Life is hard enough,don't go through life with pain that’s keeping you clutching the steering wheel. Join me as I share with you my life of living chronically grateful while living with chronic pain.
I have been nominated in the 10th annual WEGO Health Awards 2021 and would appreciate if you could take 1 minute of your time and endorse me.
I have been an advocate for over 30 years.
My journey began by advocating for survivors of Domestic Violence
I worked in a Battered Women’s Shelter and Rape Crisis Center for over a decade and went from monitoring the crisis line to becoming a DV shelter manager that ran a support group for women in and out of shelter. I spoke to women in correctional facilities, because often they have been abused at some point in their life.
I spoke to high schools so teenagers boys and girls would know the signs of being in a potentially abusive or controlling relationship.
I also explained date rape etc and how important it is to tell someone what happened and also tell them it was not their fault.
I also began advocating for bone and joint pain and joint health after I was diagnosed with osteoarthritis at age 35 and at age 51 after a meniscus injury landed me with yet another painful diagnosis; Osteonecrosis in my knee.
I am a fairly new facilitator for the Arthritis Foundation LiveYes Connect group in Boardman, Ohio , I also am a Arthritis Ambassador for the AF as of March 2021.
After my Osteonecrosis-aka Avascular Necrosis diagnosis I felt alone and afraid with yet another bone and joint condition was scary , I was told I had bone death. The Ortho told me there was nothing that can be done just live in pain until the knee collapses then he would replace it. I was definitely getting another opinion.
Whatt was even more scary was that many of the orthopedic doctors I saw rarely heard of it and never or rarely treated it. This left me even more concerned. You cannot have a good quality of life if you cannot find good medical care.
So I started my own support group which is worldwide and has over 1500 people in it from all over the world.
Each of those members is offered a free booklet that I wrote about Osteonecrosis so they and their family can understand that there is hope, there is treatment and unfortunately there often times is disability. But they need to know they not alone and their family can also educate themselves on the condition.
I joined WEGO Health about 7 years ago, because it was a great organization and it allowed me to advocate on a different platform. I also educated myself on other conditions and I have met some fantastic individuals, who work so hard in their advocacy.
The link below is so you can scroll and click endorse also there are several awareness links that I also have for you to view and feel free to follow me.
Being an advocate for bone and joint pain and personally living with osteoarthritis osteonecrosis and spondylolisthesis pain .
I saw our community struggle in new and ways besides living and dealing with daily pain.
People suddenly couldn’t access routine care because of lockdowns, fear and added anxiety.
They became more isolated than ever before. They and their family members faced job losses and financial hardship.
As an advocate for arthritis and a facilitator for my local LIVE YES Connect Group, I had to cancel or postpone in-person programs and events.
But on the plus side we went virtual on Zoom
Some members and their families faced added strain, whether dealing with virtual school or safety concerns for loved ones in nursing homes.
It’s a year most are happy to see come to an end.
But as a person with pain, I am always compelled to find silver linings. Even in the mist of challenging of times.
In 2020, I got to travel to Washington D.C participate in a focus group and then speak on Capital Hill.
I met some fantastic people from our state representatives to other leaders and advocates who work so hard to create a strong support system for so many causes and conditions.
I got to stay in a great city and tour the beautiful historical city of Washington D.C
We made great strides in accessibility, as health care system finally embraced telehealth and more companies allowed remote work.
Many disabled now gave hope to possibly getting a part time job working from home now because we see it is doable.
We seen a President work tirelessly to get pharmaceutical companies to create a vaccine quickly that will be safe for the USA and world.
We gave witnessed the power of science and innovation with the development of promising treatments and vaccines.
We saw our neighbors and communities come together to support one another in their time of need.
Despite the news only showing negativity there was a lot of positive happening.
2020 shown how resilient we are. And to never lose faith. Be grateful for everyday.
I don’t know what 2021 will bring;
I’m hoping it will be a fantastic year.
I just want to Thank you for your support, and following me on IG, Blog, and all social media platforms I promise to bring you current and uplifting information in 2021 and I wish you all a safe, healthy, prosperous and happy new year
Today is a special day for me , it’s the second annual Avascular Necrosis Osteonecrosis Awareness Day.
