I Feel the Heartburn

2016 has had the most bizarre and fucked up election cycle I’ve ever seen.  My fellow Americans and I have had an unusual amount of anxiety over this election, particularly over Donald Trump, to the point where therapists have seen an uptick in their appointments, specifically because of election-induced stress. I didn’t plan on voting Republican this year, but I at least like the other candidate to be a competent choice and not of complete moral turpitude.  So I’ve gone through the stages of grief as I’ve watched the Republican party self-immolate this primary season: Denial; Schadenfreude; Rage laughing; Anxiety; Stress wining; Depression; finally Acceptance.  So now a circus peanut with candy floss hair is the de facto Reoublican nominee, and I’m scared shitless.

 

Image via NPR

 
Picking my candidate
When I first heard the things Bernie Sanders had to say, it felt like such a relief!  Thank goodness, someone gets it!  He preached the gospel of family leave and equal pay for women.  He drove home the reality of our country’s economic inequality.  He wouldn’t let us forget how far behind other similarly developed countries we are on education and healthcare.  Unfortunately, the more I listened to him talk, the more I realized he wasn’t my guy.  His message was inspirational, but his policy initiatives weren’t exactly what I wanted and they didn’t seem very plausible, especially in the current political climate.  Even if I wanted a single payer healthcare system run by the government, (which I don’t. They can’t even run the VA well.  Why would I want them to administer my healthcare?) how would Sanders even get that passed in Congress?  Let’s even assume that the Dems take back the House and the Senate in 2016.  There are likely to be plenty of Blue Dog Democrats who wouldn’t fall in line on this.  It was hard enough getting Obamacare.  America’s not ready and willing to slog through another complete healthcare overhaul.  

I watched almost all of the primary debates, on both sides.  As I watched more of the Democratic debates, I kept yelling at the tv, “Super!  How do you plan on doing that?  What’s your plan B if you can’t close all the tax loopholes for the 1%?”  The two biggest red flags for me were as follows:

1) During the CNN debate, when asked about specifics in foreign policy, Sanders looked like a deer caught in headlights. It was aggravating to watch as Anderson Cooper asked straightforward questions, Sanders couldn’t answer them, and then pivoted back to the only foreign policy message he had- Hillary voted for Iraq.  War is bad.  

2) The interview Sanders had with the New York Daily News Editorial Board revealed that he didn’t actually know the legal process by which he could dismantle the big banks, something I feel like you should probably know if you’re going to promise to do that.

These two instances confirmed for me what I had wondered about his campaign promises and whether he could actually make good on them.  To me, they revealed that, no, he doesn’t actually know.  He has no fucking idea.  

I’m with Her

 

Image via the Clinton campaign

 
Hillary Clinton isn’t a perfect human being.  I can even understand why people don’t like her.  She isn’t always consistent.  Sometimes she does bend the truth or lie, depending on her audience.  (Yes, I’ve seen the Anonymous video of her lying for 12 minutes.  I’ll accept it when it’s objective and not pure anti-Hillary garbage.)  Republicans do always seem to be investigating her, even though they can never seem to turn up anything legitimate with which to charge her.  And she doesn’t necessarily give people the warm fuzzy, hopey changey, glowy feeling that we all got in 2008.  Whether anyone realizes it or not, I’m sure a good deal of the animosity toward her stems from the Republican’s hatred of the Clintons in the 90s.  As much as people hated Bill for being unable to keep his cigars in their boxes, they couldn’t stand a First Lady who wouldn’t just sit down, shut up, and review the seating chart for the State Dinner for the British Prime Minister, like a good little First Lady should.  I’ve also heard plenty of people holding Hillary accountable for Bill’s personal and political mistakes.  Let’s not fault her for the things her husband did, nor, without investigation, the things he asked her to lobby for on behalf of the administration.  And for fuck sake, stop calling her evil.  She’s not evil.  Get your head out of your ass.  

Hillary has the experience in government and the competence to be President.  Even people who don’t like her will admit that.  I believe her policies and how she plans to implement them are more in line with what America can handle.  After all, she’ll be President of all Americans, not just the ones on the far right or left.  Hillary’s agenda is in line with my priorities: economic equality and opportunity; equality for women in pay, healthcare, and life in general; criminal justice reform; gun control; immigration; education; foreign policy/diplomacy first, but not afraid to use our military.  

