Six months ago I was diagnosed with Hypogammaglobulinemia, an immune disorder where the body doesn’t create enough antibodies to fight off disease. The Immunologist ran a comprehensive round of labs and found I have low antibodies for all types of Pneumonia except one. He wanted me to get a Pneumonia vaccine now even though they are normally not given until age 65.

My General Practitioner has now given me both rounds of the vaccine. The pneumonia vaccine is a two-prong, one-shot then another eight weeks later. While there she asked if I had Chicken Pox as a child. Yes, I had Chicken Pox so she suggested I get a Shingles vaccine once we completed the Pneumonia vaccines. I go back after September 17th to get my Flu and Shingles round one shot. Yes, Shingles is also a two-round shot. 

Shingles is another vaccine that isn’t normally talked about until your 65 but with my weekend immune system, it is better safe than sorry by waiting. Shingles are terrible and extremely painful. The Chicken Pox virus lives in your body and can reactivate by becoming Shingles later in life.

I already knew about the vaccinations because of my grandparents but had not thought about needing them at 55 years versus 65 years old.

Talk with your doctor about your risk for Pneumonia, it was a simple lab test and it clearly showed my body could not fight off all but one type. Who knew there were different types of Pneumonia?

 

The Washington Post

By Amber Leventry 

Feb. 17, 2020 at 8:02 a.m. CST

As a parent who is also a survivor of incest, I want nothing more than to protect my children from sexual violence. I constantly wonder what it will take to improve, if not end, rape culture in our society.

Every 73 seconds, an American is sexually assaulted, according to the Rape, Abuse and Incest National Network, or RAINN. According to the Centers for Disease Control and Prevention, nearly 1 in 5 women and 1 in 38 men have experienced completed or attempted rape — forced or coerced vaginal, anal or oral sex. Rape can happen at the hands of known or unknown assailants, including spouses or significant others.

My oldest daughter is 9, and my twins — a boy and a girl — are 6. They are not too young to be educated about sexual health and what healthy relationships look and feel like. We refer to their body parts with the appropriate names; we talk about hygiene, privacy and boundaries. I have taught them about tricky people, and the thing we probably talk more about than anything else is consent.ADADVERTISING

At the core of its meaning, consent is about permission or an agreement to give and take something. When we use the word “consent,” we often use it in a sexual context because when someone is raped, permission has not been given, and something incredibly personal has been taken.

My goal is to protect my children, but I also have a responsibility to send them into the world with respect for all bodies and an understanding of how consent works and why it is important. The nuances of communicating our wants and then hearing the response or seeing it in a person’s body language during nonsexual situations are lessons we can teach our kids now so that later, when the stakes are higher, they already have the tools to build safe sexual relationships.

I was in the kitchen one evening and could hear my kids trading Pokémon cards. My 9-year-old daughter asked her 6-year-old brother if he would give up one of his cards for one she was offering. He hesitated and told her he wasn’t sure. She tried again. He considered but was reluctant. She tried to negotiate. He said no. She continued to offer him cards he might like, but he clearly didn’t want to trade. She was badgering him. I knew it was making him uncomfortable because he wanted to please her, but he didn’t want to say yes; he was saying no but, in my daughter’s opinion, not enthusiastically enough.AD

The situation was making me uncomfortable, too, so I stepped in. I praised my son for using his voice to communicate what he didn’t want. I told my daughter that she needed to walk away from the situation. He was telling her and showing her that he didn’t want to trade. I explained that her desires should never be forced onto someone else.

I reminded my daughter of the phrase “You asked, I/she/he/they answered.” This is meant to eliminate nagging when my kids want me to change my mind, and it helps me teach them that they can’t always get what they want. The phrase is a lesson in consent. “You asked for the card, he said no.”

Lexx Brown-James, a licensed marriage and family therapist, certified sex educator and author of “These are My Eyes, This is My Nose, This is My Vulva, These are My Toes,” is also a parent navigating these issues. “When we teach consent to our children — across the gender spectrum — we also have to teach and model respect, [but] respect has changed so much even throughout my own lifetime,” she says. Brown-James grew up in the South and was taught to obey authority without question, but she points out that the definition of respect has changed. It can be a shared goal of treating others how we would want to be treated, no matter the age or power difference, she says.

Middle schools enter a new era in sex ed: Teaching 13-year-olds about consent

Brown-James says it is important to empower our children to say yes as well as no, and to make them feel like they will be heard. But kids can’t be in control all of the time, so it’s necessary for adults to model informed consent. Brown-James gives the example of a child going to the dentist. It’s scary, and a child may not want to go, but healthy teeth are important. She suggests giving power to a child’s voice even in those situations. Let them choose the side of the mouth the dentist can look at first. Allow the child to say when they need a break. And be sure you or the dentist check in to see how the child is doing.AD

Consent also needs to be visible and identified in everyday acts. Asking kids if we can hug them, tickle them or take a bite of their food are great ways to model patterns of asking before taking and then showing them that their voice has power. Notice how none of the situations discussed so far have anything to do with sex? This is important.

