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Mommy Isn't Feeling Well - Motherhood and Chronic Illness
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News

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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News

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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Lifestyle

What is it like to be married to someone with a chronic illness?

Before I excite you about how awesome it is for my husband to be married to someone with a chronic illness, let me paint a lovely (insert sarcastic voice) picture for you…

Freshly engaged, with marriage on the horizon, I wanted to revisit my old diagnosis, and check with a doctor about pregnancy. “Autoimmune diseases usually suppress themselves with pregnancy, and since you are supposed to be in remission, you should be fine”, my neurologist said.

Little did we know that my body wasn’t necessarily in remission (story for another time), and that I would go into a physical flare after my first pregnancy, and even worse, a physical crisis after my second. Back-to-back pregnancies were detrimental for my body. A year into the life of our first child, I knew the physical struggles I was experiencing were more than just sleep deprivation. In the months following our second child’s birth, my physical struggles began to take over. The weight on my already thin body started to fall off. I dropped from a healthy 120lbs (pre-children) down to 95lbs. My hair started to fall out in clumps, “chemotherapy size clumps”, as one doctor described it. I could see a heart beat in my stomach, and I could barely get off the sofa without having black spells.

I was seriously winded all of the time, and just getting both children dressed was enough for me to lay right back down. Getting our children to the corner store for milk, became my biggest outing. During this time, my children never saw the inside of Target with me, nor did I take them to parks and playgrounds like many other children their age. It was too much. Some friends scoffed at my situation, “oh, you just can’t mentally handle taking your children to Target”. But I was too fatigued to lift my arms without feeling like I was carrying cement-filled buckets. Somehow, my frail 95lbs felt like a 2-ton elephant on tranquilizers. And somehow through all of this, I was supposed to keep our family afloat, as many stay-at-home mothers do.

Looking back at this period. This was an awful introduction to motherhood for myself, fatherhood for my husband, and parenthood for us. I cannot help but think about what this phase was like for my partner. The main question through all of this, was…what is it like to be married to someone with a chronic illness?

And with that, I decided to interview my husband.

Q: What it is like to be a married to someone with a chronic illness?

Challenging.

Q: How so?

Invisible chronic illnesses are tough to understand. You have to exert a ton of patience, and you have to learn to become more understanding, and empathetic towards someone who looks normal and healthy on the outside, but doesn’t feel physically normal and healthy on the inside. I didn’t understand why you weren’t okay with me being gone long days at work, or why you wanted me to stay home on the weekends.

Q: What is it like to co-parent with someone with a chronic illness?

Just as challenging.

Q: How so?

Because you have to constantly think about how you can make your partners life easier, which puts more of a physical workload on me. I often try to cut workdays short and sacrifice plans outside of the home.

Q: How did you feel when your wife’s condition was at its worst, and when she was bed-bound at times?

Frustrated.

Q: How so?

Frustrated because I did not understand why you could not get out of bed, you looked so normal on the outside, I couldn’t understand how this could be a physical issue. I was also scared.

Q: Why were you scared?

I was scared because I didn’t know a whole lot about your condition, and I didn’t know if you were going to get better or worse because at the time, treatment was not working.

Q: Why didn’t you know a lot about her condition?

Because I was in denial and didn’t want to research things.

Q: How do you support your wife now?

Whatever you need. I often try to think ahead, and opt to put a lot of the physical burdens of parenting on my shoulders.

Q: How so?

I come home from work early, and I try to work from home. I also take our children to do activities like hiking, biking and swimming. Since many of these activities make you extra tired, so I try to do these by myself with the children, so that you can stay home and rest, or do chores at home while we are out. I also cook dinners, and clean the kitchen after many of our meals.

Q: Do you wish things were different?

Never thought about it.

Q: Why?

Because things are the way they are. I may not have envisioned this would be our life, but this is the life we have.

Q: What is some advice that you would give to someone’s spouse or partner who is dealing with a similar situation as you?

Take lots of deep breaths. Research and educate yourself about the disease or condition. Speak to a professional. Seek therapy as a couple as well. Communicate with your partner about your concerns, and your needs too.

Q: What would you do differently (when your wife was at her worst), if you knew what you knew now?

I brushed things off in the beginning, I closed off emotionally, and my frustration made things worse. I would have done more research to understand the details of your condition in the beginning, and I would have seen a professional sooner.

Q: What made you see things differently?

Having my own recent health issues has opened up my point of view.

