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.

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

Posted in Arthritis, AtomicBlonde, Avascular Necrosis, Awareness, Bone Health, Chronic Pain, Diagnosed, Disclaimer, Factor V Leiden, Flush not Blush, Happiness, Inflammation, Life, Meditation, Mindfulness, OA, Osteonecrosis, Positivity, Rosacea, Stem Cell, Support Group, Hope, Uncategorized, WegoHealth

From Optometric Tech /Optician To Professional Patient & Patient Leader

If you have a chronic condition or illness you may already know and understand what it feels like to be a professional patient.

Between the physical pain and symptoms and emotional symptoms, the constant doctor appointments in search of that one person knowledgeable enough to help vs refer you to yet someone else and the numerous tests and procedures (not to mention having to keeping track of all of it & all the bills that go with it ) having a chronic condition can become a full-time job and to be honest it’s more exhausting than a good day’s work.

Speaking of work.
You may find yourself needing to cut back on hours at work , go to part time or stop working altogether.

Although this may be a necessity for you and your health, other people don’t always understand why you’re not working.
They may have these crazy misconceptions that you’re now somehow slower , lazy on vacation or lucky not to have to go to work .

Those of us with chronic conditions know, this is so wrong .
And we need to say this for those who don’t understand what we feel or go through. Maybe then people will be less judgmental.

So here is what most people don’t know or understand about not working due to chronic condition or illness.

I personally would much rather be at work.
People look so surprised when I tell them that, some act as if I’m off on some luxurious vacation.
They have no idea that I’m probably home.

So yes, I’d rather be at work because being at work means I’m healthy again.

Logically I know that one good day doesn’t mean I have to ability to hold my full time job again , but its nice to hope I will be back to work someday.

I wish people knew how much I miss my job. I stayed far longer than I should have and probably did more damage to my knee than I needed to, because it was such an important part of my life.

I lost 90 percent of my social life when I left my career and now being at home mostly all day every day is incredibly isolating, not to mention how guilty you feel not doing your part. Every day I hope that I’ll be able to work again someday soon , there are only so many episodes of a tv show a person can watch , I am writing a book and I do take classes.

Being on disability and trying to get the best treatment is a full-time job.
I fill out paperwork constantly new doctors , more questions than answers.

Researching new treatments and the cost only to find great new Like about stem cell injections helping my Osteonecrosis but then being let down seeing that it’s 5-10k and never covered by insurance.

Then the frustration and sadness sets in because I live in America and I paid into Medicare and my share of taxes. And yet the government continues to hold up proven treatment that could help tens of thousands and yet some countries allow the cost of stem cells for their patients.

I also think many people see me and because I wear a little makeup and curl my hair, I think she doesn’t look disabled or ill. They don’t see me on the days I can barely move .
The days I need help going to the store because it gets so cold in the winter here in Ohio I am literally like concrete and in a great deal of pain.
Thank God Giant Eagle grocery store has a new shop for you curbside express.
You will be utilizing it this winter.

I try to be positive even when I’m in pain. I have a disease that is called Osteonecrosis due to trauma to the bone which has left me with a lack of blood supply to the knee.If you don’t have AVN/ON you won’t ever understand my pain.
I also have Spondylolisthesis L5S1 spine issues.
And Osteoarthritis another painful bone condition then add Spondylolisthesis,Hypothyroidism and Rosacea to the mix

Even though I get disability I do feel guilt now and then. I feel like I’m not contributing financially to my marriage and to be honest I miss working and making my own money.

My husband reminds me that he loves me and I would be doing the same for him if it were reversed and he’s right.

Being home all the time can be really lonely. If I had the energy and the physical stamina to be out and work, everyday life would be more fun again.

The isolation from limited human interaction is challenging so I started to take a few classes here or there, attend a seminar for this or that and meet new people. I’m going to be a health coach.

I find things to keep me and my mind busy.
I have a support group for Osteonecrosis.

I find that the spondylolisthesis is the more st painful of the few conditions I have, and the pain from Osteonecrosis is being managed mostly but it has its flares.

Osteoarthritis the stiffness is really indescribable.

But I make my own pain rubs and herbal remedies you can find many in this blog. But more will be in my book.

I became a patient leader and advocate.
I wrote a booklet about the Avascular Necrosis/Osteonecrosis
And I blog and I’m writing a regular ebook and it should be completed by the end of the year.
link to blog ChronicallyGratefulDebla.com

I would love to find a decent work from home job.