Speak
I’ve generally kept my mouth shut up until now because most of my friends feel the Bern.  And that’s fine.  I don’t agree with everything, but I respect that choice.  I would occasionally ask questions or push back if I genuinely didn’t understand something someone said or posted, otherwise I felt it was best to stick to common ground and trash Drumpf.  But now that Trump is the Republican nominee, I can’t keep it in anymore.  I don’t understand the Bernie people who won’t vote for Hillary in the general election, just to keep Trump out of office.  If Bernie somehow ends up with the nomination, fair and square, I’d vote for him in the general.  In any other election, I could understand and respect the “voting my conscience” principle.  But not this time.  Trump isn’t just some jackass who would make things suck and laughable for awhile.  Trump would put our economy in danger, ($10 says markets around the world plummet the day he’s elected.)  He would put our safety and the safety of our allies at risk.  His election would tell the world that it’s just fine to denigrate women, other religions, other races, the disabled, and anyone else who gets in the way.  He has already fanned the flames of race wars and encouraged violence as a way to solve differences.  For fuck sake, he’s hired Paul Manfort as one of his key strategists.  Paul Manafort is the guy who genocidal dictators have hired to help improve their image.  Trump, who is supposedly so wonderful because he’s been self-financing, (which isn’t technically true) has hired Steven Mnuchin as his National Campaign Finance Chair.  You may better know this “gentleman” as one of the investors who bought Indymac Bank when it collapsed, paid virtually nothing for it, got the federal government to continue shouldering the responsibility for the bank’s losses, and then made billions in the following years from the restructured bank.  Oh, and did I mention that they still foreclosed on thousands of people’s homes?  Jesse Benton, the man who was running the Trump super PAC, Great America, was convicted yesterday on several counts of fraud from when he worked on the Ron Paul campaign in 2012.  Trump’s campaign manager, Corey Lewandowski, thinks it’s totally cool to physically assault female reporters.  So….these are the sort of people Trump surrounds himself with.  How does that not scare the shit out of you?   Not to mention all the insane, let’s call them policy proposals, for lack of a better term.  I’ve heard people say, “He doesn’t mean what he says.  When he says build a wall and make Mexico pay for it, he really means he just wants to implement some mild tax cuts and tweak portions of our trade agreement.”  Denial!  Denial with a massive amount of projection of their own policy ideas.  I guess it’s okay, though.  Denial is only the first stage.  I’d be happy to recommend some wines once you get to the stress wining stage.

  

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The Community that Jenny Built

Excited to have received “Furiously Happy”.

My introduction to Jenny Lawson, aka The Bloggess, was this post a friend had shared on Facebook a few years ago.  It took me several attempts to get through it because I had to keep stopping to wipe tears from my eyes and calm down from convulsive laughter.  I shared it with Mike.  He was amused, but didn’t quite understand why I was shrieking like an angry chimpanzee.  (It’s because we share most of our DNA with them.  That’s just science.)

Since that day, I’ve been a loyal reader.  To this day I still say to myself, Knock knock, motherfucker! whenever I have to, ya know, knock.  But what made Jenny different from any other funny blogger who makes you pee your pants, was that she made herself vulnerable and let us into her world of physical and mental illness.  She showed us her view of the world from under a table or from inside a bathroom because her anxiety overcame her and she needed to feel safe.  She let us crawl under the blankets with her to watch Doctor Who for hours on end because deep depression was preventing her from doing anything else.  While reading her latest book, Furiously Happy, I walked with her out into the New York snow with my own cracked and bloody feet.  It felt safe to know I wasn’t the only one that happens to, that I didn’t have to feel like a freak whenever I have to clean up blood I’ve unknowingly tracked all over the floor because fibromyalgia has made my feet swell and remain constantly cracked open.  Jenny has built a community of “me toos”.  We know what it’s like to lay in bed, not able to get up, not able to reassure ourselves that it will be okay.  We know what it feels like to consider that everyone, including ourselves, may just be better off dead.  We know that having to interact in social situations, especially with people we don’t know, feels like The Doctor being dragged to the Pandorica.

Okay, so what? you’re saying to yourself if you’re a bad person who’s never read The Bloggess.  The thing is, Jenny goes a step beyond sharing her lows.  She reminds us all that depression lies, which is something I’ve repeated to myself again and again and have heard from Mike because I passed that mantra on to him.  She refuses to be defeated and finds the hysterical in the darkest and strangest of places.  And then she inspires us to do the same and helps us heal which, I just realized, basically makes her Jesus, (aside from the running around with 12 dudes.)