Q: Would you be open to using this topic for my next blog post? “Daddy Isn’t Feeling Well?”

Perhaps…yes, perhaps!

 

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News

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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Lifestyle

Maxed Out After Having Children

Did having children set your chronic condition, or illness over the edge, and into a flare?

I spoke to a fellow mommy recently, who also isn’t feeling well, and we both had this same feeling…we knew our physical limitations before children. But it wasn’t until AFTER children, that we physically maxed out.

In my twenties, and before children, I knew full well that I was battling physical limitations. But since my disease was supposed to be in remission, I powered through severe bouts of fatigue, black outs, double vision, headaches, an inability to hear well out of both ears, difficulty taking deep breaths, tremors, muscle weakness, digestive issues, and exercise intolerance.

However, in my twenties, I was only responsible for the physical implications of taking care of myself. I would go to work, mask my symptoms, and come home to rest on the couch. Go out with friends, mask my symptoms, and rest in bed until noon on the weekends. With no children to take care of, I always had room to rest when I pushed my body too far physically.

And then pregnancy came. My body handled things pretty well until I was put on bed rest. After I delivered my first child, boy was my body maxed out. By maxed out, I mean that I was physically pushed beyond what a normal and healthy mother could sustain. Not only was my delivery borderline what a medical malpractice suit would entail, but our firstborn had severe reflux, had to be fed with limited amounts of milk, was not comfortable laying down flat, and most of the time he had to be placed on a wedge to sleep. He also didn’t sleep more than two hours at a time until he was close to 12 months. Yes, you read this correctly. WE didn’t sleep more than two hour increments for almost a year, and it was pure torture. I was a complete disaster, and so nauseated when I woke up for the day, that I lost all of my pregnancy weight, roughly 55 lbs. within a month. My body was in a total systemic crisis.

It first became clear that I was struggling after having children, when I couldn’t put on my firstborns diaper, and  his clothes for the day, without getting winded. I couldn’t even brush my teeth without having to sit down and rest afterwards. When I saw other moms whisking their young children to Target, the zoo, and playgrounds, where I was barely getting my children dressed for the day, I knew something was inherently wrong with me.

By the time I started to understand my journey was not normal motherhood fatigue, and that I was going through a health crisis, we found out we were pregnant with our second child. Even though I knew I was not physically capable of managing one child, let alone two children, we moved forward with the pregnancy, and simply resorted to get help from a nanny.

Even with child care support, two children less than two years apart left my body taxed. I continued to lose weight, and when my hair started falling out in “chemo” clumps, it finally became clear, that something was really not right. It also became clear that back-to-back pregnancies and managing the day-to-day nuances of raising children had set my chronic illness into a flare. I was experiencing something more than just normal mommy hood fatigue….and it was apparent that even the strongest of coffee couldn’t cure my situation.

Did having children set your chronic condition, or illness over the edge, and into a flare?

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News

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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Lifestyle

Postpartum Blues

Since I have launched this website and blog, I have had many positive responses from other mothers, all who have been terribly grateful that they are not alone on this journey. Not surprising, many of the moms struggle with a myriad of chronic illnesses, such as rheumatoid arthritis, cystic fibrosis, endometriosis, postural orthostatic tachycardia syndrome, chronic fatigue and others. Can you imagine the compounding effects of running around with babies, toddlers and/or children while struggling to grasp your own breath – or having to rest, ice and massage your inflamed, stiff and very painful joints? I can. Because I have dealt with decades of chronic fatigue on a daily basis.

If you are reading this, I hope that you can relate in your own manner as well. Even if you do not suffer from a chronic illness, or an invisible condition, you most probably have been sick many times throughout your journey of motherhood. Now imagine waking up feeling flu-like symptoms 365 days of the year. This is what chronic fatigue has been compared to. Now imagine being a mother in a constant flu-like state, all while keeping up with the journey of not just motherhood, but with work, your friends and your family…this is unfortunately what it is like to be a mother who isn’t feeing well, dealing with a chronic illness. And this is exactly why I decided to launch this website and blog. So that other mothers who do not feel well, do not feel alone.

One particular area that has been asked of me several times since the launch, is if I am going to touch on mental health in the sense of *postpartum blues. While I did not personally experience this myself, I do have a personal interest in bringing this topic to light because unfortunately I have seen firsthand how postpartum blues are not well-supported, and how mental illnesses are just as shunned as invisible illnesses. I partly believe postpartum blues are not well-supported because most people do NOT understand HOW to help. In general, people with invisible illnesses, (physical and mental) are sometimes shunned because you cannot see the problem. People see you looking normal on the outside and expect you to snap out of it. But when it comes to a physical or mental illness, like postpartum blues, one cannot simply “snap out of it”.

