The Ballad of Zoë

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The first time Zoë used the potty, there was much rejoicing in our home. Praise the god of the Porcelain Throne! She’s going to be potty trained early! Little did we know that he laughed at our sacrifice of praise and set a curse upon our home. Zoë, it seemed, would continue on in her tradition of doing things her way and in her own time. She would spend the next year and a half not only failing to use the potty, but actively avoiding it. Wet diapers did not bother her. She hid when she pooped, and then lied to us about having pooped. But we knew she had pooped whenever she went absolutely insane. She would run around screaming or pick on Rachael more than usual.

It wasn’t all her fault, though. I was horrible at taking her on a regular basis. Even if I managed to keep up with it at the beginning of the day, I would lose all energy and motivation by dinner time. Whenever I tried her in underwear, she would inevitably have accident after accident for me to clean up. It took its toll on my fibro-weary body. This left me with no incentive to put her in underwear; keeping her in a diaper left me with no incentive to remember to take her potty.

We were to the point of wanting to enroll her in daycare just so they could do most of the training work like when Rachael was in daycare. None of the positive reinforcement incentives worked permanently. And we were running out of time with preschool starting in a couple of months. I was pretty sure that it would take a miracle for everything to work out.

Technology to the Rescue!
I’ve always been a firm believer in letting tv and video games raise my children. So the next natural course of action was to find an app to potty train my child. Actually, Mike happened to run across it: the Pull-Ups Time to Potty app.
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Image from Pull Ups app

When you get right down to it, the app is a timer with positive reinforcement games after each potty trip. It’s very simple, but it’s genius. The time automatically resets for you after each potty trip you log. You can adjust the timer to your child. For instance, if the timer says 1 hour 14 minutes until the next attempt, and you think that’s too long to wait, you can adjust the timer yourself. After a series of successful potty trips, the time span between each attempt increases.
Zoë loved the games after each successful potty trip. They’re extremely simple, but they make her giggle and deliriously happy. Games include play with Disney characters like Mickey, Minnie, Doc McStuffins, and Jake & the Neverland Pirates. One of Zoë’s favorites was a generic cowboy who had cactus needles stuck in his tush. She tapped the screen to remove them and then he did a little happy dance. Like a cute, little example of Pavlov’s dog, she would react whenever she heard the “Time to Potty” chime. Frankly, her reaction was usually one or running away or yelling, “No no noooo!” But reminding her that she would get a celebration game was enough to entice her to the potty.

Almost immediately after we began using the app, she stopped having accidents. Pretty soon, we were able to move her into underwear, in which she has had zero accidents! And the pièce de résistance: she is now letting us know when she has to use the potty!
I will love this app forever because it helped me train my willful 3 year old in less than a month. It was doable for me living with fibro; I never felt taxed by the potty trips. Its gradual nature allowed me to begin in Pull Ups and then move to underwear when I was sure I wouldn’t be cleaning up accidents every five minutes. And best of all? We’re not going to be out our preschool deposit and explaining to her for the next year why she wasn’t allowed to to to preschool!

This post is not sponsored. I just really thought you potty training parents, (especially spoonies) ought to know about it.

Why Spoonies Give Up

I decided that I had enough with my rheumatologist, (the second one I’ve tried thus far.) But who was going to manage my fibromyalgia care? I decided to try a medical group who has a special fibro care program, something that isn’t very common. Also available is complementary medicine and a med spa for massages and such. I called this week, told the scheduler why I wanted an appointment, and she told me the earliest appointment available was Saturday at 4 pm. Great!, I thought. This way Mike won’t have to work from home for me to go to this appointment alone.

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I wish I could go back in time and smack that scheduler up so she wouldn’t have set up a huge waste of time for me. It was abundantly clear that this doctor didn’t feel like being there at 4 pm on a Saturday. He also had no. fucking. clue. as to how to medically, (or relationally) treat someone with fibro. I’ll just do bullet points for how the appointment went.

– He didn’t take or look at the patient history, labs, and other test results I took the time to put together so as not to waste his or my time.
– It was pretty clear from his tone of voice that he didn’t understand why I had left my two previous rheumatologists. It was like he didn’t get why I thought my experiences with them were bad ones.*
– Diarrhea of the mouth began. Without asking any of my habits, he immediately launched into how people with fibro need exercise and I can’t spend all my time laying on the couch. I have to “use it or lose it”. I informed him that I have two young girls; I don’t spend all my time laying on the couch.
– He asked the basic “duh” questions: Where does it hurt? Is it joint or muscular? How’s your stress?
– He mentioned a few complementary medicine procedures, but then said he wouldn’t do any of them because it would hurt or it weirded him out.
– He told me that doctors don’t really know what to do and how to treat fibro.
– He criticized me for having to bring food in a lot for dinner, after I explained that I can’t cook as much as I used to because it hurts to stand in the kitchen for that long. It was mostly because he was concerned for the health of my children. (I explained that it’s just for Mike and me; we feed the kids different food from home.)
– He wrote an order for a sleep study. Rather than recommending a place, he told me they were everywhere and to just pick one.
– He said that the medicines I was on were about the most they could do for someone with fibro. He said that they do what they can medicinally, and then the patient just has to learn to live with the pain. I believe it was the long-winded version of “Suck it up”.

