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.
Embracing flexibility instead of rigidity for those of us living with chronic joint pain.
In the study, patients reported that key components of pacing themselves included:
Breaking down tasks into mini tasks
Saying ‘no’ or learning to
Being kind to themselves self care is a must
Using rest breaks
Doing something each day
Developing a structure or plan
Gradually building up activities – people who run marathons don’t just run marathons: they train and pace themselves- we need to pace our self –
Stop feeling guilty if you need to rest
Respect your limits
Love the body you have
Don’t be so proud as to not get that handicap placard or license plate. Not all disabilities are visible
People chronic conditions like osteonecrosis, osteoarthritis, ra, fibromyalgia etc, We tend to feel the Zip and then the Blah: if we do too much in one day, even if they feel okay at the moment. For example, I woke up with a little or a lot more energy and without as much pain, and I try to get all tasks done in one day….. only to pay for it in pain days later. So we must learn to pace ourselves
Tip
Pacing isn’t always about avoiding doing too much. It’s also about staying out of a cycle of doing too little or nothing at all. We must keep moving. And figuring out how to stay physically active is one of ways we can promote self-care, and reduce stress as well.
Understanding more about the underlying causes of pain can help improve treatments and alleviate suffering
Each September, pain specialists and advocates across the country raise awareness about issues related to chronic pain during National Pain Awareness Month. Did you know that chronic pain affects more than 100 million Americans. that’s 1/3 of the USA population living with some form of pain.
That to me seems unacceptable. We have in 2021 rejenerative medicine and various treatment options from prolotherapy to prp to A2M to stem cell.
Plus we have many biologics and lets not forget there are still the traditional pain pill that help – yet so many doctors seem to not offer any longer thanks to the US government’s campaign to stop them it’s seems and a special thanks to all those who are addicted to opioids like heroine,fentanyl .
That may sound cruel, but you know there are many responsible people that can take a pain pill and not become addicted.
I also don’t like the US government to interfere with my private doctor patient relationship. The government has no business in my opinion telling doctors what they should be doing.
Understanding more about the underlying causes of pain can help improve treatments and alleviate suffering. Johns Hopkins researchers are working on everything from the molecular causes of pain to the latest advances in pain treatment.
What You Need to Know
Nearly 100 million Americans experience chronic pain —more than those who have diabetes, heart disease and cancer combined.
Pain is a warning sign that indicates a problem that needs attention.
Pain starts in receptor nerve cells located beneath the skin and in organs throughout the body.
Living with pain can be debilitating and adversely affect everyday life.
Arthritis
Arthritis refers to over 100 different conditions ranging from autoimmune disease to normal joint inflammation.
Back Pain
According to the National Institutes of Health, eight out of ten people will have back pain at some time in their life.
Headaches
Millions of people get crippling headaches, and there are dozens of different headache types — but receiving the right diagnosis is key to getting the right treatment.
Find a Pain Specialist
You don’t have to live through your pain alone. There are pain centers, programs, and clinics that are made up of teams of specialists who aim to ease your pain, and allow you to live in as much comfort as possible.
Wishing you all a happy blessed and pain free day.
Working and Studying from Home When You Live With Arthritis
When you get into a car to drive it for the first time, what do you do? You make sure you adjust the seat so you can reach the gas and brake pedals, you adjust rear view and side mirrors see the road easily
We do this to make driving safer and feel more comfortable. When you work from home and or go to school at home we need to make adjustments so we can be comfortable. Especially if living with joint pain.
Tips for Arranging a Healthy Work – Study Space
Working or studying from home during the coronavirus pandemic can put new strains on your joints. Use these expert tips to adjust any workspace to fit your needs.
Being still for long periods and doing repetitive work tasks that fatigue the same muscles over and over can strain the neck, shoulders, back, hands and wrists, and even the hips knees and legs. Here’s how we can adjust our work or study space help to avoid strain.
Move often – Get up and walk around every 20 to 30 minutes and make a habit of adjusting your position frequently. “Shifting positions and moving around are the best ways to combat pain, stiffness and fatigue,” I try to every 20-30 minutes stand up stretch and walk or march in place for 3-5 minutes.
