chronic-illness/
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Losing people in the chronic illness community isn't a rare thing, sadly. The story of Stephanie Aston found here in the New Zealand Heard, is especially hard because doctors refused to treat her illness choosing to believe she was making it all up and making herself sick.
Ehlers-Danlos Syndrome is so very tricky as it can, and often does, affect the entire body. It likes to jump around and keep everyone on their toes and guessing what body part will hurt most on any given day. It is a difficult beast to treat and there is no cure.
I did promise a playlist and here's the link to various music that gets me going, keeps me going, and is not all inclusive.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
I don't know too many people who have cruised through life without enduring a single trauma. For the chronic illness/pain world, there are usually multiple and they often have to do with the medical care/treatment they have received. As I am coming up on a big medical trauma anniversary, I would spare you the details and skip to the helpful parts: self care tips during a trauma flare.
I did mention Allison Tennyson @microcatmachine on TikTok. She shares relatable content and a lot of wisdom. I recommend you check out her posts.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
We spoonies have a lot of experiences and going to the ER happens frequently. It can be fraught with triggers and I find it best to have a set of criteria to help make the decision on whether or not to go. I talk about my most recent ER visit and how knowing my body best came into play in a huge way and I hope it encourages others to advocate for themselves because we know our bodies best.
I also shared a great quote from the TikTok creator Allison Tennyson:
"Being chronically ill does not make you a burden
Having chronic illness is a burden on you."
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I'm working hard to reduce my stress because stuff is heavy and I need to let it go. What are your tips for reducing stress? I'd love to hear them.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
It's a bouncing episode going from one thing to the next, not at joined, but sometimes that's life.
I talked about questions to ask kids besides "how was school?" Here's the link to the Parent mag article I mentioned.
I also mentioned How to Fall Out of Love Madly by Jana Casale. Here's a link to that book.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
it's been a hard summer and I've been in a depression. I talk about a little but try to focus on the path out and resources I've found. One of which is the Cleveland Clinic's National Consultation Service. Here's the link.
We also attended the Oley Foundation conference. They have posted some of the main presentations and I encourage everyone to check out this amazing resource. Here's the link.
I'm back and looking forward to sharing positive momentum.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
There are some do's & don'ts with just about anything involving human interaction. Here are a few "best practices" I have implemented in my health journey and they might help others too.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Brené Brown is a great researcher and author with a robust catalog of helpful material. I recently listed to her Audible "Men, Women, & Worthiness" You can follow the link, for which I receive compensation, and give it a listen. You will be happy you did.
https://amzn.to/463rdrM
The young lady with a great theory is ChronicallyBee on TikTok. The clip that I referenced was created on 5/5. Here's a link
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
It's one of those days. Concentration be difficult and the squirrels and bunnies are highly distracting. Have fun my wonderful listeners and enjoy the chaos if just for today.
All the love and don't forget to email me for the giveaway:
GotAnySpoons@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
It's been a long time but I may finally have a doctor willing to work with me on a pain relief treatment plan. I am beyond excited and even a tad hopeful.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
It's been a difficult couple of weeks with my father-in-law passing. I will talk about it in another podcast. Today, I tried to focus on things to get you through this holiday weekend.
The first thing I mentioned was making meal time more fun by going for a picnic. Here's the picnic "basket" Mr. Anderson and I picked out. https://amzn.to/3ovMcm7 We have received it and are super excited to try it out.
There are lots of places to find Mason Jar Salad Recipes but just in case you want a link to a resource, here you go: https://amzn.to/45r0Eg1
As for crocheting, here's the cool hook set I found with stitch markers, scissors and tapestry needles. I love it! https://amzn.to/3ID471i
If you're wanting to check out Brené Brown's Men, Women, & Worthiness, you can find it following this link: https://amzn.to/45z440k
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I've got a hot take on mental health awareness. Let's be real; as one who has been there, done that - I call bs.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I'm sure if you asked other chronically ill people what the worst part of their illness was, you would get a variety of answers. There are certainly lots of options. For me it is memory loss.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I had another birthday and thought I'd share some what I've learned from my time on the 3 rock from the sun. Enjoy.
Just in case you'd like to give The Wobbles a try, here's my share link:
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I am so thrilled to have finally had the opportunity to interview the Greatest Boss of All Time. The manager who helped this spoonie shine like the top of the Chrysler Building.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
If you don't have a living will, advance directive, and a basic will in place, I hope my story gives you the information you need to make it happen sooner than later. You can do this!
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I can be more common than one would like to think that things do go very wrong with medical procedures and such. More than a few times in my life my support system has encouraged me to take action against doctors who caused serious harm.