Trust me, I would love to hold down a regular job in the optical field again.

No one realizes that a job does more for you than just pay your bills. It is part of what gives you self-esteem.

People always want you to be there for them, but are they ever there for you? Most of the time no.

I’m bored out of my absolute mind. I loved working and until my pain got bad, my job actually took my mind off it for the most part.

So next time you see your friend or family member that’s on disability don’t envy them.

Maybe remember to call them a little more often.

And let’s hope someday the government will help people get their life back by adding stem cell injections to all forums of insurance.

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, AtomicBlonde, Avascular Necrosis, Awareness, Blessed, Bone Health, Chronic Pain, Diagnosed, Disclaimer, Eat Healthy, Factor V Leiden, Gluten Free, Inflammation, Life, Meditation, Mindfulness, OA, Osteonecrosis, Rosacea, StopTheClot, Support Group, Hope, Uncategorized

My Sleeping Giant Called Chronic Pain.

Not everyone knows what it is like to suddenly one day be told by a doctor you will have chronic pain for probably the rest if your life.
I've been blessed with a few painful diagnosis, I say blessed because I know I will help others because of my diagnosis.

Osteoarthritis 2010
Osteonecrosis 2014
Spondylolisthesis 2016
Hypothyroidism 2002
Rosecea 2017

Shock is one of the best words I can use to describe how I felt when that happened to me.

Today I discuss Osteonecrosis

When I began facing the symptoms of Osteonecrosis aka Avascular Necrosis , I was in shock the day I was diagnosed.
I just couldn't believe that a torn meniscus could lead me down this path.

One day I was fine and then the next day, I was in my bed due to intense debilitating pain.
I had a job as an optometric tech/optician that I loved.
I just never knew I would encounter something so life changing all because of a torn meniscus that ended up with me having AVN/ON.

I pictured myself being at my job for a long time, I want to retire at 59 not 51 and certainly not because I had to.

I felt as if this rare disease/disorder called Osteonecrosis had drastically altered my vision and goals and my future career.
I began to feel uncertain about my life and the plans I was making for it. My anxiety seemed to be off the chart.

When someone tells you that Osteonecrosis is bone death all you seem to hear , at least in my case is death.
My heart raced, thoughts of being in a wheelchair flashed in my mind.
This went on for a few weeks to maybe a few months.
I had to get a grip and come to terms with this. Even though my family and friends were supportive I felt terribly alone.

No one really knew how I felt and words couldn't describe that constant pain I was in.
I often refer to it as being hit by a hot lightening bolt over and over.

I woke up one day after my torn meniscus ended up with me developing Osteonecrosis and could barely walk and I could not focus when people were talking to me because my mind kept jumping around trying to figure out what I could do to help myself. How can I get some of my life back, how to get this pain to ease or just go away.
I want to get back to things I love like work, walking and hiking, living.

Through trial and error I learned what to do and what not to do for the most part. But I still get days even weeks where the pain returns to let me know it's still there, lurking like a stalker in the background.

My AVN/ON is better some days than others. The first 2 years honestly was constant pain 24/7 it was so bad I couldn't work anymore. I could not go up steps period. I could barely function.
I wasn't one to take pain pills all the time, even though I had them.
I asked my ortho for alternative ideas
He suggested CuraMed.

I started to take Terry's Naturally CuraMed 375 mg a day x 2 a day for the first week , then once a day since.

As well as Vitamin D because I was severely deficient,and a few other medications that was prescribed by my doctors.

I was taking all the other supplements before the CuraMed and honestly with in 2 weeks my pain eased up enough to notice. It was still there but not as severe.

I also read about raw and plant based food to help the pain. Amazing..

Then after about a month there were days I had very little pain ,pain still present like a dull ache and I was so thrilled to be able to at least go to the grocery store and come home and not cry or feel defeated.

I had to have a umbilical Hernia repaired and was told stop all Supplements!
I wasn't thrilled about this but understand why.

With in 3 days of not taking my supplements my pain comes back with vengeance .
Are you kidding me?!

I hate that I am unable to predict it. After a 3 years of enduring this pain off and on I am still amazed at how rapidly my condition can change.

I take my supplements everyday but sometimes the pain does put me in check. It yells HEY LADY…..
I'm still here.

