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“When a patient looks for answers himself, he becomes an engaged”
Probably the most basic of definitions. So many in the dark, worse some trying to define e-patient on their own terms for others and that’s how great movements get choked.
Thank you!!
I believe that joint replacement, when possible, is a wonderful alternitive to medications. Doctors have the tendency to misdiagnose due to younger aged people and any doc with hands on education knows that age holds no barriers!!
Thanks, Waynette. Good point. How many joint replacements have you had?
Awesome example with your daughter of why we need to be engaged as patients! How many times has the right choice been passed by because we didn’t trust our gut feeling and assert ourselves, or do research. It makes me wonder. I did this pre-diagnosis. I could have been diagnosed with RA a year earlier if I would have trusted that feeling and carried through. Another year went by before I finally did assert myself and get the referral to a Rheumatologist. In order to do this I had to confront my primary doctor who reacted with anger and proclaimed I was in perfect health. After my diagnosis with RA I saw him for an infection, he never batted an eye or apologized. I had to let him go.
It is easier said than done, but that’s our best shot at health / survival. I loved this Ronda, “I had to let him go.” 😀
I also had to let go my Rhemy. He kept insisting that there were no pain meds more potent than percocet! He also said that i should not have any surgery because it will make more ra in that place! He made me fill out a 3 page questionair each month he made me come in! Goodbye! Now my new Rheumy said that no meds go thru my liver! Why does she lie to me? I read on the note from the pharmacy that they all do! Said my cholesteral med is raising my liver enzimes…i mean what is that?…
Shocking stuff, Judi. I don’t know what they are thinking. Good thing you can read, I guess.
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Oh yes total e-patient here.
And before the internet, I actually spent a year taking Biochemistry and Anatomy and Physiology because I knew the doctors were missing something and I knew if I didn’t figure it out, I would never get any help.
M
It’s vital to be empowered and engaged, as a patient with several chronic illnesses, to get the most out of healthcare and have the best quality of life.
No one who reads this blog should question if they are an E-patient.
We gain information, share information, and learn about RA. We gain a sense of enpowerment about our illness and do not sit in the dark and wonder what is going on.
I have a new rheumy fresh out of his residency. He actually commends me for being informed. It is very refreshing, especially after seeing others comments on here.
Yay! Thanks for the great report! I hope he doesn’t lose that but spreads it around.
As a newly-declared eDoctor, i.e. one aspiring to meet the ambitions and to see the benefits of the epatient movement, I have some questions and some points, and it seems this is a great place to ask them.
I’m new at this, and a stranger working in another country, so I may not see things in the same way, nor have the same conditions and challenges, but my views and hopes are for global improvements in healthcare. I believe we should be world citizens hoping for global improvements as much as citizens of our own countries.
For every sensible, intellingent, engaged, responsible patient I see, I see another who has the same expectations, but who does not accept the responsibility for taking control of their health – two easy examples – the obese snoring patient who could exercise and lose weight, asthmatics who still smoke. Should my approach to each patient type, ‘responsible’ and, for want of a better word, ‘irresponsible’ be the same?
Second point: hindsight in medicine is 20/20 vision. It is very easy to believe with hindsight from a personal perspective what the better option among many could have been. But from the doctor’s perspective, outcomes are never guaranteed, and results of treatments, surgeries may differ widely in two identical patients. How much of the epatient experience is that very hindsight, and how valuable is it in making decisions moving forward? Do you believe you can get the necessary information to make proactive decisions from the epatient resources alone?
Third point: Some conditions lend themselves better to the movement, i.e. chronic morbidities like RA and Crohn’s Disease. Handling acute life-threatening conditions like a leaking aortic aneurysm demand immediate, and I suggest forceful, taking of control of the situation by the doctor involved in a manner that would go against many of the points made by epatients. Is this a problem to you? Where do we draw the line?
I have other questions, but perhaps this is enough to ask for the moment?
Welcome Doctor! Hope I can answer your questions.
1. How to determine that the obese patient is just lazy? Prior to my diagnosis I gain about 20lbs. I hadnt even realized how I had decreased my activity level to minimize my pain. At one point it hit me and I joined the gym. I was there about 10minutes, on the elipitcal machine ( easier on my sore knees). I went home in complete agony. I worked in that pain for 6 weeks before one of the ICU doctors dragged me to the ER. My hip was broke. It was still another year before I was diagnosed with RA.
2.No one source of information is perfect. If you spend time on the blog and Kelly’s FB page you will see one common theme (here anyway) is helping each other realize that the is no one solution or path with this disease or it’s treatments. However, the more we know the better prepared we are to make those important decisions. It doesnt eliminate the doctor it should enhance the doctor.
3.Emergency life saving treatment is just that, there is no time. However, once that treatment is done, the follow-up, recovery, and long term dealing with it can benefit from e-patient vigilance. Medicine is always changing and no one person can keep up with all those changes. Patients that have the time, interest, and dedication can focus on their issues and bring new information to the doctors attention.
Sorry for venting on ya’ll! I get so frustrated when im getting lied to! Ok wish i could find another out here where i live…Ya’ll take care of yourselves and Merry Christmas to The RA WARRIOR’s….. :present:
Definitely! Knowledge is power. That’s how I came upon your site–my doctor wants me to see a rheumatologist because a blood test indicates I might have RA (my mom was just diagnosed with it a few months ago, too), and I want to learn as much as I can before I meet with the specialist.