I am taking the 30 day wego challenge
During the month of November, we’ll be holding another round of our Health Activist Writer’s Month Challenge (#HAWMC). We’ve prepared 30 health-related prompts that will help you get creative on your blog, instagram, facebook page, or health community all month long.
Take the challenge and do a post a day for all 30 days of November!
I became a health advocate and activist because one didn’t come with my diagnosis for this unheard of disorder called Osteonecrosis
I didn’t get a booklet explaining my newly diagnosed disease or directions on how to cope with the emotional roller coaster I was going to be on. I didn’t get a phone number for support or if I had questions.
Nor did I get a goodie bag filled with tips and tricks on how to cope with the frustration of trying to find a Dr knowledgeable either ,or a list of treatment options or a list of support groups and I could have really used an advocate.
My Ortho at the time was no help i was just given the diagnosis never explaining the disease or what to expect or what to do. I was told we will wait until the joint collapses and then go from there . I was told it’s called bone death from lack of blood to bone but no reasons why , no game plan to fix it just we will wait until Joint collapses and then do a TKR(total knee replacement)
That was not acceptable to me
No one explained you should sign dozens of consent forms for various other doctors you will be referred to the social security office diagnostic facilities and all the other places you will be referred to because they can’t help help you.
I guess that’s when I started to see Doctors aren’t the magicians I thought they were.
No one in a 100 mikes radius of me could say ” we can help you”
Many doctors often contradicted what another thought would be best
No water therapy
No blood work
I mean it was enough to drive you mad
I could have used an advocate
In fact, I knew absolutely nothing, had no one around me that knew anything and had no idea what so ever what to do with a diagnosis of something I should have at least heard of before.
It did not take me very long at all to figure out that what I needed and wanted most was, in fact, an “Advocate”
I really needed words of support, encouragement and feeling like I’m not in this alone but when doctors can’t tell you much you feel very alone.
I finally went to my local library to read up on it and you know 3 local library’s had not one word about Osteonecrosis
How can I make educated choices about my health when I can’t even locate any information on the disease?
I had to order a book from a library at a medical college (NEOUCOM) it was a medical book that was not that easy to read or understand.
I needed resources given to me an idea of what was going on in my body instead of being on hold in tears for several weeks that turned into months of constant researching
I went to the doctors for a torn meniscus and yes I had that but also had Osteonecrosis
I needed someone to help me learn how to communicate my physical and emotional feelings to the people around me in a way that helped them understand how I felt how my pain was how my mobility is being effected
I needed a place to go to be with others that had the same diagnosis to get clarity
I needed a place ,something to talk to others who understood my muscle spasms my insane bone pain and how to laugh when I had a rotten day
It would have been nice for someone to hold my hand , where are these other people who would understand me and become my support system and explain my disease while I worked on making the best choices for my health
Turns out there was nothing local like that either
Advocates are the voice of wisdom knowledge strength and support.
I became not only my own advocate but an advocate for anyone with Osteonecrosis aka Avascular Necrosis
I started a Facebook group and I’m so proud
Our Facebook support group just grew to be over 400 people, with people from various countries
Right now I have in a booklet for patients newly diagnosed with Osteonecrosis being printed.
It’s a patients perspective on what to do when diagnosed links to a support group. I am very proud of this and I will be sharing it with not just patients but doctors as well. So they can understand the concerns of their patients
Our fb group is fantastic.
Everyone that needs someone to listen can find someone to listen . No one in the group is ever alone ,no one asks questions without receiving an answer.
We as a group have made YouTube awareness videos
We now have awareness bracelets keychains because our disease is so rare we didn’t even have that.
We discuss new treatments and tests that even our Drs haven’t heard of .
We now have a nationwide list of Drs at least one in every state that deals with Osteonecrosis
And we’re working on a world wide list of Drs that know and treat Osteonecrosis for all other countries
Heck I couldn’t even find an awareness ribbon for my disease so I made one a couple years ago and now have it just right I have it in several designs so anyone would be proud to show it off and raise awareness for our disease
I have also in my own quest, found out that eating good healthy food can help ease pain
It may not take it all away but when you go from being in pain 24/7 to it becoming more tolerable it’s like a small miracle in itself.
I was blessed to find a Raw food group on FB it helped me so much it’s called AVN Raw Fighters so much knowledge in that group and you always have help and support as well
I don’t eat all Raw all the time but I’m 75/25 and I am so glad I have found a new way of eating
I also bought Books on macronutrients to learn about keeping my inflammation low or lower A great book is by Dr Joel Fuhrman M.D Eat to Live
It’s not easy especially at first but it’s worth a try
I keep a journal :
A pain journal and a food journal combined with the daily weather. May sound silly but weather affects your body and food can help or inflame the body
I have become a Health Advocate/ Health Activist
Because no one should face any new diagnosis alone. If you have Avascular Necrosis Osteonecrosis join us
And if you like any of the designs please share it