So I’m not entirely sure why I was surprised by the outpouring of love I received on Twitter last week.  I really wanted to go hear and meet Jenny at her book signing in DC, but will not go into DC by myself because I’m afraid I’ll crash in the fucked up DC traffic, or get raped on Metro like that one episode I saw on Law & Order: SVU that was on because I was at my friends’ parents’ house and I couldn’t escape it, or get lost and end up having to sit on the steps of the Capitol and wait for someone to come get me.  At least then I’d be able to mount a late night protest of the Republican push to defund Planned Parenthood or Ted Cruz’s stupid face in general while I killed time.  Ooo, or I could just try to scale the White House fence. Then I’d get arrested and would get to wait inside. I’d explain that I wasn’t a threat to the President, I just have bad anxiety. Then we’d all laugh about it. I’d get to meet President Obama and tell him that I really need him to have the HHS Secretary pencil a provision into Obamacare that would prevent insurance companies from refusing to cover a medication for the treatment of chronic illnesses. And then I’d be a Spoonie hero!  Fuck!  I should have gone by myself!
Aaaaaaanyway, I really wanted to go and just posted a throw away tweet about how I wanted to go, but was too afraid to go by myself.  I never, NEVER expected tweets from people in the area saying they were going and would I like a ride.  I received tweets of support and encouragement from others who were nervous about going alone or who weren’t going, but understood my anxiety.  It was like the community that Jenny built was reaching out and giving me a big hug.  Although, now I’m imagining a bunch of creepy, evil hands reaching through my phone and saying in a high-pitched, “sweet, little girl’s” possessed voice, “We just want to love you!  Come with us!”  But you get the idea.

I ended up not being able to go.  Mike hates joy and said he needed me to help him pick up the van from the mechanic, (although why he couldn’t just let Zoë drive the van home is beyond me) and wanted help with bedtime because it was a “school night”.  He was also concerned about me riding in a car with complete strangers somewhere.  Normally, I would have been, too, but I was like, They’re fans of Jenny.  It’s fine!  I was heartbroken that I didn’t get to go, especially since I didn’t get to meet this little guy and his owner,  

i maintain that he would totally lull you into a false sense of security with his cuteness and then launch an attack on your toes.

 and felt horribly that so many had rallied to get me there and I ended up having to shit all over their generosity.  But it was, and is, comforting to know that there is a safe and supportive community out there, on whom I can rely.  It gives me a warm feeling, right in my belly.  Or I could be digesting lunch.

The fear that passes all understanding

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Community

If you were to die tonight, are you sure that you’d go to heaven?

I heard these words so often growing up. Ever concerned with our eternal salvation, pastors and speakers would pose this question to its captive audience in an effort to jolt us with a dose of reality. Time was running out! What if we did die in a car crash on the way home? What if the rapture happened before the morning dawn broke through the dark, night sky? After all, it could happen at any time, so you should always be prepared and vigilant! Inevitably, someone would be scared into an alter call or raising their hand while everyone else’s eyes were closed in prayer. The speaker wanted to know who had made “the decision”.
I was in constant turmoil over that state of my soul. I was usually one to “re-dedicate” my life to Christ, just to make sure my bases were covered. You see, we were always told that once we accepted Jesus into our hearts, we no longer needed to have fear because we knew we were heaven-bound. The problem was, I never felt that “peace that passes all understanding”. Clearly, I was doing something wrong, otherwise I would have felt this esoteric peace. I spent my childhood in fear because of my faith. With a framework of what I would call “hellfire and brimstone-light”, it’s pretty easy to see how that could be.

-There were puppet shows with a Satan puppet, dancing around/fighting with the good guys to “Sinbusters”. Yes. They defiled Ghostbusters. It’s probably also why puppets freak me the fuck out.
-We sang songs with lyrics like,

Now, Satan is an evil charmer,
He’s hungry for a soul to hurt.
And without your Holy armor,
He will eat you for dessert.

-We were told stories of demon possession and exorcisms.
-I remember a specific story about a biker in Hell’s Angels or something who claimed Satan grabbed him while he was in bed. (I think he was also tripping when it happened, so…)
-I read books like Josh McDowell’s “Love Killer”, where demons actively try to get a good Christian girl and her atheist boyfriend to bang. No…seriously. Spoiler alert: They don’t bang, but he does get AIDS.