I shared my most recent struggle on TikTok and over 10,000 people watched my 3 minute video about how doctors don't listen. Most of the comments were supportive, some had questions, and some were defending the medical staff.
I tried to answer those questions and share my general thoughts on reporting staff that have harmed me.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I've got more tip, tricks, and life hacks to share in this episode. There's also a little soapbox I use to set the record straight regarding handicap car placards and plates.
Another mention of some very important resources:
PAF - https://www.patientadvocate.org/
NAMAPA - National Association of Medication Access & Patient Advocacy https://namapa.org/
Patients Rising - https://www.patientsrising.org/
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Another Friday is here. Time seems to be flying by. Let's get excited for the weekend.
I can't say enough positive things about Woobles and how they teach people to crochet. Here's the Woobles Referral Link and get $5 off your first order and I get $5 off my next order.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I fell down on the job and didn't get the description and links done before this went live. I'm sorry for those who looking for it at its time of relase.
I mentioned G-Pact.org and the access cards they offer. Here's the link Click on the "Resources Tab" and the Access Cards are there.
I also mentioned OneOme. Here's that link.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
It's going to be a great weekend. I get to see the Indigo Girls with they symphony. I'm hoping they play Virginia Woolf. I particularly enjoy the live version on the 1200 Curfews album. You can listen here on YouTube. My friend loves White Horse and he introduced me to them with this song: Emerald Isle.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
It's a constant running tally in every Spoonie's head. How many spoons do I have? How many will I need for this activity or that one? Where did all my spoons go?
I mentioned FlyLady who can be found here.
The following is an affiliated link and I will be compensated should you make a purchase upon following the link.
And also Marie Kondo who can be found here: https://amzn.to/3mKS0Hk
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Keeping it positive and finding the fabulous things in life each Friday.
Registration has opened for the Oley Foundation Conference. You can find out all about it by following this link.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Figuring out how to stay positive.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Here's a shot of positive energy. Enjoy!
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Medical gaslighting is, sadly, very prevalent in the EDS Zebra community. Now there is science behind the the very real trauma patients experience. Here's the article on ScienceDirect.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
This post contains affiliate links, and I will be compensated if you make a purchase after clicking on my links.
We all have enough challenges to fill our week. I'm going to start making a Fabulous Friday post each week to focus on the good happening in life. This episode starts by sharing my experience searching for and finding a wonderful job.
At the break I mentioned InstaCart. Here's that link:
https://instacart.oloiyb.net/c/3839329/1107857/7412
I also reviewed "Spare" by Prince Harry, Duke of Sussex. Here's that link:
https://amzn.to/3ZarlBw
The movie "Woman King" is a run, do not walk and is on Prime Video. Here's that link:
https://amzn.to/3Exa6CD
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
If you're like me there is a lot of medical equipment and supplies that need to be organized let alone the regular stuff needed for life. In this episode I share my best tips and tricks. Below is a list of products I mentioned that help me a great deal. The links are affiliated so I will be paid a small commission if you choose to click on them AND buy a product. (Clicking on the does not require you to purchase the item.)
1) The first mention was of my beloved laundry sorter on wheels with an adjustable hanging bar. https://amzn.to/3YOyuHL
2) The second was for coloring postcards. Brilliant invention. https://amzn.to/40Oh2EZ
3) And the clipboard to hold the postcards/bills/supples to make it all portable. https://amzn.to/3jMZkkH
4) The broom and dustpan I recommend here is one of the higher priced options, however, I have tried the less expensive options and they broke within the first week. The OXO brand I have linked to has been going strong for nearly two years and well worth the extra cost. https://amzn.to/3YOyM1j
5) And the metal drawer I use must not be on the market or I need to dig harder to find it for y'all.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
**This post contains affiliate links, and I will be compensated if you make a purchase after clicking on my links.
Navigating chronic illness is hard for anyone. There is an added layer of difficulty if you are a parent to a chronically ill child. In the first part of the episode I share some of the "don'ts" I learned along the way. I shared the resource "Taming Your Tongue" Here's the link: https://amzn.to/3Iu4KdC
The second half is more positive and I shared some of the "do"s. One of those suggestions was to start a file with all the medical information your child will need when they launch as an adult and are responsible for all of their medical stuff. One parent created a book on Ehlers-Danlos after her child requested she put together all her knowledge. That book is now the go-to authority on EDS. If you're interested in checking it out:
https://amzn.to/3x7Bsv9
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
While life has a way of knocking me down, I keep getting up and doing my best. This episode address the effort we put in to educate ourselves on our illness, treatments, and team members.
I mention the website for rare diseases. The groups is actually NORD - National Organization for Rare Disorders and their website is https://rarediseases.org/
I also mention the Oley Foundation. They are a gem of support and knowledge for those receiving tube/port feeds. Here's their website https://oley.org/default.aspx
Lastly, I mentioned a book I have found very helpful with planning ahead. This link is affiliated and if you follow it and purchase the item, I will receive compensation.