I emphasize “no means no” and “stop means stop” with my kids, but it’s not always easy. If something hurts or makes us uncomfortable, telling someone to stop is still confrontational. We may want to keep the peace rather than face another person’s negative reactions. Although I hope my kids will speak up for themselves, I also want them to be able to interpret the other side of the no. If they are ever in a situation where consent is not clear through words, I want my kids to learn how to read body language so they can safely stop an action that is making someone uncomfortable.

Joe Navarro, 25-year FBI veteran and author of “What Every Body is Saying” and “Louder Than Words,” writes that parents should start to teach about body language as soon as their children can understand simple instructions. He emphasizes that all nonverbal communication has meaning and that body language conveys our emotions. Navarro encourages parents to remind children that learning to read body language is a way to make people comfortable.AD

But what happens when consent is given, but with hesitation? Not all consent is enthusiastic, so Brown-James refers back to teaching kids how to check in. Kids provide plenty of teachable moments for this when they want to do something but are nervous. Brown-James uses an example of her daughter wanting to pet a dog but feeling anxious. She said yes, but her body language did not convey excitement. By using a slow, check-in-as-you-go approach, Brown-James’s daughter got close to the dog, decided where and when she wanted to pet the dog, then finally touched the dog and was ecstatic. With each step, Brown-James asked whether her daughter felt okay.

The work and mindfulness necessary to teach these nuances are worth the initial stumbling points or emotional labor involved. Rape culture will not improve with a one-time talk at puberty. A foundation of empowerment, respect and thoughtfulness for others needs to be put in place early so kids’ intuition can guide them, whether because someone has touched them inappropriately or because they are navigating a new physical relationship as a teen.

Before our kids become teenagers, though, they need the skills to say no for themselves and for others if a situation doesn’t feel right. Deliberate, ongoing and forward-thinking conversations about consent in nonsexual situations will help them navigate higher-stakes sexual decisions when they are older.AD

Amber Leventry is a writer and advocate who lives in Vermont. They run Family Rhetoric by Amber Leventry, a Facebook page devoted to advocating for LGBTQ families one story at a time. Follow them on Twitter and Instagram@amberleventry.

Sign up here for our newsletter. We tweet @On Parenting and have a Facebook discussion page about parenting and working. Join us.

More reading:

Let’s tell kids what they can do online, instead of what they can’t do

Obstetric violence is a real problem. Evelyn Yang’s experience is just one example.

Why you shouldn’t censor your teen’s reading (even the sex and violence)9 Comments

If your only choice is seeing a General Practitioner for chronic or mental illness, you will have to take on the additional responsibility to make sure you’re getting the best healthcare. What you can’t expect is a General Practitioner to be a one-stop shop, they have 15 minutes per patient and treat the most common illnesses. Once your 15 minutes is up, you have to save questions for the next appointment. And while it may be particularly frustrating to have to leave, it can help you to get into the right mindset for research.

We’re not talking about Dr Google here (which can be a very dangerous rabbit hole to go down), but there can be changes in lifestyle and pain management that may work. It’s not a one size fits all approach, but there are remedies like CBD cream that could work (the https://www.health.com/condition/pain/best-cbd-cream-for-pain is a handy resource) or it could be about focusing on mindfulness or more natural techniques like embracing the cold, as has been popularized by people like Wim Hof in recent years. But these approaches shouldn’t replace the help a General Practitioner can provide, just as long as you go into each appointment prepared.    

If seeing a General Practitioner for all your chronic illnesses, go into each meeting expecting three questions to get answered, if the conversation doesn’t go off track. Go prepared with questions, concerns or medicine issues but don’t expect more than 15 minutes unless your insurance company allows 30-minute appointments. I schedule 30 minutes with my GP on each visit, that lowers my stress level and allows us to talk more in-depth if needed.

Thank you for nominating me for Advocating for Another in the 9th Annual WEGO Health Awards. I’m honored to be nominated, there are so many heavy hitters at WEGO Health.

Want to vote for me? Here’s how, https://www.wegohealth.com/87797365

I would be honored if you voted for me. Voting is open until the end of July.

Thank you.

Melinda

What are the WEGO Health Awards?

The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. Since its inception in 2011, the WEGO Health Awards have proven to be one of the best ways to celebrate the patient advocates, influencers and collaborators sharing their story and raising awareness for their communities. Last year alone, we celebrated over 6k nominees!

This year’s winners will receive:

• $500 prize to be used towards advocacy efforts or travel
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value $1500)
• Opportunity to be featured as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year

Still have questions about the program? Click here to get your answers!

There are many ways for nominees to get involved in the WEGO Health Awards, and you’ll be hearing from us with more details soon. In the meantime, be sure to share your nomination with your community.

