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
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
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.
When diagnosing any knee pain, the physician will take your medical history and perform a thorough physical examination.
To help your doctor best understand your knee pain, you’ll need to provide the following information:
• A description of your knee pain (aching, tenderness, burning or swelling)
• Where the pain is located and when it occurs
• When the pain started (and if it is the result of an injury or accident)
• Anything that makes the pain worse or better
Your doctor also may order imaging tests to view the joint, which may include the following:
X-rays – An X-ray can show if there are certain problems, such as deterioration or fracture, within your knee.
MRI – In some cases, your doctors may order a magnetic resonance imaging (MRI) scan. An MRI provides significantly more detail about the soft tissues in your knee, such as the cartilage on the surface of the bones, ligaments, tendons and muscles.
CT scan – Computerized tomography scans combine X-ray views from multiple angles, creating a two- or three-dimensional, cross-sectional image. These images show “slices” of bone and soft tissue.
Knee injuries can be the result of sports, falls or trauma. They typically involve the ligaments that hold two of the bones of the knee – the femur and tibia – together. Here are some of the most common types:
Injuries to the anterior cruciate ligament (ACL) are among the most common and dreaded sports injuries. Your ACL keeps your knee from moving too far out of position. Changing directions too quickly or hyperextending the knee can tear the ACL. Women are more prone to tearing the ACL. Surgery is often necessary to repair damage to an ACL.
A stretch or tear of the medial collateral ligament (MCL) is typically caused by a hit or blow to the outer knee. Pain is felt along the inner knee. Bracing and conservative treatment, such as rest and physical therapy, are usually sufficient to heal these injuries.
The meniscus is crescent-shaped cartilage between your thigh bone (femur) and lower leg bone (tibia). You have two of these cushions in each of your knees, inner (medial) and outer (lateral). The medial one is most often injured. These injuries often are caused by sudden twisting, resulting in swelling, pain and locking of the knee. Arthroscopic surgery may be necessary to remove the torn fragment when conservative treatment does not help.
Knee pain has many causes. Some of the most common include:
Arthritis is a chronic condition that causes joint inflammation. Symptoms include redness, warmth, swelling, tenderness and pain. Up to 30 percent of the population may have knee osteoarthritis, or “wear and tear” arthritis. This is the gradual breakdown of the cartilage in the knee. Also called degenerative joint disease, osteoarthritis usually develops over years and often is found in patients who have had a knee infection or injury and those who are overweight.
As cartilage wears away, the bones around it can grow thicker and develop bony spurs. This can lead to increased friction between the bones and disrupted movement in your knee. This also can lead to problems with the synovium, a membrane in your knee that produces a liquid to keep your cartilage slippery. This membrane can become inflamed and make too much fluid. This results in swelling, or “water on the knee.” In the most severe cases, the knee can become deformed as the continued friction wears away the bone.
Common symptoms of osteoarthritis include pain, stiffness, tenderness, a limited range of motion and a grating sensation when you bend your knee. The pain is usually worse after activity.
Rheumatoid arthritis can affect joints on both sides of the body (both knees, both hands and/or both wrists). In rheumatoid arthritis, your body’s cells attack your own tissues. While in most people symptoms develop gradually over years, they can appear rapidly. Rheumatoid arthritis affects three to five times more women than men and often presents between the ages of 20 and 50.
Rheumatoid arthritis may be related to a combination of abnormal immunity and genetic, environmental and hormonal factors. Over time, rheumatoid arthritis can cause cartilage to wear away, swelling in the synovium, and excess fluid in the knee. In later stages, bones can rub against each other.
Bursitis is the inflammation of any of the fluid-filled sacs (bursae) protecting the body’s joints. This is usually caused by repetitive motions or by a stress such as kneeling. Sometimes, a sudden injury can cause bursitis.
The tendons – rope-like tissues connecting muscles to bone at the knee and other joints – can become painfully inflamed by repetitive and strenuous movement. Tendonitis is a common sports injury, caused by overuse of the same parts of the body. Patellar tendinitis, or “jumper’s knee,” is an inflammation or irritation of the tendon between the knee cap and the shin bone.
A lump behind your knee could be a Baker’s cyst. A Baker’s cyst, also called a popliteal cyst, is a fluid-filled pocket that causes swelling and tightness behind the knee. Often, it is not painful. A Baker’s cyst is typically associated with arthritis or a cartilage tear, conditions that can cause your knee to produce too much fluid. The key to treatment is to find the underlying cause of the fluid accumulating in the Baker’s cyst.
Patellofemoral pain syndrome (PFPS)
Knee pain or discomfort while walking up and down stairs, jumping or squatting may be symptoms of patellofemoral pain syndrome. This common knee problem is felt toward the front of the knee. It can cause a grinding sensation when bending or straightening your leg, and can cause your knee to occasionally buckle. Sometimes called “runner’s knee,” patellofemoral pain syndrome may be caused by a kneecap that is not aligned properly, overuse, injury, excess weight or when the cartilage in the knee cap is worn significantly.
Osteonecrosis aka Avascular Necrosis
Osteonecrosis of the knee (also known as avascular necrosis) is a painful condition that occurs when the blood supply to a section of bone in the femur (thighbone) or tibia (shinbone) is disrupted. The pain varies from no pain to severe hot pain. Like bathe feeling of being hit in knee with a hot iron or sharp stabbing lightening bolt pain. Treatment can vary depending on stage from Prp injections to Total Knee Replacement.
SPONK Spontaneous Osteonecrosis of the knee comes on suddenly.
Did you know that your knee is the largest joint in your body. Its a really amazing and complex mechanism made of bone, cartilage and ligaments. The cartilage in your knee acts as a cushion and gliding surface. So the knee can move freely.
