“Why Does Mommy Hurt?” party

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Last Sunday, I had the unique privilege of attending a party celebrating the release of the children’s book, Why Does Mommy Hurt?* Written by fellow spoonie and Northern Virginian, Elizabeth Christy, the book is meant to explain fibromyalgia and chronic illness to young children. While there are books which explain different types of illnesses, and even death, to children, there is a void in the market of books which explain chronic pain to children. The lack of children’s resources on chronic pain is quite astounding when you think about it; over 100 million Americans live with some form of chronic pain, many of whom are young parents.

Megan, over at Megmess, and I decided to go together. (My social anxiety and I sure as hell weren’t showing up alone.) The party was held in the ArtSpace in Herndon. It was an intimate gathering of family, friends, KickStarter backers for the book, and a few of us who took Elizabeth up on invitations to the private event before the public book signing. As petite and delicious hors d’oeuvres were passed, I spoke with other spoonies and met Liz Jones, curator of dullesmoms.com . After some time passed, Elizabeth stood up to give a moving speech about her journey with the book and to thank her supporters. Following Elizabeth was special guest, Jan Chambers. A sort of rock star in the chronic pain world, Ms. Chambers is the President of the National Fibromyalgia and Chronic Pain Association, or, NfmCPA. I shifted uncomfortably in my seat, (sitting up straight and keeping one’s thighs together because they are in a dress is murder!) as I listened to Ms. Chambers give a speech that I had expected: advocacy for the chronic pain community and her own personal story with fibromyalgia. But, then, she spoke about something I did not expect. I did not expect to hear about her experience of role reversal with her children. I never expected to tear up as she recounted how one of her daughters revealed that she didn’t want to take care of her sick mother anymore. I teared even more as she assured us that a goal of just spending one hour a day of quiet, entertaining time with our children was enough. One of the last things I would have ever envisioned was receiving a hug from Jan Chambers upon telling her that I am a young mother and that her words were so important for me to hear that night.

I struggle as a mother to two young daughters. Children are difficult enough to raise as it is without the setback of debilitating pain and fatigue. Sometimes I’m able to engage with them by spending the day with them on an outing or going for a walk. Other days, I’m able to cringe through the pain of being on all fours on the floor so Zoë can have a horsey back ride. Days like Tuesday find me completely useless. I was only able to be awake and upright long enough to take Rachael to and from her acting camp just down the road and to make lunch.
That’s the reason why Ms. Chambers’ words were so important to me. It was encouraging to hear someone, who had lived through the same illness as a young mother, say that I am enough for my children. My girls and I can spend time snuggling, reading, and engaging in the quiet activities that let them know that, even though I’m sick and can’t always do much, I love them and they are important to me. Her words also reinforced my approach to parenting while living with a chronic illness. The last thing I ever want to do is to allow a role reversal and let the girls take care of me. It’s not their job. This illness has already stolen a healthy mother. I refuse to let it steal their childhood too.

Having a mother who lives with a chronic illness has, I think, allowed the girls to practice empathy. Each day shows them that, while their needs are important, their needs are not the only needs. Shockingly, the world does not revolve around their adorable, egocentric selves. I feel like, Why Does Mommy Hurt? has also helped them to understand that they are not the only ones who have a chronically ill parent. More importantly, it helps them understand that there are other kids just like them. There are other kids who need to be patient because their parents can’t do things quickly. There are other kids who help around the house because their parents can’t do everything. (Rachael says I could if I were an octopus.) And most importantly, there are other kids who feel sad, angry, and frustrated because their parents aren’t able to always engage with them in the way they want.

Why Does Mommy Hurt? is one of Zoë’s favorite books. Admittedly, I have used the book to help remind her to be helpful and perhaps calm her Snacken tendencies. I learned just how much Zoë had identified with the book when I asked her to be my helper one day. Her reply referenced Elizabeth’s son in the book.
“Just like Jimmy?” she asked.
“Yes. Just like Jimmy.”

*The book is also available in Kindle format.

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Models off the runway

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I often catch myself beginning to say, or actually saying, something negative about my body in front of my girls. I make a conscious and concerted effort not to, but every once in awhile, something will slip out. You see, I don’t want to pass on a negative body image and stereotypes to my girls. Yes, they’re going to be getting it everywhere else as they grow up. That makes it all the more important for me to be a refuge from our culture’s body standards lunacy. I’m the one who is going to set the tone for the rest of their lives on what is and isn’t important about themselves. If they see or hear me being neurotically concerned about what I look like, they’re going to learn and model that behavior as well.

