Ebooklet -Avascular Necrosis-2016

To Our Dear Readers

 

Often being diagnosed with a rare disease is not easy , it can often  leave you feeling alienated  exhausted and at times discouraged. We often end up having more questions than answers.

 

There also is very little to no public attention when you have a rare disease/disorder such as fun runs, fundraisers ,even research money  is limited when it comes to having a rare disease.

 

Far too often doctors may not be as educated  or skilled on a certain a rare medical condition which often causes patients to be misdiagnosed.

 

Those suffering often go months to years without a proper diagnosis.

 

Then there is the treatment options which appear just as limited.

 

There are about 7,000 different types of rare diseases with new discoveries every day. In the United States alone there have been approximately 25-30 million people given the diagnosis of an uncommon medical condition.

 

But we cannot give up. We must keep going, we must live mindfully and even in pain we must try to live our best life.

 

Avascular Necrosis/Osteonecrosis is one of those rare diseases and today I am happy to introduce you to the creator of it’s just a bad day not a bad life.

 

 

But before I do, I want to tell you a bit about her.

 

She  is the VP of WEGO Health patient network as well as a Patient Empowerer, Certified Holistic Health Coach, Yoga Instructor, Speaker and Patient Leader Blogger who is thriving with psoriatic arthritis and avascular necrosis of the femur and has battled melanoma, complex regional pain syndrome, depression, and anxiety.

 

 

Please welcome Julie Croner

 

She is using her personal mantra ‘It’s just a bad day, not a bad life’, she started itsjustabadday.com, which has been named one of the top 5 Psoriatic Arthritis blogs by EveryDay Health, top 7 Psoriasis blogs by HealthLine, top 40 Arthritis blogs by Feedspot and has been highlighted by The Mighty, WedMD, The National Psoriasis Foundation, and many other online sources.

 

 

Staying busy is a way of life for Julie. Some of her accomplishments and activities include:

 

 

Vice President of the Patient Leader Network for WEGO Health, 2016 Standford MedX Ignite Talk and Oral Presenter, 2014 Stanford Medicine X ePatient Scholar, Psocial Ambassador for the National Psoriasis Foundation, member of the Advocacy and Mission Committee for Arthritis Foundation, WEGO Health

 

 

Best In Show: Twitter in the 2015 Health Activist Awards, Psoriasis Social Media Ambassador and Health Guide for HealthCentral, blogger for PsoStrong.com, contributor to Everyday Health and Yoga Instructor.

 

 

 

Julie is an army wife and new mama. When she’s not working, Julie can be found jamming out to Celine Dion, taking a yoga class, traveling, cooking, geeking out over health-related things or enjoying life in Pittsburgh, PA.

 

You can find Julie at

 

Blog: Itsjustabadday.com

 

Twitter: twitter.com/justagoodlife

 

Facebook: Facebook.com/itsjustabaddaynotlife Instagram: Instagram.com/itsjustabaddaynotlife LinkedIn: http://www.linkedin.com/in/juliecerrone

 

Blog Email: justabaddaynotlife@gmail.com

 

 

Please welcome Julie Cerrone

 

 

 

So Julie : How long have you had Avascular Necrosis -Osteonecrosis?Where do you have avn-on?

 

 

I was diagnosed with AVN in my left femur bone in December of 2012.

 

 

 

Is your Avascular necrosis in more than one joint or bone?

 

 

It was in just one bone, but I had 2 places within the bone. A smaller section and then a larger section that was crumbling due to me putting weight on my leg.

 

 

 

How did you feel when you were diagnosed?

 

 

Up to the day I was diagnosed I had been continuously going to my doctor complaining I was in pain. I had 2 back to back surgeries (my 4th and 5th knee surgeries overall), had been in therapy, was on crutches and was in so much pain I had been unable to work for the previous 6 months. He kept saying that there wasn’t anything wrong – but I pushed for every test under the sun.

 

 

I’ll always remember December 17th, 2012 and the look on my doctor’s face when he came into my exam room. He said you have AVN. I know what it is, I’ve seen it before, but I don’t know really how to best treat it and I don’t know where to send you.

