Marlene's Dysautonomia Journey

Can identify. Life 😞

Please see Marlene's update. Funds have been used on medical expenses only but will be depleted as of tomorrow. We appreciate your generosity. Please share the continued need with your Facebook friends!

Help Marlene Edden Beat Dysautonomia's Odds, organized by Terri McKenzie Hi, my name is Terri McKenzie and I'm raising money to help my friend, Mar… Terri McKenzie needs your support for Help Marlene Edden Beat Dysautonomia's Odds

TikTok · CINNAMON's video 22155 likes, 2684 comments. Check out CINNAMON's video.

Rough day, but I made it through. Right now I’m having chest pain that followed heart flutter. Hoping to fall asleep soon, and praying it will be a better day tomorrow.

SPEAKER SPOTLIGHT:
Meet Dr. Elisabeth Golden, the Keynote Speaker for DysCourse!

Dr. Golden is a board-certified neurohospitalist at UT Health Tyler who specializes in neuromuscular and autonomic disorders. She believes every patient has a unique story, and paying attention to the story is key to a therapeutic relationship. Dr. Golden is UCNS board-certified in Autonomic Medicine, a member of the American Autonomic Society and faculty member of The Residents Course. Dr. Golden's presentation topic for DysCourse is "Tools for Managing Autonomic Disorders". Please continue to follow TDP for updates on when registration opens for this event!

Thank you again to our partner organizations for joining us in creating a global community of dysautonomia patients and caregivers through DysCourse: Standing Up to POTS, Dysautonomia Support Network, Australian POTS Foundation, The Multiple System Atrophy Coalition, Dysautonomia Information Network - DINET, Hope for Team Tara (More TBA).

What Is POTS? Share this video to help raise awareness about postural orthostatic tachycardia syndrome (POTS), a neurological condition that is one of the most common forms of…

Yeah!!!! Home again. I feeling much better now that I just have dysautonomia/POTS to deal with. The ER, PCU, and cafeteria staff prioritize patients’ needs. I was blessed to have awesome nurses taking care of me. I don't remember all the names, but Grace has been exceptional from the time I met her back in December 2022 and again this last admission. I also had a very nice, prayerful, joyful roommate. We planned to keep in touch.

Overall, God is good, and His mercy endures forever. They are new every morning. Thanks to everyone who took the time out to pray for me. May God Bless You!
🙂❤️🙂

Got to visit this sweet soul and it was very good to see an even brighter smile on her face. She is feeling "better". (Better for Marlene = back to baseline = still with Dysautonomia but without the scarier symptoms from new meds which have now been D/C'd). I really like the conservative approach they are taking at Lawnwood. Backing way off of meds and not rushing into new meds before thorough evaluation.
God gave Marlene a mutual encourager for a roommate and when she introduced me, her roommate said, "We've just been sharing the love of Jesus." They are joining one another in prayer - so very sweet. Marlene appreciates all the prayers and kind words that have been sent her way! She is still awaiting the results of her stress test.
Specific prayer requests:
1) Wisdom for staff
2) Relief from pain, especially headache
3) A good night's sleep (which we all know is a miracle in a hospital!)
4) Financial needs to be met.
5) (Last but not least) For this setback to be used for God's glory.

Heart rate is low blood pressure a little high. I'm here trying to smile through the pain. I'm admitted and waiting for a room. Thank you all for praying for me.

UPDATE: Marlene is still awaiting a hospital room. They have taken her off of all of her meds except one I guess to try and get things under control and start from scratch, which seems a good plan. Her heart rate is still low and she is experiencing pain, thirst, and fatigue as well. Your continued prayers are appreciated.

Urgent prayer request for Marlene Logan-Edden. She went to the ER today with a multitude of symptoms that mirror the side effects of a medicine she was placed on 4 weeks ago. (We do not know for sure that the medicine is the cause, but are concerned that it may be.) When she got to the ER, her heart rate was 41, so they immediately did an EKG and it showed an abnormality so they are getting a room ready for her. Please pray that the doctors would be able to accurately diagnose the cause of this new cluster of symptoms and that her concerns are heard. I (Terri) will keep you posted as soon as I have updates. Thank you so much to all who continue to support, encourage, and pray for her!

His ways > our ways.

You can join the TTF mission and fight for the World's Most Vulnerable People today. Visit https://community.timtebowfoundation.org/give/437953

One of the hardest things I've ever been told is "there is no cure."










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📣ACTION ALERT!📣 Dysautonomia International is asking all US residents to email, call and tweet your Congressional officials this week to ask them to support $50M in POTS research funding in the FY2024 NIH budget. Take action in less than a minute at: bit.ly/FundPOTS

Earlier this month several of our Board members met with over 30 House and Senate offices in two days, pushing for a $50M increase in POTS research funding. We fought back tears, anger, and frustration to passionately advocate for millions of people suffering from this devastating condition who have been ignored for far too long.

