When Doctors Don't Know

03/01/2026

02/03/2026

Strange time of year to ask, but looking forward to Spring. Total beach bum here, and last year the Sun and heat made my MCAS flare every time I tried to be outside. Anybody else? Any tips? How do you deal with summer weather that you love, and a body that doesn’t want you outside?

01/14/2026

As somebody struggling with doctors or a diagnosis, or even your diagnosed condition, do you document everything? There are photos from pre diagnosis when Docs kept telling me it was in my head!

01/11/2026

Where do you feel you get the best help/most knowledgeable care during a flare? ER? Urgent Care? Treating Physician? Self/Home?

01/10/2026

Welcome new Zebra’s to my page. I don’t claim to provide medical advice, I am not a doctor, but like many of you, I struggled for years knowingly, and a lifetime unknowingly, to get to the bottom of my deteriorating health. Around 40 it became severe, and continued downwards for over 5 years. I hope all will feel welcome, and free to share their own questions, thoughts; and experiences in a safe place with no judgement!
Welcome ❤️

01/10/2026

It’s been a while since I’ve shared my progress! This is December 2023 and December 2025! Chronic Illness warriors; Domument, document, document! Not just to “prove” your symptoms but so you can notice trends and patterns and also track your small steps forward - or back! For those interested in my journey, I wrote my story for my IV Nurses and it’s available on Amazon, Amazon Kindle, and free on Kindle Unlimited. Title: When Doctors Don’t Know. 🦓❤️

12/24/2025

As a Zebra, as a person with chronic illness, how do you navigate the challenges of the holiday season?
Preserve: above all else, remember to protect your physical and mental health and peace. You work daily just to maintain, don’t let others set you back, it’s ok to preserve the benefits of all those daily efforts that others never see.
Boundaries: It’s OK to set boundaries. If it’s setting a limit on time, limiting the number of gatherings you attend, kicking people out at 8pm so you can be half human the next day. Whatever it is, setting boundaries is ok!
Rest: Always, often, and as much as you can between each event and activity. Let things wait that can wait, and save your energy for the things important to you.
Listen: always listen to your body. Slow down enough to hear and feel when it’s telling you to slow down.
Patience: Have patience with those around you, their often ignorant questions that come from lack of understanding, or belief in your condition. And mostly - be patient with yourself. When you need a break, when you need to leave, when you need a quiet room - be patient with yourself.
Plan: You know you! If you need a specific diet, plan to bring your own appropriate food. If you know you have physical limits due to exhaustion or other, plan on keeping your schedule on track with those needs. If you plan properly and in accordance with your specific needs and limitations in advance and are realistic with yourself in advance, there is no disappointment when you over plan or over do it the first gathering and end up being unable to attend no more.
Leave: When the time is right for YOU, and you alone, do not hesitate to leave. Nobody else will feel the consequence of exhaustion and over doing it the next day, or week, but you. It is ok to gracefully bow out when your body or mind is telling you to do so.
Enjoy your Holidays Zebra’s!

12/24/2025

Happy Holidays to each of you. For us, holidays come with food, struggles, exhaustion, social anxiety, judgement and lack of understanding by those closest to us. How do you stay positive and keep on smiling with all the challenges holidays bring?
Have a happy holiday season and wishing you each improved health in 2026!