PA for POTS Awareness

In my angry phase so not going to say much. Blessed my son can start IVs at 16 better than a lot of medical folks out there. 🙏🏻
Frustrated that I can initiate an incredibly healthy diet and feel worse. My flares involve shortness of breath, chest pain, fatigue, and everything is 100000x harder than normal. Not for the weak!
This too shall pass…….
Keeping it real. NOT LOOKING FOR PITY! Sharing what it’s like to have POTS.🤬

Always show yourself grace! 🩵 Took me a long time to get here! 😘

Day #14……last few days have not been awesome. 🤷🏻‍♀️ My belly is super bloated 🤰🏻, zofran has been my best friend (along with Gas-X, pepto, and Mylanta) 💊, my head hurts 🤕, sleep has been rough 🥱, and my POTS has flared on and off. 🙈 Ironically, I had the exact same thing happen when I did my previous Whole 30s on the exact same days of the diet. Must be working! 🙏🏻🙏🏻🙏🏻
Only 3 more days til I’m done working my 100 hours since last Tuesday. 🤯🫣💪 Then it’s much needed/deserved lake time with the fam! 🌊☀️🎣😎 Bone broth for dinner again. 😛

For those of us who had the pleasure to meet these 2 wonderful people at our last event, we know how they care about people like us! Thank you for all you do!! 🩵

Dr. Nick and his wife Dr. Erin opened Connect Chiropractic and Wellness in order to provide exceptional BRAIN-BASED CHIROPRACTIC CARE to the Shelby Township community. Our specalized approach focuses on the intricate connection between the brain and body, providing holistic and effective treatments.

Visit us to experience the difference Brain-Based Chiropractic Care can make in your life! 🧠

Interesting read although not surprising…..
The medical community needs to do better!
🙏🏻💙

Dysautonomia International Medical Advisory Board member Dr. Jeff Boris recently published an important new study in the Journal of the American Heart Association, documenting long term outcomes in adolescent onset POTS.

This study was modeled, in part, on the Big POTS Survey led by Dysautonomia International, Vanderbilt University and University of Calgary. While the Big POTS Survey is an international registry over over 10,000 POTS patients, the major caveat of any online survey is that there is no clinical validation that the patients enrolled actually have POTS. Dr. Boris' study has replicated the Big POTS Survey, and expanded upon it, in a cohort of over 220 of his patients who he diagnosed with POTS.

Historically, many pediatric POTS patients were told by doctors that they would "grow out of it." This study makes it clear that most adolescent onset POTS patients do not grow out of it. Patients in this study had an average onset of POTS at age 13, and after an average of nearly 10 years after symptom onset, 99% still had POTS symptoms.

There are many important findings in this study:
➡️ Prior to diagnosis, over half of pediatric patients were told by a doctor that they symptoms were "all in their head".
➡️ After being diagnosed with POTS, 75% of patients saw a doctor who said they had never heard of POTS.
➡️ Over 70% of patients reported that ondansetron (Zofran) improved their POTS symptoms by at least 50%.
➡️ Over 60% of patients reported that the beta-blocker nebivolol improved their POTS symptoms by at least 50%.
➡️ Over 50% of patients reported that aerobic exercise helped improved their POTS symptoms by at least 50%.
➡️When asked what the most beneficial treatment was, the most common answer was medication, followed by increased salt & fluids, then exercise.
➡️ Over 80% of POTS patients were diagnosed with another condition, with migraine, EDS, vitamin D deficiency, gastroparesis & MCAS among the most common comorbidities.
➡️ While POTS can be very disabling for anyone, male patients tended to have fewer and less severe symptoms, and were less likely to be diagnosed with co-morbidities, than female patients.

Dysautonomia International provided Dr. Boris with a small grant to make this journal article free open access for the patient and clinician community. You can read the journal article here: https://www.ahajournals.org/doi/10.1161/JAHA.123.033485

Needed a little extra support today…..is it my new restrictive diet, candida die off, the heat and humidity 🥵, or the fact I painted my toes blue 💙….. nobody knows! 🤷🏻‍♀️😂🫡 Those of you with chronic illness flares get it! Blessed to be able to hook myself up when needed!! 🙏🏻
Stay cool and hydrated out there!!!
Heading into a long stretch of work….I got this! 🙏🏻🙏🏻🙏🏻💪💪💪
❤️saline

Day 7….1/4 of the way there 🙏🏻🤗🎉
I think it’s really cool that my hospital has a farm that produces all kinds of freshness! 🥦🍆🥬🥕🥒🌶️🌷🌻
It was such a beautiful day out when I finished my rounds. ☀️ I think I’m feeling better already. This has been easier than when I did Whole 30s in the past. Not sure if it’s the supplements or having more experience eating this way….probably both! 🙌
#7.7nutrition

Hope everyone had a happy and safe 4th! 🎆🇺🇸A couple of new meals I made with turkey this last week. Sure would pair nicely with a glass of wine! 🍷🫣😂 I won’t lie…it’s a lot of work! Will be worth it when I feel better!! Think I already do. 🙏🏻🙏🏻🙏🏻 This diet is also good for interstitial cystitis and inflammation in general. 🙌
❤️🤍💙