Place your computer monitor so you don’t have to look up – Tilting your head to view a too-high screen strains the neck. Eyes should be level with the top of the screen (oversize monitors are exceptions). The center should be 15 degrees below your line of sight and approximately an arm’s length away.
Stop bending your neck to text – Tilting your head down leads to text neck, its from leaning forward to long this can cause shoulder and neck pain and headaches. So, extend that phone out in front of you
Place your feet firmly on the floor – Use a footrest if your feet don’t touch the floor.
Support your arms – Be sure your chair’s armrests are adjustable. Set them so your upper and lower arm form a 90-degree angle and you can keep your wrists straight and fingers relaxed.
Keep your main work and study essentials within arm’s reach – Your books, pens, phone, planner, and whatever other tools you use many times during the day should be within arm’s reach. This stops you from leaning forward or contorting your body into awkward postures to reach them.
Find the right size chair – You should have at least a one-inch gap between the edge of the seat and the backs of your knees when sitting back in the chair. Its seat should be at least an inch wider than your hips and thighs. The chair’s back should be wide enough for your back, but not so wide it restricts arm movements. Try before you buy. Visit stores and sit in many chairs before selecting one.
Pick a chair that swivels and rolls – Choose a swivel chair with a five-point base for stability and wheels for ease of movement.
Raise your laptop – Laptop risers help bring the screen closer to eye level. You’ll want a separate keyboard that can be at the proper height for that task.
Don’t work or study in bed – Not only will this wreak havoc on your posture and increase your risk for joint and back pain, it can also interfere with your sleep.
Stretch Often and Take a Break Every Hour Frequent breaks are crucial in this time. Take a break every hour to give you the mental refocus needed to complete your tasks.
Stretching is encouraged to increase blood flow, decrease stiff muscles, reset postural habits and prevent chronic issues like back pain. See in references below.
Use a headset – This will help you bypass the stress to the neck and shoulders that can come from repeatedly reaching for the phone or cradling it between the ear and shoulder.
Try ergonomic keyboards and mice – These are designed to keep hands and forearms in a more neutral position. Vertical mice, for example, orient and support your hand in an upright, neutral position. They may be useful if you have carpal tunnel syndrome – a compression of the carpal nerve in the wrist that may sometimes be caused by repetitive hand and finger motions
I was so sad to see the rudeness of some people saying that Valerie Bertinelli gained weight-needed to lose weight etc…
You would think by now we would be past the days when a woman’s body was her ownand not be subjected to trolls and ridicule but no sadly we are not. Some feel the need to comment on, judge, shame others for how they look how small or big they are.
They are the exact reason why so many women young women and little girls and boy and grown men have a complex and isn’t it time we just stop and mind our own damn business!!
Do people follow others just to be rude and shame them?
Have they nothing better to do with their sad little lives than pick on others?
We can always hope that some day people will just be kind and remember if you dont have anything nice to say , then just be quiet.
This week Valerie Bertinelli, who, thanks to the internet, has become the latest victim to the trolls .
Who are we as a society to feel the need to constantly criticize and give advice, opinions especially unsolicited advice to others.
Did this person that commented on her weight not realize that she may be struggling in some way? I believed she helped to take care of her mom until she passed away and then buried her mom in 2019 and then her ex husband , friend and father to her son Eddie Van Halen died in 2020. That is a lot of sadness and loss in a short amount of time. Trying to be strong for her family and for the public and paparazzi is not easy I’m sure. Grief and Sadness can take its toll and everyone processes things differently and its not our job to point out others flaws.
I understand exactly where she is coming from. And I applaud her for sticking up for herself. I appreciate when she said when she sees someone that has gained weight- she feels as if they are going through something.
Matthew 7 :: NIV. “Do not judge, or you too will be judged. For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you.
John 13:34 says So now I am giving you a new commandment: Love each other. Just as I have loved you, you should love each other.
Why cant we just be kind? Is being hateful and angry that easy ? but to be kind is it really that hard? or are we just so full of ourselves we cannot see that we are hurting someone else’s feelings.
I love what Valerie said – ” when you see someone that put some weight on , they must be going through some things”
She is so right…… being fat and being thin and then fat again I can tell you I never wanted to get fat…I didnt enjoy being fat, its no easy to just lose weight. So I get where she is coming from.