Yesterday I had a flare up the pain was overwhelming so frustrating.
I'm still in pain today just not as bad as yesterday.
When I limp it throws off everything and then the Spondylolisthesis in my L5 starts acting up. I get numb when I sit. So some kind of nerve issues happening.But ya know I don't even worry about that right now.

The pain is like a sleeping giant. You never know when the beast will awaken. But look the frick out when it does.

Besides physical pain also can come body image issues, due to limited mobility and possible weight gain or loss with a chronic condition.

Limited mobility and those who have to take medications just to be able to survive takes a toll on your weight. Be it steroids which is horrible for people with AVN in fact it's been known to cause AVN . I am grateful that my avn/on was due to trauma.

I gained weight because I'm not anywhere near as active as I was yes I changed my diet but still the body has to move, and in my opinion prolonged use of any rx or supplements can have a big effect on a persons weight. Plus I have Hypothyroidism which has its own set of issues.

But because of AVN/ON , exercise may be limited or barely exist, because sometimes just getting out of bed in the morning feels like you just climbed for days in the Appalachian mountains. I have learned that no matter how much pain I'm in , I have to move some or I will feel worse.

Unfortunately mood swings can happen especially if pain is severe and often debilitating. It really sucks.

You can feel it like a light switch inside you clicks.
But 10 min later if pain is gone or subsided you can be relaxed and happy.

I really hate pain. And I hate feeling moody I like to be happy.

I started keeping a combination food/pain diary.

My food/pain diary is used to monitor levels of pain over a an extended period of time to see if I had possible triggers for my pain.

I know it might sound very weird and kind of scientific, but just think about it,say last week you had intense pain and then it was gone and say you ate a different food maybe there's a correlation between the two.

If you have a condition where you experience pain off and on for weeks or months,years you will remember that pain on January 1 or July 28th.

So if you keep a food/ pain log maybe the pain is brought on by an allergic reaction to something in a particular food.

Then you know to stay away from it.

I'm not saying it's 100 percent accurate but for me it's helped tremendously.
However somedays my body just has pain especially winter months. I used to love winter now I dread it.

Speaking of cold,I also have this freezing cold feeling in the knee that has the Osteonecrosis in it.

It feels like it's always cold , but when it really hurts it feels like it's been outside on a cold Ohio day for about 3 hours in 10 degree weather.
And the only relief I get is propping it up and applying a ThermaCare heat wrap.

That's why I track my pain , food, weather. I look for triggers.

I will post my pain tracker sheet tomorrow.

What is Avascular Necrosis/Osteonecrosis?

Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. With too little blood, the bone starts to die and may break down.
Osteonecrosis is also known as:
• Avascular necrosis
• Aseptic necrosis
• Ischemic necrosis.
Osteonecrosis is most often found in the hips, knees, shoulders, and ankles. You may have osteonecrosis in one or more bones.

In people with healthy bones, new bone is always replacing old bone. This process keeps bones strong and also happens when children grow or if a bone is injured.

In osteonecrosis, bone breaks down faster than the body can make enough strong, new bone. If you do not get treatment, the disease worsens and the bones in the joints break down.

You may not be able to bend or move the affected joint very well, and you may have pain in the joint.

Who Gets Osteonecrosis?
Osteonecrosis can occur in people of any age, but it is most common in people in their thirties, forties, and fifties.
What Causes Osteonecrosis?
Osteonecrosis is caused when the blood flow to the bone decreases, but why this happens is not always clear. Some known causes of osteonecrosis are:
• Steroid medications
• Alcohol use
• Injury
• Increased pressure inside the bone.
Risk factors for osteonecrosis are:
• Radiation treatment
• Chemotherapy
•. Smoking
• Kidney and other organ transplants.
Osteonecrosis is more common in people with illnesses such as:
• Cancer
• Lupus
• HIV
• Gaucher’s disease
• Caisson disease
• Gout
• Vasculitis
• Osteoarthritis
• Osteoporosis
•. Pregnancy
•. Blood disorders Like Factor V Leiden, Factor Viii, and Sickle Cell disease.

