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40+ in Cincinnati, OH. #BladderCancer #Ostomate #Warrior #Single #ChildFree #SubstanceFree #Volunteer #Writer #Advocate Opinions are my own. https://linktr.ee/mirleta
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I have always said water is life, but here's a tidbit that I don't hear people talking about much at all! Water is good for your HEART! Prevent strokes by drinking water! Tidbit courtesy of Kim Makoi D.C. #WaterIsLife #DrinkWater #WaterIsGoodForYourHeart #HeartHealth Link below.
Full-body pain & exhaustion are in full effect, but it will all be worth it. Highlights of the last 11 days-getting to work w Nathaniel G. Snow; making new CPS & Big Red connections; the rare opportunity to see Amy Firis in person! 9 days to go! #IAmCPS #WeAreCPS #BigRedFamily #EthelMTaylor
You can live a long, good quality of life with a urinary diversion! I'm 9 years out from my radical cystectomy and doing well. No evidence of disease since my procedure! #BladderCancer is consistently in the top 10 most common cancers according to @who.int. It is treatable & beatable!
You can live a long, good quality of life with a urinary diversion! I'm 9 years out from my radical cystectomy and doing well. No evidence of disease since my procedure! #BladderCancer is consistently in the top 10 most common cancers according to @who.int. It is treatable & beatable!
The Miccosukee weren’t consulted. The Everglades weren’t protected. Now the fight is on. Watch Chairman Talbert Cypress break down the lawsuit and the stakes in this week’s Native Bidaské ⬇️ #AlligatorAlcatraz #Miccosukee #NativeBidaské
www.bluezones.com/2025/07/enga...
Not only could you be cutting down on your grocery bills, but the food you grow is healthier for you! (No pesticides, no chemicals, fresher, tastes better, etc.) Get out there and pick something you've grown! kimakoi.activehosted.com/index.php?ac...
Did you know that all over the place there are farms that will let you pick your own produce! There are some that are just outside Cincinnati even! You can also grow a lot of your own food in containers at home, year round, especially herbs and spices.
It really does my heart good to see more & more people on my feed growing their own food & being plant parents. Our society is far too removed from our food sources in this day & age. Many young people don't even know the differences between margarine and butter & why butter is better for you!
I start on August 1st. I'm going to start accumulating #BlackAndGold and #Hawks spirit gear. (Y'all know I'm all about a theme and school spirit!) Do I have any other folks in my feed that will be joining me in the building???? #IAmCPS #EthelMTaylor #GoHawks
I'm even more thrilled to share that I'll be working side by side with lifelong friend, Principal Nathaniel Snow. (I've known him since the early 80s, so of course I've got stories, but we'll keep it classy, mindful, and demure! 😉)
Black + gold + hawks = News #ComingSoon
a sigh of relief...
Sometimes I wish there was an emergency charcuterie service where meat, cheese and crackers just magically appeared at me door.
🌱 It’s Biodiversity Day! At C-SPIRIT, we work with the diversity of plants and microbes to find bioactive compounds that help crops thrive and soils stay healthy. Science across five countries, powered by the natural chemistry of plants and microbes. 🌾 #BiodiversityDay #PlantScience
National Day of Defiance June 14th, 2025 Do what you are able! Check out the article for details! indivisible.org/statements/i...
It is impossible to cut people and programs and simultaneously create more jobs, keep humans safe, and still receive everything they need. The so-called President is an unqualified moron. People are literally dying. SMH
It took decades to build America’s research infrastructure It’s destruction is happening in a matter of weeks 🥺😢😔
A big thank you to our sponsors of the Triage Health Conference! Have you registered for our free conference yet? Sign up today: loom.ly/01HD_OE #cansky #oncsky #OncoSky #NurseSky #OncNurseSky
Help save NPR and PBS! Join the effort to protect public media @MyPublicMedia! Sign the petition now to safeguard your local public media stations. bit.ly/450C2uw #ProtectPublicMedia
…May Saturday afternoon. If you didn’t know already, as my shirt says, in May we wear #marigold, #purple and #blue for #BladderCancerAwareness! Yes, I have a pair of glasses to match my cause!
Got the exceedingly rare opportunity to spend time with Conni Berns in 3-D while she’s on her way through Cincinnati for a brief visit before her once in a lifetime Alaskan cruise. We hit up the neighborhood coffee shop for coffee and quiche for a lunchtime visit on an extremely rainy May …
Second & third coats minus accent nail = @orly in #Glowstick. Accent nail = @zoyanailpolish in #Daisy. Top Coat = @sally_hansen #HardAsWraps.