The am still working hard to get every state to work with the others so we all have one date to raise awareness and bring recognition to the painful disease called Osteonecrosis which goes by several others names.
It’s a slow yet rewarding experience
More people are learning about Osteonecrosis , what it is how you get it in many cases. And that’s what it’s all about. To get people to listen to us, learn about it. That way we can get better options for treatment and pain.
Some of the faces of AVN women is this picture
Osteonecrosis
Avascular Necrosis
SONK
SPONK
Ischemic Necrosis
Aseptic Necrosis
Legg Calves Perthes – Avn children
Kienbock’s Disease Avn wrist
Kümmell disease Avn in vertebrate
ONJ Osteonecrosis of the Jaw
and so many more …….
Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. In people with healthy bones, new bone is always replacing old bone. In osteonecrosis, the lack of blood causes the bone to break down faster than the body can make enough new bone. The bone starts to die and may break down.
You can have osteonecrosis in one or several bones. It is most common in the upper leg. Other common sites are your upper arm and your knees, shoulders and ankles. The disease can affect men and women of any age, but it usually strikes in your thirties, forties or fifties.
At first, you might not have any symptoms. As the disease progresses , you will probably have joint pain that becomes more severe. You may not be able to bend or move the affected joint very well.
No one is sure what causes the disease. Risk factors include
Long-term steroid treatment
Alcohol misuse
Joint injuries
Having certain diseases, including arthritis and cancer
Doctors use imaging tests and other tests to diagnose osteonecrosis. Treatments include medicines, using crutches, limiting activities that put weight on the affected joints, electrical stimulation and surgery.
How do I deal with my knee and back pain until the orthopedic doctors start seeing patients again?
There are a variety of non-operative treatment options for pain. No one treatment is going to help everyone, and patients need to find the treatments that seem to work the best for them.
Medications I personally cannot take NSAIDS so I reach for
Acetaminophen (Tylenol) is an over-the-counter option that is safe and effective for me.
For many Non-steroidal anti-inflammatory medications (NSAIDs) – e.g. Ibuprofen and naproxen – may also be helpful. Prescription NSAIDs are also an option to discuss with your health care provider.
Some say medical marijuana helps them. I’ve never tried it so I cannot comment.
Supplements, such as glucosamine/chondroitin, are generally safe and may be helpful in reducing some arthritic pain. Also talk to you doctor about curcumin supplements tablets .
I drink Turmeric tea aka golden milk it is a natural anti-inflammatory agent.
Exercise helps me. I’m not talking about running or walking a marathon.
Just 1-2 miles once or twice a day. Makes me feel good especially in summer. My joints love the heat.
I have a daily exercise regimen, specifically designed for me and my knee osteonecrosis osteoarthritis, and this back pain that is really an out of the blue pain.
With osteonecrosis moving is critically important for maintaining strength in muscles supporting the joints , reducing pain and it’s also great for stress.
It is important to be as active as your joints allow and find a variety of stretching and strengthening exercises that you perform daily, without increasing your pain.
A good source for exercise instruction for arthritis may be found at you ortho office maybe they can email you some ideas.
Crutches, a walker, ice/heat treatments and a knee brace may also be helpful in managing your hip and/or knee pain.
Weight Loss and Diet
The covid 19 is a little saying that explains what is happened to many since the pandemic.
And extra 19 pounds can cause the joints to really hurt.
Many patients with osteonecrosis and arthritis are carrying a few extra pounds and weight loss reduces stress across our joints.
We put 3-5X our body weight across our hip and knee joints with activity, particularly stair climbing and getting in and out of a chair. Every 10 pounds of extra weight carried results in 50 pounds of weight bearing pressure across the hips and knees!
A healthy diet is important for general health and weight loss, and some may find benefit from focusing on an “anti-inflammatory” diet. The anti-inflammatory diet is a diet which includes tomatoes, olive oil, green leafy vegetables, nuts, fatty fish, and fresh fruit, particularly blueberries, strawberries, cherries and oranges. Foods thought to cause inflammation, and to avoid, include white bread and pastries, French fries, soda, margarine and red meat.