Osteonecrosis can also affect people for no known reason, even if they have no other health problems.
What Are the Symptoms of Osteonecrosis?
When osteonecrosis first begins, you may not have any symptoms. You may start to feel pain when you put weight on a joint with osteonecrosis. As the disease gets worse, you may have more pain and the joint may hurt even when you rest. Pain may be mild or severe.
If the bone and joint start to break down, you may have severe pain and not be able to use the joint. For instance, if you have osteonecrosis in the hip, you may not be able to walk. The time from the start of symptoms to losing use of the joint can range from months to more than a year.
How Is Osteonecrosis Diagnosed?
To diagnose osteonecrosis, your doctor will take your medical history and do a physical exam. Your doctor may then order one or more tests to see which bones are affected:
• X ray
• Magnetic resonance imaging (MRI)
• Computed tomography (CT) scan
• Bone scan
• Bone biopsy
• Measure of the pressure inside the bone.
Treatment helps more if the disease is diagnosed early.
How is Osteonecrosis Treated?
Treatment helps to keep bone in joints from breaking down. Without treatment, most people with the disease will have severe pain and limited movement within 2 years. To decide on the best treatment, your doctor will find out:
• Your age
• The stage of the disease
• Where and how much bone has osteonecrosis
• The cause, if known. If the cause is steroid or alcohol use, treatment may not work unless you stop using those substances.
The goals in treating osteonecrosis are:
• To improve use of the joint
• To stop further damage
• To protect bones and joints.
For early stage disease, doctors may first order nonsurgical treatments. If they do not help, surgery may be needed.
Nonsurgical treatments
Nonsurgical treatments may relieve pain in the short term, but they do not cure the disease. One or more of these treatments may be used at the same time.
• Medications. Nonsteroidal anti-inflammatory drugs (NSAIDs) are used to reduce pain and swelling. For people with blood clotting problems, blood thinners may be used to prevent clots that block the blood supply to the bone. If you take steroid medications, cholesterol-lowering drugs may be used to reduce fat in the blood.
• Taking weight off the joint. Your doctor may suggest that you limit your activity or use crutches to take weight off the affected joint. This may slow bone damage and allow some healing. If combined with NSAIDs, it may help you avoid or delay surgery.
• Range-of-motion exercises. Exercise of the joints with osteonecrosis may help increase their range of motion.
• Electrical stimulation. Research has shown that this can prompt bone growth.
•Prp injections and or stem cell injections A2M or prolotherapy in early stages 1 -2.
StemCell Stage 3 as long as bone has not collapsed
Surgery
In time, most people with osteonecrosis need surgery. There are four main types of surgery used for osteonecrosis. Your doctor will decide if you need surgery and what type is best for you.
• Core decompression surgery. Lowers pressure inside the bone to increase blood flow to the bone.
• Osteotomy. Reshapes the bone to reduce stress on the damaged joint.
• Bone graft. Takes healthy bone from one part of the body and uses it to replace diseased bone.
• Total joint replacement. Replaces the joint with a manmade one.

ChronicallyGratefulDebla.com

Posted in Bone Health, Chronic Pain, Eat Healthy, Flush not Blush, Food, Gluten Free, Life, Recipes, Rosacea, Uncategorized

Easy Gluten Free Bread

So I'm trying to ease up on the gluten just to see how I feel and see if my skin improves
Because out of literally nowhere I get diagnosed with rosacea 2 weeks ago and I hate it.

Also having a bunch of other pains as well from osteoarthritis,osteonecrosis.
I don't know if a person can just get rosacea out of the blue, but I never really had a so called "flare" before 2 weeks ago.

I have always been a bit pink but then bam….. pink red looking like I had a sunburn now today I look all splotchy ….
I have to figure out something

So I decided to try gluten free in past 2 weeks. It's hard you don't realize how much stuff has gluten in it.

I love bread and pasta so I figured I better try something
But all this process of elimination has me scrambling

I don't know what to eat.

I found the recipe below easier to make than old fashioned real bread.

Here's the 2 breads I made
Both came out good
And wanted to share.

This gluten-free bread recipe is perfect for sandwiches. Made with 7 ingredients almond flour, arrowroot, flax, eggs, baking soda, salt, and vinegar it’s also pretty easy to make!  If you’re feeling a bit lazy this gluten-free bread is great to have around for an easy dinner , like soup and a sandwich.

Gluten Free Breads

Recipe 1
Ingredients
• 11/2cups blanched almond flour (not almond meal)
• 3/4. cup arrowroot powder
• 1/3 cup golden flaxmeal
• 1/8 teaspoon celtic sea salt
• 1/2 teaspoon baking soda
• 3 large eggs
• 1 teaspoon apple cider vinegar
Instructions
1 In a medium bowl, combine almond flour, arrowroot, flax meal, salt, and baking soda
2 In a larger bowl, blend eggs 3 minutes until frothy
3 Stir vinegar into eggs
4 Mix dry ingredients into wet
5 Scoop batter into a well greased 7.5 x 3.5 inch loaf pan
6 Bake at 350° for 30-35 minutes, until a toothpick inserted into center comes out clean
7 Cool and serve
To store this bread, wrap in a paper towel, seal in a plastic bag, and refrigerate for up to 1 week.
I hope you enjoy this quick and easy bread! It’s full of fiber

This loaf yields a medium loaf.