This has become even more difficult with the onset of my fibro. Medicines make me gain weight without any change in my diet. They make me extra hungry, too. They make my skin break out. Fibro makes it difficult to exercise at all, let alone in any way that would actually change my weight or muscle tone.

So, I’ve been working on that, for myself and my daughters. My friend, Megan, over at Megmess articulated all of this perfectly. I had been thinking about all of this lately, and then she hits me with this perfect post. It very pointedly asks the question, How can I teach confidence to my daughter when I don’t have any myself?

I do want to note, that I think this is also important behavior to model for boys, too. It’s important, especially in the sort of rape culture we live in, to not reduce ourselves to our bodies and the way they look. The last thing we want to teach our children is that we are only valuable if we have perky breasts, flat stomachs, and thigh gaps.

What do you do to model confidence for your children? What, if any, impact has chronic illness had on your self-confidence? Have you found a way to fight back against low self-confidence?

That’s got spam in it!

This past weekend, we Americans celebrated the 238th anniversary of screaming, You’re not the boss of me!, at King George. To my fellow compatriots, I hope you had a wonderful long weekend of the things that seem to bind us together: cookouts, beer, and shiny, sparkly things that go boom. To my British readers…….it’s only awkward if we let it be awkward.

I have several different blog posts outlined in my notes app, but I have waaaaay to many things I’m ignoring right now that I need to get done this week. So, for now, I’ll just spam you with a few pictures and videos from our 4th weekend.

We visited Mike’s family in Greensboro, NC, site of the Battle of Guilford Courthouse. The Battleground Park is literally right next door to his parents’ neighborhood, so we had an opportunity to walk through the extensive park, visit some encampment reenactors, and periodically hear cannon blasts throughout the weekend. It was fun to visit the encampment. There was one little girl, just a little older than Rachael, who was so excited to see little girls coming to visit. She was delighted to lead us around, show us her tent, and answer questions.

We also visited the nearby Science Center and Aquarium. The aquarium is a recent addition. It’s small, but well done. They have a bubble in the otter exhibit that allows you to be inside of it. It was super adorable to watch the baby otters crawl all over the bubble, trying to figure out the weird heads in their space.
The aquarium, along with the decent sized zoo in the back, is home to a couple of animals I need now that I’ve seen them.

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Fishing cat. Not only is it adorable, it could bring you dinner!

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A baby gibbon. IT’S SO FLUFFY! And, it has more strength in one of its fingers than I have in my entire body.

While it is home to cute, fluffy things, it’s also a place where one may be confronted with hard truths that make you giggle like a 12 year old in public.


In my defense, I was not the only one filming tortoise porn that day.

Later that evening, we grilled burgers and then took girls to see their very first live firework display. The girls were so thrilled, and the fireworks did not disappoint. We all did the proper ooohing and ahhhing. Zoë breathlessly stated the obvious, “This is amazing!” while Rachael got all philosophical with, “Fireworks could not replace the beauty in this girl.” Mike and I were rewarded with a burst that was shaped like a cowboy hat.

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By Saturday, the fibro had caught up to me and was making me its bitch. I could barely walk with feet that felt like it had broke bones and leg muscles tight enough that you could bounce a quarter off of them. But I went ahead and soldiered through to the Children’s Museum. I was in misery, but little moments like these make it all worth it.

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It’s not business. It’s personal.

Women, unable to travel hundreds of miles for access to family planning healthcare and access to abortion. Women, using Cytotec to induce abortions because their legal access is severely restricted. States, enacting laws that require a waiting period before abortions. States, requiring a woman to undergo an invasive, medically unnecessary ultrasound before allowing a woman to obtain an abortion. The Supreme Court, ruling that a buffer zone around abortion clinics, which allow for the safety of the women and employees entering the clinic, is unconstitutional because it infringes upon the First Amendment rights of protestors to initiate, “personal, caring, consensual conversations.” Employers, refusing to pay for contraception coverage because they erroneously believe certain types of contraception to be abortifacients. The Supreme Court, siding with the employers.

Yesterday I spent the day reeling and blowing up friend’s Facebook feeds with stories about the SCOTUS Hobby Lobby decision, which allow closely-held companies, (Chick Fil A is an example of a closely-held company. It’s not just small companies,) to deny women access to contraception via insurance coverage if they have a sincerely-held religious objection to the contraception. The ruling was narrow, so as to make sure that only contraception, (for now) is affected by the ruling. Things like vaccinations, blood transfusions, and anti-depressants are not included as things that can be denied because of a sincerely-held religious belief. Why? Because it is clear that the majority on the ruling, all five of them Catholic, are logic contortionists who wanted this to just affect contraception. It is also of note that Chief Justice Roberts stated that it does not matter if the sincerely-held belief is factually incorrect, so long as it is sincerely held.
At the end of the day I told Mike that I feel like we were moving backward for women. That is my sincerely-held belief. Still, in 2014, healthcare decisions are not solely between a woman and her doctor; five men have the power to deny access to contraception to women in the United States.

