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Entity Magazine – #womenthatdo

How Chronic Illness Empowers Me to Support Moms Everywhere

Wow, another AMAZING opportunity!! Recently, I was able to share my story, the very reason for inspiring others! My story was published on a social media platform called Entity Magazine – supporting #womenthatdo! Entity Magazine captures stories of women who are trying to inspire, educate, and motivate other women, accomplishing BIG things! Beyond humbled to be given the chance to get this story published! I want to let MORE women know that they are not alone in the journey of motherhood with a chronic illness! Thank you so much for this opportunity Entity Magazine!

Check out my post on their website below:

How Chronic Illness Empowers Me to Support Moms Everywhere

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The Mighty – Chronic Illness Community

The Mighty

BEYOND thrilled to have been selected as a contributor on the @themightysite ??❤️. My goal when I started this journey was to reach as many other mamas out there struggling with similar situations. More often than not – just knowing that YOU – are – NOT – alone – is really HALF the battle with any struggle! When I was at my worst, dealing with debilitating bed-bound fatigue, I had little strength to get through my day in one piece, let alone fight the horrific invisible illness stigma that so many of us have to deal with. If your closest friends and family can’t, or don’t want to understand your situation…who will?! I know I am lucky to have had friends who stuck through my thick and thin. And I am even more lucky to have my partner who did as well!

Check out the link below:

https://themighty.com/2017/10/being-married-to-someone-with-chronic-illness/

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Kids Fit Matters

Kids Fit Matters

Did you know that October was National Bullying Prevention Month? Unfortunately, in lieu of recent events, it seems as though bullying has reached an epidemic. It is taking over our national stage.

Have you ever experienced a form of bullying, or even just criticism in relation to your chronic illness? Did you experience this as a child, or as an adult? For myself, I experienced being bullied as a child. I was called anorexic for being too skinny. Although unbearable, hurtful and shaming, I grew to ignore it. As an adult, I have experienced bullying in the form of criticism. Because I look healthy on the outside, people have questioned the very illness debilitating my life. This includes everything from firsthand eye-rolling, to people talking behind my back! And while also unbearable and hurtful, I have learned to keep those people at an arms length.

I have also learned that some people just lack empathy, but some people actually thrive on being a bully. Those who are the latter, are not worth my time, and nor should they be worth your time. Just like stress, those bullies can also exasperate chronic illness, so my advice is to stay away. Ignore. And stay far away.

What have you done to combat a bullying situation? Have you ever wanted to understand more about bullying, and how you can get support? For yourself or for your children?

One of the cool things about having a website and blog, is that I continue to get information passed along with great resources. Kids Fit Matters is a handy website, that has a variety of resources, including recent topics on bullying. Their website is a one-stop shop for all things family-related, and has a variety of resources for mothers and parents, on everything you need for your family to live a healthy life! They have resources for different types of exercises based on the ages of your children, nutritional solutions for healthy eating, recipe suggestions, and dietary needs, self esteem resources for anything ranging from mental illness to bullying, and my favorite….a whole section dedicated to providing you with really cool applications for managing health records, kids schedules and finding babysitters!

Check it out and let me know what you think!?

 

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Environmental Working Group

A dear friend of mine, who has been struggling with a decade of symptoms from a now diagnosed case of lupus, who also happens to be in her first year of medical school, sends me the latest and greatest research, articles, and new fresh informational ideas for anything health and medical related.

The latest she sent me is about an organization called the Environmental Working Group. Which just so happens to be the coolest, most useful website I have come across in my dozen or so years of internet searching for healthy information.

And I’ll tell you what. For someone who adheres to mostly gluten free, dairy free, while closely following an autoimmune anti-inflammatory diet, who also consulted with both naturopathic and eastern doctors to use holistic approaches like acupuncture and many others, while also relying on some pharmaceuticals to keep me physically upright —- I wholeheartedly rely on good research, and trust products such as those mentioned on their website, because I trust the products have been vigorously tested to be considered “safe” for both myself and my family. Because our family is plagued with chronic illnesses, it is extremely important for our family to use products that are healthy for our bodies!