My first marriage was abusive-I ate to bury my feelings of self ;loathe , shame, sadness, I was mentally and physically as well as financially abused in my 1st marriage, so I felt like a failure,and unworthy of love. I mean if the person who says they love you beats you and is mentally cruel to you it must me me right??? WRONG, but I took me years to recognize this and get out. Point is I was going through something and ate my feelings. When I went to my church for guidance I was shamed for wanting a divorce….and shamed by others for staying.
My dad died in 1988 I was 25, we were close. The first man I ever loved and he was a great man, a really good dad. My dad the man I loved , argued with, got advice from, is now gone from my life forever. My mother was lost with out him. They were sweethearts from a young age and my dad died at 56.
I now had to step up and help take over the books by managing and balancing the books of the small family magazine business my parents had; at least until my mom decided what to do with it. on top of going through a long dragged out divorce. So I again stuffed my feelings. I didnt gain weight but I did eat my feelings. My mom sold the 3 story 4 bedroom home and wanted to go live in an apartment asked if I was ok with that or did I want the house,
I wanted what was best for her, sell the house so her and my gram could have less expenses. I would have liked to see her go to a smaller home, but I understand why she did this…it was cheaper to go to an all utilities included apartment, sell the house and lower all her expenses
1998-1999 the years of diagnosis for me, my hypothyroidism is now Hashimoto Thyroiditis and add osteoarthritis in my knees , right hand and arthritis in my left hand right wrist back…all this and under 40
2000 my mom suddenly passed away and I was stuck to go through 60 plus years of paperwork, figuring out what to do with her things like sofa, chars, clothes etc….while my FT job harassed me to get back to work after my 3 day bereavement, I asked if I could take my vacation to take care of all her things etc…. was told no, again explained the situation I’m an only child, no help have limited time or I will need to pay her rent for February as she passed away January 26.2000. Again was told no. In fact I was told to turn n my management keys if I wasn’t back buy January 30,2000.
So I said screw it, turned in my keys and filed a complaint with corporate and filed for unemployment and I won. But again all that stress and extra stress was followed by eating to bury my feeling, while I buried my mother. Over 1 year I gained 19 lbs.
In 2001 I was rear ended while at a stop sign hit and pushed into the car in front of me that was also stopped. I had neack and shoulder injuries that kept me in pain, and unable to work. I ate my feelings and yep gained about 45 lbs in 2 years on top of the 19 I gained when my mom died.-64 lbs is a lot on someone 5’1. After I had my shoulder repaired, i tried to lose weight……not happening. I tried for years didn’t gain and lost the same 15 lbs over and over.
Time passed I got used to being fat and felt horrible about it everyday, my husband never said anything bad to me but i always wondered what was he thinking his once 110 lb wife now 180 lb. you will rarely see me in photos in fact try to find one of me from 2005 until 2018… it will be rare and only for certain people.
2013 i tried again to lose weight started exercising, it was hard on all my bones, I was actually dropping a few lbs exercising to videos and walking, I felt this sudden stabbing hot poker pain in my right knee, it almost took me to the floor…..called my doctor had to stay off feet for a couple weeks and then mri shown I tore my medial meniscus and besides that and osteoarthritis I can add osteonecrosis in the right knee as well.
COME ON ALREADY…….will this shit ever end!!! I lose 15 lbs and then get injured and yep……you guessed it gained it back plus 15 more….
now in 2017 I am the biggest I have ever been 291 lbs
You see people are not wanting to be fat…… as Valerie stated people are usually going through something
I am trying to lose weight and have lost about 80-90 lbs over 3 years….but I still have a way to go and it is NOT easy……
So please when you see someone fat or thick or too skinny dont judge them and please dont tell them what they need……..WE KNOW
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.
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
Family Health & Fitness Day will be held on June 12, 2021! Celebrated the second Saturday in June each year, this special day promotes the importance of staying fit and getting outside the entire family!!
The day promotes family involvement in physical activity
When families strive to be healthy together, the success rate increases.
Get out and play as a family. It’s important to do something physical every day. Whether the family goes for a walk, throws a Frisbee, or plays with the dogs, get the heart rate up. Another thing to do is learn portion sizes. Then go through the house and reduce or eliminate the unhealthy snacks in the house. Replace them with fruits and vegetables. Start cooking together. Aim for at least one meal week and work up to cooking every day together.
