I would really appreciate your vote. Please read my story and why I became a patient leader and advocate. ThankYou.
I am so excited to announce that I have been nominated for several of the WEGO Health Awards in the
Annual WEGO Health Awards.
WEGO Health is a mission driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.
Click link below to learn more about their
Patient Leader Network.
The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice.
With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100,000 yep one hundred thousand inspiring Patient Leaders who raise awareness, share information, and support their communities but often without recognition.
I was diagnosed with osteonecrosis also known as avascular necrosis in late 2014. I was told it was due to the trauma I suffered to my knee(medial meniscus tear)
I remember how I felt, I remember how afraid I was and also a feeling of hopelessness.
If doctors couldn’t help or fix me or even try what was I to do.
I never want anyone to feel that way starving for answers to questions about a new diagnosis and no place to go and no one willing to take the time to explain your new diagnosis. I new others had to be feeling the same way as I was and what an awful feeling that was . Sure I have support from my family but they don’t really understand the pain no one can unless you have it.
So I started the support group Avascular Necrosis/Osteonecrosis Support Int’l to be a safe haven if you will, for anyone that suffers from the disease. On occasion we also allow a family member in the group if the member is comfortable with that so they can also see how this disease/disorder effects people, so they can learn from awareness and education, to have an idea just the type of pain their family member has.
The physical and psychological effects can be debilitating and isolating. Especially when you have what I refer to as a flare up of pain. You can’t plan to go to that wedding next month, you don’t know how you’ll feel in an hour.
The pain can be constant day and night pain or come at any time out of nowhere or in waves and they’re quite perturbing. It’s like a hot lightning bolt and a sledge hammer hitting you at the same time and it can be shocking to those around you,because you end up maybe screaming or yelling,sometimes swearing or just overall mood change because the pain is so intense words truly cannot describe. Some words are hot stabbing shooting debilitating and yet frozen , tourniquet like cutting off your blood supply cold pain that’s what we feel.
Its not just the pain that affects us , but also the sadness or depression that can often come with it. When we think about the future and pain gets in the way of all our plans expectations, it’s a bit shattering.
Everything seems to sort of fall apart and right now you can see only the broken image of the new you .
It’s like looking in a shattered mirror all these different fragments that no longer make you whole.
My life became very fragmented and it was a moment to moment thing because I didn’t know how I would make it through that particular day or make it through what’s going to happen tomorrow. When I was first diagnosed my mind was all over the place.
I’m not terminal but I felt like I was , because my life as I once knew it was done…over.
No doctor I saw had any plan of action to help me in fact I was told we will wait until the joint collapses then replace the knee . Talk about mind blowing!
Osteonecrosis took my career in optical which I loved. It took my hiking in the woods away which I enjoyed. It limits me which I hate. But it’s also given me a new purpose and that is spreading awareness, discussing new treatments, the chance to educate , and reaching out to others. I am a patient leader and activist. Making the invisible, visible
If you allow it, the pain and mental shit you go through when you live in pain and with a rare disorder to boot whether it’s constant or sporadic it can be toxic to the mind and soul sucking.
God forbid don’t ask for pain meds.
When I was first diagnosed my first Ortho said the pain will get intense as if it wasn’t already but I don’t give pain meds. I wondered how bad will it get? I’m already in such pain I can barely stand it. Thankfully my family doctor gave me some pain medicine.
It helped but I don’t want to take it. I’d much rather find out how to fix me.
I’m not some junkie looking for a fix, hell I don’t even want to be at a doctors office.
I would much rather be working or frankly doing anything but sitting in a doctors office.
There is so much stigma that goes along with having chronic pain .
The generalization that everyone is claiming they are in pain just to get drugs is unfair and incorrect, and I think we have to be very careful because pain for most of us is invisible,to others.
When we are out of balance mind ,body , and spirit it makes it so hard to focus.
It makes anything and everything worse.
So we have to change our mind set,respect and do what we can to help our body,and interact with others.
Usually I think people will find that in a support group even if they don’t talk they can listen to people who have the similar experiences, frustrations , challenges,pain, treatments or lack of treatment availability or just simple acknowledgement of I know what your going through, many days is a great help.
And it’s very hard to find that outside a support group.
I never insist a new member speak unless they want to. Some are just so devastated by the diagnosis that they have no words. When I see a new member especially a newly diagnosed one, my heart just knows how much fear they have and how afraid they are. I always let them know that can say anything here and it will remain here. But if they are not ready that’s fine to.
I also offer to send them a copy of a booklet I wrote about avn/on.
I know later their words will come. Right now they need to know they are not alone.
I also raise awareness by several
Personal Blog on word press and blogger
That’s why I am a patient leader and activist.
Here is the link to my WegoHealth profile.
I would appreciate your vote.
You can vote daily up until September 1, 2017.
Here is link
Current Nominations in The 6th annual WEGO Health Awards
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What is osteonecrosis? The term literally means bone death -osteo =bone necrosis=death.