In summary: stay active, eat healthy, maintain social distancing as instructed and maintain a positive attitude.
Please know that your orthopedic provider and all pcp ‘s are also anxious to get back to “business as usual” and help you to resolve your arthritic pain!
Check out my other posts on great recipes
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Will physical activity reduce or increase your arthritis pain? Get tips on exercise and other common concerns when coping with arthritis symptoms and arthritis pain.
Arthritis is a leading cause of pain and disability worldwide. You can find plenty of advice about easing the pain of arthritis and other conditions with exercise, medication and stress reduction. How do you know what will work for you?
Here are some do’s and don’ts to help you figure it out
Basics
Whatever your condition, it will be easier to stay ahead of your pain if you:
• Learn all you can about your condition, including what type of arthritis you have and whether any of your joints are already damaged
• Enlist your doctor, friends and family in managing your pain
• Tell your doctor if your pain changes
Everyday routines
Pay attention to your joints, whether sitting, standing or engaging in activity. When we have pain the last thing we want to do is move but often what we should be doing.
• Keep your joints moving. Do daily, gentle stretches that move your joints through their full range of motion.
• Use good posture. A physical therapist can show you how to sit, stand and move correctly.
• Know your limits. Balance activity and rest, and don’t overdo it.
In addition, lifestyle changes are important for easing pain.
• Manage weight. Being overweight can increase complications of arthritis and contribute to more arthritis pain. Making incremental, permanent lifestyle changes resulting in gradual weight loss is often the most effective method of weight management.
• Quit smoking. If you smoke stop. It’s not that hard , I quit smoking and so can you. Smoking causes stress on connective tissues, which can increase arthritis pain.Smoking also slows down the healing process as well as it’s a nasty stinky habit.
Exercise
When you have arthritis, movement can decrease your pain and stiffness, improve your range of motion, strengthen your muscles, and increase your endurance.
What to do
Choose the right kinds of activities those that build the muscles around your joints but don’t damage the joints themselves. A physical or occupational therapist can help you develop an exercise program that’s right for you.
Don’t just go start jogging if you have knee problems or lifting weights if you have back and joint issues.
Always consult your doctor before doing anything!!
Once you get the ok.
Focus on stretching, range-of-motion exercises and gradual progressive strength training. Include low-impact aerobic exercise, such as walking, cycling or water exercises, to improve your mood and help control your weight.
What to avoid
Avoid activities that involve high impact and repetitive motion, such as:
• Running
• Jumping
• Tennis
• High-impact aerobics
• Repeating the same movement, such as a tennis serve, again and again
Medications
Many types of medications are available for arthritis pain relief. Most are relatively safe, but no medication is completely free of side effects. Talk with your doctor to formulate a medication plan for your specific pain symptoms.
What to do
Over-the-counter pain medications, such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve) can help relieve occasional pain triggered by activity your muscles and joints aren’t used to — such as gardening after a winter indoors. But not everyone can take certain medications again talk to your doctor.
Cream containing capsaicin may be applied to skin over a painful joint to relieve pain, do not use if you have a scratch, cut or open wound. Use alone or with oral medication.
Consult your doctor if over-the-counter medications don’t relieve your pain.
What to avoid
• Overtreatment. Talk with your doctor if you find yourself using over-the-counter pain relievers regularly.
• Undertreatment. Don’t try to ignore severe and prolonged arthritis pain. You might have joint inflammation or damage requiring daily medication.
• Focusing only on pain. Depression is more common in people with arthritis. Doctors have found that treating depression with antidepressants and other therapies reduces not only depression symptoms but also arthritis pain.
Physical and emotional integration
It’s no surprise that arthritis pain has a negative effect on your mood. If everyday activities make you hurt, you’re bound to feel discouraged. But when these normal feelings escalate to create a constant refrain of fearful, hopeless thoughts, your pain can actually get worse and harder to manage.
What to do
Therapies that interrupt destructive mind-body interactions include:
• Cognitive behavioral therapy. This well-studied, effective combination of talk therapy and behavior modification helps you identify — and break — cycles of self-defeating thoughts and actions.
