Tag: Bone Health

Posted in Awareness

World Sickle Cell Awareness Day June 19, 2021

Posted on by ChronicallyGratefulDebla

This World Sickle Cell Day (observed every year on June 19), find new stories and resources about sickle cell disease!

So many people I have met that have sickle cell disease also have Osteonecrosis aka Avascular Necrosis.

Sickle Cell is an inherited blood disorder that causes “sickle” shaped red blood cells that can stick together, blocking blood flow and oxygen from reaching all parts of the body. People with SCD can experience pain, anemia, infection as well as many other health issues like Osteonecrosis, Vision Loss , Anemia,DVT and Extreme pain.

According to some of my Osteonecrosis group members : Living with sickle cell disease can be a challenge. But there are steps you can take to live the healthiest best life possible.

Here are some tips from the CDC web page

It is very important that every person or family with a young child with sickle cell disease have a plan for how to get help immediately, at any hour, if there’s a problem. Be sure to find a place that will have access to your medical records or bring a copy.

Go to an emergency room or urgent care facility right away for:
  • Fever above 101° F
  • Difficulty breathing
  • Chest pain
  • Abdominal (belly) swelling
  • Severe headache
  • Sudden weakness or loss of feeling and movement
  • Seizure
  • Painful erection of the penis that lasts more than 4 hours
Call a doctor right away for:
  • Pain anywhere in the body that will not go away with treatment at home
  • Any sudden problem with vision

People with sickle cell disease can live full lives and enjoy most of the activities that other people do. The following tips will help you, or someone you know with sickle cell disease, stay as healthy as possible.

Find Good Medical Care

Sickle cell disease is a complex disease. Good quality medical care from doctors and nurses who know a lot about the disease can help prevent some serious problems. Often the best choice is a hematologist (a doctor who specializes in blood diseases) working with a team of specialists.

Get Regular Checkups

Regular health checkups with a primary care doctor can help prevent some serious problems.

  • Babies from birth to 1 year of age should see a doctor every 2 to 3 months.
  • Children from 1 to 2 years of age should see a doctor at least every 3 months.
  • Children and adults from 2 years of age or older should see a doctor at least once every year.

Osteonecrosis is common in patients with sickle cell disease, with an incidence ranging from about 2 to 4.5 cases per 100 patient-years. Patients with the hemoglobin SS genotype and α-thalassemia and those with frequent painful crises are at highest risk. The overall prevalence is about 20-30 percent.

Osteonecrosis, a form of ischemic bone injury that leads to degenerative joint disease, affects ∼30% of people with sickle cell disease. Although osteonecrosis most commonly affects the femoral head (often bilaterally, with asymmetric clinical and radiographic progression), many people with sickle cell disease also present with multifocal joint involvement. Meaning it can be in the femoral head or hip as well as knees, shoulder, ankle etc…

Eat healthy with sickle cell more fruit and vegetables less processed junk and stay hydrated

References

CDC https://www.cdc.gov/ncbddd/sicklecell/index.html

Ash Publications https://ashpublications.org/hematology/article/2019/1/351/422583/Osteonecrosis-in-sickle-cell-disease-an-update-on

Eat right . Org https://www.eatright.org/health/allergies-and-intolerances/food-intolerances-and-sensitivities/nutrition-for-the-child-with-sickle-cell-anemia

Boston Medical Center https://www.bmc.org/sites/default/files/About_Us/Features/Sickle_Cell_Disease_Treatment_at_BMC/field_Attachments/SickleCellDisease-EatingHealthy.pdf

Posted in Advocate, Awareness, Bone Health

VIM Pain Mgmt App from The Arthritis Foundation

Posted on by ChronicallyGratefulDebla

This is a really good app, it’s new released by the arthritis foundation just a couple weeks ago. 

It’s a great way to connect with others that understand what it’s like to live with pain. 

It provides tips to help ease the stress and anxiety that come with chronic pain. 

Discusses various treatments from diet to meditation, to acupuncture to prp and stem cell injections to joint replacement .

The app tries to help those living in pain have options to have a better quality of life. It helps track your pain so you can discuss this with your doctor or surgeon.

It also gives you ways to register to get connected with National and at Some point Local connect groups in your area . All this is free. Ypu can even link to the podcast. 

I am the Facilitator for the Boardman Ohio LIVE Yes Connect. I try to provide support, and patient education via information as well as guest speakers as well as group interaction. 