 

 

 

I’m a pretty positive person – but hearing that from someone I had trusted for years as my orthopedic surgeon really hit me. I literally went home, laid on the couch and cried for the rest of the night. I had NO idea bone could die. And for my doctor to tell me he had no idea what to do . . . . that was hard.

 

 

Did they say what may have been the cause of your avn-on?

 

 

So obviously no one can pinpoint it exactly, but this is what I have deduced from reflecting on it for the past 7 years.

 

 

In February of 2012, I started having knee problems. I had had knee problems my whole life, so it was kinda like “here we go again” thing in the back of my mind.

 

As months went on, it wasn’t getting any better – in fact it was getting worse. I went to my orthopedic and in June I had surgery. I ended up going back into the OR in September because I was still in so much pain.

 

 

Looking back, it’s very clear to me now that there wasn’t anything surgery could have fixed- I was having a psoriatic arthritis flare. In middle school a doctor had suggested that I had PsA but I never took it seriously because 1) I had no idea what it was 2) I was young and thought there’s no way I had arthritis.

 

 

December 26th, 2012 (right after I was dx with AVN) I ended up in the hospital because I was in so much pain I couldn’t stop shaking. That’s when I was officially dx with psoriatic arthritis.

 

 

A year after getting diagnosed with AVN I found out that I have prothrombin thrombophilia which is a blood clotting mutation. Basically, I think that the mutation predisposed me to be susceptible to AVN, and then coupled with the back to back unneeded surgeries and a psoriatic arthritis flare = the perfect storm.

 

 

Did you ever hear of avn-on before your diagnosis?

 

 

Nope. I had never heard of it. And honestly, I didn’t even know your bone could die!

 

What are some of the treatment options have you tried? Were any helpful?

 

 

So I was on crutches for 3.5 years. The longest ‘treatment’ I did was to stay off of it and give my knee a chance to recover. I also took pain killers around the clock to deal with the pain. I then subsequently did 2 things that ultimately got my pain under control and helped me get my life back together.

 

 

1) I took high doses of blood thinner injections to get my blood flowing to the necrosed areas of my bone. This actually worked wonders and it revived the smaller AVN part of my bone. Today on MRIs you can’t even see it!

 

 

2) I had a Regenexx stem cell procedure done. This was AMAZING. I blogged the entire journey: http://www.itsjustabadday.com/regenexx-avn-procedure/

 

 

 

I’m 4.5 years out from the procedure and feel amazing. I haven’t had ANY pain, ANY issues or ANY concerns. The last MRI I had was at a year out and my bone had regenerated 60%. The way it had regenerated it encapsulated the dead part that was crumbling and strengthened the bone. I’m able to live life, function, walk, run – do anything I want without any worry of AVN.

 

 

Can you tell me do you work or are you unable to work?

 

 

I was on disability for almost 4 years. I’m back to work full-time now. I’m even a yoga instructor!

 

 

How many doctors have or did you see before getting diagnosed?

 

 

 

I was only going to my 1 orthopedic doctor and it took me 6 months to get a proper diagnosis. But in order to TREAT my AVN, I lost track at 29 providers.

 

 

You know who ended up helping me? PATIENTS. Patients online were my saving grace and the reason I found out about the blood thinner injections and the stem cell procedure.

 

 

 

What would you tell someone who has been newly diagnosed with avn-on?

 

 

 

Stop what you’re doing, go to the Regenexx website and lookup an office near you. They’re the ones who have been doing this the longest, have the most research and help AVN patients all the time. I’m living testimony that this can work. But don’t just take my word for it – I’ve connected with hundreds of other patients who have received benefits fro the Regenexx stem cell procedure.

 

 

But on that note, be weary of stem cell procedures. I personally endorse the Regenexx procedure because of their process and their standard of quality. Others do not do it the same way they do it (even Mayo Clinic or Cleveland Clinic). Also- do not get stem cell injections that are not your own. If you’re getting anything other than your own mesenchymal stem cells you’re wasting your money.

 

 

 

And for those who are worried about the financial aspect of the stem cell procedure, I say this to you. Yes, it’s an investment. But without your health- what do you have? I was on disability, didn’t have a ton of money in the bank and still found a way to get it done. I’m not any more entitled than anyone else out there. If there’s a will, there’s a way.