To give you a little background, the Environmental Working Group’s mission is to empower people to live healthier lives in a healthier environment. They are a non-profit, non-partisan organization dedicated to protecting human health and the environment by using breakthrough research and education.

This website is SO cool and unbiased, that you can actually plug in your local zip code and find out what is in your local tap water, to see if it is considered safe to drink. Do you know what’s in your tap water? And this website is loaded with other information and research, such as: Do you know what safeguards they use to protect your water, soil, air and your kids? What about those hidden indirect food additives and pesticides in your food? What’s lurking in the cleaners underneath your sink? What about the dirty dozen endocrine disruptors that can play tricks on the hormones in our bodies?  What actually are GMOs?

Check out their website and let me know what you think. I promise you won’t be bored, and that you will pleasantly surf their beautifully designed, and very user-friendly website.

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Molly’s Fund Fighting Lupus – Part 2

10 Tips for Parents Living with a Chronic Illness by Molly’s Fund Fighting Lupus

I am excited and THRILLED to share that I recently had the privilege to partner with Molly’s Fund Fighting Lupus! They are a wonderful organization dedicated to supporting people not only living with lupus, but a myriad of other autoimmune diseases. Together, we teamed up to revamp an older article of theirs, “10 Tips for Parents Living with a Chronic Illness”  — because we BOTH understand how difficult it is to be parent with a chronic illness!

Their article also coincides with my most recent blog post “Ten Things to Never Say to a Mother with a Chronic Illness”, whereas Molly’s Fund Fighting Lupus goes even further to provide ten thorough and very supportive tips for parents with a chronic illness. I think as parents with, and even without physical limitations, we can ALL share these VERY practical applications! What do you think?!

Please take a look at their article and let me know if there anything else you would add in terms of tips for parents/mothers with a chronic illness? Do you think these tips could be supportive for MOST chronic and invisible conditions? Would you consider sharing this article and any of Molly’s Fund Fighting Lupus tips with your community!?

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Mommy Isn’t Feeling Well Launch!

Mommy Isn’t Feeling Well Website and Blog:

Are you a mommy who isn’t feeling well? Parenting is hard enough for a healthy person, but even harder for someone struggling with the compounding effects of chronic illness. My goal is to let you know that you are NOT alone!

Please join me on this long-awaited journey – launching my new website and blog, Mommy Isn’t Feeling Well!

Sign up for my monthly Mommy Isn’t Feeling Well newsletter today!

motherhood and chronic illness

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Autoimmune Crisis

How many women in your life suffer from an Autoimmune disease?

There is an invisible crisis going on, and at an alarming rate, women are suffering the affects the most. According to the American American Autoimmune Related Diseases Association (AARDA), they estimate a more accurate number closer to 50 million people affected by autoimmune disease in the U.S., and 75% of these people are women.  That is more women affected by autoimmune conditions than cancer, diabetes, and other more commonly recognized diseases.  If I look at the women in my family and my closest girl-friends, 8 out of ten are dealing with some level of an autoimmune issue.

Not only are women primarily affected by autoimmune conditions, but often times, getting an appropriate diagnosis and appropriate treatment can take up to a horrifying several years or more. My own mother has struggled with the symptoms of Hashimoto’s and Vitilago, and the inability to pinpoint the correct treatment for an entire lifetime.

Angela Crowley, MD, is up-front about it. “Accurately diagnosing an autoimmune disease can be tricky. People on average see six doctors over a period of 4 years before they get a diagnosis. This is because, in general, autoimmune diseases tend to arrive unpredictably, disguised as other conditions, offering only confusing clues as to what they are.” – The Detective Work of Autoimmune Disease, Amy Sarah Marshall   |   10/31/2014

For myself, I am a classic example of this dichotomy. My road to diagnosis and treatment process has taken a decade to figure out, and even then, renown doctors from top institutions cannot confirm or deny my autoimmune condition. I was 24 years old when I was initially diagnosed with Myasthenia Gravis, both an autoimmune and neuromuscular disease. My symptoms have ranged over the years, from debilitating fatigue to muscle weakness to double vision, difficulty swallowing and more. However, when immediate surgical treatment didn’t work, and different medications ranging from oral steroids to immunoglobulin in-hospital treatment also didn’t work; doctors realized they may have been targeting the wrong autoimmune condition. Yay for me.