Congratulations! 
The WEGO Health Team

Thank you for nominating me for Best in Show in the 9th Annual WEGO Health Awards. I’m honored to be nominated, there are so many heavy hitters at WEGO Health.

Want to vote for me? Here’s how, https://www.wegohealth.com/87797365

I would be honored if you voted for me. Voting is open until the end of July.

Thank you.

Melinda

What are the WEGO Health Awards?

The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. Since its inception in 2011, the WEGO Health Awards have proven to be one of the best ways to celebrate the patient advocates, influencers and collaborators sharing their story and raising awareness for their communities. Last year alone, we celebrated over 6k nominees!

This year’s winners will receive:

• $500 prize to be used towards advocacy efforts or travel
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value $1500)
• Opportunity to be featured as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year

Still have questions about the program? Click here to get your answers!

There are many ways for nominees to get involved in the WEGO Health Awards, and you’ll be hearing from us with more details soon. In the meantime, be sure to share your nomination with your community.

Congratulations! 
The WEGO Health Team

Thank you for nominating me for Best Kept Secret in the 9th Annual WEGO Health Awards. I’m honored to be nominated, there are so many heavy hitters at WEGO Health.

Want to vote for me? Here’s how:  https://www.wegohealth.com/87797365

I would be honored if you voted for me. Voting is open until the end of July.

Thank you.

Melinda

What are the WEGO Health Awards?

The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. Since its inception in 2011, the WEGO Health Awards have proven to be one of the best ways to celebrate the patient advocates, influencers and collaborators sharing their story and raising awareness for their communities. Last year alone, we celebrated over 6k nominees!

This year’s winners will receive:

• $500 prize to be used towards advocacy efforts or travel
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value $1500)
• Opportunity to be featured as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year

Still have questions about the program? Click here to get your answers!

There are many ways for nominees to get involved in the WEGO Health Awards, and you’ll be hearing from us with more details soon. In the meantime, be sure to share your nomination with your community.

Congratulations! 
The WEGO Health Team

This movie is riveting, heartbreaking, frustrating and will make you mad as hell at the way patients with chronic pain are treated. The story also looks at how doctor’s who try to help pain patients are treated and sometimes shunned. This is a movie for anyone who suffers from chronic pain, loves or knows someone who sufferers from chronic pain or wants to better understand how patients with chronic illnesses can get treated by the medical community. It’s for the whole family to see and from my perspective the more people around you who see this movie, the more understanding they will be of your limitations.

Melinda

Pain Warriors: A Civil Rights Movement for Our Time

May 25, 2020

By Pat Anson, PNN Editor

A long-awaited documentary about chronic pain in North America is shining a light on the other side of the opioid crisis – how chronic pain patients and their doctors have been marginalized and persecuted in the name of fighting opioid addiction.

“Pain Warriors” is being released by Gravitas Ventures. It is available for streaming on Vimeo, iTunes and Amazon Prime or on DVD.

The 80-minute film takes an intimate look at the lives of four chronic pain patients and their loved ones, including an 11-year old boy living with cancer pain and a doctor who nearly lost his medical license due to allegations he overprescribed opioids.

Two of the “pain warriors” featured in the documentary commit suicide after losing all hope that their pain will be properly treated.   

“That captures the essence of our film — invisible, shunned and disbelieved. This is the story of their fight. Pain Warriors is a civil rights movement for our time,” says Tina Petrova, who produced and directed the documentary along with filmmaker Eugene Weis.  

“Doctors have been incarcerated, committed suicide, gone broke standing up for appropriate treatments for intractable pain. Families have lost loved ones due to suicides from chronic pain and medical complications such as spinal leaks. This is no small disease. It steals husbands and wives, sons and daughters.”

Pain Warriors is dedicated to Sherri Little, a California woman who took her life at the age of 53 after a last desperate attempt to get treatment for her fibromyalgia and colitis pain. (See “Sherri’s Story: A Final Plea for Help”). Sherri was a good friend of Petrova, who is well-acquainted with the issues faced by chronic pain patients – because she’s one herself.

“I began pre-interviews for the film around 2014, gathering collections of heartbreaking, compelling stories. A pain patient struggling with her own pain demons donated money to the cause, wanting her story told alongside others, and we began making the film in earnest,” she told PNN.

“Has it been easy? I’d say it’s been a hell of a lot of painstaking work by all involved, including the cast, who bravely offered up their vulnerability and very intimate stories. Has it been worth it? Absolutely.”

You can see a preview of Pain Warriors here:https://www.youtube.com/embed/doJlrB_0pLQ?wmode=opaque&enablejsapi=1

The release of Pain Warriors was initially delayed due to funding problems, and then because Petrova suffered a severe back injury during physical therapy. She was bedridden and housebound for over a year.

“I’m hopeful that I’m on the mend at long last, and will be able to take the film across North America, once COVID restrictions are lifted, and lead in-person screenings with the people the film was made for — chronic pain patients and the healthcare professionals that sometimes risk everything fighting for their rights,” says Petrova.

