As in so many areas of life, it is hard or often impossible to know 'what you don't know' or to recognize what hidden issues or dangers are out there. When you are dealing with doctors and medical issues, what you don't know and the hidden dangers of staying with the wrong doctor, can be disastrous and even life threatening. The effects of staying with 'a wrong doctor' can vary from mild frustration to long term effects on the quality of your healthcare. Changing doctors isn't easy or … [Read More...]
If you have been in the rare disease world for any length of time, you have heard of a rare disease expert who has closed their practice, retired from patient care, been pushed out of a larger organization, or opened a private pay clinic. Experts dealing with mitochondrial disease, mast cell diseases, autonomic issues like POTS, and others have left leaving even more patients without appropriate or even adequate care. The sad part is that it is rarely the doctor's choice to step back from … [Read More...]
Life with chronic illness often includes numerous health care providers which carries it's own challenge. A collaborative health care team can enhance and improve your life whereas mismatch with even one doctor can have serious or even life threatening results. According to a 2010 Practice Fusion survey, patients average 18.7 different doctors. For those with chronic illness, especially multiple rare chronic illnesses such as my daughter, that number can easily double or … [Read More...]
Yes, the health care system isn’t built for people with rare, chronic illness but that doesn’t mean you can’t get what you need.
- Do you feel like you’re on your own because your doctor doesn’t know or understand your rare disease?
- Do you keep getting bounced from one doctor to another without getting help?
- Does worrying about talking to your doctor keep you up at night? Have you tried speaking up but it didn’t go well?
- Have you heard “You’ll just have to learn to live with it” or “It is just stress”?
- Is your heart heavy seeing your child in pain without a way to help?
Living with chronic illness and dealing with the broken medical system is overwhelming and frustrating. Not only are you or a loved one sick, but you have to handle doctor appointments, tests, diagnoses, medications and the ever ‘helpful’ insurance company. Which is all bad enough but it often takes years before finding a doctor to give the right diagnosis.
“There is nothing worse than seeing your loved one
suffering and not knowing how to help them.”
I understand. I’ve experienced all of this and more with my daughter’s medical journey. But it doesn’t have to be this way. Our life has changed and so can yours. Imagine for a moment…how would your life change?
- Imagine finding and working with the right doctor for you. Not having to have all the answers, to bring to the appointment.
- Imagine working with doctors who are willing to listen to you, that include you and encourage you to learn about your diseases.
- Imagine the relief knowing that your doctor has got your back.
- Imagine knowing how to safely and effectively advocate for yourself and your family, anytime and anywhere.
- Imagine understanding the medical system. Being able to strategically handle the good and bad doctors, hospitals and encounters.
- Imagine getting the health care you and your loved ones need to live life to the fullest.
You and your loved ones deserve the very best care!
My mission is to empower people with rare, chronic illness to become confident, effective advocates and collaborative partners in their health care.
I’m Patti DeMuri and I help people with rare, chronic illness understand and navigate the medical system to get the health care they need. Combining insights into the medical system with proven communication techniques, I teach people how to work within the system and create collaborative relationships with their medical providers.
It all starts when you make a decision. The first step is to download my free ‘Patient Appointment Planner’. Inside, you’ll learn what you can do to help your doctor help you! To get instant access, just enter your name and email address in the box up on the right. That’s it!
With healing hugs,
Health Care Coach
‘Medical mama‘ to young adult daughter, Becca, with EoE, EDS, POTS, MCAS, mito, VCD, celiac, and migraines.
P.S. Don’t want to wait to get started? Schedule a complimentary health care strategy session to talk about what’s holding you back in getting the health care you need and make a plan to move forward. We’ll also see if we are a good fit to work together. Send me a message below with contact info so we can set up a time to meet.