Easy Bread
Recipe 2

This low-carb gluten-free bread recipe is easy to make. Simple Bread has only 6 ingredients –almond flour, baking soda, salt, eggs, honey, and apple cider vinegar. It’s the perfect healthy homemade bread recipe for those that have recently gone gluten-free.

Simple Bread

Serves: 1 loaf (about 12 slices)
Ingredients
• 2 ½ cups blanched almond flour (not almond meal)
• ½ teaspoon celtic sea salt
• ½ teaspoon baking soda
• 3 large eggs
• 2 tablespoons honey
• 1 teaspoon apple cider vinegar
Instructions
1 In a large bowl, combine almond flour, salt, and baking soda
2 In a medium bowl, whisk the eggs, then add honey, and vinegar
3 Stir wet ingredients into dry
4 Scoop batter into a well greased 7.5 x 3.5 inch loaf pan
5 Bake at 300° for 45-55 minutes on bottom rack of oven; until a knife comes out clean
6 Cool and serve

To store this bread, wrap in a paper towel, seal in a plastic bag, and refrigerate for up to 1 week.

Posted in AtomicBlonde, Bone Health, Inflammation, Life, Rosacea

Rosacea 1.0 To Newly Diagnosed Like Me

Ah yes age 54 soon to be 55 and suddenly develop skin problems.

You would think by age 50 after working all your life and dealing with Osteonecrosis Osteoarthritis Spondylolisthesis Being a former Battered woman from my 1st marriage

I could at least remain free and clear from skin problems I mean at age 50 we deserve at least 10 years of nothing else as a diagnosis

So here I am learning more stuff.
Exhausting……

1.0 Rosacea (said rose-ay-shah) is a potentially progressive neurovascular disorder that generally affects the facial skin and eyes. The most common symptoms include facial redness and inflammation across the flushing zone – usually the nose, cheeks, chin and forehead ; visibly dilated blood vessels, facial swelling and burning sensations, and inflammatory papules and pustules.
Rosacea can develop gradually as mild episodes of facial blushing or flushing which, over time, may lead to a permanently red face.
Ocular rosacea can affect both the eye surface and eyelid. Symptoms can include redness, dry eyes, foreign body sensations, sensitivity of the eye surface, burning sensations and eyelid symptoms such as chalazia, styes, redness, crusting and loss of eyelashes.
A panel of experts have agreed on a standard classification system for Rosacea. This system is a brief text that is not intended to be exhaustive, but is a place to start.
“Rosacea is a chronic cutaneous disorder, primarily of the central face. It is often characterized by remission and exacerbation and it encompasses various combinations of such cutaneous signs as flush, erythema, telangiectasias, edema, papules, pustules, ocular lesions, and rhinophyma. Primary features considered as necessary for diagnosis include flushing, erythema, papules, pustules, and telangiectasias. A variety of secondary features are listed that may be absent or present as a single finding or in any combination.”

Are there different types of Rosacea ?
The panel of Rosacea experts agreed on the following broad, non exclusive text (i.e. there may be other factors and types that come into play).
“The system divides rosacea into four subtypes: erythematotelangiectatic, papulopustular, phymatous, and ocular. As presently worded, papulopustular rosacea is noted as often being observed following or with erythematotelangiectatic disease and phymatous rosacea as following or occurring together with either erythematotelangiectatic or papulopustular rosacea. However, Dr. Wilkin emphasized that while those descriptions are consistent with common concepts about rosacea natural history, they are provisional and subject to change.”
“In its current iteration, the classification system excludes rosacea fulminans, steroid-induced acneiform eruptions, and perioral dermatitis without rosacea signs from the diagnosis of rosacea.”