 

 

Most people look at it from the upfront cost – but you don’t consider this…

 

 

To get a joint replacement, on average, in most markets it costs around $40k. (sure, you don’t pay all of that, but you’re paying your insurance costs). Then you’ll have follow up doctor visit, etc.

 

Then you have to go to therapy – for MONTHS.

 

With a joint replacement, you’ll be off work, you’ll be unable to really function properly for a good amount of time.

 

And to be blunt, a lot of people have problems with joint replacements and end up spending more time and money on fixes and follow-ups.

 

Oh- and also, depending on your age – you’ll need to get another one because they don’t last very long. Especially if you live an active life.

 

 

People always think that having insurance cover a core decompression or a joint replacement is the better way to go. I BEG you to think of it not in those terms. Think of YOUR LIFE. The quality of life you want to have.

 

 

By having a stem cell procedure, I not only still have my own joint, but it’s healthy and I don’t have to worry about having to go through it all again in the future.

 

 

 

 Name something positive that has been a result of getting avn-on?

 

 

I’ve had amazing experiences since being diagnosed with AVN. I had the opportunity to share my story of how patients were the ones who got me back to walking and regrew my femur bone at Stanford MedX: http://www.itsjustabadday.com/2017/03/09/medx-ignite-talk-replay/ (If you scroll to the bottom of the post you can see my Ignite talk)

 

 

And I was invited by the FDA to share my story on stem cells at a hearing: http://www.itsjustabadday.com/2016/09/28/fda-stem-cell-hearing/ (If you scroll down to the bottom of this post you can see my testimony)

 

 

But honestly, the most positive thing that has resulted from my diagnosis is getting to connect with patients all over the world, on a weekly basis, and helping them know they’re not alone. I try to pass on my own advice, my own journey and my own thoughts to help them feel a little less alone and to have a bit more knowledge than I did when I was in their shoes. It really helps me to know that I didn’t go through this for nothing. I went through this to help others and to really find my passion in life.

 

 

 

Thank you so much Julie not only for this interview but for being a great inspiration to so many and educating others while raising awareness on this rare disease. May you have continued success in your advocacy and all that you do and wishing you continued wellness.

 

 

To follow Julie on social media her links are listed below.

 

Blog: Itsjustabadday.com

Twitter: twitter.com/justagoodlife

Facebook: Facebook.com/itsjustabaddaynotlife Instagram: Instagram.com/itsjustabaddaynotlife LinkedIn: http://www.linkedin.com/in/juliecerrone

Blog Email: justabaddaynotlife@gmail.com

 

 

Please help raise awareness by sharing this blog post in the hopes it reaches someone who may benefit from the information provided.

 

 

 

*If you are interested in sharing your Avascular Necrosis -Osteonecrosis story or Group  in an interview please email me at.

 

If you know of someone or if you are someone who suffers from AVN-ON and you need a great support group

 

Click on the link to find this Facebook group – Avascular Necrosis/Osteonecrosis Support, Int’l.

 https://www.facebook.com/groups/DeadBoneDiseaseAVN/?ref=share

Also please like and subscribe to my blog and if you want to follow me you can find me at the links below.

 

Thank you again Julie and

 Here is wishing everyone a pain free day.

 

 

To learn more about me check out

Deborah Andio links below please like follow and share.

Thank you God Bless You.

 

Click on the link to visit and subscribe to my website :

www. ChronicallyGratefulDebla.com

 

Instagram Personal :

http://www.instagram.com/deborah_andio

 

Instagram Awareness Chronically Grateful Me

http://www.instagram.com/chronicallygratefulme

 

Twitter:

 

 

More links are in my blog

 

Deborah Andio

Patient Leader Blogger Empowerer

Fear Before Surgery©

A major reason many  put  off a joint replacement surgery can be summed up in one word: fear.

Let’s be real here any joint replacement surgery is not easy nor minor.

The feeling of anxiety leading up to and going to surgery is normal, just don’t get consumed by the fear. It is known as preoperative or preoperational anxiety , is incredibly common. A lot of patients who know they will have surgery will start to experience it. Anxiety before surgery is essentially described as unpleasant stress, uneasiness, or tension that results from the fears and doubts of patients.