-Then there’s this gem; the ultimate showdown between Jesus and Satan. It was performed by a pantomime group, all in costume, at a youth convention. For some reason, it scared the shit out of me. I think because of the voices. I was brainwashed. Shut up!

-Then there was the spiritual warfare. Vans before trips would break down because Satan was throwing up road blocks.

Yeah. Mike, who grew up Lutheran and did not have any do this stuff shoved down his throat, once exclaimed after hearing one of these stories, No wonder you were so fucked up.
And fucked up I was.

I seriously had my plan for what I needed to do if Satan ever appeared to me as an angel of light so I could make sure I wasn’t being tricked. I had trouble going to sleep at night because I was terrified that demons were torturing me. They circled my room in the shadows, plotting and scheming. I prayed with every fiber of my being and sang praise songs in my head, pleading with God to protect me and my mind. But, of course, the more one clings to God, the more Satan tortures a person dontchaknow.
I used to have recurring dreams where I was being chased by demons and Satan. There was also the one where I die. I stand before an elevator which will shuttle me to heaven or hell. But I don’t know where I’m going until the elevator opens. If the color inside is blue, I’m going to heaven. If it’s red, hell. Most of the time, it was red.

It wasn’t until just a few years ago, when I stopped believing that there were any such things as a devil, demons, or physical hell, that my fear of such things disappeared completely. Before, no matter how hard I prayed or begged for help, I never received peace or comfort.
While my belief in all things demonic no longer exists, the scars of a lifetime of fear remain. It was actually my therapist who pointed this out to me. I told her that I want to work on managing my anxiety and panic attacks. In the course of conversation, my evangelical upbringing came up. My therapist mentioned that it seemed that there was a lot there that would cause my constant fear and anxiety. I had never connected the dots before. Perhaps so much of the anxiety that I experience today is an offshoot of seeds that were sown so many years ago. Perhaps I would have been an anxious person anyway. In fact, I’m sure I would have been. I’ve honestly wondered if evangelical culture could be a cause for my fibromyalgia. Enduring the actual torture that was all that evangelical nonsense certainly did not help.

The magic of elves

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I, like most people, get songs stuck in my head. It’s not only that, though. I also tend to get words or phrases stuck in my head. Sometimes it’s the name of a place, like Macchu Picchu. Sometimes it’s lines from movies or a tv show. For reasons unknown to me, when I read the Body Science book to Rachael, the term vas deferens made its home in my mind. The rhythmic squeaking of the girl’s LeapPads when they erase something conjures up the words hush puppies, said in time with each squeak. My bizarre masterpiece thus far, though, is when octogenarian was stuck in my head. Somehow, the Uruk-hai in The Two Towers insisting, “They are not for eating,” when the other orcs wanted to eat Merry and Pippin wandered in. It was closely followed by Winnie the Pooh lamenting, “I wasn’t going to eat it. I was just going to taste it.” The result?

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Yeah. I know most of you are backing away slowly from your computers right now. This has a point, though. I promise.

I’ve been having a hard time lately. I’ve been running on empty. I think my medication for depression and anxiety isn’t working as well as it used to, which my doctor warned was a possibility with Cymbalta. The pain and fatigue of fibromyalgia has left me feeling hopeless and helpless. The likelihood that I will live with this for the rest of my life, and I’m not quite 33, makes me feel trapped. Yesterday was particularly bad. Fortunately a nap helped make things feel less desperate.

Today, my energy is alright and my pain is mostly in my feet. Even so, today, just like every day, is a battle to not give in to the fatigue and pain. To not give in to the depression and resign myself to being listless on the couch. To not give up the hope that I still have good days ahead of me and that I could possibly get better some day.
It’s actually kind of hard to keep the fight in me once I step into the warm, relaxing embrace of my morning shower. As I stand there with my eyes closed, letting my muscles relax, it’s easy to say, Fuck it, and just give in. Today, though, I was saved by words suddenly springing to mind. At first, I just heard the voice behind the words, pleading. Then the words formed, “Don’t give in. Not now.” The words Lady Arwen said to Frodo as he began to pass into The Shadow. For some strange reason, I felt bolstered by these words. I know it’s weird, but whatever works, right? As they repeated in my mind, they became a small mantra that helped me refuse to become a shadow of myself. At least for today.