After that, I envisioned the five justices dancing a kick line to “Every Sperm is Sacred”.

It’s not academic
Many people are having debates about this ruling online. For some, it’s purely academic. For one, they are not women, and so would never have any personal use or need for contraception. Some of them just want to debate the minutiae of law and logic. I saw one woman suggest that it was a political issue. I suppose that’s true for some people. Conservatives have generally sided with Hobby Lobby because they are either against the use of contraception, they believe IUDs and the morning after pill to be abortifacients, (they aren’t) they believe a company should be allowed to pick and choose what benefits they pay for, even if it leads to discrimination, (and it does. For instance, vasectomies are covered with Hobby Lobby,) or all three. Liberals tend to side with women and their right to treat their body as theirs, along with the medical decisions made for it.

But for millions of American women, it’s not just something to argue about. Their lives, and the quality of their lives, are at stake. In one fell swoop, five Supreme Court justices placed in jeopardy reasonable, affordable access to contraception. I don’t know how that doesn’t make all women angry. It’s like going back to the days when contraception was first available; only married women could have it, and they had to have permission from their husband first. Ladies, this is a manifestation of patriarchy, pure and simple. This is not, at the end of the day, about religious conscience. This is about having the ability to exercise control over what women do and do not have access to.

Those who would argue, (Matt Walsh) that it doesn’t prevent women from getting the contraception, they just have to pay for it themselves, are clearly living in La La Land. If you’ve ever worked an hourly retail job, you know that coming up with over $3000 to pay for an IUD just isn’t going to happen.
Some offer a solution of simply finding another job. This thinking is La La Land adjacent. I sincerely doubt that a majority of the women working there turned down a plethora of employment opportunities because, ever since they were little girls, they dreamed of working at Hobby Lobby.
There are those who wonder: Why is contraception so fundamentally important? Why is this worth fighting over? There are a few reasons. It lowers health care costs. Think about it. A five minute office visit to insert my IUD costs significantly less than the alternative: invasive surgery to ablate my uterine wall, which may or may not work, so I’d still need to use birth control because pregnancy would be dangerous. And if that didn’t work, I’d need a hysterectomy and medical care to help me undergo early menopause. When used as birth control, contraception helps to avoid unplanned pregnancies, which avoids costs related to hospital births. If that child were to have any mental or physical health issues, insurance would then need to pay out for any medical care that unplanned child needed.

Another reason is that is helps to improve the quality of life for women. Plenty of uterine, ovarian, and hormonal issues are solved with the use of contraception, such as: Polycystic Ovary Syndrome; adenomyosis; fibroid tumors; endometriosis; ovarian cysts; amenorrhea; prevention of endometrial and ovarian cancer; alleviation of PMS, heavy periods, and acne. For instance, my hormonal IUD treats my adenomyosis. Without the IUD, I would continue to double over in pain, both during and in between my periods and bleed in between my periods. When I would have my actual period, my flow would be so heavy that it would cause me to become weak and nearly pass out. This is because it liked to gush out all at once at times like first thing in the morning. Cleaning myself after using the toilet would look like I had just committed murder because my hand would be so covered in blood.

Okay, but there are still women using contraception solely as birth control. Those slutty sluts should just abstain from sex.
Okay. You win. You’re absolutely right. Abstinence is the only way to prevent pregnancy. We should totally force only women to abstain by taking away their decision to use birth control, even if it would hurt women because of course they’re not going to stop having sex just because they don’t have birth control. (Mass graves for children of unwed mothers in Ireland support that.) And if only women are forced to abstain, that will totally prevent unwanted pregnancies from rape and incest. Also, all the married women for whom pregnancy would cause serious health issues, up to and including death, could you go ahead and just stop having sex with your husbands? Thaaa-aaaaanks!

So you see, for me, this Supreme Court decision isn’t academic or political. It’s personal. It’s personal for me as a woman, as a user of contraception for medical and birth control reasons, and as an American citizen. It’s personal because now I have to worry about whether or not it will ever affect me and my insurance coverage. It’s personal because this Supreme Court decision essentially affirms that women are second class citizens. We are second class citizens whose healthcare decisions may be decided by someone else, whose only vested interested is to have control. It also affirms that pointed and blatant discrimination of us second class citizens is A-okay.

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