Finally, I just cut him off and told him what my treatment goals were. Specifically, I wanted to try any natural options available to cope with or alleviate pain. He referred me to their two naturopaths for that. He told me I would need to bring my big girl veins for the first appointment because they were going to draw a lot of blood because the naturopaths test for everything. He said going through that would be enough to make him not want to do it. I stood there in the room, arms crossed and staring him down. I was filled with rage, exhaustion, incredulity, and defeat. I screwed up my face and set my jaw so that I wouldn’t cry. That would be for when I reached my car.

Can you imagine if that had been my first doctor’s appointment for fibromyalgia? Can you imagine if I wasn’t confident in myself and my diagnosis? The ignorance and arrogance of our doctors can be a lethal combination for timely and appropriate help. So many journeys are stopped dead in their tracks because an insensitive doctor acts as though the patient’s problems would all disappear if they just took a walk everyday. Patients aren’t always open and honest with their healthcare providers for fear of being ridiculed, shamed, or made to feel crazy. When we feel as though there aren’t any safe havens, we stop trying. We end up enduring more pain than we should because the thought of another useless or abusive doctor’s appointment is more painful.

In this day and age, it is appalling how ignorant doctors can be when it comes to chronic pain. Millions of people live with it yet, only now, are syndromes like fibromyalgia beginning to be viewed as legitimate. Doctors who went to medical school more than five years ago, or don’t have any special focus or training with regard to chronic pain, are clueless. In my experience, cluelessness in doctors leads to doubling down on their ignorance and how much of a dick they are to you or how dismissive they are of you and your symptoms. Put simply, if they don’t know what to do with you, they don’t want to deal with you.

With such attitudes within the general medical community, it becomes incumbent upon spoonies to be their own advocates. We must surround ourselves with the support of loved ones and those who are on the same journey. We need to support organizations, like the NfmCPA, who amplify our voices when it comes to lobbying Congress for research dollars. We need to let our healthcare providers know when changes need to be made and not just accept whatever is handed to us. I have hope that the medical community will learn to help us. But we can’t just wish upon a star and dream. We have to make it so.

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*The reason I left my first rheumatologist:
At my first appointment, he prescribed trazadone to help me sleep. After a couple of doses, I began having intense suicidal thoughts and found myself yelling, out loud, to shout down the voices in my head telling me to kill myself. This ended up happening on a Saturday, so I left a message with a live person through the answering service, asking what I should do. I never received a call back. My primary care office ended up helping me out.
At the next appointment he fussed at me for calling on Saturday, I guess because I’m supposed to schedule my drug-induced mental breaks durning office hours. During that appointment he said he wanted to step down the Lyrica and replace it with Topomax. I asked if there were any side effects I should be concerned about. He shrugged and said, Only if you have glaucoma. When I got home, I researched Topomax. It looked like there was a possibility of some pretty horrible side effects. After that, I was done. The trust was broken, and I can’t have a professional relationship with someone like that.

The reason I left my second rheumatologist:
I actually stayed with her for about a year. I liked her at first. But it didn’t take long for the things I didn’t like about her to outweigh the good. She never remembered what we had talked about previously or what I was taking. I swear, she must have asked me if I had tried Neurontin or was taking a yoga class at three consecutive appointments. It was very difficult to get a word in edgewise with her. She tended to just steamroll you with her agenda. It seemed as though drugs we the only thing she cared about as far as treatment. The time I asked about natural options, she just handed me a pamphlet for a vitamin mix that is supposed to help with fatigue. And my weight. She was so fixated on my weight. No, I’m not a small girl anymore. The Lyrica and cupcakes made sure of that. She was bound and determined to get me on thyroid medication, even though my labs show that my TSH levels are within normal limits on two consecutive tests. (She also sort of fussed at me because I had my separate T3 and T4 levels tested when the order was just for TSH.) I expressed my unwillingness to add another medication to my cocktail while my levels fell within the normal range. She told me to take it and get yet another thyroid test. She also, again, told me that low thyroid will cause fatigue and weight gain. I’m like, you know what else causes fatigue and weight gain? FIBROMYALGIA AND LYRICA! I felt like I went with her as far as she could take me, so I’ve left. And I’m not the only one. I know others who have seen her and left because of her nonsense.

Mary’s Story

My friend, Mary Brünhilde, has been gracious enough to allow me to share her story of depression with you all. I have copied and pasted her story below.