Right now we are on zoom, but will be at some point back face to face as well as remain on zoom also. I think zoom is good because you can attend right from your hone or work or pulled over in your can. 

That’s why I volunteer for the Arthritis Foundation, they provide so much to so many. 

Give it a try…. one of the best apps I have. 

If you use it. Use the same email as your arthritis.org email for Live Yes Connect. That way you can be up to date and linked to all great things the AF has to offer in one easy app. 

Wishing you all a pain free day

Deb

Posted in Awareness, Blessed, Chronic Pain, Grateful

Happy New Year

Posted on by ChronicallyGratefulDebla

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

Deb

http://www.ChronicallyGratefulDebla.com

avascularnecrosiseducationcom

Posted in Awareness

Dealing with Joint Pain in the Pandemic

Posted on by ChronicallyGratefulDebla

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

Please follow like and share to get updates on my latest posts

Wishing you love, good health and a pain free day

Love

Deb

https://flexitarianforlife.wordpress.com/

http://www.ChronicallyGratefulDebla.com

Posted in Awareness

All About Knee Pain Part 5 of 6

Posted on by ChronicallyGratefulDebla

Part 5 knee

Treatments

Conservative care

Many types of knee pain can be relieved and/or resolved with conservative treatments such as:

Rest When the knee is injured or is inflamed, as in bursitis, tendonitis or arthritis, it’s important to rest the joint and avoid overuse. That may mean keeping the knee straight (extended) or in positions that limit bending.

Ice/heat Applying ice or cold packs to the knee can reduce inflammation and swelling, especially after an injury. Once swelling is gone, heat may be used to help relax and loosen tissues – although ice is the primary treatment.

Pain relievers Over-the-counter anti-inflammatory medicines can help relieve knee pain, including ibuprofen (Advil®) and naproxen (Aleve®).

Weight loss Your doctor may recommend that you lose weight to reduce pressure on your knee.

Braces In general, knee braces wrap around the knee and leg and help limit unwanted movement while supporting the knee. They are commonly used when knee ligaments are weak, and help to keep the knee from “buckling.” Braces will provide support during healing, but are not a primary treatment for arthritic degeneration.

There is a variety of braces. Functional braces are designed to support knees that have suffered an impact-related injury. Rehabilitative braces provide support when recovering from a surgery or injury. Uploading/offloading braces are used by patients with arthritis and help to stabilize the knee when standing up or sitting down

Physical therapy

Once your doctor diagnoses the cause of your knee pain, physical therapy may be the next step. Physical therapists can show you specific exercise programs that will help you recover from the injury and decrease the pain you are experiencing. They also may demonstrate low-impact stretches and exercises that can strengthen muscles in your knee, improve stability and flexibility, and reduce pressure on the joint. They can advise you on helpful lowimpact aerobic exercises, such as swimming and cycling, that won’t aggravate your knee pain. Physical therapy also is an important part of recovery after knee surgery.

Injections

I personally am not a fan of these. I personally get more pain when o have had them. And they can lead to faster break down of bone tissue and can lead to Osteonecrosis.

Steroid (or more commonly known as cortisone) shots can be placed inside the knee to reduce pain and inflammation.

Another nonsurgical procedure that can provide relief from knee pain is viscosupplementation. Administered in the doctor’s office, this treatment involves injecting a lubricant into the knee. The filler lubricates and adds cushioning to the joint, allowing bones to move more easily and reducing friction.

In some cases, relief from viscosupplementation can last for months. It can be a viable, though short-term, solution for mild to moderate osteoarthritic knee pain.

Prp injections

Platelet-rich plasma (PRP) therapy uses injections of a concentration of a patient’s own platelets to accelerate the healing of injured tendons, ligaments, muscles and joints. In this way, PRP injections use each individual patient’s own healing system to improve musculoskeletal problems. I have had this and I had a good result. Healed no but a better outcome and mobility than I had.

Shown is prp injections
Posted in Awareness

All about Knee pain part 4 of 6

Posted on by ChronicallyGratefulDebla

 

Part 4 knees

How is knee pain diagnosed?

 

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.

 

img_2565

Posted in Awareness

All About Our Knees Part 3 of 6

Posted on by ChronicallyGratefulDebla

Part 3 knee

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.

Posted in Awareness

All About Our Knees Part 2

Posted on by ChronicallyGratefulDebla

Types of Pain

What are the different types of knee pain?

Knee pain has many causes. Some of the most common include:

Osteoarthritis

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

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

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.

Tendonitis

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.