• Relaxation therapy. Meditating, doing yoga, deep breathing, listening to music, being in nature, writing in a journal do whatever helps you relax. There’s no downside to relaxation, and it can help ease pain.
• Acupuncture. Some people get pain relief through acupuncture treatments, when a trained acupuncturist inserts hair-thin needles at specific points on your body. It can take several weeks before you notice improvement.
• Heat and cold. Use of heat, such as applying heating pads to aching joints, taking hot baths or showers, or immersing painful joints in warm paraffin wax, can help relieve pain temporarily. Be careful not to burn yourself. Use heating pads for no more than 20 minutes at a time. Use of cold, such as applying ice packs to sore muscles, can relieve pain and inflammation after strenuous exercise.
• Massage. Massage might improve pain and stiffness temporarily. Make sure your massage therapist knows where your arthritis affects you.
What to avoid
• Smoking. If you’re addicted to tobacco, you might use it as an emotional coping tool. But it’s counterproductive: Toxins in smoke cause stress on connective tissue, leading to more joint problems.
• A negative attitude. Negative thoughts are self-perpetuating. As long as you dwell on them, they escalate, which can increase your pain and risk of disability. Instead, distract yourself with activities you enjoy, spend time with people who support you and consider talking to a therapist.
I had an amazing experience participating in Rare Week in Washington DC.
I arrived Feb 25 and left Feb 29, 2020.
Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
I arrived empowered and I left empowered and my advocacy on on fire and I was exhausted and yet rejuvenated all at the same time.
This was my first time on Capitol Hill and it will not be my last.
I met so many amazing people.
I also participated in a focus group which was the main reason why I went but the opportunity cane to go a few days earlier and I took advantage of that time.
hosted by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is designed to educate and activate advocates and to foster relationships within the community.
900 RARE DISEASE ADVOCATES
393 MEETINGS WITH CONGRESS
227 PATIENT ORGANIZATIONS
1 AMAZING RARE DISEASE WEEK!
I spoke on Capitol Hill, Met one of my Senators for Ohio.
Spoke up about Osteonecrosis and how we need better treatment options like prp injections,stem cell injections, clinical trials and getting new treatments covered by insurance also I discussed osteoarthritis and how it can be debilitating as well.
I passed out 200 copies of my Osteonecrosis booklet to people on Capitol Hill thanked several for issuing proclamations for November 29 becoming Osteonecrosis Awareness Day in many States my goal Is all states.
I then toured that amazing and beautiful town of our nation’s capital.
Took a night tour that was amazing until a lady tripped and grabbed me causing me also to go down.
Blasted my knee and it looks like a water balloon but thank God it’s not broken.
Rare Week Capitol Hill February 2020
I had an amazing experience and I am so grateful I got the opportunity to go and I look for to being in Washington DC more often.
Alabama is giving us for rare disease awareness the week of February 20,2020 to February 27, 2020 as Avascular Necrosis Osteonecrosis Awareness Week!!!
And on November 29 Avascular Necrosis Osteonecrosis Awareness Day!!
Can you predict the weather based on how your joints feel?
Is it Cloudy with a chance of pain I your neck of the woods?
Can increased joint pain be caused by the weather?
In my opinion and experience absolutely
For every mile I walk in the fall feels like 2 on my knee joints especially when it’s below 45 degrees and the air is very dry.
When its fall and winter my bones sound like I am walking on a few leaves or twigs some days.
There is no one explanation for why dropping temperatures affect your joints.
One theory relates to drops in barometric pressure, which causes tendons, muscles, and the surrounding tissues to expand. Because of the confined space within the body, this can cause pain, especially in joints affected by osteoarthritis.
For me having Osteoarthritis and Osteonecrosis as well as Spondylolisthesis in my L5S1 this weather has been pretty painful for several years now. But I cannot allow it to keep me from moving.
In days I just want to stay under the blanket, I still make sure I move .
Sitting is a killer.
Thankfully I have found ways to help my pain
I take curcumin as well as a few years ago started to I eat a more plant based diet.
It’s not only helped my pain be less intense it’s also given me other benefits, lower blood pressure, lower cholesterol and triglycerides and my scale was lower.
