"I believe life with chronic illness is hard enough without having
additional issues working  with your  medical team."

—Patti DeMuri

 

hands holding each other

Living With Chronic Illness Isn't Easy. 

The great news is that you don't have to do this on your own!  
Through being informed, having better communication and stronger 
relationships, your medical team can work with you not against you

I will work alongside you, step-by-step, in building
your own caring, collaborative medical team.

How Much Would Your Life Improve If You ...

* Could relax about the future because of your confidence in your
collaborative, caring, medical team
?

*Felt comfortable communicating well with your doctors?

* Could knowledgably and self-assuredly  
facilitate communication between your doctors?

*Were proud of the trusted medical team that you
helped create and coordinate?

*Could identify, prioritize and share your most important
health concerns
with your medical team?

*Felt secure knowing you had created an ER and hospital plan?

* Had the understanding, confidence, support and resources
to proactively handle medical care issues

*Were able to create improved health and health care
for you and your loved ones
?

Your Journey

I know how overwhelming it is when dealing with chronic illness.
There is so much to learn while you have even less time and energy.
There is an easier, quicker way towards your collaborative
medical team and better health.

Enjoying the life together

Our Team Power course will help make your medical
 journey shorter and less stressful!

Join the Pro Level weekly calls where I provide extra
teaching, 
personal support and answer your questions.

Topics covered include:
Your Medical Team (what/who you need, how to decide)
Family Values and Goals (priorities, communication)
Talking to your Doctor (personalities, question templates)
Appointments  (parts of, sharing agendas, care plans)
Medical Records (how to get copies, what to bring and when)
Communication between Doctors (notebooks, etc)

Early Bird Pricing ends October 9th!

Register Now

 

Our Journey

For years, my daughter suffered with abdominal pain and severe fatigue but doctor after doctor seemed to dismiss or ignore these issues.  

Her pediatrician felt it was anxiety, common for adolescent girls, especially bright and high functioning.  The GI doctor claimed it was IBS (Irritable Bowel Syndrome) and in her words, "Her symptoms will resolve once Mom and daughter accept the diagnosis."   Her pediatric psychologist, a wonderful ally and advocate, quickly diagnosed her with anxiety that was caused by her pain and fatigue but was not able to offer anything to help with her symptoms.

No matter how we approached it, we couldn't find and communicate effectively  with a doctor who was able to figure it out and help her feel better.

Finally, my 14 year old daughter begged and negotiated with her GI doctor to do a one month trial of elemental formula via an ng feeding tube, in hopes it would provide relief from the her constant stomach pain and fatigue.  Her GI doctor grudgingly agreed but was resentful and unhappy about it.

Three weeks into her trial, the change was amazing!  Over the next year, she went from 65 lbs. to a healthy 90 lbs with enough energy to attend school full-time as a freshman in high school.

Eight years later, Becca has been diagnosed with multiple rare diseases requiring complex care across multiple specialists.   Each of those encounters taught us more about the medical system and the challenges of getting treatment for chronic illness.  

Through trial and error, we learned  how to talk to the doctors and which doctors were a good fit for us.  Parenting coach training taught us how to set goals and build strong relationships.  Research into the medical system helped provide insight into ways for us to help make it easier for doctors to do their job.  

Unlike our earlier experiences,  Becca is now an active participant of her collaborative medical team.  She and her providers work together to address her issues, based on her priorities and values.  

After so many years, we are no longer doing it alone - what a relief to have doctors who are sharing the journey with us!

About Me

PattiandDogs2015
Patti with Bella and Tasha

 I'm Patti DeMuri, the founder of Healing Hugs Haven.  I am 
an ACPI certified family and parenting coach/consultant.
I am a mother to three, including a young adult daughter
who has multiple rare, chronic illnesses including eosinophilic
esophagitis, celiac disease, Ehlers Danlos Syndrome, postural
orthostatic tachycardia, vocal cord dysfunction an 
disaccharidase enzyme deficiency.
 
My unique perspective on the medical system includes the insider 
 knowledge of supporting a spouse through medical school, residency, fellowship and an established position within a teaching hospital.
 
My love of science and programming, lead me to 20+years working for DNASTAR Inc, a molecular biology software company as a project manager and programmer.  Within this setting, I have been a participant and a fascinated observer of the growth of  the genetics field, from $100 million dollar human sequence to NextGen sequencing at a $1000 per genome.  As a member of the rare disease community,  genome research brings hope of understanding, diagnosis, treatment and a cure.
 
Healing Hugs Haven is the combination of my experience as a medical mama, my coaching, team building and relationship skills, my insights and understanding of the medical system and my science background to help other families living with chronic illness.  