Day #1…..
Short term discipline for long term gain. Dinner was work but delicious 😋

Tomorrow I start my candida detox and the journey to healing my gut. 🙏🏻 I can do anything for 30 days……but if I’m short with you, I’m probably hangry, tired of cooking, and in the midst of caffeine withdrawal. 🫣🤷🏻‍♀️😜 A pretty grocery list makes it all seem better. 😉
#7.7nutrition

Finally feeling mostly recovered from our fun event and now taking this new diet change thing seriously……🩵🎗️🙏🏻
I have never made one of these before, but Taylor from 7.7 Nutrition thinks I can do it. 😳😬
Wish me luck! 🍀

Huge shout out to OG B’z Tattoo, Tieks, Bark Box, Loopy Case, Too.Ra.Loo, and Renew My Wellness for raffle prizes for yesterday’s PA for POTS event!!! Your donations let us keep doing what we do! 🙏🏻🎗️🩵
’ztattoo

What an amazing day!!! 🩵🙏🏻 So thankful to all of those who came out and made today so great! Special thanks to 7.7 Nutrition, Dr. Erin Kepreos, Renew My Wellness, and my Crush POTS crew! You guys rock!!! 🤗
#7.7nutrition

Final preparations for tomorrow!!! 🌸🎗️🧁

Gluten and dairy free cupcakes with plant based frosting. 🧁 🩵 Thank you Anna! 😘
Fun stickers to bring awareness everywhere! 🎗️🩵 Thank you Bailey! 😘
More awesome raffle prizes…. Thank you Brian and Light Rx!
See you tomorrow at 1pm!!! 🤗
#🩵ink

Raffle prizes continue to roll in for Saturday’s big event. 🥳🤗🎗️ A big THANK YOU to Renew My Wellness who will be onsite with information on their services and TooRaLoo for their generous donations!!!!!!!! 🙏🏻🩵

*️⃣ Note the minor time changes to Saturday’s agenda. These are some of the lab results from my FIT test and Gut Barrier panel if you were wondering what they looked like. I knew tomatoes 🍅 were a problem for me even though I love them. They irritate my interstitial cystitis! 😬😖 7.7 Nutrition will explain more about this and what can be done to make us better. 🙏🏻
#7.7Nutrition

My house is overrun with stuff for this weekend’s awesome event!!! 🎉🙏🏻🩵🤗 Just 5 days away!! 🙌💪🫶
If you’ve never attended one of my gatherings, just know that we are very informal, there is no pressure, we come comfy, and together we will learn, support, and have an amazing time! 🩵

PA for POTS Awareness Summer Gathering ☀️🍉🎗️ is just 2 short weeks away! We have an awesome afternoon planned. 🤗🩵🥳
I want to give another huge shout out to the Visible app who also supported this event! I recommend everybody down load the free app and give it a try. My reading today advised I needed a day of rest which is 💯 spot on! 🫠
Hope to see many of you on June 8th in Auburn Hills! 😘 It has been far too long!!

This is an excellent conference!!! 🩵🩵🩵

😂🤭

We present, the classic POTS shower pose.

I just want to give a big shout out to Taylor Forgione from 7.7 Nutrition! 👏🙌 I had a great experience there this afternoon, learning more about nutrition and its role in inflammatory conditions. I want to be HOT 🥵 today… Honest, open, and transparent, from my favorite podcast. 🙏🏻 It has been a while since I’ve met with a medical professional and listed all of my conditions. Being a medical professional myself, I know it is difficult for those who aren’t like us to understand us. I felt a little silly listing off POTS, dysautonomia, hypermobile Ehlers-Danlos syndrome, mass cell activation disorder, Sjogren’s, Raynaud’s, and almost forgot interstitial cystitis lol. And through it all by the grace of God, I’m still standing! 🦾🙏🏻🥳 I just thought you should know a little bit about who’s hosting the upcoming gathering on June 8. 7.7 Nutrition will be in attendance with on site FIT test and gut barrier panel if anyone is interested. I know for me, I’m often hesitant to try anything new. Mostly because I’m afraid of getting really sick again, and also I’m very skeptical about anything making me better. 🤷🏻‍♀️ I saw on one of the reels a young lady talking about how she juiced celery for eight months and was magically healed pretty much of all of the disorders I mentioned above. My plan is to find out what foods bother me and try to avoid them. I’m already gluten and mostly dairy free. This panel tested for 132 different foods! 😦
Looking forward to catching up with you guys in a few short weeks! I love my irises 💜💜💜 in my front yard as you can tell. Have a wonderful weekend! 😘
#7.7Nutrition


Happy Mom’s Day to all of the chronic illness moms and moms with sick kids!!! 🌷🎉💜🎗️
I happen to be both…..and that’s why I do what I do! 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🩵🩵🩵🩵🩵
Hope to see you at the June 8th event!