What is the difference between acne and rosacea ?
As rosacea is a neurovascular disorder it affects the flushing zone.
Is is common that Rosacea does not present with blackheads that are seen with Acne Vulgaris. Also the age of onset, and the location of redness is a clue. Rosacea is commonly an adult disease, and is generally restricted to the nose, cheeks, chin and forehead. It can coexist with acne vulgaris.
Some rosacea sufferers have a significant acne component in their symptoms so it can be easily confused with acne vulgaris. The papules and pustules of rosacea tend to be less follicular in origin.
Rosacea will probably have an underlying redness that is related to flushing and thus looks different to acne vulgaris. Acne sufferers normally do not have the accompanying redness.
Rosacea usually begins with flushing, leading to persistent redness.
As both conditions are inflammatory, the treatment for rosacea and acne vulgaris can be somewhat similar, but some of the acne vulgaris regimes are too harsh for rosacea affected skin and can severely aggravate the condition.
Rosacea sufferers are cautioned against using common acne treatments such as alpha hydroxy acids (glycolic and lactic acids), topical retinoids (such as tretinoin, Retin-A Micro, Avita, Differin), benzoyl peroxide, topical azelaic acid, triclosan, acne peels, chemical peels. Additionally the caution extends to topical exfoliants, toners, astringents and alcohol containing products.

What is the difference between Rosacea and Seborrheic Dermatitis ?
Seborrheic Dermatitis and Rosacea are closely related, they both involve inflammation of the oil glands. Rosacea also involves a vascular component causing flushing and broken blood vessels.
Seborrheic Dermatitis may involve the presence of somewhat greasy flaking involving the T zone, crusts, scales, itching and occasionally burning, and may also be found on the scalp, ears and torso. It does not usually involve red bumps as in Rosacea.
The T zone is the area shaped like a `T’ composed of your forehead, nose and around your mouth.
Just to confuse things further, the two conditions are often seen together. See also: seb derm, elidel and protopic : a warning.

1.4 What causes Rosacea ?
There are a few theories, but none are yet conclusive. Popular theories include rosacea being caused by how frequently we flush and how our blood vessels cope with this flushing ; an over active inflammatory response to some unknown pathogen.
The fact that rosacea’s cause is unknown thankfully hasn’t stopped the development of some excellent treatment regimes.

How does rosacea progress ?
“Rosacea normally progresses in the same generalised fashion, frequent dilation of facial blood vessels leads to vascular hyper-responsiveness
and structural damage.”
Rosacea experts talk about rosacea symptoms appearing in 4 stages. Over time rosacea can progress from one stage to the next.
From Dr. J Wilkin:
“Most textbooks and literature citations characterize rosacea as a disease that gradually evolves from early to later subtypes. However, there is not conclusive evidence to substantiate that course and we want to know if it really occurs. Nevertheless, the individual features within a subtype can get worse, so early treatment is advocated, even if there is not progression from one stage to the next,”

How can Rosacea be treated ?
The best answer is “working with the support of your registered health professional”. There are medications available that control the redness and reduce the number of papules and pustules associated with rosacea.
Current run-of-the-mill treatment might include oral antibiotics and topical metronidazole. One study showed that the use of topical metronidazole alone can help some sufferers to reduce rosacea flare-ups once the rosacea is brought under control.
For those sufferers that do not benefit from the metronidazole based treatments, there are many other options. Quite a few treatments options are often discussed on the rosacea-support email group.
Experts agree that a gentle cleansing regime is very important. Avoiding chemicals that aggravate the rosacea, but will clean and moisturise the skin is a step in the right direction. See also: mild cleanser is important.
As the sun is a strong trigger for many rosacea sufferers, a good non-irritating sunscreen used daily is very important. For those who react badly to chemical sunscreens, a physical sunscreen may be more suitable. Physical sunscreens rely on the reflective properties of the main ingredients (rather than the ability of some chemicals to absorb the sun’s energy). The most common physical sunscreens are based on zinc oxide or titatinium dioxide.
The vitamin A derivative isotretinoin (known as Accutane or Roaccutane), has been shown to be effective against severe papopustular rosacea. It works by inhibiting sebaceous gland function and physically shrinking the glands. It also has potent anti-inflammatory properties, making it ideal to treat resistant rosacea. At low doses, accutane has also been shown to reduce other symptoms such as facial burning and redness. Accutane is a strong drug, and even at the low doses found beneficial to rosacea, should be used under strict supervision of your doctor.
Low does accutane may be more suitable than the regular dose, as there are less side effects and lesser chance of aggravating redness. See also dramatic results with low dose accutane and focus on low-dose accutane.
The mixed light pulse laser – Photoderm is showing promise as a treatment for the vascular component of rosacea. It works by targeting facial microvessels that are damaged.
One treatment that has been shown to help some is Rosacea-LTD III. It is the third generation of topical mineral salt based treatment. The minerals shrink facial vessels as well as reduce papules and pustules. More information is available at http://www.rosacea-ltd.com
For those wanting to treat the flushing side of their rosacea, 2 drugs are worth investigating. Monoxidine and Clonodine are 2 anti-hypertensives that you could look at with your doctor.
From a subjective view of the rosacea-support list members it would appear that one person’s treatment does not necessarily suit another, so your mileage may vary with any recommended treatment. Experiment a little and find what helps you. Depending on the stage of your rosacea, some treatments may be aggravating, while for others the same treatment may not cause problems. Every rosacea patient is unique and needs individual treatment.
Whatever path you choose, the support of a doctor or dermatologist that is willing to work with you will be very important, so shop around until you
are happy with your health professional.