Without diving into the endless rabbit hole of trying to understand WHY we have such a horrendous autoimmune epidemic, WHY it primarily affects women, and WHY the diagnostic process is taking a WAY TOO LONG, I’d like to just offer several reasons as to why I think – based on my experience –  WHY it is difficult for doctors to correctly diagnosis an autoimmune condition.

  1. Autoimmune diseases are 9/10 times invisible.
  2. Unless you have leprosy, or are missing a limb, people often look healthy on the outside.
  3. Autoimmune symptoms mimic hundreds of other conditions.
  4. Doctors look at you (as a woman), and think it MUST be your thyroid, blood sugar, or anxiety in your head. (thank god my doctors never thought this, but I know several friends who have experienced this)
  5. Doctors are sometimes lazy. (when symptoms are present, and your lab results confirm it is NOT your thyroid, blood sugar, or in your head – they give up and send you on your way with your unidentified autoimmune condition with no answers…”take the city bus if you are too tired”, they say)
  6. Doctors hit roadblocks. (when symptoms present, and your labs confirm something wonky, they just let it go because they don’t have a concrete answer)
  7. Many autoimmune diseases have not yet been identified. (I’ve been told my particular autoimmune issue is not yet identified, but that I do have wonky test results with autoimmune markers. You see, there is a ton of research going on right now to study and identify much more in the autoimmune world. I’ll be lucky if they identify my wonky labs in my lifetime.

Here is a wonderful article that highlights much of what I have brought up here, and more…

The Women’s Health Crisis No One Talks About 

So, how many women in your life suffer from an Autoimmune disease? Are they mothers and do they struggle with symptoms while trying to raise their children? Do you have an autoimmune disease? If so, how does it affect your daily life, motherhood, and/or your family?

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Bring Change 2 Mind

Bring Change 2 Mind

A mental health expert, and dear friend of mine, recently reminded me that there are so many women, and in particular mothers, who are struggling with MORE than just the compounding physical effects of chronic illness and parenting. These women, she reminded me, are struggling with very difficult emotional and social issues that also come with navigating their illnesses. She recommended that I bring to light, and perhaps start a conversation, about mental illness in connection with chronic illness.

She offered Bring Change 2 Mind as a good starting point.

What I like about Bring Change 2 Mind, is that they are very successfully using social media to engage in the conversation about mental illness. They are a trusted organization, with a growing audience, and they are giving people a voice to ensure those suffering with mental illness are not alone.

Bring Change 2 Mind is a nonprofit organization built to start the conversation about mental health, and to raise awareness, understanding, and empathy. BC2M develops influential public service announcements (PSAs), including its most recent campaign, #MindOurFuture, has piloted evidence-based programs at the university (UBC2M) and high school (LETS BC2M) levels engaging students to reduce stigma and discrimination, and has created a social movement around change by providing people with platforms to share, connect, and learn.

So, let’s start the conversation about mental illness, in connection with chronic illness, and let’s end the stigma. #mindourfuture

If you or someone you know needs immediate help, please call the Crisis Hotline: 800.273.TALK (8255).

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Molly’s Fund Fighting Lupus – Part 1

Molly’s Fund Fighting Lupus

I’ve recently had the pleasure of getting introduced to a wonderful organization, Molly’s Fund Fighting Lupus. A nonprofit organization that is changing the way the health care community, pharmaceutical companies, governmental agencies, the general public and those living with lupus understand the disease, its diagnosis and its treatment. Molly’s Fund Fighting Lupus is also dedicated to supporting people not only living with lupus, but a myriad of other autoimmune diseases, as a way to reach many more women, men, and children, suffering from the effects of such complicated conditions. Because autoimmune conditions are difficult to diagnose and treat, organizations like Molly’s Fund Fighting Lupus are paving the way for more research, awareness and better treatment for all! Here is how you can get involved.