Since Robin Williams’s death, I have a few friends who have posted some very sweet statuses, reassuring all their friends that if they are ever depressed, and need help, they will be there for them. This is a very admirable response to an tragic event like a suicide. But I want to put it into another perspective for you all now, by coming out of the depression closet.

I don’t remember a specific point where I became depressed. I remember feeling very intense emotions, and being a melancholy teenager, but who doesn’t? At that time those feelings only caused destructive behaviors, but not suicidal thoughts. The first time I felt bad enough to ask for help, was my freshman year of college. I got free counseling from graduate students in UNCG’s counseling program. It was enough to provide me with some coping skills, but never stopped the depression. There were good days and bad days. I didn’t want to believe that anything was really wrong.

After college I became increasingly volatile. I had no idea why I was so miserable, because if you looked at my life then, I had no reason to be. The sadness was a physical pain that I could feel, like a permanent body ache. I could function on a daily basis, but it was all an act, and a lot of work. I didn’t have money to pay for a counselor, so in desperation I signed up for a clinical trial of an anti-depressant that I saw advertised on TV. I figured it would get me some help for free, even if the drug ended up not working.

That clinical trial, and the doctor who treated me, probably saved my life. I actually was given the placebo (which I had a feeling I knew), and at the end of the trial the doctor said he would continue to treat me until I was better. He started me on a real anti-depressant, and counseling. I cried in the car after my appointments because I was relieved that someone actually believed that something was wrong with my body, and not just in my mind. After a few dosage adjustments, the medication worked really well. I began to feel happiness again when I smiled- it was like a plane flying out of the clouds, and like my lungs could finally fill all the way with air. Once my thyroid problems were diagnosed and treated, I felt like I had a new body and brain.

It would be great if that were the end of the story, but depression is not so black and white. I would feel good for a while, so I’d decide I didn’t need my medicine anymore. Then a few months later I would feel physically and mentally awful, and go back on it. Once I got pregnant, my new doctor at the University of Michigan spoke with me about weighing the risks and the benefits of staying on the medicine while pregnant, and nursing – so I just quit cold turkey (a big no-no). I suffered through, but this time the depression felt like I was standing behind a glass wall, watching the world happen around me. I used to call it my gerbil ball. I would laugh at your joke, and not feel any mirth. I would snap at people for the slightest annoyance, and become enraged at, well, anything. So I always went back to the medicine. Second pregnancy- did the same thing.

I never told people about my depression, because they were so judgmental. I’ve even heard a family member say the words “they need to just get over it” after hearing a commercial about depression on TV. I thought if I told people that I had depression, they wouldn’t want to be my friend, or wouldn’t hire me for a job. They would just think I was not tough enough to handle everyday life. Or just complaining about nothing. So it stayed tucked away in that one pill I took everyday….or almost everyday.

My current doctor looked over my health history, and had a stern talk with me about my pattern of deciding I didn’t need the medicine. I told her that I don’t want to be dependent on taking a pill everyday for the rest of my life, and she asked if I were a diabetic, would I refuse the insulin too? She explained that my brain needs this medicine to correct an imbalance- and it’s not shameful or anything I’ve done wrong. It is just how my body works- and if one pill a day is all I need, then I’m comparatively lucky.

I’ve never tried to kill myself, but trust me when I say that I understand why someone would. When your body and your brain hurt so much, and nothing you do makes it better, you just want it to stop.

So- why am I telling you all this? Why put all my dirty laundry out for all my friends and family to see? Because you need to know this about me. I’m not ashamed. I’m telling my truth, so that you can all keep your collective eyes on me. My village is spread far and wide- you are not my next door neighbors anymore -so from wherever you are, just know, and understand. God forbid one day I need serious help, someone will see it, maybe even before I do.

Lastly I have a challenge. This is not a bucket of ice water, or even donating money. I just challenge all my friends and family who have depression, to tell your truth. Notify your village. Help me help you. Share this last section with your story, and maybe if we all just keep an eye on each other, we’ll all be okay.

When it comes to mental illness, your words matter

Several nights ago, Mike and I were watching Who Do You Think You Are? We have gotten into the show because Mike’s been working on tracing and establishing our roots. The episode featured Gwyneth Paltrow tracing both sides of her family. What grabbed me in particular was the story surrounding her great grandmother, and what led to her neglecting her children. (The untimely deaths of her mother, brother, and 3 year old daughter. The death of her daughter was followed three weeks later by the birth of her next child.) I was disheartened by Gwyneth’s initial responses to this information. She laughs upon learning that her great grandmother was a hoarder. She goes on to refer to her great grandmother as “crazy” and “ambivalent” toward her children.