Dr. Mark Ibsen plays a prominent role in the film. The Montana Board of Medicine suspended Ibsen’s medical license in 2016, a decision that was reversed two years later when a judge ruled the board made numerous procedural errors.

Ibsen’s legal battles have not ended. The Board of Medicine has refused to formally close his case, leaving Ibsen in professional limbo. Pharmacists won’t fill his opioid prescriptions and he was forced to close his urgent care clinic in Helena. Now he travels the back roads of Montana writing prescriptions for medical marijuana.

“I’ve been marginalized,” says Ibsen, who plans to sue the Board of Medicine for monetary damages. “Anything the board would say would not completely clear me. I need the judge to say, ‘This is bogus. Stop it. Dismiss the case.’”   

Pain Warriors is featured in PNN’s Suggested Reading section, where you can buy the DVD through Amazon.42 Comments35 Likes Share

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• SEX BIAS PERSISTS IN PAIN RESEARCH 
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If you’re looking for ways to look after your mental health but you don’t know where to begin then don’t worry, you’re definitely in the right place. Although it can be overwhelming, you need to be sure you’re doing all that you can to look after yourself, including your mental health. Luckily, there are lots of ways in which you can do exactly that. From practising self-care to getting fresh air, there are lots of small changes you can make to your day-to-day life. With that in mind, here are 5 small ways to look after your mental health every day:

Make Sure You’re Drinking Plenty Of Water And Eating What Your Body Wants

Although you may not feel as though they’re intertwined, your mental health can often be improved by focussing on what your body needs. Whether that means ensuring you’re drinking enough water or listening to what your body wants to eat, you need to be sure you’re focussing on your physical health too. While it may not be your top priority each and every day, remembering to drink water and eat nutritious meals is important. For more information when it comes to the link between mental and physical health, you can visit this site here. 

Practise Self-Care As Often As You Can

Another great way to help improve your mental health is to focus on practising self-care as often as you can. Whether you’re taking a long hot bath or you’re spending the evening watching your favourite TV, you may be surprised at how much comfort it can provide. As self-care is different for everyone, you may want to look at some self-care ideas here. 

Consider Writing In A Journal 

Although this doesn’t work for everyone, writing in a journal is a great way to get all of your thoughts down in one place. Whether you’re planning out your day or you’re writing down the events that have happened that day, writing things down is known to help many people when it comes to mental health. If you’re looking for inspiration when it comes to finding a mindfulness journal, you can visit this site here. 

Do Things That Make You Happy

Another great way to focus on your mental health each and every day is to do things that make you happy. Whether that means seeing the people you love or cooking your favourite meal, the things that you love are guaranteed to make you smile. For a guide to finding things that make you happy, you can visit this site here. 

Ensure You’re Getting Fresh Air

Finally, you may want to think about getting some fresh air. Although it doesn’t work for everyone, getting outside and going for a walk can help give you a moment of happiness. 

With lots of helpful ways to look after your mental health, you can be sure you’re doing all that you can to put yourself first. What else could you do? Did we miss anything? Let us know your thoughts and ideas in the comments section below. 

There’s no doubt about it, we’re on the verge of a mental health crisis. Although lockdown measures have been eased all over the country, critics claim that the measures put in place to get the economy back up and running are too much, too soon. However, while many debate the wisdom of reopening the economy at a time when so many are still dying to COVID-19 on a daily basis, one could argue just as fervently that an extended lockdown is a mental health crisis waiting to happen. We all need to do our part to safeguard and improve our mental health. But before you call your doctor for a prescription, you might want to consider the natural mood enhancers that are all around us. We’re talking about the healing and rejuvenating qualities of plants. Letting plants into your life can boost your mental health in a variety of ways. 

Image by LUM3N via Pixabay

Here are 5 ways in which plants can ease your stress and anxiety and help to improve your mental health.  

Eat more of them

A plant-based diet has a wide range of health benefits. But did you know that certain veggies and fruits contain natural compounds that can help to correct your brain chemistry, ease your stress and boost your mood naturally? Get more of the following in your diet and you may find that your outlook gets a little sunnier;

• Blueberries, strawberries and raspberries
• Spinach, kale and other leafy greens
• Tomatoes 

Surround yourself with them at home

Even with relaxed lockdown measures, you’re probably spending a lot more time at home these days. Why not share your home with some beautiful mood-boosting pals? Houseplants are a great addition to any interior design aesthetic. They oxygenate your living space and imbue your environment with a sense of calm and tranquility.  

Spend more time with them outside

Of course, your home isn’t the only place where you can enjoy being close to plants. Indeed, when things get you down, getting out in the open air among trees, plants and flowers can be a real tonic for your wellbeing. Taking a walk in your local park is a great way to do this, as spending some quality time in the garden watching your plants grow. 