Sure we need protein but for me I prefer mostly plant protein and occasionally eat chicken and fish and maybe 1x a month good quality red meat.
I have noticed a big improvement on how I feel also.
Less foggy , more energy and just overall more balanced.
I eat
Omega-3 fatty acids.Think fish and walnuts to curb inflammation. Avocados yummy!!
Vitamin K.Make meals that feature greens, such as spinach, kale, and cabbage, for their pain-soothing properties.
Vitamin C.Add color to your diet with juicy oranges, sweet red peppers and tomatoes, and other C-rich foods to halt cartilage loss (and resulting pain) that comes with arthritis
Spices Turmeric, Curcumin,Hot peppers, Sriracha I love all the heat and they have anti inflammatory properties that help with pain.
I avoid
Avoid foods high in omega-6 fatty acids, such as corn oil, which may trigger painful inflammation.
Also swap refined grains formore whole grain. research suggests refined grains have an inflammatory effect, whereas high-fiber whole grains may help reduce inflammation.
Keep Moving One reason cold weather is linked to joint pain is people are less likely to exercise when it’s chilly and damp.
Being a couch potato is bad news for your joints because exercise helps lubricate them to prevent pain and it’s shown to age us faster.
I have a recumbent bike forindoors to help my joints stay moving.
I make sure I’m getting plenty of vitamin D to help keep my bones stay strong and prevent even morejoint pain.
I for a supplement with D3 (the kind your body manufactures from sunlight), but check with your doctor first because some supplements can interact with prescription and over-the-counter drugs.
Another thing I do is I keep my joints warm.
I love thermacare heat wraps.
Many ask me about what I eat in a day or what products I like.
So lasted this week I will let you know as I get my holiday favs ready.
Before you take one more bite of that fast food lunch or dinner consider how it affects your osteoarthritis.
Did you know that research shows that diets high in saturated fat – found in red meat, butter, cheese, lard and processed foods – can weaken knee cartilage, making it more prone to damage.
Yep so start eating more plants
There was a study in 2017 published in Arthritis Care & Research, researchers followed more than 2,000 patients with OA for up to four years, checking disease progression and diet at yearly intervals. Participants who ate the most fat, especially the saturated kind, showed increasing joint damage, whereas those who ate healthy fats like olive oil and avocados had little disease progression.
Another recent animal study showed that it even may harm the underlying bone, according to Yin Xiao, PhD, a professor at Queensland University of Technology in Australia and lead author of a 2017 study that looked at the effect of diet on OA.
“Our findings suggest that it’s not wear and tear but diet that has a lot to do with the onset of osteoarthritis,” he says.
Blame It On Inflammation
Fat’s not the only culprit, though. Sugar, refined carbs, red meat, processed food and corn and soybean oils can spark inflammation, too. Barry Sears, PhD, a long-time researcher in inflammatory nutrition, says eating them is “like throwing a match into a vat of gasoline.”
These foods also tend to pack on pounds, putting extra pressure on stressed joints. To make matters worse, body fat, especially the kind that collects around your belly, makes its own inflammatory proteins, perpetuating the cycle of inflammation even after you’ve sworn off junk food forever.
Fighting Back
The solution is to change the way you eat. Switching to an anti-inflammatory or Mediterranean-style diet can help you lose weight and significantly improve your joint, heart and brain health without sacrificing good taste.
An anti-inflammatory diet is heavy on fruits and vegetables, whole grains, fish and healthy fats like olive oil, avocados and nuts. Poultry’s allowed now and then and you can have one glass of red wine or beer a day. Off the menu, as you might expect, are sugar, red meat, and processed foods.
What sets this way of eating apart is that it actively fights inflammation, experts say.
“There are a variety of foods in the Mediterranean diet that are high in fiber, beta carotene, magnesium and omega 3s, all of which have been found to reduce inflammatory markers in human studies,” explains Michelle Babb, MS, RD, a Seattle-based nutrition educator.
“I’ve had [arthritis] patients who have been able to discontinue the use of non-steroidal anti-inflammatory drugs (NSAIDs) as a result of transitioning to a Mediterranean diet. Some even report a noticeable difference in pain in the first week.”