Starting the journey back to my self care routines. Dusted off the polished and painted my nails to match my brightening mood. Base coat = @nail.aid Sapphire Strength Mega Growth formula. First Coat = @zoyanailpolish either in #Purity or #SnowWhite (label is no longer attached).
... I'm always looking for new products to try, especially since I'm also diabetic and post-bariatric surgery, so I have strict calorie, carbohydrate, and sugar content requirements.
I like variety, so I always have a ton on hand. If I'm traveling and need to grab a bottle, @drinkbodyarmor.bsky.social Lyte. Otherwise, I keep mixes on hand of #UltimaReplenisher, #GoHydrate, #KetoVitals, #DrPricesElectrolytes, #TasteSalud, and #ReLyte by Redmond. ...
spare #ostomy supplies, electrolyte mixes and sometimes a change of clothes.
Why Sign Up with Rare Patient Voice? Provide your input as a patient or family caregiver to improve products and services. Help companies and researchers focus more on your disease. Earn rewards for participating in interviews and surveys. #rarepatientvoice
Whatever stereotype you have about the condition of someone you care about is a bold-faced lie. Diseases don't discriminate. People do. The face of the condition is the face of your loved one.
What’s one thing you wish people knew about living with a rare disease or chronic illness that never gets talked about?
We could not do what we do without you! Thank you for being part of our community!
Educate yourself on your condition - learn everything you can about the condition and its treatment. If you want a clinical trial, sometimes you have to go find it yourself because not all doctors stay up to date on that information.
What’s one piece of advice you would give to someone newly diagnosed with a rare or chronic condition?
"Bladder cancer, oh that's one of the good cancers." "You're too young for cancer and to be dealing with all these health issues." "You don't look like you're dealing with [insert diagnosis or symptom]."
What’s the most annoying ‘harmless’ comment someone’s made about your condition?
What’s something that helps you feel seen on the hard days?
Random messages, food deliveries, snail mail, verbal acknowledgement.
We know our bodies, are not faking our pain or symptoms & if we're mentioning something to our care team, it needs to be explored, not ignored, because we have done everything we can to deal with it on our own already.
What’s something you wish the healthcare system actually understood about living with a rare or chronic condition?
Snail mail, electronic gift cards to places I actually utilize or being able to send a text at any time of the day or night when I'm having a rough time and answering it with love, support and empathy.
What’s a small act of support that made a huge impact during a tough time? #rarepatientvoice
Just having friends and family send me a text, private message, email or snail mail to check in on me and let me know they're thinking about me, asking me authentic questions and having real conversations with me in a way that is not taxing for me really shows me the love and support I need, always.
What’s one thing that makes you feel seen in a world that often overlooks chronic illness or disability?
What’s one boundary you set that completely changed your life? #rarepatientvoice
What’s something people think is helpful… but actually just makes things worse? #chronicillness #raredisease
Hiding who I am. I'm much happier and calmer since not trying to fit into a conservative, colorless, expressionless box. I tell it like it is, express my thoughts and opinions and let all my outrageousness out.
We always get questions about what we do at Rare Patient Voice! So let’s open it up. Got a question? Let's chat!
...ebbs and flows are part of life so feeling highs and lows when dealing with a diagnoses are part of the deal -- no one is UP and positive ALL the time!
Saying things like "you're so strong," "stay positive," "keep your head up," "you're so inspiring," or "you're doing better now, right?" Those things are not helpful and do not feel good to the people you're saying them to. We're just trying to survive, not be your inspiration porn. Plus...
Today the cheetah cubs explored the outdoor habitat for the first time! (This is the cheetah habitat by Base Camp Cafe.) Zola, Lulu & Kiara are getting used to this space and are not on a set schedule quite yet. We’re so proud of these brave girls!
Thanks for sharing. I'm not sure I realized this was happening, as I'm in the US, which is probably why I hadn't heard of the efforts! I think barcodes on the stamps are a bit much...and detract from the beauty and expression that can be done with stamps.
This is the first I've seen/heard of this. Can you tell me more?
Advocates urge Ontario to change funding for breast prostheses, ostomy supplies
Kindred Box has information about how to request assistance if you're in the US. Your doctor, nurse, or social worker will need to complete the form on your behalf. Please share this link with them: www.kindredbox.org/get-help
Go to bladdercancer.net to subscribe. Click here to see the article --> health-union.activehosted.com/index.php?ac... #LinksInBio also. #Like #Comment #Share
I truly believe that every voice can make a difference. I invite you to subscribe to BladderCancer.net so we can stay connected as I bring you along the paths I have been and am headed towards while we support the #BladderCancer community.