When You Have Completed This Course You Will Be Able To....

Testimonials

Course Material

  • I do love and appreciate what you're doing for people like me. I really wish I'd found a resource, like what you're offering, a decade ago...I know it would have made our journey look different had I had the info and support you provide early on in our medical advocacy process-with each of our family's various issues. So, thanks for all your doing and the heart you have behind it!
  • It helped remind me of the importance of setting clear action points for most appointments. It also taught me that it is important to provide doctors information in the format they are trained to receive it in--working from their perspective helps them hear my perspective.

Group Q&A Coaching Call

  • Dealing with chronic illness or rare disorders feels isolating, exhausting and challenging and it takes creative and problem solving thinking. Meeting with others in similar shoes helps make you feel not alone while coaching helps remind you of your goals, the possible solutions and best processes as well as new ideas. I enjoyed the companionship of the coaching class. I think what did change was being reminded to choose to look at the whole process a lot more like a business rather than (being) personal. The major benefit of being part of such a group is hearing that I am not alone in this and that some of the unbelievable stories and lack of best care stories are not unique to me--thus it is not me that is the problem but a breakdown in the process or a wrong "business" fit.

Pricing

Basic
$97

6 Weekly Educational Videos

Slides, documents and resource lists

Private class forum to ask questions and
share tips or ideas (moderated by Patti)

Bonus Week #1: Medical Records -
The Good, Bad and Ugly

Bonus Week #2: Patient Advocacy

Pro
$97 ($297)

6 Weekly Educational Videos

Slides, documents and resource lists

Private class forum to ask questions and
share tips or ideas (moderated by Patti)

Bonus Week #1: Medical Records -
The Good, Bad and Ugly

Bonus Week #2: Patient Advocacy

**8 Weekly Group Q&A coaching call
(Live and Recorded)

Curriculum

Week 1:  Why you need a medical team?
Week 2:  Diagnosed:  What now?
Week 3:  Deciding what's best for your family.
Week 4:  Preparing for your Appointment
Week 5:  How to talk to your doctor
Week 6:  Managing your medical team

 

Bonus 

Week 7:  Medical Results - The Good, Bad and Ugly
Week 8:  Patient Advocacy

Enroll by October 9th
for Early Bird Pricing

Pro:  $247    $297        

Medical Dream Team (MDT) Pro Get PRO Early Bird Pricing

Basic :  $87   $97

Medical Dream Team Program Get Basic Early Bird Pricing

Register Now

FAQs

Class starts on October 19, 2015

 

»  Is it really worth the $297 amount?

What is your health worth to you?

  • For the cost of a doctor's appointment or a prescription, you get tools, resources and the support needed to change your healthcare and your life!
  • You could hire a Patient Advocate to work with you.  According to the New York Times article, hiring a Patient Advocate to assist you costs $150-$200 per hour.

What is your time and energy worth to you?

  • Not only will the resources and information save you time and energy, it will transform your relationship with your doctors into a collaborative, partnernship.
  • Say 'Good-bye' to wasted appointments where nothing is done or worse yet, the appointment is counter-productive to your goals.

Being a confident partner in your caring, collaborative, medical team - PRICELESS!

 

»   How is this different from advice I get from websites, friends or groups on Facebook?

  • This course contains tools and techniques, to collaboratively work with your medical team.  These tools and techniques have been tested and refined.
  • Unlike more informal sources, you receive accurate information from trusted sources.
  • This course is much more than one more website with advice on dealing with your chronic illness.  It's a confidential, supportive environment where you work along with others in a small group environment, on making real changes in your healthcare situation, using proven tools and getting coaching and help all the way

Provides structure and supports you through a paradigm shift in how you approach and handle your healthcare!

 

»   Basic vs Pro?

Basic

  • Basic provides the tools and techniques to teach you about building and managing your medical team.
  • Access to a moderated forum to ask questions and share ideas.

Pro includes Group Question & Answer Coaching Calls.

  • Each weekly, ninety minute call provides additional teaching and coaching.
  • Includes a weekly check-in and the ability to work through issues.
  • Powerful, group based brainstorming and problem solving which leverages our varied backgrounds.
  • Allows learning from hearing how others approach challenges.

What if I am unable to attend the calls live?

  • Each call is recorded and available as an .mp3 on the website.
  • Questions can be entered in the forum that will then be answered on the live call.
Through support and coaching,  helps you build your collaborative medical team,  to turn venting into problem solving and use positive actions to create proactive solutions!  

Register Now

 

Feel free to contact me at patti@healinghugshaven.com if you have any questions or comments.

By making a purchase from Healing Hug Haven, you agree to our Terms of Service and have read our  Privacy Policy and Disclaimer .