The book "I'm Dead, Now What?" https://amzn.to/3YqbVZw
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
When I start to feel down about my (perceived!!! - not real) lack of contributions to my household/family, I am often reminded that my health is my job: a full time job at that. I don't exactly remember applying for this job and I definitely want to quit. However, it got me to thinking how it maths out/adds up/makes sense that being chronically ill is, in fact, a full time job. And in thinking about it, I was able to create a multipart series address the duties of said job.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
You probably have several doctors on your team if you have a chronic illness. You also probably have experience with the Gatekeepers of the doctors' appointment books and know the ways of the Patient Portal. This episode shares my tips and tricks of dealing with these challenges. Maybe it's helpful maybe it's a loud empathetic "Amen." Either way, I hope it's helpful.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
First let me say, thank you if you made it through the Origin Story episode. I know it's rough. And to help with the feelings of helplessness, I gave some thought to how loved ones & friends might be able to support someone going through a trauma/grief anniversary. It's fairly general advise that I think can be applied with a broad brushstroke to various situations.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
*TRIGGER WARNING*** This episode talks about a traumatic labor, delivery, and postpartum experience. There is every trigger in the birthing book.
I decided to share because there are plenty of things I wish I knew then that I know now and because trauma is not linear. It can knock you to your knees at any time and, personally, I think it likes to take gut punches when you're feeling pretty alright.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
It's a new year so we are officially in a new season of the Podcast. Thank you so much for supporting me.
If you haven't listened to Ladies & Tangents, I highly recommend it. They are a no-holds-bar type girls' night and, fair warning: they use a lot of profanity. They are funny, authentic, and crushing their 30s.
If you don't know Courtney Carver, fix that. :) She has a lot of wonderful stuff she shares. I mentioned Project333 and it truly changed my life for the better.
And I can't forget to mention @mercurystardust, the trans handy ma'am I adore. Also Maurice @theiowagunkle is a great way to start each day with gentle reminders to love ourselves, smile at strangers, and say kind things to ourselves. Last, but definitely not least, my favorite hype girl in the world, @cutelezbean.
As for the other items I mentioned, here are some links to things I like. They are affiliated links so I am given a little commission should you follow the link and purchase the item.
Clever Fox has several organizers and I really like their medical one. https://amzn.to/3kmdUQ0
Compression socks come in different compression strengths and the good ones accommodate different calf sizes as well. Some of my favorites are
https://amzn.to/3H4YnNf
Compression leggings for medical reasons are hard to find with pockets but I will gladly go without for the benefit a good fit and feel does for my spoon conservation. This brand comes in a wide range of sizes and has a clear fit guide so you won't waste time and money wondering if they fit.
https://amzn.to/3H7PClH
And just in case you're interested in the DNA & ancestry stuff, here's a link to the basic 23 & Me kit.
https://amzn.to/3GIs3yw
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
It's going to be a better year, I've decided. Join me on my journey. I'd love an accountability partner and I'd love to share successes.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Chronic Illness, by definition, never ends. And if we're honest, we all experience some dark days/times. In this episode I talk about planning ahead and what has helped the most during the darkness and getting out of the darkness.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
This episode is NOT about dieting or losing weight. I tackle the emotional side of food restrictions when necessitated by a medical diagnosis. I gave tips and tricks on handling the issue in social gathering, family celebrations, and everyday life.
I do mentioned and highly recommend Stephanie O'Dea's cookbook: Make it Fast, Cook it Slow. It was a life saver for me and my family when I was first diagnosed with Celiac.
As affiliate for Instacart, I will receive compensation should you use the following link and make a purchase:
https://app.impact.com/secure/nositemesh/assets/bulkDownloadPartnerAssets.csv
Instacart - Groceries delivered in as little as 1 hour.
Free delivery on your first order over $35.
Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
First thing, my port is okay. I mentioned palliative and hospice care and want to talk more about the subjects because many people have different ideas of what these things are and how they differ.
I reference #savingsarag as well as #theIowaGunkle, both of who are on TikTok and worth checking into.
I also mentioned pre-planning a funeral and would recommend the book "I'd dead. Now what?" I don't have an affliation with any of these people or resources. I do have an affiliation with Instacart:
https://instacart.oloiyb.net/c/3839329/1540365/7412
Instacart - Groceries delivered in as little as 1 hour.
Free delivery on your first order over $35.
Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
The title is scary but I focused on the helpful aspects rather than telling specific stories and sharing trauma/triggers.
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
What's the first edict in the Hippocratic oath that all doctors must follow?