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What Gwyneth said troubled me in a couple of ways. The first involves how I identify with her great grandmother as a mom. I constantly struggle with the guilt and shame of not always being there for my girls because of my pain, fatigue, and irritability. Fibromyalgia causes pain that can prevent me from getting on the floor to play. The fatigue from the fibro and depression leaves me unable to keep my eyes open to read a book and slow to respond when they call out for breakfast from downstairs. The irritability from my fatigue and depression sends me seeking refuge from the noise and literal tugging from two different directions. If I don’t get away, I may lose my shit over something insignificant again.
The thing is, I want to be there for my girls all the time. I want to be a lucid, fully present super mom. Unfortunately, I can’t. The body is unable and, quite frankly, the spirit isn’t always willing. I wonder how much of that was present in Gwyneth’s great grandmother. I wonder if she ever looked at her kids and wished she had the strength to bathe them or clean up all the piles of newspaper. I wonder how often she wished her children and the world would just go away so she could have some peace in her mind and soul. I wonder if I will be misunderstood, if my mothering will be viewed through a lenses of neglect, ambivalence, and “crazy”.

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The next thing that troubled me was the language that Gwyneth used. The word “crazy” is used so casually in our world, without a thought to its implications and destructiveness. But for those who live with mental illnesses, the language and attitudes of others could literally be the difference between life and death. I’m sure you can imagine how hearing words like “crazy”, “unbalanced”, “weak-minded”, or “insane” coming from someone you trust would put a full stop on revealing to them the darkest, most vulnerable parts of yourself to ask for help. When people feel like they aren’t safe in turning to anyone for help, it could ultimately lead to a downward spiral of self-destruction that only stops when they can’t go any lower and/or they are tired of the spinning.

How do we fix it?
The stigma of mental illness must be wiped out! The stigma of mental illness is born out of misinformation and ignorance. This leads to fear. And what do people do when they’re afraid? They shut it down. They trivialize the thing they’re afraid of and push it away with words like crazy and “get over it” attitudes. During my freshman year of college, I admitted to a guy I was with how depressed I was feeling. His response? He basically told me to buck up, suck it up, and get over it. Just be happy.

Here’s what people need to understand. Mental illness is just that: an illness. The only difference between it and a broken leg is its location. You would never tell someone that they’re crazy and to walk off a broken leg. No one tells someone with cancer to just get over it. And just like with cancer, some people are lucky and make it through alive. Others are not so lucky.
Some people, like Robin Willams, lose their fight with mental illness and take their own lives. We must be careful in our attitudes toward suicide. Of course, suicide is never the best option, and it should never be made out to be as such. Many people, including me, believe it is a choice. But what is so often misunderstood is the kind of choice it is. It is not lucid. It is made under an incredible amount of duress. It is never made lightly. It is not made with a mind that is whole and well. And when you’re to the point of making that choice, you feel as if there really isn’t a choice at all.

We must not be glib with our words and attitudes toward suicide, especially if you have never experienced depression yourself or been close to someone who has. Saying that it’s a permanent solution to a temporary problem or that someone is a coward for contemplating or committing suicide will just hurt those who are already hurting and send them deeper into the darkness.

With the death of Robin Williams, depression and suicide are at the height of consciousness. Please, let us take this opportunity to be more understanding of others. Be slow to speak and quick to listen. Learn what causes depression, (Hint: it’s not a lack of faith or joy) what perpetuates it, and how to best help someone when, and even before, they ask for help. Realize that your words carry weight; an off-handed remark or pointed conversation can cause irreparable damage. Do not presume to know how someone is feeling or know their story simply because you experienced depression. And if you do hurt someone, make amends.

To those who live with depression: know that you are not alone in the world! We are many, we who suffer in silence for fear of being vulnerable, misunderstood, ridiculed, judged, rejected, and silenced.

If you are brave enough to share your story, share it! For all you know, you could be the faint light in the crushing darkness that saves someone’s life.
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If you would like to share your story here, please let me know. If you wish to remain anonymous, I will protect your identity.

5 Reasons Why Having Sex Every Night is Complete Bullshit

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Today, I read this piece in the Huffington Post about why you should have sex with your husband every night. I understand, and even agree, with the basic premise; it’s good to set your busy, child-run lives aside and make time for one another. After that is where the author, Meg Conley, and I diverge. She goes into detail about her thoughts at 16 of what a married sex life should look like and about why you should rock your husband’s world every night. Some of them aren’t thought through to their logical conclusions. Others reveal how Ms. Conley has bought right into sexist stereotypes of what all men need/want (*eye roll*) and how we women are supposed to fulfill them.
I plan on going through Ms. Conley’s post, reason by reason, and analyze what’s right about them, what goes a bit too far in the wrong direction, and what is just a stinky pile of fucking shit. (See what I did there?)

1) Banging your husband reminds you that, Man, I feel like a woman.
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I agree with Ms. Conley. There is nothing like being a mom to make a woman feel like nothing more than a gross, unshowered robot that has a never-ending list of tasks to complete.