My Fibromyalgia Story

I feel honored and lucky to have been asked to share my fibromyalgia story over on Julie Ryan’s blog. She, too, is a fellow fibro warrior and an advocate for those who also live with chronic illness. I haven’t taken the time before now to share my entire story of how I came to a diagnosis of fibromyalgia. My hope is that my story will help someone else who is now in the position that I was once in: knowing something is wrong with my body, but not being able to name it. I believe that as more stories are shared, fibromyalgia will become less nebulous and individuals will be able to better advocate for themselves with doctors so they may get a correct diagnosis.

The Lightning Strike

BAM!

That’s how suddenly my headache hit. Like a lightning strike to the right side of my head, it was sharp and insistent as it cleaved my brain. I grabbed my head and groaned. Then, as suddenly as the pain came, it vanished. Unfortunately, it left a trace of it having been there: numbness on the left side of my head and face. My left arm also didn’t feel right. While I still had control of my muscles, it didn’t feel like they were responding normally. If I scrunched up the left side of my face, it seemed to take forever for the muscles to relax once I had released them. The best way I could describe the feeling is if you stretch out silly putty, it will not snap back into a lump like a rubber band once you let go. Rather, it slowly re-forms with some resistance.
Obviously alarmed by what was happening to me, I called my doctor’s office to see if I should come in. I was advised to go straight to the emergency room. I asked a coworker to drive me. Unfortunately, I couldn’t leave the office without minimal drama because: 1) Word always traveled faster than gasoline on fire when something was going on in that place, and 2) I couldn’t walk without the help of co-workers and the wall because of how woozy I felt. After a few hours in the ER I came away with a big shrug and an order to follow up with my doctor.

Well, we know what it’s not

Thus began months of trying to figure out what was happening to me. I continued to have sharp headaches and facial numbness. On top of that, my limbs always seemed to be on fire. My primary care doctor was concerned about MS and blood clots. As a precaution against blood clots, he had me stop taking my birth control pills. Once the blood work came back normal, I was referred to a neurologist. The neurologist sent me for an MRI which, after having to badger the office for the results, came back normal. I was unhappy with this doctor’s unresponsiveness, so I moved on to a new one. He sent me for another MRI. This one was more thorough, to include other places on my spine and contrast.
A word about MRI’s: I never considered myself to be claustrophobic. That was, until, I had an MRI. I was inserted into a tube with very little room around me. It felt like it was about to be sent into cryostasis. The process seems to go on forever. And holy fuck, is it loud! Fortunately, I was given headphones with music and there was a mirror strategically placed so I could see my feet and out of the chamber. So my only real problem was feeling the need to pee really bad. I was stuck, so of course I had to pee.
The second MRI wasn’t quite as……pleasant? I had had more blood work done recently, so I had a massive bruise on my right hand. My veins like to play hide and seek with nurses and phlebotomists. More often than not, they end up needing to draw from the back of my hand. The nurse trying to find a vein for the contrast on the day of the second MRI also had a problem tapping a vein. She tried and dug around in the crook of both arms and failed. So she did the only thing that made sense; she beat the shit out of the hand with the massive, very visible and painful bruise to get the vein to show up. That vein was tapped. This time I had neither headphones nor a mirror. Panic settled in my chest and my hand held the panic button tightly. I made it through without pressing the button, but it was a horrible 45 minutes. The icing on the shit cake that was that day? It was Mike’s birthday. While I had my MRI, he watched the memorial service for the victims of the massacre that had taken place at our alma mater, Virginia Tech.

I had looked at the comments on my copy of the MRI cd before I had my follow up appointment with the neurologist. I knew my results were normal. I felt depressed and defeated, not knowing what was hurting my body. I tried to explain this to the neurologist when he expressed surprise at my disappointment. That’s when he cut me off and yelled at me. He yelled that there were plenty of people out in his waiting room who were sick and wished they weren’t. With a heavy amount of disdain, he wrote an order to be tested for Lyme’s Disease and left. After that and all my experiences leading up to it, I was super excited and ran right out to have more blood work done so I could get back in the neurologist’s office faster and have more interaction with him!

Yeah……no. I gave up.

At that point, the symptoms had seemed to subside. So I let it go. We wondered if it was my birth control that had caused all of this. A few months later I had a miscarriage. I decided to try birth control again. My symptoms came back almost immediately. That settled it for us. No more birth control. The next July, we welcomed Rachael into our family.