Use herbal supplements 

Plant based health supplements like CBD oil have been linked to positive mental health outcomes in some studies, especially when it comes to managing stress, anxiety and depression. Aches and pains can exacerbate your mental health issues, and there’s also evidence to suggest that topical application of CBD oil can ease pain caused by inflammatory conditions like arthritis. 

Use them to make a relaxing drink

Finally, while your cup of joe may give you a jolt in the morning, too much caffeine can actually exacerbate your stress levels and make you jittery. Instead, try a soothing infusion of green tea which is found to have calming effects on the body as well as being an excellent antioxidant. 

Make plants your friends to keeping you smiling through this difficult moment. 

Thank you for nominating me for Rookie of the Year in the 9th Annual WEGO Health Awards. I’m honored to be nominated, there are so many heavy hitters at WEGO Health.

Want to vote for me? Here’s how, https://www.wegohealth.com/87797365

I would be honored if you voted for me. Voting is open until the end of July.

Thank you.

Melinda

What are the WEGO Health Awards?

The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. Since its inception in 2011, the WEGO Health Awards have proven to be one of the best ways to celebrate the patient advocates, influencers and collaborators sharing their story and raising awareness for their communities. Last year alone, we celebrated over 6k nominees!

This year’s winners will receive:

• $500 prize to be used towards advocacy efforts or travel
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value $1500)
• Opportunity to be featured as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year

Still have questions about the program? Click here to get your answers!

There are many ways for nominees to get involved in the WEGO Health Awards, and you’ll be hearing from us with more details soon. In the meantime, be sure to share your nomination with your community.

Congratulations! 
The WEGO Health Team

You know you have a problem, and your addictive behaviour is beginning to impact other parts of your life. Quitting any kind of addictive behaviour can be very difficult to do, even if you know that what you’re doing is bad for you. 

You can quit, although quitting can be a complicated process. There are many physical, mental, and emotional factors that can make giving up hard. This is why many people seek treatment for addiction, like hypnosis, counselling, or even pet friendly rehabs, although some people are successful quitting on their own. 

Understanding why quitting is so hard can help you to learn how to overcome your addiction. You can recognise that you are not weak-willed or are failing of you find it difficult. 

Tolerance

Tolerance and withdrawal both contribute to addiction. Both are a large part of what get you hooked in the first place, whether your addiction is food, nicotine, or something harder. Without tolerance and withdrawal, you would find quitting much easier. 

When you experience an addictive substance or behaviour for the first time, it can be overwhelming, or even unpleasant. If you feel the effects strongly, then you might feel as though there is a low risk of you being tempted to overdo it.

If the effects are mild, then you might think your behaviour is harmless. The more you repeat the behaviour, the less sensitive you become to it and the more you need to feel the same effects. Drugs, including alcohol, work on the brain to create physical tolerance. 

Some behaviours, like gambling, produce a feeling of excitement. This excitement may become less intense over time. As your tolerance level develops, you might want to repeat the behaviour more to get the same feelings or effects. 

Withdrawal

As you start to become addicted, you can begin to experience withdrawal when you aren’t able to partake in the behaviour. You might experience physical symptoms, like shaking, feeling unwell or an upset stomach, or you might experience emotional symptoms, like anxiety or depression. These symptoms go away when you act on the addictive behaviour.

Physical withdrawal can vary, and usually takes a few days. Withdrawal from drugs or alcohol can be very unpleasant, and even dangerous, so is best undergone under medical supervision. 

Impediments For Quitting

Addiction can reach a level where it creates a lot of enternal conflict. You might feel conflicted within yourself, as you want to quit, but also still have urges to engage in whatever you are addicted to. You may also have a conflict with others, both with those who want you to quit, but also with those who want you to keep engaging in the thing you’re trying to give up. 

Even after getting through the withdrawal phase, conflict can still exist. Quitting is stressful, and now you’re managing without something you used to use to cope, so this will be tough. 

It is important to learn other ways of coping with stress and to have those firmly established, ideally before you quit. This gives you other options to cope. A therapist can help you with this. Without these strategies already in place, you’re likely to experience stronger urges to relapse. 

Guilt And Justification

Feeling guilty and uncomfortable about your current behaviour can be a great motivator to help you make a change, whether you want to drink less, or give up gambling. Sometimes, guilt can also work against you, as you find ways to justify the behaviour that you aren’t happy with to yourself and to others. Justification can a big obstacle to quitting. 

Common justifications can include:

• Denial – it’s not a problem
• Minimization – I’ve already cut down
• Comparison – My friend smokes more than I do
• Defiance – I’d rather carry on than quit and be miserable
• Rationalisation – I’m more confident in social situations after I’ve had a drink
• Lesser of two evils – It’s better to do this than be miserable and hard to live with
• Misinformation – It has medicinal uses, so it’s ok
• Glorification – Cool people drink alcohol and smoke

How Can You Quit?

Therapy can be a great starting point to help you to cope with any uncomfortable feelings and to help you pinpoint the thoughts and feelings that keep you addicted or led you to the behaviour in the first place. Quitting is rarely easy or straightforward, but with a good treatment program, you have a better chance of achieving your goals when you’re ready. 