Baker’s cyst

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.

Posted in Awareness

All About Our Knees Part 1 of a 6 part series.

Posted on by ChronicallyGratefulDebla

About the knee 1 of 6

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.
Posted in Awareness

Arthritis Pain Do’s and Don’ts

Posted on by ChronicallyGratefulDebla

Arthritis pain:

The Do’s and The don’ts

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.

Wishing you a pain free day

Deb

Posted in Advocate, Arthritis, Awareness, Meditation, Mindfulness, osteoarthritis, Osteonecrosis, Pain

How I Use Meditation and Palming To Help My Pain

Posted on by ChronicallyGratefulDebla

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

I am

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.

Meditation and Palming

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.

Here are the links I used and still use sometimes

I am – guided meditation by Wayne Dyer https://youtu.be/BoE4QjMiHys

Palming for relaxing and helping eyes

Posted in Awareness

What to do if you suddenly run out of energy-spoons when traveling

Posted on by ChronicallyGratefulDebla

I love to travel but when I do, I know when I get home I will be wiped out by fatigue for sometimes 2-3-4 days.

This little mini trip was no exception.

Fatigue can often be described in various ways. Sometimes it is described as feeling a lack of energy and motivation (both mental and physical).

I had the privilege of going to Washington DC the last week of February 2020.

I participated in rare disease week, spoke on Capitol Hill seen so many historical places and also participated in a focus group.

It really was an amazing trip.

It was also exhausting.

I pushed my body to the limit, correction beyond my limit. I walked far too many steps than I was used to. But ya know what I did it, I made it sure it was tiring but I made it.

And I would do it all over again.

Of course I am paying the price now as I was literally exhausted for 3 days after I got back home.

But I enjoyed every minute of it.

A few things also caused me to use up a lot of my saved energy or spoons

Example: On the last night in Washington DC after I attended a focus group , I wanted to go on a bus tour for like an hour or 2, see some monuments at night but I was tired

I called the consiere who said the trolly picks you up at the hotel and brings you back to the hotel. I was sold and went on a night tour, we went to MLK monument, Jefferson,Back to Capitol at night, the White House , Korean War vet and Vietnam memorial, Lincoln monument, Arlington cemetery and lastly the Iwo Jima memorial, one of out lasts stops.

I was feeling great tired yes but invigorated from this tour, a woman younger than me also on the tour who had MS lost her balance when she was walking to the Iwo Jima memorial her cane went flying she fell, and as she was going down she tried to grab onto me and this caused me and a young man to also lose balance and so I fell, and he did to but he kind of rolled.

I however hit the ground so hard knee first I thought I shattered it.

All I did was pray dear GOD protect me , please don’t let this be the way my trip ends.

Thankfully this happened at the end of the tour. I felt pain and numbness but I also felt my knee swelling fast.

The tour bus dropped me off at the Capitol Hilton

I hobbled to my room after the tour starving, ordered room service cleaned my knee which by now was the size of a grapefruit .

I was hurting scared and a bit pissed off, should I go to the ER? Do I just wait when I get home tomorrow?

I called the George Washington Hospital and was told they are full of flu patients would have at least a 6 hour wait but I could come in.

I chose to wait.

I don’t think the woman on the tour meant to do that. It’s a natural reaction to reach out and stop from falling.

I think I was also so tired I just couldn’t keep myself from falling. That’s what pissed me off.

All my energy just went down the drain. I was hurt exhausted and I mean I was hurt.

I probably should have went to the ER

I chose to tough it out. Hobbled and got 2 buckets full of ice and made my own ice packs from zip lock bags wash cloth and hair scrunchie.

Oh I needed energy and was totally depleted but I had to dig deep and get moving for that ice.

All that great mojo was gone in an instant.

We cannot store up extra energy or “spoons” to use later unfortunately so sometimes we have a tendency to over do it when we feel good. And then when shit happens it’s exhausting.

Room service came with my leg propped up , so I ate and went to bed. The pain was so intense I was worried how the hell was going to make it through the airport the next day.

People see you are doing ok and this can lead them to assumptions – Some people thinking your suddenly well because you had a few good days .

People just don’t realize how much pain a person may be in because it’s an invisible disability.

People also don’t realize that a few goods days is exhausting.

And when you get hurt and you already suffer from chronic pain I swear it’s intensified 10 fold.

I’m usually a happy person and pain or no pain I am grateful that I am alive and can move.

That night I did all I could not to cry.