1. Get ready for work/work from home/get ready to be a stay at home mom.
2. Feed whiny, cranky kids. Get them ready for school or daycare.
3. Complete projects at work/deal with parent volunteer nonsense at school/do the dishes and laundry, pick up toys, clean a potty accident, grocery shop.
4. Pick up kids.
5. Feed whiny, cranky kids their dinner.
6. Make sure homework’s completed.
7. Attend meeting for school, church, community organization, etc.
8. Put sleep-happy, crazy ass kids to bed.
9. Flop/finish work project/clean up hidden potty accident behind the chair.

With all these things, I still don’t have trouble remembering I’m a woman. (My cramping uterus, bleeding vag, and floppy breasts itching because cookie crumbs are stuck in my bra take care of that for me. And as a friend of mine said, Delivering a baby made me feel much more inherently woman than doing the deed.) No, I have trouble remembering that I’m a separate entity, that I’m Julie. I’m more than a wife and mother. Perhaps I need alone time to write or just flop. I don’t have to accomplish feeling like a woman by getting all bow chicka wow wow with my husband. (Also, I could just feel like a woman by eating chocolate, reading Fifty Shades of Grey, or baking a pie while barefoot.) In reality, if you’re forcing yourself to have sex when you really don’t feel like it, your hubby will just become another item on your “to do” list.

Another thing I take issue with is the implication that only sex with a man will make you feel like a woman. What about women who aren’t married or in a relationship? What about gay women? Are these women somehow inherently less of a woman simply because she doesn’t “do it” with a man/husband? There seem to be a lot of conservative, heteronormative underlying assumptions here.

2) Men need sex daily, nightly, and ever so rightly.
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This one just makes me want to bang my head on the table repeatedly. It’s SO sexist! It reduces men to nothing more than overly simplistic algebraic manquations.

Women need any number of criteria met to feel loved. Men are far simpler. They need to be fed, they need to be appreciated, and they need to have sex. That is it. Really.

Anyone who’s been to an evangelical church for more than 5 minutes or watched a formulaic married couple sitcom has heard that garbage before. In reality, men and women are no different in that they want purpose. They both want to achieve dreams and goals they’ve set for themselves. We all want to be nestled comfortably in the self-actualization top of Maslow’s Hierarchy of Needs.
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Wikipedia.org

I will grant that, yes, some men are that simple. But to generalize this to all men is just silly. Just like women, men are complex individuals with unique needs. For instance, Mike may have times when seeing my body is enough to put him in the mood. Other times, he needs me to be there for him emotionally and intellectually first. Wined and dined, if you will. I agree with Ms. Conley that men need love and appreciation, just as all people do. But, “…let the poor man see you naked,” is:
A) Not always the best way to go about that, and
B) Objectifying. My body is not compensation for him working to pay the bills and taking care of the kids he helped to create.

And it’s not like I’m sitting around all day eating bon bons. So, come on, sugar. Hang brain for mama.

3) Be a Taylor Swift song.
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From video for Love Story

I don’t have much quarrel with this one. Remembering why you married someone in the first place is always a great idea. There probably was a carefree moment before mortgage, kids, illnesses and deaths that we should all tap into. Before Mike and I had kids, there were Saturdays when we’d spend half the day laying in bed together just being.
But here’s the thing. People change. Marriages change. Life changes around you. You and your spouse are on this journey together. I would say it’s wise to tap into why you’re married to this person now. A roll in the hay with reckless abandon like when you were a shiny and new couple is awesome! But if you need to do that all the time to take yourselves away from the here and now, you may have bigger problems than not having enough sex.

4) Sex Relieves Stress
I didn’t have a witty title for this one.

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YES!!!!! (Cue When Harry Met Sally throwback.)
Sex can totally relieve stress! When your body is shivering and flooded with orgasmic bliss and your chest is heaving from all the exertion of making the beast with two backs, you don’t care about a damn thing. You’re not worried about a mortgage refinance, a deadline at work, or hearing back about medical test results. You are connected and in that moment with your partner.

The problem I have with Ms. Conley’s argument is that she creates a straw man. It’s either do something destructive or bang. Ms. Conley seems to forget about other things which relieve stress.

Exercise
Meditation
Masturbation (if you’re too tired for the physical exertion of sex)
Grabbing a drink and catching up with friends
Something creative like painting, dancing, writing, or creating pottery while listening to Unchained Melody

Then, there are those for whom sex is stressful.
There are survivors of sexual assault and abuse.
There are people who experience pain with penetration or pain from the act, beginning to end. (With my fibro, sex isn’t always comfortable, or it downright hurts.)
There are those who feel shame during sex because of puritanical upbringings.

While I’m sure Ms. Conley didn’t mean to overlook those people, it does reveal a lack of understanding or sensitivity to these issues. Sometimes sex relieves stress; sometimes it’s not that simple.

5) Girls just wanna have fun!
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The argument: Sex is fun.