Here is an example: After my second child, I was bedridden at times due to extreme fatigue, I even dropped below 100lbs due to a peak in my illness (at the time undiagnosed and untreated). When my husband, friends and family tried to continue to push fulfilling our lives with child-driven activities, social engagements, etc, I could barely keep up physically. My husband would be on his way out the door for a day of golf with his dad and I would be in bed, while our baby and toddler were in their rooms waiting for mommy to drag herself down the hallway. His dad would often wonder why I was’t snapping out of it, as if I could help how my body was dragging me down. My body was failing me so much, that sometimes I would put movies on repeat for hours at a time, while I laid on the couch trying to grasp enough energy to go from making them breakfast to lunch and then dinner. When all this was happening, my physical inabilities, (which were invisible to others), wore my husband down. It even wore down some of our friendships because we said no to a lot of engagements. This got to a point where some friends started to question if I was postpartum. Which actually would not have been a bad thing. But you know what, they asked my husband, and not me directly. And they asked rhetorically. Without much support and more of a shun.

Honestly looking back, even though my issue was physical and not mental, bottom line, I wish these friends or family would have acted beyond the whispers. What would have really helped if I was postpartum (or not), was if they engaged in actively “helping to offer support” instead of “whispering or shunning the issue”. If they would have directly asked me, “are you doing okay? and is there anything they could do to help?”. And then my suggestion would be even more, to then follow up with tangible supportive and suggestive actions. “Can I take your older child out of the house for bit, while you rest with the baby?” Or “can I deliver dinner one evening and help with bath time ?” These suggestions can only take a few minutes out of your day to support someone else, whether it be mental or physical support. Looking back, I can see how the unspoken stigma of postpartum blues can really hurt a situation. And I can only relate to how people must feel when it comes to managing postpartum blues.

If you know someone who might be struggling with postpartum depression, reach out. Ask them how you can help. Offer them tangible supportive and suggestive actions, and if they say no at first, follow up! Don’t be afraid to ask more than once, to keep your line of communication open, and to follow up. Your two minute conversation with them could change the outlook for this person for an entire day or even week!

Did any of you suffer from postpartum blues? What was your experience? Did you have to deal with both debilitating affects of a physical condition while trying to stay mentally afloat? Did you hide your blues to friends and family? How were you able to get support? I’d love to hear your story.

 

*This article, as with all articles on this site are not medical advice. This is simply a personal account and one person’s opinion. If you are struggling with postpartum blues, or what you think might be postpartum blues, please seek professional help immediately. Talk to your primary care physician or obstetrician. Ask a family member or friend to help you with an appointment, or to accompany you to the doctor as soon as possible.

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News

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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News

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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Lifestyle

Ten Things to Never Say to a Mother with a Chronic Illness

Are you a mother with a chronic illness? If yes, then you understand that our body struggles with physical limitations that ebb and flow. If you are struggling with symptoms of a chronic illness, then you are inevitably going to have good days mixed in with bad days. Unfortunately, that is the nature of a chronic illness.

Over the years, I’ve come to the realization that there are MANY things you should never say to someone struggling with a chronic illness, in particular to a sleep deprived, physically exhausted, mentally despaired, frazzled new mother, who is also suffering from the compounding effects of a chronic illness…

Here are a few suggestions for what NOT to say to a mother with a chronic illness:

  1. “I am just as tired as you are.”
  2. “You don’t look sick!”
  3. “You MUST be feeling better because I see you are running around with the kids.”
  4. “Have you tried holistic treatment?”
  5. “Have you tried going gluten free? Dairy free? What about trying vitamins?”
  6. “Why can’t you bring the kids over to see me/us?”
  7. This coincides with 6. “Why can’t you do ‘x’ activity with us today – since you did ‘y’ activity with them yesterday!?”
  8. “I hope you get well soon.”
  9. “You look great!”
  10. “Thank goodness it’s not cancer.”

Have you ever been frustrated with something someone said to you about your health and well-being, in relation to your chronic illness? In a perfect world, wouldn’t it be nice if everyone knew the right thing to say to everyone, all the time? What are some things that you would rather hear?

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News

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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Lifestyle

The Benefits of Napping

Are there benefits of extra sleep for both children AND mothers with chronic illness?