Speaking for myself , I get a bit anxious before any surgical procedure. I think it would be abnormal to not be a bit anxious. But I have taught myself ways to breathe, meditate and remain calm so the fear never consumes me because that type of fear seems unhealthy.

I personally haven’t needed a joint replacement as my osteonecrosis has been stage 1-2 for 6 years now that’s to prp injections and be changing the way I eat and take care of myself. But I have had pre surgical nerves before a few other surgeries.

I do believe in a positive attitude but I also believe in being educated on what is going to be happening to me.

What Causes Fear of Surgery?

There are numerous reasons why someone may be scared of surgery. The most common reasons are:

Fear of the unknown

Worrying about the surgery not working

Pain

Fear of the anesthetic

Having to recover around strangers

Losing control

Not being able to recover

Death

 

It is perfectly normal to experience  pre-surgery anxiety. The intensity of this fear will depend on a range of factors, including:

The experiences people have had in hospitals in the past

Their personal psychology

Age

 

Three Levels of Anxiety before Surgery

According to specialists, everyone experiences a degree of anxiety before going into spine surgery. However, they agree that there are three separate levels of that anxiety:

 

Low level, which happens in those people who are inclined to ignore any signs of impending danger. This can be anyone from the eternal optimist to someone with a schizoid personality disorder.

Moderate anxiety, which is seen in people who tend to respond directly to any information they are given. This means that the information provided about the potential complications of surgery is likely to make them scared of surgery, but this can rapidly be resolved by providing them with information on the rarity of these complications occurring.

High anxiety, found in people who have a neurotic predisposition or those who have an almost irrational fear of surgery and bodily harm.

 

The Impact of Pre Surgery Anxiety

Being afraid of going into surgery has an impact on people in a variety of different ways. These include:

 

Psychological effects, including cognitive and behavioral changes such as aggression, nervousness, apprehension, and tension. Sometimes, this makes the patients finding it impossible to follow instructions and others becoming so aggressive that they may pose a danger to others.

Physical effects, which include things such as heightened senses, nervous diarrhea before surgery, a fever, hypertension, and tachycardia. Peripheral vasoconstriction is also common

 

Tips on How to Stay Calm Before Surgery

Thankfully, there are numerous things that you can do in order to remain calm, or experience a healthy level of anxiety and no more, before a surgery.

 

Trust yourself.

 

When you feel anxious, you become fearful of others. Psychologically speaking, this actually translates into paranoia against yourself. You need to trust the fact that you know your own body and that you can listen to it and understand what it needs.

 

    Develop trust in your medical team.

 

If you want to reduce your overall fear and anxiety, it is hugely important that you trust the practitioners involved in your care. Trust and anxiety are each other’s opposites. If you feel that you can trust the nurses and doctors who are trying to help you, then you will immediately start to feel in control again

 

 

    Educate yourself.

 

Once you know what your medical condition is, you should research it properly. This can help you to overcome the fear of the surgery, the hospital, and the condition itself. At the same time, be aware of the fact that doing research about your medical condition can also increase anxiety.

 

 

Make use of relaxation techniques.

 

There are lots of good relaxation techniques you can use. Muscle relaxations, breathing exercises, meditations, are all excellent techniques.

 

 

    Join a support group.

 

There are lots of really good support groups out there waiting to welcome you.

Understand is that it is ok to be afraid, we are human, just don’t allow the fear or anxiety you may be feeling control you.

 

 

 

Make sure you have pre planned for your surgery to make your home life easier when you return .If you had joint replacements, get rifd of all throw rugs so you don’t trip on them. Move objects from your path so you can use a walker with ease if necessary. Try some meditation, there are many things you can try to help calm you.

 

If you need support please join us if you have osteonecrosis aka avn

We at Avascular Necrosis / Osteonecrosis Support Int’l. will help you get through it, we are more of a family .  And we know what your goin through.

 

Wishing you a pain free day

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When Your An Advocate You Don’t Bully Other Advocates That Are Also Patients©

There are many great advocacy groups out there and then their are the few who want to be great but will sadly do more harm than good.