So is playing a drinking game while watching Keeping Up with the Kardashians and drinking every time someone says something stupid. I eagerly await Ms. Conley’s follow up article about why we should do that every night.

But, seriously, I don’t really argue with this one. At the end of the day, we could all afford to let loose and knock boots a little more often. Just make sure that if you are having sex with your spouse, it’s because you want to, and not because your sex life isn’t exactly what you pictured when you were 16.

The Broken Ones

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Today, I’m recovering from the beach vacation I took with my family last week. My spoon deficit is deep, but treasured memories abound. We jumped waves, paddled in the pool, and built sand forts. At times, I think I had more fun in the sand than the girls. But as far as anyone was concerned, I was only sacrificing my dignity in the sand for my kids’ happiness.
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At least once during our stays there, we have to collect seashells. One day last week, Rachael and I set off down the beach as high tide began receding. We were headed toward the point of the island
because we tend to find better shells there; they’re less picked over. I was on a search for beautiful and unique shells with which I could craft. Rachael, on the other hand, was doing her best to bring home every clamshell from Emerald Isle.

Occasionally, Rachael picked up a broken shell and asked, What about this one? Unless it was a unique shell or especially pretty, I would reply, No, it’s broken. The more we repeated the exchange, the more perturbed Rachael became. Finally, she asked with all the exasperation she could muster, WHAT’S WRONG WITH THE BROKEN ONES?!?! I didn’t really have a good explanation. After all, it’s pretty self-evident, right? The thing that’s wrong with the broken ones is that they are broken. They’re imperfect and, therefore, useless.

Of course, that wasn’t the end of it. Rachael’s question set my thoughts bustling about, as so many innocent questions from our children tend to do. Just what was so wrong with the broken ones? Rachael certainly still found value in them. Somewhere along the way, I must have learned that broken things are no longer good. This notion creeps into our thoughts about ourselves and others; anything other than perfection is not worth our time and attention. To be broken means that we don’t have a place and purpose, that we ought to be cast aside and set adrift.
This mindset is a poison that spreads through us, especially once we learn that we are chronically ill. Some of us let the brokenness take over so that, in our minds, that is all we are. What we forget about ourselves is that there is still tremendous beauty within us in spite of, or because of, our imperfections. When we choose to focus on what is still right with us, we are able to see what we can do. We are able to see how we fit in the vast landscape of our experiences. Just like those broken shells…

Sigh. You guys, the more I kept trying to write the last paragraph, the less I was able to come up with the right words and imagery. It felt forced; it was kind of like writing a book report with a mandatory topic that everyone knows is bullshit. The fact is, being a “broken shell” fucking sucks. Sometimes, all you feel is the brokenness, and you can’t see past all your cracks, holes, and uneven edges. For myself, I know I spend plenty of time focusing on why I can’t do something. I can’t exercise because it hurts. I can’t play with my kids because I’m exhausted and just want to be left alone. I can’t volunteer for the charity fun run bake sale carnival extravaganza because my energy and mental capacity are drained. The way others may sometimes treat us in light of our illnesses demands attention to the negative feelings we so often push down and ignore. When we’re excluded, cast aside, or put down, it’s so easy to retreat and allow thoughts of what’s broken to consume us.

I think that’s why it’s so important to acknowledge and accept what’s broken about ourselves, but refuse to let it be the only thing by which we are defined. I like to say that I live with fibromyalgia, rather than I suffer from it, because fibro isn’t all that I am.

I’m a mom.
I’m a wife.
I’m a geek.
I’m a gamer.
I’m a student of things culinary and confectionary.
I’m a writer.
I’m a creative.
I’m opinionated.
I’m a loud mouth.
I’m an introvert.
I’m a political junkie.
I’m a person who goes overboard to make others happy.

Oh, yeah. And I have fibromyalgia.

When we focus on the good, whole parts of ourselves, it becomes easier, I think, to accept what is broken. When we see our value and beauty, it becomes easier to have an attitude of, “Well, fuck them,” and go on our merry way when we are cast aside. It becomes easier to ask, “What’s wrong with the broken ones?” and reply, Not a damn thing.

Rachael’s Frozen birthday party: Doing what frozen things do in summer

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We decided on a Frozen theme for Rachael’s birthday party this year because we knew no one else would be throwing a Frozen party and themed party supplies would be readily available and not marked up.

But seriously, we knew we wanted to have her party at our local community center/pool. It is inexpensive, as venues around here go, (did I just refer to it as a venue? Wow; that’s obnoxious) it had plenty of room, and Rachael adores swimming. The angle was along the lines of Olaf wanting to do what frozen things do in summer.
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You’re Invited!
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I couldn’t buy the ready-made invitations where you just fill in the blanks. First of all, that would be too easy and not cause anyone angst or heartburn. Secondly, none of the invitations out there fit with the theme. All of them had either Anna or Elsa or just Elsa posing like the menacing snow sorceress she is. Oh, and there were the invitations which included Hans, standing all happy with the group. My reaction was, Um, have you seen the movie?