What about steroids ?
Steroids have long been prescribed for rosacea because of their perceived quick relief. Milder (1% hydrocortisone) over the counter preparations are also popular as they are thought to be safer than the prescription strength treatment.
It is worth bearing in mind the following warnings:
over the counter steroids can cause steroid induced rosacea.
“After observation of long-term facial application of even low-dose corticosteroids, we have see many adults and children with a rosacea diathesis in whom severe burning and itching develop, along with bright red papules and nodules.This may occur after long-term application of even low-potency topical corticosteroids.
Application of topical corticosteroids causes immediate vasoconstriction and reduces the redness seen in rosacea and many other skin conditions. However, when patients discontinue usage of the topical corticosteroid, symptoms immediately reappear, and the symptoms are often much worse than those seen in the original condition.”

Can you be cured of Rosacea ?
Perhaps not cured in the sense of cured of a cold, but you can reduced your symptoms to a manageable level. There are plenty of treatment options out there, you may just need to experiment with a few.

Are there any Books about Rosacea I should read ?
There are very few books about Rosacea. In the last year of so there has been a couple of `self help’ books written about rosacea. You can find a
review of a couple of these at http://rosacea-support.org/book-reviews

Are there any non-profit organisations devoted to Rosacea ?
The National Rosacea Society is a non profit organisation set up to provide information about Rosacea. You can find them at http://www.rosacea.org/ They publish newsletters online as well as conduct surveys about rosacea sufferers. Also they make published information available to sufferers via regular mail. The National Rosacea Society are an introductory organisation that are a good first point of contact for information. In the past the NRS has awarded grants for 37 studies into rosacea.

Are there any support groups related to Rosacea ?
There is an email support group that you can subscribe to. This email group is free and unmoderated. Currently there are about 7000 users. To find out more information about the list, visit http://rosacea-support.org or I'm sure there are some on fb.

Info on Soolantra https://www.galderma.com.au/Portals/4/PIs%20and%20CMIs/Soolantra%20Consumer%20Medicine%20Information_150910.pdf

Posted in AtomicBlonde, Bone Health, Flush not Blush, Inflammation, Life, Rosacea

If You Have Rosacea, You’re Not Alone ….Me To

I am one of the estimated 16 million Americans that have rosacea, yet only a small fraction are being treated.
I didn't even know I had it.

Sure my cheeks were pink but it's summer,went to Florida and finally summer is also in Ohio warm hot humid steamy tropical 🌴 like and I love it, my bones thrive in it. So I'm trying to take advantage of it

Unfortunately my cheeks never returned to their natural pale color or even slightly tanned from vacation, they remained looking like I had a slight sunburn but it felt as if someone took a torch to me face then stung me with some rubber bands.

I figured I better get to a skin doctor.

Yep we have confirmed it ROSACEA

It's been linked to several AutoImmune disorders and of course it has its own set of triggers and every one is different

So time to learn about something else….

Heading to the website of the National Rosacea Society since provides information that may help rosacea patients better understand their disorder and more effectively manage its signs and symptoms.

Posted in #Blessed30Challenge, Arthritis, Avascular Necrosis, Awareness, Blessed, Bone Health, Chronic Pain, Diagnosed, Eat Healthy, Factor V Leiden, Happiness, Inflammation, Life, Meditation, Mindfulness, OA, Osteonecrosis, Positivity, Rosacea, Uncategorized, Vision

Body Betrayal: How to Find Gratitude and Happiness While Coping w/ Chronic Pain or Illness

This disease called Avascular Necrosis is a terrible one especially when your dealing with multifocal avn.