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.
If you have a low back problem and you’ve been told you have spondylolisthesis, you should learn all you can about it, and the simple measures you can take to protect your low back health.
I have had a back problem since I was 12 when I fell during track practice in jr high school, my foot actually got caught up on a hurdle and I landed on my tailbone.
It didn’t phase me much as a kid, it became really bothersome in my 20s which was in the 1980s and it really seemed to get worse in 2001 after I was rear ended and then pushed into the car in front of me while I was sitting at a red light.
Throughout the years I did what doctors told me, try this and that here do this, no do that some doctors were just rude and just thought because I was in my 20s in the 1980s I was looking for pills. I hate pills. None of them listened to what I was saying.
Those are the doctors I fired. How dare they assume that because of my age I was a drug seeker.
I mean they could have at least gave me an X-ray or MRI of my back they just assumed ……and I was dismissed or offered a cortisone shot and if I refused which I did I was ignored and called a non compliant patient. I swear this went on for at least a year or two.
Also after my car accident it got to where I could hardly hold a cup without it falling out of my hand.
I thought the problem was me. I thought maybe I am not explaining myself or my symptoms right.
If only I could just find the right combination of words, maybe then doctors would understand and listen and not think I am a pill seeker and provide me with the treatment I needed. I’m just asking to look at it take an X-RAY or an MRI DO SOMETHING!
I didn’t want any damn pill, and I sure as hell didn’t want a short of cortisone. I rarely took an Advil let alone any other pill.
Pills always seemed to have more complications connected to them then they were worth.
Yes I was one of the nerds that would read any inserts, or talk to a pharmacist about any meds and often left without the pills prescribed because often the side effects were not worth it at the time.
In the 1980s I was a young mom who didn’t wanted to feel in the fog, I drove her to school, dance class and just would never chance the effect of a pill to kill my day…..plus my 1st husband was abusive so I had to be on guard at all times.
But that’s a story for another time.
When I finally went to a doctor that actually listened to me I was thrilled she was an Osteopath she gave me exercises that would help the back and muscles, she sent me for an x-ray had me walk and said my gait was off so I got and insert for my shoe that she made foe me free out of foam, she also told me my one leg was 1/2 inch different in length so she made me an insert for heal 1/4 inch thick dense foam, it helped for awhile but didn’t take away all my pain.
I was sad when she moved to another state and she referred me to a PT.
For years my pain was improved but not gone, I followed and completed my exercises daily or a few times a week as I was told by my PT was told it was most likely arthritis , then osteoarthritis but one day in 2005 I was really hurting and my Doctor scheduled me for an MRI vs X-ray as I was having more and more pain.
I was told I most definitely had osteoarthritis but little did I know I had something worse that I didn’t find out for years later, even though it was written in my chart.
I actually had something called Spondylolysis in My L5 S1 area and also above it.
What is spondylolysis?
A spinal disorder in which a bone (vertebra) slips forward onto the bone below it.
Spondylolisthesis risk factors include sports that put stress on the bones in the lower back, such as gymnastics , track and field and football. Genetics may put some people at increased risk.
I was also diagnosed with Spondylolysis – Spondylolysis. Pars defect. Stress fracture. These three terms are used interchangeably, all referring to the same condition. Spondylolysis is a stress fracture through the pars interarticularis of the lumbar vertebrae. The pars interarticularis is a thin bone segment joining two vertebrae. It is the most likely area to be affected by repetitive stress. This condition is fairly common and is found in one out of every 20 people.
What are the symptoms of spondylolysis?
Spondylolysis doesn’t always have symptoms. When it does, the only symptom is usually back pain.
The pain often gets worse with activity and sport, and is more notable when bending backward.
Generally, the pain doesn’t interfere with everyday activities. If it persists, it is recommended to seek medical attention.
It’s very bothersome when I walk more than say a mile. It also hurts when the weather changes.
What are the risk factors for spondylolysis?
Being human and walking upright is the most basic risk factor for spondylolysis.
The natural inward curvature of the lower back puts stress on the pars interarticularis.
Certain sports that involve excessive or repetitive bending backward may increase the risk of spondylolysis.
Examples include gymnastics, football and soccer.