WOW, WOW, and WOW! Thank you for nominating me for Best In Show Blog in the 9th Annual WEGO Health Awards. Voting goes through July 31st. 

If you would like to vote for me, here’s how: https://www.wegohealth.com/87797365

I would be honored if you voted for me. Thank you.

Be Well

Melinda

What are the WEGO Health Awards?

The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. Since its inception in 2011, the WEGO Health Awards have proven to be one of the best ways to celebrate the patient advocates, influencers and collaborators sharing their story and raising awareness for their communities. Last year alone, we celebrated over 6k nominees!

This year’s winners will receive:

• $500 prize to be used towards advocacy efforts or travel
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value $1500)
• Opportunity to be featured as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year

Still have questions about the program? Click here to get your answers!

There are many ways for nominees to get involved in the WEGO Health Awards, and you’ll be hearing from us with more details soon. In the meantime, be sure to share your nomination with your community.

Congratulations! 
The WEGO Health Team

I met Lukas Lange CEO of Probably Genetics thru Chronic Illness Bloggers. I did not test their product but want to write about the company since I feel strongly about how genetic testing can help improve the medical community.

There are diseases misdiagnosed every day or take years to diagnose. Genetic testing can shorten the timeline dramatically in determining if you have certain illnesses.

One important factor to consider when doing genetic testing is counseling a part of the service. Why is this so important? Genetic testing is a complex science and needs interpretation by an expert in genetics.

I had my DNA sequenced for family history knowledge and discovered I had several genetic markers for certain illnesses or higher risk for illnesses. This information doesn’t help without an expert spelling out what this means and what I can do with the data.

Probably Genetics provides genetic counseling with their testing services. Here’s a little more about the company. I also included a great post about Fibromyalgia and genetic testing below.

About Probably Genetic

Probably Genetic’s mission is to end the diagnostic odyssey. They have built what they believe is the fastest way to access clinical genetic testing anywhere in the US.

Genetic conditions are not always obvious and certain chronic illnesses may be caused by or have an underlying genetic component. Symptoms like chronic pain, severe fatigue, unexplained muscle or joint pain are common across several conditions. This is why rare genetic conditions can take years for doctors to diagnose.

Probably Genetic combines cutting-edge genetic science with software and technology to get fast, accurate results and shorten diagnostic times from 7 years to 8 weeks. Probably Genetic helps you get the appropriate care with physician-ordered tests and genetic counseling included in our service to help you make the best decisions for you and your family’s care. You can find out more about them here.

This excerpt is taken from the Probably Genetics Blog.

You can read the complete post at https://blog.probablygenetic.com/blogs/genetics-of-fibromyalgia

Is Fibromyalgia coded in your DNA?

• There are many rare genetic conditions that look like fibromyalgia and it is often the case that patients with these conditions first get a fibromyalgia diagnosis.
• There is substantial evidence that some fibromyalgia cases might have a genetic origin but the exact causes still remain unknown.

Introduction

Fibromyalgia is estimated to affect between 2% and 8% of the world’s population. To put that into perspective, the total number of potential people impacted by fibromyalgia could be nearly twice the population of the entire United States. Yet, for a condition that is so prevalent, its cause remains uncertain.
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Fibromyalgia is mainly characterized by chronic, widespread pain across the body. Many fibromyalgia patients also suffer from a combination of other symptoms that impact sleep, energy levels, digestion, and even mental health. The complex symptom combinations and the significant overlap of these symptoms with many other conditions can make fibromyalgia incredibly challenging for doctors to diagnose.  

So how are genetics, or what’s in a person’s DNA related to fibromyalgia?
There are many rare genetic conditions that have symptoms which strongly overlap with fibromyalgia

Like fibromyalgia, rare genetic conditions are difficult to diagnose. This is why it takes on average 7 years after the onset of first symptoms for doctors to recognize the condition. Many rare genetic conditions have symptoms that look like those of fibromyalgia. For patients with these conditions, many will receive a fibromyalgia diagnosis first before doctors identify what they have.
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For example, many people with Ehlers-Danlos syndrome (EDS) report having chronic widespread pain and chronic fatigue, classic symptoms of fibromyalgia. There are many different types of EDS, but some varieties are also characterized by symptoms such as thin or stretchy skin, or hyper-mobile joints (for example when a person can bend their elbow past 180 degrees). According to this research study: “[hyper-mobile] EDS may often be misdiagnosed as fibromyalgia because of diffuse pain, but they are considered as two distinct conditions”. Of course, it is entirely possible that a patient can have both fibromyalgia and EDS; however, having a complete picture what what a person has is crucial for helping them manage treatment.
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In addition to EDS, Myotonic dystrophy type 2 (DM2), a genetic condition characterized by muscle pain, weakness and stiffness also has a strong symptomatic overlap with fibromyalgia. In a study conducted in 2008, doctors found that 3.2% of their cohort of patients with fibromyalgia tested positive for the genetic mutation that causes DM2. Their recommendation with regards to fibromyalgia was that “clinicians should be aware of overlap in the clinical presentation of these [two] distinct disorders”.

