I am the voice of the newly diagnosed and all Avascular Necrosis/Osteonecrosis and Osteoarthritis patients.
There is a struggle that newly diagnosed patients know all too well.
The anger, the pain and the fear of the unknown can have our heads spinning in all different directions day in and day out as the body deteriorates while the brain wanders through all of the possibilities.
Maybe they are wrong , maybe I was misdiagnosed.
I cant possibly have a rare disease/condition. And osteoarthritis both! I already gave spondylolisthesis how much pain can a body endure.
What will I do ?
I have no information
And no place to find support.
Look no further
I’m just like you
I have Osteonecrosis and Osteoarthritis Spondylolisthesis,Factor V, Hypothyroidism and I’m sick of these diagnoses every year it’s something new.
I am a voice in the community of those of us who are suffering with Avascular Necrosis/Osteonecrosis , and many other conditions.
We are the enduring, we are strong, we are afraid, we will make it.
How you can become an advocate.
First- Advocate for yourself and be an example. Try to take good care of yourself.
You won’t be able to advocate and educate others until you know how to advocate and take care of yourself. Don’t spread yourself to thin. Learn to say no and please learn to listen to your body and rest when it needs rest.
Try to work with your doctors to build a relationship with them and all your health care providers
Understand your rights as a patient.
See Link: https://www.hhs.gov/answers/health-care/what-are-my-health-care-rights/index.html
Don’t be afraid to fire your doctor if needed be.
Research Research and Research….
Learn all you can about your disease, including who can get it, how and why many people seem to have it, stages of the disease if any,how it is diagnosed, what treatments are offered or suggested, and if they don’t offer or suggest anything new or cutting edge ask…..what current research and or studies say.
You need to become the expert and stay up to date, because new data is always being published.
Commit to making sure you are a credible source of information by fact-checking multiple sources before you share news or articles.
Be an educator not a divider.
Turn your interests into ways that you can link to educate on your disease or disorder.
Example: I love cooking ,herbology , photography and writing soooo I have a blog that educates and also discusses the importance of good clean food ,giving your body the best nutrition possible to help combat inflammation,pain etc
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