Just getting a little R&R before hosting our awesome gathering on June 8th. ☀️🌴😎
Here with my daughter Caitlyn who is a long hauler and potsie like her mom. 🥰
Excited to hear Dr. Erin Kepreos discuss her treatment modalities!! And learn about some other alternative treatment options from Renew My Wellness!!
Just a few of the amazing prizes to be raffled off. 🎟️🎟️🥳🥳 My events are always informal…come as you are!! We just want to help those who are suffering and support one another! 🩵

🦓🖤🤍

May is Ehlers-Danlos Syndromes Awareness Month. What are the Ehlers-Danlos syndromes (EDS)?⁠
⁠
The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that vary in how they affect the body and their genetic causes.⁠ 🧬⁠
⁠
⁠Variants in the genes that determine how the body makes collagen and other proteins that work alongside collagen have been shown to cause EDS. ⁠
⁠
At this time, genetic variants have been found in all types of EDS, with the exception of hypermobile EDS (hEDS).⁠🔬⁠
⁠
Connective tissue is everywhere in the body. It provides support and structure to other tissues and organs, including bone, ligaments, tendons, blood vessels, lymphatic vessels, the tissue that holds the gastrointestinal tract in place, etc. ⁠
⁠
❓️⁠Signs and symptoms⁠
⁠
Some certain signs and symptoms are common across all types of EDS. However, these can vary in severity between individuals, even with the same type of EDS. ⁠
⁠
These include:⁠
⁠
• Joint hypermobility⁠
• Joint instability with dislocations and/or subluxations⁠
• Injury to connective tissues in and around joints⁠
• Joint, muscle, and nerve pain⁠
• Scoliosis⁠
• Hernias⁠
• Pelvic floor weakness and prolapse⁠
• Easy Bruising⁠
• Stretchy skin⁠
• Fragile skin⁠
• Scarring⁠
• Slow or poor wound healing⁠
⁠
In rarer types of EDS, there are specific concerns with certain tissues of the body that can present with complications such as:⁠
⁠
• Arterial/intestinal/uterine fragility or rupture (usually⁠
associated with vascular EDS (vEDS))⁠
• Pneumothorax (collapsed lung)⁠
• Severe dental and gum disease⁠
• Severe scarring of the cornea of the eye⁠
⁠
Across all the types of EDS, a number of conditions and symptoms are now also recognized as common. These include:⁠
⁠
• Fatigue⁠
• Autonomic dysfunction (such as fast heart rate and/or low blood pressure)⁠
• Headaches⁠
• Gastrointestinal problems⁠
• Anxiety disorders⁠
• Heavy and painful periods and bladder pain⁠
• Allergies and intolerances⁠
⁠
➡️ Learn more here: https://www.ehlers-danlos.com/what-is-eds/
⁠
❓️What would you like people to know about EDS?

This!!!!!! 🩵🩵🩵

1. You’re not alone.

2. Cultivate an adaptable, flexible mindset. You never know what one day looks like symptom wise so plans often change.

3. Symptom management won’t happen overnight and will likely involve a lot of trial and error. Thankfully, there’s a huge community of people with great ideas to start you down a more promising track!

4. Learning your triggers is important. Just know that they can change over time so keep tabs as they do.

5. Healing is not linear and living with POTS can come with seasons of low symptoms and seasons of many symptoms. This is normal.

🩵

New logo, new chapter…..🩷🩵
Seemed fitting to post this today. 🙏🏻
Excited about the speakers for this event! 🥳🤗
More info to come. Mark your calendars.
All are welcome as always!

So……I’ve taken a long enough break, got my back fixed finally, took many vacations with my awesome kids, almost have them both driving, changed jobs, and now it’s time……
Planning PA for POTS Awareness welcomes Covid long haulers PART 2! 🎗️🩵 Thinking May when we are all on our up swing. 💐 Looking to see who is interested and where people are located as I make arrangements for the gathering.
Please spread the word and reply with comments or questions.

Looking for that perfect gift 🎁 for your potsie??! Who wouldn’t want a gift certificate to an IV clinic! 🤷🏻‍♀️ I’m very fortunate that I can serve up a Meyers Cocktail for myself whenever…but they aren’t cheap at those clinics. 😞
Hope you all take time for self care during the holidays! 🎄🧘‍♀️🥤🧂 And to those who are well and love on us…..know the stress is hard on our bodies. We are doing the best that we can!
Happy holidays to you all!!! ❤️💚❤️💚
🙏🏻🎂

IV start and mug courtesy of the best son ever!!! 🥰 I am blessed beyond measure! 🙏🏻🩵
Probably not normal to have your 15 year old place IVs (which he’s been doing for years) but this is the hand we were dealt. 🤷🏻‍♀️ And the kid places a flawless IV. 👏👏👏 It’s impressive!

Anyway, HAPPY DYSAUTONOMIA AWARENESS MONTH!!! 🩵🎗️ October 🍂 slide sucks and still playing catch up from my incredibly busy last week! I know you all get me! 😘😘😘

🦾 #🩵Aiden🩵 #❤️saline #🙏🏻covidlonghaulers

Good one!!

Our Thursday laugh from