I am grateful to only have it in one joint

All chronic conditions that change our life and lifestyle suck and if we're not careful depression could easily take over and we lose sight of the beautiful spiritual being we are on this human journey called life.

I understand it can be depressing, being on a fixed income blows, I understand you may not be able to do the same things as before but your still the kind loving person you always were.

Don't let the pain consume your every thought.

Don't ever doubt that you have a purpose we all have a purpose in life and sometimes it will change somehow we are going through this for a reason. I'm not sure what that reason is but we were all put on this path for something.

Maybe we are going through this instead of dealing with something worse.

Do you like to write? draw? paint? poetry? craft?

I personally love photography

Are you able to still drive?

What is the one thing that could help make your life easier?

I always think of this quote when I am sad in pain and missing my old "normal " life.
Now I have a new normal

As long as you make an identity for yourself out of pain, you cannot be free of it.”
Eckhart Tolle

Up until the past year , I also often felt betrayed by my body. It was always breaking down, leaving me frustrated and pissed off.

No one else around me seemed to have as many problems.

Each moment we are in chronic pain or dealing with illness, we can choose our attitude toward it. I know pain is a bitch and it sucks and we can't do the things we used to. But maybe we have to focus on the things we can do and celebrate small victories vs beating ourselves up for things we are unable to do.

So I wanted to share a few small tips I’ve learned along the way

1. Do what you can.
Focusing on all the ways you are limited brings on a case of the “poor me’s” lickety split. “Poor-me-land” is the most unfun place ever so get outta there as quick as you can and hop on the gratitude train.
Seriously. Focusing on what you can do gives you more inner peace, keeps you grounded, and inspires you to take action.

2. Don’t do what you can’t.
Being a martyr and pushing yourself to try to appear less weak to yourself or others is a recipe for disaster. So don’t try to be a hero. If it hurts or it will hurt, and you hear yourself saying, “I should” or “Screw it, I’m doing it anyway” that means your inner critic has barged in and is running the show.
The best way I’ve learned to deal with mine is to banish to a sofa.
As weird as this may sound, it’s my way of calming down.
Then I have the grace to give myself a break.

3. Stop trying to heal.
I know it sounds weird, but hear me out. The idea of “healing” brings to my mind someone who is sick, broken, less than good enough.

What if instead of trying to heal yourself, ask yourself if you treat your body with absolute kindness?
What would that look like?
Of course you may still need to see health practitioners, but your intention shifts from getting someone to fix what is broken, to the ultimate in self-nurturing.

4. Meditate.
I don’t think there is a person alive who couldn’t benefit from meditation.This is really true for anyone experiencing chronic pain.
If you are unsure how message me.

5. Invest as much as you can in your health.
Eat as well as you can afford.
Get enough sleep
Rest when your body needs rest. You must laugh at least once a day. See your doctor and take your meds as directed.

6. Nourish yourself.
When I feel like crap or am in pain it’s so easy to eat sugary foods or chips to comfort myself and it's quick. Who wants to cook when your in pain

But it always backfires because I end up feeling empty and drained after the rushing sugar or carb high. When I choose food that I know my body will love me for, it helps me by putting more energy into healing itself. I feel more alive when I eat healthy.

7. Find pleasure.
Illness is a drag, no doubt about it. But humor and pleasure are incredibly healing. Surround yourself with as much pleasure as you can. It doesn’t have to be grandiose or expensive.
Simple pleasures every day can help alleviate suffering, whether it’s watching a comedy, crocheting, painting,using your favorite tea cup, being in nature, reading a good novel or listening to your favorite cd.

Whatever works for you.
Write a list of your favorite things, because sometimes we forget in the moment, and reminding ourselves of the fun stuff helps us do a 180 toward joy.

We have to every single day get up tell ourself how wonderful we are compliment your kids.
Celebrating the small things we can do will help us take our mind of what we can't do.

Your life style may have changed but your still a beautiful spiritual being on a human journey.
We cannot lose sight of how great we are pain or no pain.

Good Comedians to laugh at
Ralph May.
Katt Williams
Jay Larson
Ali Wong
Ellen De generous
Janeane Garofalo

Relaxation and meditation sounds
You
https://youtu.be/luRkeDCoxZ4

I may have days may pain takes over and my plans have to change.
But I am grateful for I was allowed another day to start again and appreciate my family and friends