1st Do No Harm? - - - Wrong! Let's talk about it.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
First let's talk about Thankfulness and how it can help. In the second half, the long await gift giving ideas for the Spoonie in your life. If you're unfamiliar with the term "Spoonie", Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com
And, just in case, here's a link to my Amazon Wishlist:
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
I'm thrilled to introduce y'all to Mr. Maxwell. You can find him on TikTok and Instagram @mr_Maxwell16. He is also on YouTube and Patreon as Mr. Maxwell AND he has his own podcast.
If you'd like to be a guest, please reach out to Ann at GotAnySpoons@gmail.com
Pain brain takes a staggering amount of energy to sustain and continue to be productive. The first half focuses on the patient while the second half give suggestions for loved ones on way to help.
In the first 15 minutes I focus on how I advocate for myself in the hospital setting. The second part discusses doctor's visits. The third is bonus material on how to deal with the gatekeepers of the industry.
I mentioned at the abridge app. Here's the link:
https://www.abridge.com/
Please remember Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com
Hot take: better sooner than later. I have a different view on mobility aides than most people. Short version, using mobility aides isn't giving up and using them as needed sooner than later leads to a better quality of life.
I really appreciate the TikTok creator Joseph A Kibler @josephanthonykibler. He shares his experiences and addresses ableism from the outside and the internal able-ism many of us wrestle as Spoonies.
Speaking of Spoonies: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com
I'm so sorry I missed the Tuesday release date. Thank you for understanding and having patience while I got this episode done.
And, to give credit where credit is due to the Spoonie Pioneer: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com
The first part of this episode is real talk about the struggles I've been having trying to record the Part 2 episode. The second half is the promised content regarding holidays.
Teaser: I will be having a guest in an upcoming episode. I'm so excited!
If you are unfamiliar with Christine Miserandino revolutionary Spoon Theory, please check out the origin story to the term "Spoonie" by visiting her blog: https://butyoudontlooksick.com
Holiday can be stressful for the most prepared among us and adding a disability or chronic illness and pain just compounds the stress. I hope the tips and tricks I have used over the years and shared in this episode are helpful.
I mentioned Project 333 that was a mind-blowing experiement that changed my life and I would encourage anyone to give it a try. Courtney Carver is amazing.
Joshua Becker is another hero of mine and his Uncluttered class changed my my life too. Here's his great list of clutter free gifts.
As always, credit to Christine Miserandino who revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com
As we mentioned in the last episode, I have been in therapy for over 20 years. I think it can help anyone. I share some tips and red flags when finding someone to work with.
I mentioned GoodRX and wanted to make sure I shared a link so here that is: https://gx9e.app.link/q3UblK1lcM There used to be a small reward like $5 for sharing but I don't see that now so this may be an affiliated link, but it may not, either way, I hope it's helpful.
This episode was previously only on Patreon, but after talking with friends and family, I decided to make all the content available. My husband shares the journey and decision to start going to therapy.
And to give credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com
Brass - Bright
My college bestie and I took a road trip to cross off a bucket list item. We saw the Indigo Girls for the 14th time at the iconic Red Rocks Amphitheater.
Today I have some unexpected medical stuff to deal with and honestly, I am very off kilter. Thank you for listening and taking me as I am. I promise to give an update asap.
In honor of Labor Day, I share how I found a job and continue to work with a disability. There are many different resources but the Ticket to Work program for those receiving disability benefits in the States, is a great place to start. Shout out to Christine Miserandino who revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog.
Also, as promised, I added a bonus episode for my Patreon subscribers. Those super supportive peeps get access to My Love and his thoughts on being a caregiver and utilizing therapy. Here's the link if you'd like to join and hear his thoughts.
Having a chronic illness is tough and we need support, but where can we find what we need? The are resources, groups, pros and cons, and I try to cover the major options.
As always, be sure to check out Christine Miserandino's Spoon Theory on her blog: https://butyoudontlooksick.com
This is just the tip of the iceberg when it comes to managing bad days whether mental or physical. Please forgive my labored breathing. I have very limited editing skills but I promise to focus on learning how to snip those out of the recording.
I mentioned FitFlops.com in the episode and hope to have an affiliated link at some point.
As always, I encourage you to check out Christine Miserandino who revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com
When life was really chaotic, I found FlyLady and she saved my sanity. She gave me grace when I needed it most and a system I could use to gain control over my house. Today I share my experience and how it applies in my chronic illness journey.
Also check out Christine Miserandino’s Spoon Theory to learn the Spoonie origin story.
Being sick is hard and we all want to feel like we've accomplished something each day. People with chronic illness do not have the same energy levels as other people and redefining productivity can help us feel a little better each day.
Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com