POTS impacted an estimated 3M Americans before COVID, and new research suggests that the POTS population has at least doubled to 6M Americans since the COVID pandemic began. The NIH receives more than $47 BILLION in taxpayer funds every year, and they put less than $2M of those funds into POTS research. That translates to about 33 cents per POTS patient. We are worth more than 33 cents! Diseases that impact about 1 million Americans, like Parkinson's and multiple sclerosis, receive well over $100M in annual research funding from the NIH, translating to over $100 per patient in NIH spending. POTS is the second least funded disease on the NIH’s categorical spending report (only vulvodynia, another women's health condition, receive less funding than POTS). This has to change.

If you are a US resident, please join the fight for a better future for millions of Americans struggling with POTS, and millions of people living around the world with POTS, by contacting your Congressional elected officials today to ask them to support $50M in NIH funding for POTS research!

Take action at bit.ly/FundPOTS

Please consider donating to support Dysautonomia International's research, education and advocacy work at dysautonomiainternational.org/donate

Looking forward to another treatment session tomorrow in Boca. Thanks to all who have contributed and shared the link to the Go Fund Me set up on my behalf to help make this session possible.

Please click on the link http://gofundme.com/f/help-marlene-beat-dysautonomias-odds
below to donate, share, and view the latest updates on my medical journey. May God bless you!!!

P.S. I will be giving more frequent updates beginning March 23. I’m getting some technical issues resolved. Thank you for your patience and kindness.

Last week was rough. I have the allergies added to everything else also. If my body is going to hurt and feel that bad, there should be more rain so at least my grass would be greener. Today, I am feeling a little better. 🙂

Marlene is blessed to have the generous friends that she does but her needs persist. She hates to ask anything of others so I (Terri) am asking on her behalf that you give if possible and, just as importantly, pray for her and share her GoFundMe to your social media pages. Thank you so very much to those who have already given. Feel free to read the update I posted to her GoFundMe!

Help Marlene Edden Beat Dysautonomia's Odds, organized by Terri McKenzie Hi, my name is Terri McKenzie and I'm raising money to help my friend, Mar… Terri McKenzie needs your support for Help Marlene Edden Beat Dysautonomia's Odds

Proverbs 17:17

On Monday, I was sitting on my bed when my heart did a few quick, hard beats, then went back into normal rhythm. This has been happening randomly since the ablation, but 80% less than before. The episode on Monday was followed by very noticable chest pain. I took nitroglycerine which helped to ease the pain. For that whole day, I felt weird. Since then, I’ve been trying hard not to think about or do anything that may cause more stress. I have an appointment with the electrophysiologist tomorrow.

Life's little secret of the chronically ill, especially us with invisible illnesses.

Please don’t assume

Today I went to an appointment with a neurologist in Port St. Lucie. It was a very pleasant experience. The receptionist was very welcoming. The doctor actually listens to me telling him my symptoms without making me feel witless. He takes the time to explain his diagnosis and how his suggested treatment will help me. I am very pleased with his service.

It's hard. Really tough spot to be in. Thank you God for surrounding me with friends and family who are there for me in my weakest moments, on days when I feel I cannot go anymore.

Work on your gifts and talents in a way that challenges you. Don’t compare your skill level to anyone else’s. You don't have to be the best. Instead, strive to be your best!

I am grateful for her work.

Kelly Freeman is the Founding Director of The Dysautonomia Project and co-author of The Dysautonomia Project Book. Kelly, a dysautonomia patient herself, aims to transform the care of patients with dysautonomia through the education of physicians, patients, and community leaders with the mission of speeding time to diagnosis, proper assessment, and treatment of patients in community-based clinics and hospital settings around the world.

After realizing that medical professionals in her own community were lacking knowledge about dysautonomia, Kelly set out to create awareness and education on the community level. This is when The Dysautonomia Project was born. What started as a small vision in May of 2014, has now grown into a large mission to educate our community-based medical professionals and reduce diagnosis time from 6 years to just 15 minutes. Through the distribution of The Dysautonomia Project Book and participation in various community educational events, Kelly Freeman is changing how doctors approach autonomic disorders each and every day.

My brother is a low functioning downsie. He used to love to hold babies but it's rare someone let's him now. My wife and I let him hold our baby today and here is his look when we gave her to him and then the way he held her without movement for 5 minutes. I almost cried.

I am allergic to oak pollen and of course lives in Florida. Got all the symptoms mentioned below.

Image: Allergies: Symptoms, Reaction, Treatment & Management Found on Google from my.clevelandclinic.org

I found out yesterday that wearing my dysautonomia awareness t-shirt works. I had people come up to me because they have never heard of it. Here are some information on dysautonomia and POTS.

Dysautonomia: Symptoms, types, and treatment Dysautonomia refers to a set of conditions that result from a malfunction of the autonomic nervous system (ANS). Learn more here.

Tim Tebow is awesome. It's really cool that he takes the time to visit Vero for the prayer breakfast. 👍

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." -Philippians 4:8