Young athletes may sometimes develop spondylolysis as a result of over use and hyperextension of the lower back. Genetics could also be a risk factor for some people.;
Spondylolysis Diagnosis
If you have long-lasting, localized low-back pain, it could be due to spondylolysis.
An X-ray is sometimes sufficient to defect a stress fracture. However, if pain persists despite rest and physical therapy, additional imaging may be necessary.
Your doctor may need to order an MRI, a CT scan or SPECT scan of spine for a definitive diagnosis.
Spondylolysis Treatment
Spondylolysis treatment focuses on managing the pain and helping you return to your daily activities. This condition doesn’t typically put you at risk for spinal cord injury or nerve damage.
Depending on the degree of pain, treatment options include:
Rest/break from sports
Nonsteroidal anti-inflammatory drugs
Physical therapy for muscle strengthening and general conditioning
A lumbar brace
Surgery to repair the fracture is rarely needed, as the pain is expected to fade over time in most cases.
Surgery for Spondylolysis
Surgery may sometimes be an option for adolescents with lumbar spondylolysis. The fracture can be repaired by using a strong titanium screw. This surgery is done by making a 2- to 3-inch incision in the middle of the lower back. The screw is placed to secure the two sides of the fracture together, providing some compression across the area. Then a bone graft (a piece of bone from elsewhere in the body) could be used to further support the repair.
The surgery takes three hours, followed by two or three days in the hospital for recovery.
I will pass on any surgery unless it’s a must!!!
Your doctor may also recommend a surgical procedure such as spinal fusion if it’s found that spondylolysis has caused your vertebra to slip forward. This slippage is called spondylolisthesis, which is a different but related condition.
Mine has slipped forward and yes it’s a nagging constant all day just about every day pain.
Spondylolisthesis Is Not The Same As A Slipped Disc—But Does Involve Slippage
Slippage is a key element of spondylolisthesis.
They like using the word “slippage” because it conjures up a visual image of what’s happening in the body. He explains, “When you have spondylolisthesis, one of the vertebrae—the bones that make up your spine—slips out of place over another.”
However, it’s not the same thing as a slipped disc.
It’s gotten to the point that, I have lived with so much pain all the time the average person would be in agony and I am still doing what I can throughout my day. I would probably try to run a marathon if I had a totally painful day.
Back in August 2020 I was taken by ambulance to the ER m, because I had such a sudden, out of the blue pain in my back,side, and right chest area it caused me to start to hyperventilate and I was so afraid. How I I be sitting laughing at a movie and then bam riding in an ambulance
Thank God my husband was home as I could not even speak the pain was so incredibly intense. My husband got me a brown paper bag so I could try and focus on my breathing. The ambulance arrived and immediately got me on the gurney hooked up to heart monitor…..I was really afraid…was I having a heart attack?
When I got to the ER they got me hooked up on their heart monitors started to take blood every few hours, to check my enzymes to see if maybe I was having a heart attack, then they started doing every test they could to rule out heart attack, blood clots etc…. Was given medications like morphine and later dilaudid to help the crazy intense pain I had. The pain was not easing up.
They admitted me for 24 hrs for observation and came up with the diagnosis of panic attack. What did they do to help these panic attacks? Nothing.
This pain I didn’t think was associated with a panic attack, but what do I know.
They tested me for heart issues , deep vein thrombosis and a pulmonary embolism. It was very uncomfortable as my arms had to be over my head. As they went to inject the contract in the spec area of IV it comes out at a high rate of speed well as it came out, it broke the plastic piece and the contrast went in my hair on my gown so we had to do another.
I felt as if I kept passing out from the pain if that makes any sense. I find out that my heart and lungs were good thank God.
The next day they took me for a Stress Test with dye and echo and they asked if I wanted to try and walk jog or because I have joint issues did I want them to just medically speed my heart and I would lie flat. I chose to walk jog because I think feeling no control of my heart rate would freak me out a bit.
I went over 6 minutes and felt great! I impressed myself. In fact they also said I did very good. So again no heart issues.
They diagnosed me as having a panic attack. I was discharged and yet given nothing in case this happens Bahrain, which they were clear in telling me it’s very possible.
I noticed that over the next week I was a bit shorter of breath than normal: When my husband and I go walking I can tell and I feel more fatigued. Maybe I am worried it will happen again. So I have to find some other way to think besides worrying about something.
