Posted in awards,patient leader, Awareness

WEGOHealth Awards2019©

Wow I am beyond honored I’ve now also been

Nominated for Patient Leader Hero- Healthcare Collaborator – Rookie of The Year and Best In Show Blog

img_3146

Endorsements Now Open If You Would Like to Vote (link below)

I have been nominated for the past few years in various categories

Thank You for considering Endorsing my nominations

It’s deeply appreciated

My Profile and Info WEGOHealth Link

Avascular Necrosis-Osteonecrosis Education

FlexitarianForLife

My Links

https://avascularnecrosiseducation.com/

www.ChronicallyGratefulDebla.com

https://www.facebook.com/AvascularNecrosisEducation/

https://flexitarianforlife.wordpress.com/

 

https://twitter.com/debbiea001

https://twitter.com/OsteonecrosisMe

https://www.instagram.com/chronicallygratefulme/?hl=en

https://www.instagram.com/deborah_andio/

https://www.facebook.com/ChronicallyGratefulDebla/

 

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Posted in Ahlbacks Disease, Avascular Necrosis, Awareness, Bone Health, Chronic Pain, Factor V Leiden, Inflammation, Osteonecrosis, Pain, Rare Disease Day, RareDisease, SONK, SPONK, The Mighty, Uncategorized, WegoHealth

Rare Disease Day Is Today

Rare Disease Day 28 February 2018

#ShowYourRare

#AvascularNecrosis

#Osteonecrosis

#RareDiseaseDay

Debbie in TheMighty2016

https://themighty.com/2016/07/receiving-an-osteonecrosis-diagnosis-what-to-know/

http://www.ChronicallyGratefulDebla.com

Posted in Arthritis, Avascular Necrosis, Awareness, Blessed, Bone Health, Cardiovascular, Chronic Pain, Diagnosed, Disclaimer, Eat Healthy, Factor V Leiden, Flush not Blush, Food, Homemade Syrups,Tinctures,Rubs, Inflammation, Life, Meditation, Mindfulness, OA, osteoarthritis, Osteonecrosis, Pain, Positivity, Rosacea, Stem Cell, StopTheClot, Support Group, Hope, Uncategorized, Vegetables, Vision, WegoHealth

I Am A Patient Leader to Help and Empower Others ~ WEGOHealth Awards 2017

 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

6th

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.

https://awards.wegohealth.com/nominees/12801

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

FB pages

Instagram

Twitter

Personal Blog on word press and blogger

Chronicallygratefuldebla.com

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

https://awards.wegohealth.com/nominees/12801

Thank you

Current Nominations in The 6th annual WEGO Health Awards

#WEGOHealthAwards

#PatientLeader

Please share this if you would be so kind.

Social Footprint

https://awards.wegohealth.com/nominees/12801

chronicallygratefuldebla.wordpress.com

facebook.com/debbie.briglovichandio

youtube.com/user/debbieandio

twitter.com/debbiea001

instagram.com/debbiea_1962

facebook.com/groups/deadbonediseaseavn

facebook.com/chronicallygrateful.me

facebook.com/avascularnecrosisrarediseasedayfeb29

facebook.com/osteonecrosis-avascular-necrosis-support-913679995417381

facebook.com/onavascular-necrosis-knowledge-752404224891578

facebook.com/yummygoodness

twitter.com/osteonecrosisme

facebook.com/chronicallygrateful.me

facebook.com/morningtalk.health

blogger.com/blogger.g?blogID=4338585393508080811

www.pinterest.com/amp/pin/487444359646285508/

What is osteonecrosis?  The term literally means bone death -osteo =bone necrosis=death.

Posted in Awareness, Bone Health, BreakThroughCrew, Chronic Pain, Uncategorized

Clinical Trials Help & Save Lives

Clinical trials are an important step in discovering new treatments for so many diseases as well as new ways to detect, diagnose , and reduce the risk of getting a disease.

Clinical trials show researchers what helps and doesn’t help in people.

Clinical trials also help researchers and doctors decide if the side effects of a new treatment are acceptable when weighed against the benefits offered by a new form of treatment.

Researchers don't know what the results of clinical trials will be. (If they did, they wouldn't have to do the trials.)

The uncertainty can make it hard to decide if you want to participate in clinical trial.