My approach to the invitations was to include the colors associated with both sisters. The blue, textured paper and the fuchsia ribbon are similar to the colors of Anna’s winter outfit. The snowflakes, of course, are linked to Elsa. I used a snowflake punch to create the three light blue snowflakes. I added a jeweled snowflake on top to create some dimension and sparkle to the snowflakes. And, of course, Olaf had to be included on the invitation.

Make with the cupcakes, lady.
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We all know what kids look forward to the most at any birthday party: the cake. I decided to go with cupcakes for the sake of simplicity. I had no desire to pretend that I have the skill with fondant that others have or pay for and post on Pinterest. It’s also easier to make enough to accommodate a large group of people.
Rachael had specifically requested chocolate cupcakes. I also wanted to have vanilla for those who don’t like chocolate. I decided to use the chocolate cake recipe from Martha Stewart that I used for Rachael’s 2nd birthday. Besides being one of the best chocolate cakes I’ve had, it’s so easy! It’s a one bowl recipe; mix the dry ingredients together, then dump in the wet ingredients and mix until combined. No creaming butter with sugar. No adding the flour and milk alternately in three additions.
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For the vanilla cupcakes, I used Old Faithful. Rachael requested that they be blue. I did a trial, layering different shades of blue. I wasn’t entirely a fan of the look, so I decided to just stick with one shade of blue.
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This is why we do trial runs, kids.

I felt like the final products turned out delicious and beautiful. Everyone seemed to agree.

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Vanilla buttercream and Sixlets

I also made some fondant snowflakes to garnish some of the cupcakes. The kids really loved them. One of the girls asked me, before we had pizza, if she could have one with the snowflake. The great thing about them is that they look so complicated, but they couldn’t be easier.
I purchased a set of four stamps from my local candy store, Fran’s Cake and Candy. This is the set I used. I simply rolled out white fondant to no more than 1/4 inch thick on a surface dusted with cornstarch. (You can also use powdered sugar. I’ve found that cornstarch gives a better non-stick result.) Dust stamps with cornstarch as well. Press down the spring-loaded button, hard, to stamp. While pressing the button, push the cutter portion into the fondant and wiggle it until the shape comes free. If the fondant remains inside the stamp, pressing the stamp button will release the shape. Allow shapes to air dry and harden.
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I wanted to add a little sparkle, so I used edible glitter spray. Make sure that when you use the spray, you cover the area around where you’re spraying. It does wipe off of surfaces easily, but it will fly everywhere.
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I wanna stuff some chocolate in my faaaaaace!
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Putting labels on everything seems to be a thing. I don’t mind it if it’s a sign card so people known what a particular food is but, otherwise, it just kind of annoys me. (The trends this year was to label carrots as Olaf’s Noses and bottled water as Melted Snow.) There is one bandwagon I jumped on, however, because it’s right in the movie. We needed chocolate truffles, and they had to be labeled!

Strawberry Cheesecake Truffles
The first set of truffles I made were Strawberry Cheesecake truffles. I did make one modification. I was disappointed by the lack of strawberry flavor in the original recipe. It just got lost in the cream cheese. So I added an additional 1 tablespoon of minced strawberries, and that did it. The sweet tang of strawberries burst through the richness of the cream cheese. The graham cracker crumbs added a nice, sandy texture.
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Lemon Chiffon Truffles
The next set of truffles could not be simpler, and they sound lovely and fancy enough for a royal ball.
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These truffles are creamy, yet light and refreshing because of the lemon zest. One recipe does not make very many, so I doubled it on the next go round. I found that the zest of one large lemon is still sufficient for a double batch.

Cookie Dough Truffles
Everyone loves cookie dough. I love the crunch of sugar mingling with the sweet dough and slightly bitter burst of the chocolate chips. I love it even more when I’m not risking salmonella poisoning from raw eggs. In place of eggs as a binder, this cookie dough truffle recipe uses sweetened condensed milk.
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If any of these truffles begin to soften while coating them in chocolate, stick the tray back into the freezer for several minutes. You can maximize your dipping time by waiting to pull your truffle filling out after your chocolate has melted and you’re ready to dip. Also, while you can melt your chocolate in the microwave, I found that using a double boiler helps to maintain melted chocolate. To dip, simply place the truffle filling into the melted chocolate. Use a fork or spoon to roll the filling around for even coverage. Retrieve the filling with a fork, and tap the fork against the side of the bowl or pan to remove excess chocolate. (I found that tilting the fork back and jiggling the truffle to around the center of the tines works best for maximizing the removal of excess chocolate while maintaining a stable surface on which the truffle sits while you tap the fork.) Using the blunt side of a knife, carefully slide the truffle onto a cookie sheet lined with parchment paper or aluminum foil. Try to place the knife slightly under the truffle to slide it off. If a large amount of chocolate pools underneath the truffle, called a foot, then you have not removed enough excess chocolate. Don’t worry, though. You may gently snap off the extra chocolate once it has set. If you wish to add any decoration or pipe any chocolate onto the truffle, do so before setting the truffles in the refrigerator. Once the truffles have set in the fridge, you may store them in an air-tight container in the fridge or you may place them in a freezer safe bag and gently lay them in the freezer. I was relieved to find that these truffles could be kept frozen until ready to serve, so I could make them well in advance of the party.