It’s interfering with my studying real estate. I cannot concentrate for more than 10-15 minutes at a time and I feel like I am all over the place. I just feel weird.
Fast forward 7 months later, feel great a bit anxious here and there but no more hospital trips…….until
01 March 2021 here we go again can’t breathe chest pain back pain side pain….I was just eating dinner and bam here we go again how can you just get a panic attack when laughing at dinner? This feels worse but different it’s stabbing sides back chest .
What is happening!!
2021 has been a physically painful year for me. I go from 2019 no pain and. most of 2020 my health being really good to 2021 being physically and mentally brutal…
This house doctor was an ass to me.!He thought I was a drug seeker and refused to prescribe Tylenol plain Tylenol no codeine just Tylenol. Then he called me fat and said my pain is skeletal and lose some weight.
I told him do NOT talk to me like that. Told him over 2 years I have lost 78-80 lbs and although I live with joint pain this is different. I asked him to check my gallbladder and he refused. He then discharged me and I called hospital administrator and disputed the discharge.
So the next day this doctor looked pissed that I was still there. Again I told him check my gallbladder. He finally did and sure enough I was right.
He never apologized to me and I did report him to the hospital administrator.
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.
Can you imagine how empowered our female ancestors felt in 1920?
Finally given the right to vote after fighting before it for so long.
I know the I feeling I get when I vote whether it’s a major or minor election.
The sense of pride and empowerment and yet humbled that my voice , all our voices will be heard and count.
Women were always told they belonged at home , in the kitchen with no voice allowing their husbands to speak for them.
I was lucky enough to get to go to Washington D.C in February 2020 and speak on Capital Hill for Rare Week 2020.
I stayed a few days and visited all the Smithsonian Centers
It was emotional for me to see how many brave women fought for the right to vote. Just think it’s only been 100 years. And for many African American women it’s only been only 35-40 years because even thought the ratification of the 19th Amendment happened in 1920. Not all states allowed blacks to vote.
The 19th Amendment did not eliminate the state laws that operated to keep Black Americans from the polls via poll taxes and literacy tests nor did the 19th Amendment address violence or lynching. Some African-American women will vote with the 19th Amendment. Some are already voting in California, New York and Illinois where state governments have authorized women’s votes. But many Black women faced the beginning of a new movement for voting rights in the summer of 1920, and it’s a struggle they will wage alone because now the organizations that had led the movement for women’s suffrage were then disbanding.
Voting today is happening because of our strong grandmothers great grandmothers and great great grandmothers who stood up to others holding them back
They were jailed , beaten when all because they voiced their opinions all for wanting to be included.
People wanted to silence them because of their own fears. ‘The Night of terror’: The suffragists who were beaten and tortured for seeking the vote. The women were clubbed, beaten and tortured by the guards at the Occoquan Workhouse. … The suffragists dubbed their treatment Nov. 14, 1917, as the “Night of Terror,” and it helped galvanize public support of the suffrage movement.
These brave selfless independent women were thinking and fighting for the future generations of women. And so today it is our duty to honor their fight and go and vote for what ever candidate you identify with and their policies.
Personally I don’t care who you vote for. Just vote.
We needed their example and because of the suffragists we women all over this great nation get to vote.
They ( men and many women alike) didn’t think women should be involved in politics.
We women have come a long way and yet still have a long way to go.
No matter if we agree or disagree on whom to vote for the important thing is to vote.
It’s the most and least we can do for our country.
To all these young women who get to vote for the first time today co congratulations and thank you for doing your part.
The male guards at the Northern Virginia prison manacled the party’s co-founder Lucy Burns by her hands to the bars above her cell and forced her to stand all night. Dorothy Day, who would later establish the Catholic Worker houses, had her arm twisted behind her back and was slammed twice over the back of an iron bench.
The guards threw suffragist Dora Lewis into a dark cell and smashed her head against an iron bed, knocking her out. Lewis’s cellmate, Alice Cosu, believing Lewis dead, suffered a heart attack and was denied medical care until the next morning.
The suffragists dubbed their treatment Nov. 14, 1917, as the “Night of Terror,” and it helped galvanize public support of the suffrage movement.