In rare cases, clinical trial volunteers have been hurt by the treatment or procedure being tested. At the same time, hundreds of thousands of people have been helped and are alive because other people chose to participate in a trial that resulted in a new, more effective treatment.

While clinical trials are important, the choice to participate in one is very personal and depends on your unique situation.

As with any disease before getting treatment, you and your doctor need to weigh the benefits against the risks and decide what's best for you.

Clinical trials are just one of the many types of research that's done before a new treatment or drug becomes available to everyone .

New medicines must first be discovered, purified, and tested in preclinical trials before researchers even think about clinical trials.

On average, a new medicine to treat disease has been studied for at least 4 to 5 years (and sometimes many more) before a clinical trial on it is started.

Would you participate in a clinical trial?

I think I would.

#ClinicalTrials
#BreakThroughCrew
#Advocate
#PatientLeader
#WegoHealth

Posted in Arthritis, AtomicBlonde, Avascular Necrosis, Awareness, Blessed, Chronic Pain, Disclaimer, Eat Healthy, exercise, Factor V Leiden, Flush not Blush, Food, Gluten Free, Happiness, Herbal, Homemade Syrups,Tinctures,Rubs, Inflammation, Meditation, Mindfulness, OA, Osteonecrosis, Positivity, Rosacea, Stem Cell, StopTheClot, Support Group, Hope, Uncategorized, Vegetables, Vision

Get To Know Me

Hi, I'm Debbie and I have Avascular Necrosis/Osteonecrosis, It's a rare disease/disorder where you have a temporary or permanent loss of blood supply to the bone.
I developed my avascular necrosis/osteonecrosis after I suffered a meniscal tear. I'm lucky and very grateful because the doctors don't feel it will go to any other joints . Others including small children are not so fortunate.

We need more research on so many levels and trials.

I love to learn.
I love to educate
I love to help people realize their is always hope.
I have started to go to a more plant-based diet to help the pain caused by inflammation.

However I still will eat meat once a week no more than 2x a week.

I also personally take supplements all ok'd by my PCP

Vitamin D varies from 2000 to 5000 iu a day based on lab results

CoQ10 400mg a day

CuraMed Curcumin 375mg my
Ortho had me start with 1 in a.m and 1 in p.m for the first week, then take 1 a day.

Krill Oil – Not Fish oil
I buy Antarctic Krill Oil Platinum by 1MD because it's top quality.

Krill and fish oil similarly contain EPA and DHA, but they differ in the way that the omegas are bonded. The omegas in krill oil are mostly bonded to phospholipids while in fish oil they are bonded to triglycerides. The fat cells in humans are also in phospholipid form. A study done on the metabolic effects of krill oil concluded that the omega-3s from krill oil may be more readily and effectively absorbed after ingestion and distribution into the bloodstream.

I have gone from eating food that really wasn't that healthy to eating mostly plants real food. To help my body by giving it the best nutrients possible.
I have to say my pain has decreased.
I will have a cheat day now and then.
But when you get used to eating good healthy food anything other than that just doesn't taste as good.

So I will be posting various recipes on my main blog and sometimes here as well , ones that I tried and loved as well as some information about myself and about Osteonecrosis aka Avascular Necrosis and a few other things

I Research a lot of things
Osteoarthritis
Osteonecrosis
Spondylolisthesis
Factor V Leiden Heterogeneous
Hypothyroidism
Rosecea
Clinical Trials
Stem Cell and Prolotherapy

I love history and being outdoors

One thing I know I will do again someday is hike . Since diagnosed with Avn I haven't lived or hiked as much as I used to do to limitations because of bone problems.

I love learning and applying new things into my own life.

I truly believe we can help our pain and diminish symptoms and heal our own body most of the time if not all the time.

We just need the right tools and the know how.