One thing pain has taught me is how to deal with pain.

I wish I didn’t have pain I hate it because pain is more than an occasional visitor in my body it’s more like a permanent unwelcome tenant.

Every time I feel a bit better something happens and the flipping pain is back all over again.

Most people have no idea what living with chronic pain is like.

I used to get offended when people would not recognize chronic joint pain as a disability.

I would love to see many of those who think that oh joint pain is no big deal do what I do in a day with the level of pain I have and still be as happy as I am.

Because I am happy, I just have to pace myself.

My life is all about pacing.

This is because everything I do cook, clean, sleep, walk, blog, travel, advocate,it all takes time. This gradual approach to every aspect of my life is not only about enlightenment or mindfulness.

It is about pain. Or more specifically, trying minimize it. Minimizing it is the key because I’ve learned it just can’t be avoided, at least not entirely, no matter my effort.

So take those spoons and energy and live your best life . You cannot store spoons but you can learn what to do when your spoons run out .

And remember rest even when your on vacation, eat well so you can be strong and hopefully you come home in the same shape as when you left.

It’s been a week since I’ve been home knee still swollen like a grapefruit

I did ho see my ortho and had xrays. I have a bad bone bruise and a lot of soft tissue swelling

It’s gonna take 4-6 at least I was told weeks and I hope it is back to where it was before the fall.

I’ll keep you updated

Please send positive vibes

Thanks

Deb

Also if you don’t know about spoon theory here is a good link

https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1

Posted in Awareness

Rare Week In Washington DC

Posted on by ChronicallyGratefulDebla

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.

Posted in Awareness

What Really Helps Arthritis

Posted on by ChronicallyGratefulDebla

If you’re asking yourself- what can help my arthritis, I will try to clear up a few of the most popular misconceptions for you.

Here’s are a list of the most common questions about Arthritis and the facts about what can help arthritis pain.

1. Fact or Fiction? There is no cure for arthritis

True. There is no cure for arthritis; however, the discomfort and pain can be managed through medication, heat, splints, braces, adaptive devices and learning new ways to accomplish everyday tasks and activities.

2. Fact or Fiction? The weather makes a difference in how my joints feel

Fact. There’s a reason people move to Arizona. Dry, warm weather reduces joint pain. When the humidity is high and barometric pressure is low, particularly just before a storm, if you have arthritis you may feel increased pain or stiffness. If you live in a hot, humid climate, a dehumidifier in your home can help.  Most air conditioning systems also help reduce humidity, run it during the day and even overnight to help you sleep comfortably.

3. Fact or Fiction? My diet makes a difference in my arthritis symptoms and how I feel

Fact. Excess weight puts more stress on your joints. Keeping your weight in check helps protect them. Eating a balanced diet rich in fruits and vegetables and a mix of grains and proteins makes good sense for everyone.

4. Fact or Fiction? I can’t exercise because I have arthritis

Fiction. Movement, including gently stretching, is important to increase strength and flexibility. Exercising also reduces the pain and stiffness in your joints. I love my recumbent bike.

You just have to think about how you work out. If running aggravates the arthritis in your knees and makes them ache, switch to a less intense and less weight-bearing exercise like swimming, biking or yoga.

Always consult with your health care provider before starting an exercise program.

5. Fact or Fiction? Nothing will reduce the pain of my arthritis

Fiction. Heat, ice, prescription and non-prescription medicines, topical ointments and splints can all help alleviate the pain and swelling associated with arthritis.

Cold and heat can both help when dealing with arthritis pain. Using heat in the morning relaxes muscles and reduces stiffness.

Using ice at night lessens joint inflammation for most people.

I personally like the heat from thermacare heat wraps. My joints just don’t tolerate cold.

Over-the-counter medications and prescription drugs can also be very beneficial in helping to control arthritis pain.

Non-prescription medications, including aspirin, ibuprofen, and acetaminophen, help control pain and swelling. But everyone can’t take them. Example you cannot take NSAIDS if you have had bariatric surgery. So always talk to your doctor.

Prescription medications, like COX-2 inhibitors, anti-TNF compounds, steroids, and disease-modifying anti-rheumatic drugs (DMARDs) help reduce swelling and pain and can prevent further damage. However steroids are known to cause Avascular Necrosis- Osteonecrosis

Speak with your health care provider or pharmacist to make sure you are taking the right medication, even nonprescription drugs can be harmful or ineffective if you are not taking them correctly or if they may cause an interaction with your other medications