I was recently invited to join one because I have been an active advocate for Osteonecrosis for almost 6 years now.

And over those 6 years spoke to thousands of doctors – a few pro baseball players that developed Avn-on etc… so I do have a lot of knowledge on the subject and great resources.

It was against my better judgement to join but I thought ok I will give them a few tools and share my info with them to help them, then eventually step out of their group because I am very busy with my own advocacy work.

Well I joined yesterday after I was invited and when I was reading the posts on this new group page that was just 1-2 days old I was shocked to see all the copyright infringements.

My stuff pictures from my booklet and web site that I took the time to make and write about , all the research I did.

So I made a comment on how important for a group it is to create your own logos and ask before just using copyright work.

As some was my work and some were others that I know would not be happy with it being used without asking.

If they asked I may have said ok or I may not have.

Most of my things have the copy write and hidden watermarks on it.

I then was going to dinner and advised this group I would post a lot of info later that night.

When I went to post some really good info I found in my hundreds of files , I was removed from this public group and then am continually publicly bullied !

It’s a public group and I am the topic of their discussion for 2 days now .. Maybe they will get tired and eventually start advocating. Hopefully they aren’t one of these groups that talks about money all the time. Most advocates don’t do that.

I have to laugh because clearly these people have no idea that advocacy is about being leaders , patients having patience and instead it turned into a let’s pick on the chic we invited now that she is no longer in group we can talk about her and call her names .

I am shocked at the childish behavior by some people. Well most of leaders or so called leaders of this group.

Anyone who is in their groups better be prepared for drama town.

Thankfully I have a thick skin.

I am far better off without this group in my life. In fact they asked me to join or I never would have know they existed.

I’m a happy advocate, I work hard everyday at my advocacy and I get stuff done.

I don’t sit around waiting for others to do the work for me.

I create my logos and write my blogs I interview doctors- patients- leaders in community, elected officials etc…..

Everything I do and everything you see like my booklet – and the doctor directory I made for USA and and the International one I am and have been working on.

It is there because of all my hour’s of calls, notes and dedication.

I am proud to be the advocate I am and those who don’t like it can move on….

I am far better off with out you.

However many patients who may join that group may fall prey to their bullying and I feel sorry for them.

Because they may be newly diagnosed and just stumble on this group.

If you need a good advocacy group for your Avn drama free I have one.

We love our members and we have fun and educate : if your a bully you are not welcome and if you are in and bully someone you get a warning to be nice because we are all suffering with the same condition. If it happens again they are removed.

Not only does bullying and aggressive behavior create a difficult and hostile environment, it isolates people from getting the support they need.

Be constructive not destructive

If you bullies spent less time copying my stuff and talking about me and made your own your have a lot accomplished by now.

I am hoping they stop messaging me calling me awful names , swearing at me, men and women alike and please stop asking me for all my copyright stuff. I know what I have and I know all my copyrights and publications are legit.

There is a thing as research

Look it up!!!

It’s there.

All my stuff is copyright protected or permission maybe given but rarely and resources noted.

Why do slackers and bullies feel the need to just use other people’s art and print published copy for their benefit?

Being an advocate requires work and kindness

Also to patients you should never pay for being part of an advocacy group. You should never have to pay for anything and don’t be guilted into sob stories asking for money or items.

If you have Avn and need a group a good group that I promise will respect you and never ask you for anything to join check out

Unfortunately I will be removing some from my group who are now in a moderator or leadership position in that specific group. I hate to remove people from my support group.

But I feel so strongly about being kind to others that if you choose to be a leader of a group based on bullying I don’t think my group is a good fit for you.

If you feel that the group you chose to be a part of is not as you expected your welcome to join or return to ours. I’m all for being involved in one or several support groups. But not groups formed and run on bullying and always asking for money.

If you need a support group that supports you link is below

AvascularNecrosis/OsteonecrosisSupport Int’l

You deserve to be treated kindly respectfully and not bullied when you are already suffering.

Real advocates are busy advocating and raising awareness not harassing advocates or members.

#YouMatter

Thanks

❤️Deb Andio

©Debla2019

©Debla2019

https://www.facebook.com/groups/DeadBoneDiseaseAVN/?ref=share