My Links

Facebook Main Profile https://m.facebook.com/public/Deborah-Andio

Main Blog ChronicallyGratefulDebla.com

YouTube Awareness Videos https://m.youtube.com/user/debbieandio

New Blog on Google 3/8/2017 http://chronicallygratefuldebla.blogspot.com/2017/03/hello-i-am-debbie-andio-i-am-blogger.html

Link to Mini Fact Videos http://cortanavideo.trade/user/UC1RtmEwtWKC8w9EgE2IwOFg

Twitter https://mobile.twitter.com/debbiea001

Instagram https://www.instagram.com/debbiea_1962

FB Information and Awareness Pages Bone info and Joint of the Day https://m.facebook.com/AvascularNecrosisRareDiseaseDayFeb29/

ON/AVN https://m.facebook.com/Osteonecrosis-Avascular-Necrosis-Support-913679995417381/

ON/AVN https://m.facebook.com/ONAvascular-Necrosis-Knowledge-752404224891578/

Recipes https://m.facebook.com/YummyGoodness/

Facebook Link https://m.facebook.com/ChronicallyGrateful.Me/

NewMorning Talk Anyone who wants to do a f b live via a guest message me. Various topics health, pain, food https://m.facebook.com/MorningTalk.Healh/

Posted in Arthritis, Avascular Necrosis, Awareness, Blessed, Bone Health, Cardiovascular, Chronic Pain, Diagnosed, DNA, Eat Healthy, Factor V Leiden, Happiness, Homemade Syrups,Tinctures,Rubs, Inflammation, Mindfulness, OA, Osteonecrosis, Positivity, Stem Cell, StopTheClot, Support Group, Hope, Uncategorized, WegoHealth

~Health  Awards ~ Advocate Nominee 

I was notified about a month ago I was nominated for a few awards in a few categories for awareness I vowed when diagnosed with avn /on I would never want anyone to feel as alone and scared as I did in 2014. 

https://awards.wegohealth.com/nominees/12801

My Ortho who diagnosed me really never took the time to even explain to me what I had, or come up with any positive plan of action. He did say when I asked when the plan was …..we will wait until your knee collapses and the replace it !!

Are you frickin kidding me!! That was his plan of action.

Well thank god my knee still is hanging in there and no sign of collapse and when it does happen if that happens he won't be doing surgery.

After the initial shock and grief I went through for what my life was and what may now be I vowed to be a world changer The Ortho also failed to tell me how rare this is and when I did my own research and found out how rare it was rare, it  left me feeling even more alone.

Sure my husband was and family were supportive but they had no clue what I had 

I also have a few other medical issues 

Osteoarthritis Spondylolisthesis Hypothyroidism , Factor V, Rbbb.

And I advocate for all and then some. 
I don't want anyone who was diagnosed with anything to ever feel alone. 

But when you have an orphan disease it just makes it harder some days to deal with. 

It's not like heart disease or cancer where there is constant education, awareness and research being done. 

I hope to change that. Osteonecrosis aka Avascular Necrosis had no cause ribbon so I made them, designed them. Now we have one

There was little information I changed that, I wrote a booklet for patients who have or are just diagnosed with Avascular Necrosis/Osteonecrosis 

I stay up to date on new treatments, trials

I also compiled an ongoing list of doctors not just locally but world wide who are knowledgeable in Avascular Necrosis/Osteonecrosis.

I am so honored to have been nominated 

I was nominated for 8 or 9 different categories and I am asking for your support(vote).

I would greatly appreciate it. 

Also there are so many other wonderful nominees maybe you could also give them a vote as well
Here is how it works 

Click below link

You will come to my wegohealth leader profile 

When you click endorse you will have the option to share it you don't have to but thanks if you do. 

It will then take you back to endorse screen so you can vote for the next award I am nominated for. 
As an advocate for Osteonecrosis and a few others things, like Osteoarthritis,Spondylolisthesis,Hypothyroidism, Heart Disease I take pride in all the research I do to raise awareness. 


I am a voice and resource in a rare community for those of us who are suffering with Avascular Necrosis/Osteonecrosis the orphan disease most people have never heard of unless your diagnosed.
I have the honor this year again of being nominated for many of the categories 16 health awards this year as a member of wegohealth.

Thank You In Advance. 

https://awards.wegohealth.com/nominees/12801

Posted in Avascular Necrosis, Awareness, Chronic Pain, Inflammation, Life, Osteonecrosis, Support Group, Hope, Uncategorized

The Importance Of A Support Group


Living with chronic illness is incredibly challenging at times (understatement of the year!) You wake up with no pain then sudden pain,or you wake up in pain deal with all day pain. You can’t do this , you can’t do that. Because your body just won’t allow it. You have to be strong even when you don’t want to be. 
Then there are days you just want to say “I give up” and lay in bed because it’s the only place your bones and joints don’t hurt as much. That’s a slippery slope, that’s when depression wants to creep in and destroy you even further instead of physically now it’s effecting you mentally.