#Sponsored I am so honored and excited to partner with Johnson & Johnson to increase #BladderCancerAwareness and #EmpowerPatients to be their own best advocates. I'll continue sharing my personal journey - from diagnosis to advocate - on Health Union's BladderCancer.net.
Thanks to my friend Dr. Kim Makoi for this: Find a #Podcast that Supports YOU I'm not a podcast fan or active listener, but it has been helpful in moments that I need it - like if I have to be hospitalized or sitting in a treatment chair. Seek some out! kimakoi.activehosted.com/index.php?ac...
#OstomySupplies are NOT interchangeable! The products interact with each human's body differently and have different purposes and benefits! www.ostomy.org/wp-content/u... Thanks to United Ostomy Associations of America for this great #research!
#Health is a #journey! Not a destination! Thanks to Dr Kim Makoi D.C. for this great reminder! kimakoi.activehosted.com/index.php?ac...
...AYA Cancer (Adolescent & Young Adult Cancer), people diagnosed between the ages of 15-40, is included in the rare disease umbrella - and that includes me.
...For more info on this awareness day(annually on the last day of February) - you can check out www.rarediseaseday.org and follow their social media. There are always toolkits and events associated with today (and the whole month) - in-person and virtual. ...
...inform them that ALL medical research is essential to ALL Americans! Zebras are the "official mascot" of rare diseases: "When you hear hoof beats, think zebras, not horses."
Happy #RareDiseaseDay! There are more than 6,000 IDENTIFIED #rarediseases. Take time to watch this video: youtu.be/fIvqxQPjisI?.... Research is VITAL and is currently under attack by our current administration. Contact your local politicians and ...
Friendly reminder that if you buy a book on Kindle, you're only paying for the rights to read, not own. If a book truly gets banned, it will be taken away from digital platforms like Kindle, nook, etc. Consider getting physical copies of banned (or other) books! READ BANNED BOOKS #booksky
Every minute, 40 people are diagnosed with cancer globally - Tedros Adhanom Ghebreyesus @who.int oncodaily.com/blog/tedros-... #Cancer #CancerPatient #Medicine #Health #GlobalHealth #CancerDiagnosis #Oncology #OncoDaily
Lots of you find numbers and statistics just as interesting as we do, so join us for a recap of last year in numbers! #postcrossing
Just a quick reminder that the Month of Letters starts tomorrow! 💌 If you're participating in this year's #lettermo, it's time to make sure you have enough stationery, postcards and stamps to last you through February 28. Good luck, and come share your progress on the respective forum topic!
...There shouldn't be any tightness or numbness near your stoma, you should definitely talk to your doc about that.
...I also never wanted to be pregnant. I was diagnosed at 40 in 2016 and am perpetually single. Due to all the anatomy that was removed, I have had no sexual desire since my surgery and since I'm single with no prospects, I have no idea about intimacy. ...
...belts/covers are a personal preference issue that you just have to try different things to see what works for you. Intimacy & pregnancy varies greatly on your treatment & I'd suggest having a conversation with your doc. Anatomically pregnancy is no longer an option for me, but ...
Charlotte Foley/Restorative Ostomy Solutions is a great follow for rehab info even if you don't pay for her services. She a PT by training & an ostomate. I'm a #bladdercancer survivor also. Physically - takes time. Emotionally - suggest therapy, journaling & UOAA ASG (ostomy.org). ...
Is anyone on my timeline gearing up for #INCOWRIMO?! I'm excited to participate in my second year. The challenge is to send 1 piece of mail each day that there is mail service (in the US, that's 23 days) *and* reply to any letters/postcards you get. I'm in & I'm down! #LetterMo
If you use a bag with a filter, you don’t want to directly get the filter wet, but otherwise it’s okay. If you have any issues with adherence or getting water or output behind the barrier, try only cleaning the tail instead of the whole pouch.
Yes. I’m super open about my #urostomy and about being a #BladderCancer #Survivor. Absolutely no reason to hide it. Of course, being an #advocate & #writer, you can search my name & find out so also no use in hiding. #ProudOstomate #OstomateLife
Sensura and Assura are made differently. You can’t mix and match.
If you’re in the US, contact Kindred Box or Ostomy 2-1-1 for assistance with getting supplies.
... Without my#ostomy, I would not be alive to see 49. I might now have lived to see 41 even. You can view the article by subscribing at ostomycanada.ca/other-ways-t... #Gratitude to #OCS for the opportunity to! Glad my copies arrived before the postal strike!
As we head into my birthday tomorrow, I feel it’s fitting to share that I have a featured article in the Ostomy Canada Society magazine’s #Fall2024 edition! I was asked to share my #BladderCancer & #Urostomy experience with my fellow Canadian #ostomates. ...