Other such genetic conditions where patients might initially be diagnosed with fibromyalgia include female carriers of Fragile X (see this study) and Myotonia Congenita (see here). The conditions mentioned here certainly do not represent a complete list. Furthermore, it’s important to understand that not all cases of fibromyalgia are related to an underlying rare genetic condition

A special thank you to Lukas Lange CEO of Probably Genetics for the opportunity to speak with him. http://www.probablygenetic.com

Melinda Sandor

What’s your passion? Social entrepreneur Noeline Kirabo reflects on her work helping out-of-school young people in Uganda turn their passions into profitable businesses — and shares the two questions you can ask yourself to begin doing the same.

This talk was presented at an official TED conference, and was featured by our editors on the home page.

ABOUT THE SPEAKER

Noeline Kirabo · Social entrepreneurNoeline Kirabo self-educated her way out of the slums of Kampala, Uganda. Now she helps vulnerable youth gain skills to turn their passions into profitable businesses.

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Helping Those Struggling with Chronic Illness, Loved Ones and Caretakers THRIVE
through Creating, Connecting and Community…

Living with chronic illness doesn’t come with a set of instructions…. 
So we’ve pulled together a variety of speakers, including medical experts, alternative practitioners, spiritual teachers and healers, thought leaders, thriving artists who battle illness, online support networks and creative therapists, to address these relevant topics and more. Hear inspirational stories directly from other people who have gone through something similar – and learn exactly how they overcame their challenges, and what specific recommendations they have 
to help You go from surviving… to THRIVING. This free event is just for YOU!

Say hello to our speakers

We couldn’t be more excited about our lineup. Which talks will you be checking out?
Dr. Sarah BallantyneSpeaker, Author, Health Expert

Dr. David BradyIntegrative Practitioner, Naturopathic/Functional Medicine Physician, AuthorWhole Body Medicine
Teri CochraneIntegrative Practitioner, Nutritional Counselor, Writer, Speaker

Dr. Joel FuhrmanPhysician, Best-Selling Author

Dr. Liz Lipski PhD, CNS, FACN, IFMCP, BCHN, LDNProfessor of Clinical Nutrition, Integrative Health, Nutrition SpecialistInnovative Healing Inc.
Miranda MacphersonSpiritual Teacher, Modern Mystic, Author

Dr. Peter OsborneClinical Director, AuthorOrigins Healthcare
Jessie AceArtist, Illustrator, Podcast Founder & HostDISabled to ENabled
Reverend Linda Anderson-LittlePastor, Author, Spiritual Director, Blogger, Breast Cancer SurvivorSt. Luke’s Lutheran Church, ELCA
Carolyn BoydVisual Artist, Jewelry Designer

V CapaldiPaleo Boss Lady, TEDX Speaker

Amber CarollDirector, Well ConnectedCovia
Allie CashelAuthor, President/Co-FounderSuffering The Silence
Dr. Aruna ChinnakotlaInternal/Advanced Mind-Body/Integrative Medicine, Palliative/Hospice CareKaiser Permanente
Dr. Melissa CongdonMD, FAAP, Fibromyalgia Specialist

Geno CreeseLead FacilitatorDe Colores Arts
Dr. Alexandra CrosswellHealth Psychology PhD, Assistant Professor, PsychiatryUCSF
Elana DavidsonAuthor, Mental Health and Happiness CoachHealing Minds and Hearts
Jacquelyn DavisPodcast Host, ArtistThe Airhead Diaries
Maddie and Angela DeanArtist with Juvenile Dermatomyositis

Allison FineClinical Social Worker, Therapist, FounderThe Center for Chronic Illness
Joanna FrankhamHolistic Health Coach

Dr. Alan GlaseroffFamily Physician, Co-founderStanford Coordinated Care
Keisha GreavesFounder, SpeakerGirls Chronically Rock
Christian HarrisFacilitatorDe Colores Arts
Kimberly HuffAquatic Training SpecialistAquatic Exercise Association
Adrienne KleinIyengar Yoga Instructor

Dr. Sruti LamNaturopathic DoctorThe Center for Health and Wellbeing
Kate LorigDoctor of Public HealthSelf-Management Resource Center
Ellen LovelaceFunctional NutritionistA Balanced Table
Danielle LoweMusic Therapist

Erica LupinacciActor, Producer, Co-FounderSuffering The Silence
Kristina MaciasYoga/Meditation Teacher, Speaker, CoachPrimal Coding
Adriana MarchioneExpressive Arts Therapist, Movement Educator, Documentary Filmmaker