The answer is Support! You need to get in a good support group.

 Even if your immobile there are many groups on Facebook all you have to do search it. 


If you have Avascular Necrosis/Osteonecrosis your welcome to join us. 

https://m.facebook.com/groups/DeadBoneDiseaseAVN/

But having a good group of people in our lives on whom we can lean on, share with, commiserate with,can greatly decrease that challenge of depression setting in. 

So that’s why today over on my blog

http://www.ChronicallyGratefulDebla.com 

 I’m writing about the importance of a good support system.

We really need them when it seems like the world is crashing down. But we also need them in the days we’re doing ok. 
Have you ever experienced the pain of rejection or just felt less of a person from the people you thought were there for you? 

Friends & Family either refuse to understand or just don’t want to be bothered by learning about the disease \ disorder.

Or your own brain starts thinking I’m useless, I can’t do anything like I used to. You need a support system! 

Many people who don’t have a chronic life, struggle to understand life with a chronic condition. I wish they did but honestly the only people that understand are those that also have chronic condition.

Some people including people you know, at some point may say really hurtful things out of pure ignorance like gee you don’t look sick, or wow your house is a bit messy today ,or what did you do today , or geez I wish I didn’t have to go to work anymore.
Or they blame you for your illness/ condition.
Well if ate better,exercised more maybe you wouldn’t be in this spot , or smoked less etc….

Just ignore them. Badgering you isn’t going to change your illness. You even wonder why did I tell them about your illness.
Yes, unfortunately some people should not be trusted with your feelings or the the truth about your pain.

 They just won’t understand. And it’s not up to you to keep explaining yourself.

But there are good listeners that offer you a good and safe support system,you just need to know how to identify them!

I really want you to get in a good support system , make it a priority, even if things aren’t too bad right now or you just been diagnosed and have no one to ask questions to. 
Get in a support group. 

You will be so glad you did. We can help you with any questions you may have , we’re here to listen, offer life experience, suggestions. We don’t offer medical advice as that’s between you and your doctor.

You can’t just expect everyone to be there for you in your struggle with illness. Let’s face it not everyone can handle it, and quite frankly not everyone will want to . And not everyone is worthy. 

How Will A Safe Person Make You Feel?

Do they make you feel comfortable being yourself? 
You should feel comfortable with who you are, flaws and all. No one should make you feel judged or less of the amazing person you are. If they do move on….

Do they make you feel energized? Ready to fight a good fight? Supportive people should nit suck the life out of you, leaving you feeling worn out.

They should make you feel more energized by the time they leave or hang up the phone. If you find a person exhausting, they should not be in your support system. 

You should find support from a variety of relationships. No one person can give us everything we need not even your spouse!.

Your Spouse

If you aren’t married or in a serious relationship, this obviously doesn’t apply. But if you are, your spouse can be the most immediate source of support in your life. 

Most of us live with spouses that don’t have an illnesses themselves, so they have a lot of learning to do in order to understand us. 

Your responsibility is to explain your condition and your struggles and what you would like from your spouse. Spell it out! 

They are not mind readers so don’t expect them to simply know or understand.However, don’t assume your spouse is able or willing to support you in this way. Unfortunately, some are not, but luckily there are other relationships that can be supportive.

Your Family

If you have people in your family, whether it’s a spouse, parents or cousins, they should be a part of your support system. Just be sure your relationships are healthy and helpful. 

Again, communication is key when it comes to family because they’ve known you so long. They may be relating to you based on assumptions, so be clear about your needs.

Your Friends

Ahh yes friends can be some of the best relationships to be part of your support system. You get to choose these people, and choose when to see them, when to talk to them. 
Just realize not all your friends will be a support for you, but one or two that will is great. 

Friends should be encouraging and understanding, and this should be mutual. 

Your Support Groups

The best people to understand what you’re going through are those who have experienced it themselves. 
That’s why support groups can be so helpful. Whether it’s through Facebook or a community center, others who are struggling as you do can help you through what they have already experienced 
They listen well, empathise, and offer advice when you want it. 