A bit of a fixer-upper
The room we used for cake and pizza was the room in which Rachael had her gymnastics class, so I needed a simple way to bring in the Frozen theme that wasn’t just a plastic Frozen tablecloth and blue cupcakes. Clearly, recreating Elsa’s ice palace was out of the question, (although, given the time and resources, you bet your ass I’d have tried it.) The food table was going to be the best way to achieve bringing in Frozen elements in such a large room.

The Fountain
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I knew I wanted to recreate the fountain in the courtyard that Elsa accidentally froze, but I only wanted to give the impression of the fountain. I figured that would be a simple, yet dramatic, table centerpiece. I found this Sumbawa Grass at Michaels. I spray painted it a light blue, and then I accented it and covered any parts that I missed with white, multi-purpose craft paint. Once dry, (and they dried very quickly) I spray painted the pieces with glitter spray paint, which simply added some subtle sparkle. (And after smelling the glitter spray paint, I feel like I finally understand the smell of every vocal jazz singer and amateur, teen gymnast ever.) I found a great blue vase at Home Goods for $12! I filled the vase with glass accents I still had leftover from my wedding, making sure to add enough to that my pieces were secure and rising high enough beyond the rim of the vase. Finally, to add a bit more dimension and highlight the sparkle, I placed a bendable tree of LED lights in the middle.
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We didn’t manage to get a picture of it at the party, but we received many comments on how cool it was.

Signage
My husband, the comedian, is responsible for the next two decorations. He suggested that we place a sign on the table that said:

Wandering Oaken’s Trading Post and Snack Bar

He also said we should fill a bowl with Swedish fish and label it “lutefisk”. So we did. And it was awesome!
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Even though he has so many bad jokes and groan-worthy puns, he strikes gold every once in awhile.

Please enjoy this complimentary bag of stuff
While roaming the Pinterest to get favor ideas, (because I really hate giving people cheap crap that will either be thrown away or annoy the parents to no end) I found baked marble necklaces. Look it up. They’re really cool! But Mike was afraid that I’d go all Ralphie and put my eye out somehow. Fortunately, before I went and did them anyway, he came up with a much better idea: fire crystal necklaces. I’d be able to tie in the oft overlooked trolls, create something that was unique, and hopefully give the boys something that wouldn’t make them scrunch up their noses and say, That’s for girls.
I was able to find different types of crystals in the bead and jewelry aisles at Michaels. I used really thin elastic cord, (0.5mm) to string the beads because it fit through the thin holes in the crystals and would potentially lower the choking hazard risk for some of the younger kids.
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Printable tags

I was able to make the next favor on the cheap. Homemade play dough is easy and cheap to make, and it always a hit with kids. I found the recipe for this particular dough here. If you’re making dough from this recipe for a lot of people, I recommend doubling, quadrupling, (or more) the recipe. For those who have never made homemade glitter play dough, here are a couple tips.
1) Never walk away.
You do need to constantly stir, skim the bottom, and scrape the sides to avoid a burned skin forming. If you’ve ever made it, it’s kind of like making Cream of Wheat. Fortunately, it only takes a few minutes for it to come together, so you won’t be stirring long.

2) Get it out of the pot quickly!
This dough came together almost instantly. One second it’s liquid, the next it’s a giant dough ball. Have a pan ready to dump the dough onto. The longer it stays in the pot, once it has come together, the more likely it is for the dough to change color and burn.

3) You’re going to need glitter. Lots of glitter.
I was surprised at how much glitter was needed just to make the dough mildly sparkly. I patted the dough to a medium thickness and covered the surface with glitter, (I used both fine white and blue.) Fold, knead, repeat. Continue until you reach the desired level of sparkliness. I suggest pulling a portion of dough off, forming it into a ball, and judging the sparkle level that way.
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Zoë enjoyed helping pat the dough. She played with it as I packaged it saying, “Look, mommy. Anna’s footprints in the snow.”

“But, Julie,” you say. “Don’t glittery things fall into the ‘will annoy the parents’ category?”
Not this dough. Once the glitter was mixed in, it did not get on hands, clothes, or furniture.

I had several empty baby food jars that I had saved for crafting purposes from when Zoë was a baby, so I decided to package the dough in those.
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Rachael said it was the best birthday party ever! I hope this was helpful in throwing a Frozen birthday party for your prince or princess, and that they say the same to you!

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