Juana and Estela MataFounder, SpeakerLooms For Lupus
Dr. Erica MatluckNaturopathic Doctor, Nurse Practitioner, Holistic CoachSeven Senses
Monica MichellePodcaster, Writer, IllustratorInvisible Not Broken
Eve MontagueMusic Therapist, Dir. Creative Arts TherapiesSouth Shore Conservatory
Shawna NielsenNurse, Mother, Advocate who Lives with Dermatomyositis

Roke NoirEast_wst Energy Teacher, Wellness Practitioner, Life CoachLabrys Healthcare Circle
Amy OestreicherArtist, Author, Speaker, Playwright

Paula OrregoPoet, Writer

Monica PasqualSinger-Songwriter, Producer

Ariela PaulsenTeacher, Artist, BloggerMighty Well
Dr. Lee PhillipsLCSW, Psychotherapist, Sex Therapist

Rev. Alan PritzInterfaith Minister, Meditation Teacher, Spiritual Coach, Kriya YogiAwake In Life
Dr. Keith RafalMedical Doctor, Rehabilitation Medicine Specialist, FounderOur Heart Speaks
Margo RappaportClinical Director, Nutritional Therapist, MSW, LCSW

Jasmine RaskasArtist, Blogger, Wellness Coach

Sefora RayMarriage and Family TherapistTherapy to Thrive
Kari RogenskiDirector Hummingbird Project, RDT, LMFTSage Eldercare Solutions
Mark RomeroEnergy Healer, Transformational LeaderMark Romero Music
Lori SchwanbeckMFT, CHT Mindfulness Psychotherapist, Meditation Teacher

Malati ShinazyFounder, Author, FacilitatorLead Pacific Consultants
Dr. Mary SiegelClinical Psychologist Specialist, Author

Jess StainbrookExecutive DirectorInvisible Disabilities Association
Dr. Amy StenehjemHealth Advocate, Health Care Navigator, Health Coach

Dr. Heather StuckeyD.Ed., Associate Professor, Director of Research Foundation for Art & HealingPenn State Health & College of Medicine
Mary SwansonIntuitive Practitioner, Healer, Teacher, Facilitator

Rachel TrobmanCEO, CO-FOUNDERUpside Health
Katie WadeDirector, Social CallCovia
Caroline WatersRecording, Performance Artist

NicoleArtist, FounderAllHeART
Select Speakers Panel 1

Select Speakers Panel 2

Special Guest

Are you ready for some Summer fun? It’s Christmas in July! How about making someone’s day brighter by participating in a card swap! You get to spread sunshine, have sunshine sent your way and there are prizes to win! 

With everything going on in the world, who wouldn’t want to send sunshine to another in your home country or abroad. It’s a great way to meet new people and who knows it may come on the day you need it the most.

I’ve teamed up with some bloggers and businesses in the chronic illness bloggers community to help promote a great giveaway to celebrate Chronic Warrior Collectives FREE Christmas in July Spoonie Card Swap https://chronicwarriorcollective.com/card-swap

Entering and sharing the giveaway gives you the chance of winning a prize and helps promote small businesses-all from bloggers in the chronic illness bloggers community. Several bloggers have kindly also signed up to share this giveaway and you can also opt to follow them as an entry choice.

The prizes on offer

The prizes on offer are:

A Spoonie Survival kit of your choice from https://www.spooniesurvivalkits.com 

Learn to Live Well with Chronic Illness’ Ebook by Katie May https://www.ktmy.co.uk (this is being launched this week!)

A blogging and freelancing bundle by Jenna Farmer http://www.thebloglancer.co.uk

Ebook: How to network online by https://www.lifeofpippa.co.uk

Special thanks to the bloggers who are sharing this giveaway on their own blogs to help our reach:

Jo Jackson from https://teaandcakeforthesoul.wordpress.com

Tea and Cake for the Soul https://talesofanaturalspoonie.com 

Stephie Simpson from http://colitistoostomy.com

Rachael Tomilsom  https://accessiblerach.co.uk/blog

Laurie Hansom Harmon  https://seekingserenityandharmony.com/blog

Lynley Gregory  https://topladytalks.com

Mel Sandor  https://lookingforthelight.blog

There will be four winners in total who each will win one prize from the bundle.

Enter via the Rafflecopter link below

a Rafflecopter giveaway

Sending sunshine your way!!!!!!

Melinda

I’m sure you know several great advocates who make a difference in your life. Now is the time to nominate them for a WEGO HEALTH AWARD. Have a great day.

Melinda

Think about the advocates and influencers you see leading Facebook groups, posting inspiring messages on Instagram and memorable content on TikTok, blogging about their health journey, speaking up and giving insights to healthcare companies, presenting on national stages, and running Twitter chats. 

Patient Leaders have started non-profits, published podcast episodes, and authored books – there is no shortage of Patient Leaders’ contributions to the world.

So let’s recognize as many of them as we can for their talents, contributions, and commitment.

🏆⤵️Click the link below to nominate top Patient Leaders:Nominate NOW! 🏆