Even so, changing the way you eat can be daunting.
“Don’t expect your diet to change overnight,” advises Sotiria Everett, EdD, RD, an assistant professor at Stonybrook University Medical Center in New York. “Start by looking at what you’re eating now (a food diary is a great way to do this) and identifying areas where you can improve.”
But Babb doesn’t see a problem. Her patients “really enjoy this food plan and don’t feel it’s a hardship to follow it,” she says.
She admits it takes more work and advance planning than the drive-through and recommends prepping some food for the week in advance.
I personally can agree with this as when I stopped eating so much red meat and cut out sugar and most processed junk I felt much better .
And when I eat things that are not as healthy as they should be I feel more pain.
So try a plant based diet or as they suggest Mediterranean
I have started a petition to get the rare disease Osteonecrosis recognized by asking for an awareness month week or day. If they won’t allow a month.
I could use as many supporters as possible to help me and share this.
No money at all is needed.
I hope you will help me raise awareness
Take Action: We Need Osteonecrosis Awareness To Have The Month Of October to Recognized & raise awareness #Osteonecrosis #AvascularNecrosis please help and sign and share
To President Donald Trump, The U.S. House and The U.S. Senate
We, the patients of a rare disease called Osteonecrosis respectfully ask the United States of America in this petition to the US Congress to pass legislation to establish and recognize October as Osteonecrosis Awareness Month in the United States.
The people of the United States are called upon to observe the month of October with appropriate educational and awareness opportunities, and recognition.
With hundreds of thousands of US residents suffering from this disease and more being diagnosed everyday , there is a need for this community to have an active voice and recognition.
It is happening in all age groups from child to elderly
Osteonecrosis, also known as Avascular necrosis (AVN), aseptic necrosis or ischemic bone necrosis, is a disease resulting in the death of bone cells. If the process involves the bones near a joint, it often leads to collapse of the joint surface and subsequent debilitating often crippling arthritis due to an irregular joint surface.
Although it can happen in any bone, osteonecrosis most commonly affects the ends (epiphysis) of long bones such as the femur (thigh bone). Commonly involved bones are the upper femur (ball part of the hip socket) the lower femur (a part of the knee joint), the upper humerus (upper arm bone involving the shoulder joint), and the bones of ankle joint. The disease may affect just one bone, more than one bone at the same time, or more than one bone at different times.
Osteonecrosis can cause severe pain and disability. Early diagnosis and early treatment may improve the outcome.
Osteonecrosis may result from use of glucocorticoid (sometimes called corticosteroid) medicine or from drinking too much alcohol but there are many causes and also some that are unknown.
Though osteonecrosis can occur in almost any bone of the body, the hips, knees,ankle and shoulders are the most common sites affected.
The cause and treatment for osteonecrosis of the jaw differs from that for osteonecrosis found elsewhere.
The most common causes of osteonecrosis are:
Serious trauma to bone or joint (injury), which interrupts a bone’s blood supply
Corticosteroid medications (such as prednisone, cortisone or methylprednisolone), mainly when a high dose is used for a prolonged period of time
Excess alcohol consumption
Systemic lupus erythematosus
Other risk factors for osteonecrosis include:
Decompression disease (also called the “Bends” that can occur with scuba diving)
Blood disorders such as sickle cell anemia, antiphospholipid antibody syndrome (APS) and lupus anticoagulant, factor v leiden, and others
HIV infection (the virus that causes AIDS)
Radiation and Chemotherapy
Bisphosphonates, which may be linked to osteonecrosis of the jaw
Organ transplants
Osteonecrosis is not life-threatening, but it is debilitating and hurts our quality of life. Although it isn’t well-known and its exact cause is unknown, AVN-ON affects 10,000-to-20,000 Americans annually. Between 30 and 60 percent of patients will experience AVN-ON bi-laterally, which means both sides so if one hip or knee has it most likely so will the other.
Please help those of us that suffer from this condition by creating more research , funding studies and allowing us the recognition, as only through education, research and awareness can we get better treatment options, earlier diagnosis and hopefully prevention.