To nap. Or not to nap. This is often a debatable and sometimes controversial subject in the world of parenting and motherhood. Although, it shouldn’t be…

Lucky for our children, both my husband and I have always aired on what is best for them, and not for us. Who would think!?

If our children needed to nap, by all means, we encouraged it, and napped they did. Lucky for me, I survived the early stages of motherhood with a chronic illness because our boys napped well into their childhood. It was almost as if their bodies knew that napping was not only beneficial for them, but that I really needed them to nap. Looking back, it was all a godsend…

With a little understanding of when my chronic illness was at its worst, I now know why it was so important for me to honor why my children napped. Not only was napping great for their growth and development, but during their early years, I really needed the downtime, and I especially encouraged napping at home. You see, putting my feet up for a break during the day was extremely important. It was one of the only things that kept me going, and just barely.

My girlfriends, and even family, however, thought it was crazy that our days were cut short, quickly running home for nap times. And the judgement was awful, the whispers from people and their perspective was even worse. Why was I so “anal, structured, and difficult”, because I “had” to bring our kids home for naps!? What they didn’t realize, or try to understand, was that naps were physically my saving grace. Nap time allowed for me to recharge, re-energize, and collect myself, for round two of chasing a toddler and rearing an infant for the second part of the day.

When my friends had their babies nap “on-the-go”, or had their toddlers “skip naps”, I believe my friends were healthy and capable of getting through the day WITHOUT much downtime. It wasn’t that we had opposing parenting perspectives. Or felt the need to compete for whose kid DIDN’T need to nap. But it was more that our families had two different sets of needs. I had(ve) a chronic illness and I now realize the difference. I hope they do now too.

But in the end, what is best for our family, may not work for the next family. And for our family, we have reaped the rewards of napping. The benefits for both myself and our children, have far outweighed the repercussions I ever received. So, your kid stopped napping when they were 1.5 years old? That’s okay, mine didn’t stop napping for a long time, and it was a win-win for our family.

And these days, if their body needs it, or if mine does too, napping becomes a household ritual. Even my husband and the dog enjoy a good nap.

Do you, your children, or family take naps? Are they structured at home? And do they help you physically get through the day? How is your napping perceived by family and friends?

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News

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).

Categories
News

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.

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Lifestyle

Judging a Mother By Its Cover

I am the picture perfect of health. And for some reason…since I look healthy, it is really hard for some people to understand that I struggle with a chronic illness. Unfortunately, looking healthy and normal, has its MAJOR disadvantages. It confuses the crap out of people.

I think people have a hard time understanding how someone who looks normal, is even sick, because people are so quick to judge. They judge you on your good days, and it is human nature to judge.

But, judgement is my biggest pet peeve. Because when it comes to having a chronic illness, many times, “chronic”, is also “invisible”. And even more so, “chronic” means “long term”. In other words, more often than not, you cannot see a chronic illness, chronic conditions do not go away, and most are not curable.

We are taught at a young age not to judge a book by its cover, yet, looking healthy makes it incomprehensible for people to understand that you are sick. In fact, it makes some people go as far as questioning the very illness that is debilitating your life.

Why is that? Why is it so inconceivable for someone to understand why your body cannot be failing you on the inside, while looking great on the outside?

Judgement is by far the hardest social dilemma for me. In the past, friends, and even family, have questioned the very issue of whether I am sick or not. And for someone dealing with a chronic condition and often times debilitating fatigue, this is the biggest slap in the face!

I think one of the WORST things that you can do to a person with a chronic illness, is to make them feel like they need to prove they are sick. To make them prove why they can do some activities and not others.

I had the pleasure and gluttony of watching the Real Housewives of Orange County this past season, and the famous Yolanda Foster went through a phase in her life where she not only had to battle her chronic illness at its worst point, but she also had to deal with the social stigma of friends not believing she was, in deed struggling with debilitating symptoms.

Do you ever feel like you need to prove your condition? To friends or family? What are some ways that you have had to prove to your friends and family that you are not feeling well?

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Lifestyle

Inspiration

Inspiration for a mother with chronic illness…

Inspiration comes in many forms. I feel like this specific inspirational quote has become my daily mantra…often people say to me, “I just don’t know how you’re doing this, you look great.” and “You’re so incredibly strong.”

But I can’t help but think — “what’s the alternative?”

As a mother, you really have no choice to persevere. As a mother, you never know how strong you are until being strong is the only choice that you have.