When the knee is healthy, the cartilage keeps the bones in the joint from rubbing together. However, when the joint is affected by arthritis, the bones make contact and cause mild or severe pain.
Injuries, as well as aging and degenerative conditions such as arthritis, osteoarthritis can cause the cartilage to break down.
Things like osteonecrosis of the knee (also known as avascular necrosis) is a painful condition that occurs when the blood supply to a section of bone in the femur (thighbone) or tibia (shinbone) is disrupted. And eventually can lead to severe osteoarthritis and even joint collapse.
Knee pain can affect every step you take. From playing sports to climbing steps, knee pain is difficult to ignore.
Some home remedies may help temporarily, but if you have chronic pain or symptoms such as swollen or red joints, it’s time to see a doctor.
I am not a fan of steroid injections or corticosteroids period as they can lead to Osteonecrosis.
And in my opinion doctors use these way too much for me. It seems like the go to drug for everything.
Because it helps inflammation but When prescribed in doses that exceed your body’s usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions, such as arthritis and asthma.
But they also have side effects like
What side effects can corticosteroids cause?
Elevated pressure in the eyes (glaucoma)
Fluid retention, causing swelling in your lower legs.
High blood pressure.
Problems with mood swings, memory and behavior and other psychological effects, such as confusion or delirium. Just to name a few.
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
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
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.
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:
• High-impact aerobics
• Repeating the same movement, such as a tennis serve, again and again
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.
So I have been meditating for over 18 months. It has helped me learn to quiet my mind. Focus on my breathing and start taking back some control of my pain.
It sure did pay off last week.
I fell after another bowman lost her balance her cane went sliding and she also grabbed onto me as for me to stop her fall.
That did not happen.
As with any time I am feeling pain I try to meditate the pain away.
Sometimes it works fantastically sometimes it just calms me which is also good.
Here are the steps I take to help meditate my pain away
Step 1: Stabilize your mind
Step 2: Identify the area where you feel pain.
Step 3: Focus your mind to the pain sensation in the area.
Step 4: Notice if the pain sensation changes.
Step 5: If your mind wanders, gently bring your mind back to the object of your meditation, which is a focused awareness on pain.
Mind stabilization can be achieved with mindfulness meditation, described as “a simple mental exercise, which develops mindfulness and concentration by paying attention on a chosen object (for example, taste of food or activity you wish to focus on) and holding the attention for a period of time. Mindfulness meditation does not necessarily require sitting but can be practiced while eating, walking, running, commuting, and doing other activities. This mental exercise also helps develop an ability to sustain mindfulness for prolonged time.”
Here are helpful tips for quieting an unquiet mind:
Meditate for only two minutes (gradually move to 3,4,5,15… minutes)
Use a timer to remind you of an end of a meditation session.
Instead of trying to stop, welcome it whatever arises.
If you cannot concentrate on the object of your meditation, pay attention to the thoughts and stories occurring in your mind instead.
If you cannot meditate while sitting, meditate while walking,hiking,running,laying down at night, eating etc….
Say to your self
Breathe in I breathe out am – do this a few times then add I am pain free, I am healing, I am well.
When I’m finished doing this for a few minutes at the end I rub my hands together get them warm and gently place the palms of my hands on my eyes. It feels so good. You can then rub your head.
Feeling the energy in your body going to help your pain.
Palming helps the eyes
Palming: Palming, which was originally invented by Tibetan yogis, is done in darkness with the palms cupping the eyes. Palming soothes the optic nerve, which is often irritated. Sit in a darkened room with your elbows leaning on a table. Relax your back and shoulders, rub your hands together vigorously to warm them, then place your palms over your eyes. Don’t press the eye sockets and don’t lean on the cheekbones. Visualize total blackness, the most relaxing color for the brain, and breathe deeply. Let the blackness permeate everything: your eyes, your whole body, the room you sit in, the city, the state, the continent, the planet, the stars, the universe.
You may see all kinds of lights, which is an indication of irritation in the optic nerve. In fact, you may not see total darkness until you have completed several palming sessions. Palm for as long as is comfortable.
I find this not just relaxing but I feel centered , calm , content and I have less pain when I do this 2x a day, for just 10 minutes.
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.
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.
Finally Avascular Necrosis-Osteonecrosis has an official awareness date.
The date is November 29
I have been working on proclamations for several months and I am in the process of getting the awareness day Nationally recognized as well.
I have been advocating for over 5 years on Avascular Necrosis -Osteonecrosis and I am proud and grateful that our elected officials are also recognizing this awareness day.
What is a proclamation?
A proclamation is a formal way to make a public announcement or declaration. Government officials, such as mayors and state legislators, often issue proclamations to announce upcoming events or celebrations or to increase public awareness of particular issues.
I am proud to say I was issued a proclamation by my local Mayor of Youngstown Ohio
And also by Senator Michael Rulli of Ohio.
I have heard from Washington DC and it’s a longer procedure but it’s being looked at.
Right Now AVN-ON falls under the rare disease / disorder category.
In the United States, araredisease is defined as aconditionthat affects fewer than 200,000 people. This definition was created by Congress in the Orphan Drug Act of 1983.Rare diseasesbecame known as orphandiseasesbecause drug companies were not interested in adopting them to develop treatment
Well I am hoping that now that AVN is getting recognition we can get more research to help all of us that are dealing with this painfulcondition.
Thank you to
SenatorMichael Rulli -Ohio
Mayor Jamal Tito Brown – Youngstown Ohio
For helping us who suffer finally get the awareness day we deserve
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.
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.
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.