Chronic illness can often be very isolating, but support groups provide a like minded community. One word of caution for any online groups: when people aren’t interacting face-to-face they feel more comfortable saying whatever they want.

Just because people are in the group because of their experience with illness doesn’t mean they will be safe people. 
Always exercise caution when sharing in online forums. Make sure you’re aware of the risk of receiving unkind words and unwarranted advice.Some individuals can be just rude. 
I don’t tolerate mean people and people who bully others are just inconsiderate these people will be removed. 
I also have seen other groups where the leaders were the bullies. Get out if you join a group where the leaders are bossy,mean and or downgrading. No one needs that. We have enough to deal with. 

Your Pets

Who doesn’t love a dog or cat, bird, lizard whatever …that snuggles, they can be life savers dogs they get you out of the house for walks, and even help you meet people in your neighborhood. Time at home is much less lonely than it would have been before a pet enter your life. 
Pets can be the best part of a support system. For some therapy pets can be a crucial part of the ability to function. For others it can be therapeutic to have something to nurture. And they love us no matter how we look or feel. 
I personally don’t have a pet as they are not allowed in my building, but when I visit my family their 2 dogs are so lovable you can’t get bored when they are around. 
If you don’t have a pet and are considering one make sure you are prepared in how to care for it. Be sure you are physically able to do so. Also, I hope you consider rescuing one. 
I hope you find a good support system. If you have Avascular Necrosis/Osteonecrosis your welcome to join my fb group. 
https://m.facebook.com/groups/DeadBoneDiseaseAVN/

Have a great day. 

Posted in Avascular Necrosis, Eat Healthy, Factor V Leiden, Inflammation, Life, OA, Osteonecrosis, Uncategorized

#RareDiseaseAwareness

Avascular Necrosis/Osteonecrosis falls under rare disease

Ohio is having Rare Disease Awareness Week
Here is Information

Four Ways to Participate Remotely in Rare Disease Week on Capitol Hill

#AvascularNecrosis

#Osteonecrosis

#WegoHealth

#RareDiseaseAwareness
My Links

Debbie’s Links
https://www.facebook.com/debbie.briglovichandio

https://www.facebook.com/groups/DeadBoneDiseaseAVN/

https://m.facebook.com/ChronicallyGrateful.Me/

https://m.facebook.com/AvascularNecrosisRareDiseaseDayFeb29/

https://m.facebook.com/YummyGoodness/

https://m.facebook.com/ONAvascular-Necrosis-Knowledge-752404224891578/

https://m.facebook.com/Osteonecrosis-Avascular-Necrosis-Support-913679995417381/

Support Group For Avascular Necrosis/Osteonecrosis

https://www.facebook.com/groups/DeadBoneDiseaseAVN/

Twitter. debbiea001@twitter.com

Instagram. debbiea_1962@instamgram.com

YouTube. https://m.youtube.com/user/debbieandio

Posted in Avascular Necrosis, Eat Healthy, Osteonecrosis, RareDisease, Uncategorized

Osteonecrosis – The Pain and Learning What It Is

Welcome to ChronicallyGratefulDebla

img_4042

 

Hi and Thank you for dropping by :  I am Deborah L. Andio and I am new at this blogging thing so bear with me. I am starting this blog because I want to raise awareness  and share my experience since being diagnosed with several conditions

Osteoarthritis

Osteonecrosis in Knee from Trauma

Hashimoto Thyroiditis Hypothyroidism

Factor V Leiden

Spondylolethesis L 5 S 1
Im focusing today on Osteonecrosis

My Diagnosis

I  was diagnosed in 2014 after my was injured from exercising and I felt like I was stuck in the knee by lightening.

It dropped me almost to the floor so of course I called my doctor went in and he thought i may have torn my meniscus.  I tried pt for a few weeks and a couple cortisone injections over 3 months but it kept getting worse. The pain was nothing else I had ever imagined or experienced.

I insisted he stop giving me injections as its not helping  and I suggested he look to see whats going on in knee as its worse after several weeks .

He said we would get X-ray well that just shown up that my Osteoarthritis  hasn’t progressed thankfully. OK so that’s not worse yet my pain is so intense I can hardly concentrate  at times. It has me not able to work , at first I went  down to Part Time but now I can barely walk  feet with out feeling like a knife is being jammed in my knee….

I am now scared and go back to doctor and I am pissed off, I have to stick to my guns here and not allow him to dismiss me or my pain.

I broke down and asked him for something for pain and he looked at me as if I was some junky. I told him look I have been your patient for over  years I wouldn’t ask if I was not hurting a lot. I also told him if you would get off his ass and try to help me figure out why I’m still hurting maybe we can treat this correctly.

He apologized and said we need an MRI and he gave me a script for  pain pills.

A week later I get MRI and a few days later I go back to dr’s to hear results and he said I think we need to get you in to a orthopedic asap.

Ok well then lets go…

So days later was the soonest i can see this ortho

He immediately said I review you MRI and your knee looks like butter. Butter I ask thinking wtf is that mean….

He then told me I had osteonecrosis in my rt knee and eventually I will need a knee replacement, he also confirmed the medial meniscus tear of the femoral condyle.

I asked can we fix the meniscus he said no it would cause more problems. So I asked whats the plan of action he said when your knee collapses we will replace it until then lets give you a kenalog …..it will help pain . So I agreed.

So i got the shot and asked him so what is osteonecrosis he said it when the bone dies.

All I heard was death…..I got very scared I asked what was in that shot as my knee is on fire he said cortisone…….

I’m like no way those make my pain worse

He then suggest i return in a few weeks and shifted my ass out the door.

No personality no explanation of what was happening or what i could do to my knee nothing………another dismissive docttor..

I  get in my car and i just cried , what is happening to me. Will this pain ever go away ?  Why have i neverheard of this osteonecrosis before.

And that’s where I chose to become a leader and pioneer for this cause…

Its a rare condition but you can get it many ways  yet it falls under rare disease

For the next few months day in and day out I read, spoke to many doctors some knowledgeable and some I wouldn’t want fixing a stuffed animal let alone my knee.

I found ut that more doctors know very little about this than are knowledgeable…

Thats how my awareness and advocacy started for Osteonecrosis aka Avascular Necrosis.

My plans were to gather all my info start a support group not a gossip page but an actual page where you can learn, I wanted to list good qualified doctors and eventually write a booklet and book and I am proud to say I have done all but the book  but I am working on that.

I am proud of my booklet that/s finished i mail it free to members of my group to help them see they are not alone and they can share it with family friends and doctors and they also can gain real understanding of what we go through. Because unless you have , you have no idea how painful it is.

Song Of The Day   Rob Thomas Published on Oct 1, 2009 The official video of “Her Diamonds” from my album ‘cradlesong’.

 

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So help me raise awareness if you like my post come back often, subscribe and have others subscribe as well.

I will discuss many issues and health education on various subjects

Like Eating to fight pain

Treatments

Recipes

Diets

General stuff

I so appreciate you taking the time from your day to read this and hopefully join me regularly …

Butterfly Ribbon (3)_resized

Now if you dont know what osteonecrosis is

Read here  I wrote this awareness Booklet  this is what I share and I want you to learn about it also

AVN Awareness Booklet

Osteo meaning bone and necrosis means death .
Most commonly this occurs in the knee, hip, shoulder, ankle, elbow,hand ,wrist but also can occur really anywhere else in your body that you have a bone   or joint . Including the jaw and spin

I started a fb support group because I know so many are suffering worse than I am and I am determined to make a difference.
If you have Osteonecrosis aka Avascular Necrosis or know someone please share the link to the support group and this blog
The AVN /ON Facebook group above is a private group, which I administrate and I also have some fabulous women helping me run it as well.
 This is a wonderful forum to ask questions, give our experiences and ideas but not medical advice  and help connect with others from all over the world.
The formal name of my f b support group is
We like to talk and educate share stories and jokes funny pictures and experiences we are not a gossip group and we have rules.
We also require anyone wanting to join to answer  three questions if they fail to answer them they are denied.
My other links
Thank You and God Bless you and I hope you have a pain-free day
Much Love

Debbie

 

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Song In Blog –  You’re Gonna Be Ok (Lyric Video) – Brian & Jenn Johnson | After All These Years. I own no rights or the song I just find it supportive and Inspirational