It’s baaaaaaa-aaaaaaaaack

In January of 2012, I started having burning pins and needles in my head and limbs again. While I had had some fleeting episodes in the intervening years, (including a three week episode of debilitating back pain) this was the first time since the initial onset of symptoms that they were consistent and lasting. After a few months, back to my primary care doctor I went. This time I happened to see the head of the practice. She took me seriously and offered a few suggestions as to what could be happening. I had more blood work done, to include the test for Lyme’s. Once again, all normal. She gave me two options: a nerve conductivity study with a neurologist or taking Neurontin to make the pain stop. Having no desire to go through more dead end testing, I chose the drugs. I asked her if it was something I could take as needed, since my symptoms weren’t happening every day. She said yes. And then I did what most people do these days, I looked it up on the interwebs. Things like don’t suddenly stop taking Neurontin and could cause sudden, violent death did not make that option sound appealing. So I turned to chiropractic.

Sniffin’ on lemons and spittin’ in vials

“We believe the body heals itself. Do you believe that?”

Um, way to put me on the spot. They’re both looking at me. What am I supposed to say? Sure, tell that to anyone who’s died of cancer? Of course the body doesn’t always heal itself. Shit. It’s the voodoo I was afraid of. What do I say? What do I say?
“Um, no? Not for everything. I mean, maybe for some things. But not for…um….I don’t know. I’m open?”
Fuck.

This was my second visit to the chiropractor. In my first visit, I gave my history, had X-rays taken, and was told I needed to break up with Diet Coke. He believed it was possible I had aspartame poisoning which could, in part, cause the neurological symptoms I was having. At that point, I was so fatigued that I was averaging 4-5 12 ounce cans per day.
The X-rays showed that that my spine right at my neck was slightly out of alignment, so I was to start with two sessions per week. The chiro also agreed with my suspicion that it was hormones causing my neurological symptoms and wanted to do a month long test of my hormones. This involved a month long of spitting into little vials and freezing them. He explained that since a blood test is only a spot check of your hormones, submitting a month long sample would give a more accurate picture. (My OB/GYN said hormones wouldn’t cause these symptoms, but I was still suspicious as they seemed to spring up again around the time that I started having irregular spotting and bad cramping in between periods. That whole set of mess led to a diagnosis of adenomyosis.) You guys, you have no idea how hard it is to spit when it’s on command. Apparently sniffing lemons will help you salivate. So many a night there I was, parked on our couch, deeply inhaling over half a lemon and subsequently spitting.
As the weeks progressed, things did not getting better with the soreness I had come to experience in my neck and hips. In fact, in began feeling worse after sessions. In the evenings I walked around our house like a marionette because of pain in my hips. And then one day I was introduced to, dunh dunh duuuuuuuuunh, the Table of Torture. Supposedly it was a massage table. Supposedly for others, it’s five or more minutes in paradise. For me, it was pure agony. Rollers undulated up and down my back. It was tolerable, albeit still uncomfortable, in the middle of my back. But once it hit my lower back/top of my toush and my shoulder blades/neck, it felt like I had sharp boulders under me. When I said how awful it had been when my time was up, the assistant was genuinely shocked. It had been on the lowest and easiest possible setting.

I have a diagnosis

Not long after the Table of Torture, I stopped going to the chiropractor. I had been trying to stick it out, but the pain was getting to be too much. In addition, it took about an hour of travel each way and I had both girls in tow for each appointment. The stress of it all became too much for me. At the beginning of June 2012, I had a D & C to remove excess uterine lining that wasn’t expelled because of my adenomyosis. I thought that after surgery I was feeling better. That, however, was short lived. It was getting harder to participate in aerobics. The workout seemed to exacerbate my symptoms. It was also really painful in my lower back/butt to do sit ups or any kind of crunches. I couldn’t place my weights on my shoulders because of how tender they were. I noticed this at other times, too. Carrying in heavy grocery bags was murder on my shoulders and in the crooks of my arms. It was awful when I rocked Zoë to sleep at night. (And plenty of times it was all night. There was so much night waking, screaming bloody murder, and refusals to go sleep back in her bed. And, of course, more often than not, no one but mommy would do. More nights than I care to remember, I slept in our rocking chair because it’s the only place any of us could get some sleep.) I could barely play with Rachael and Zoë anymore because of how much it hurt when they climbed on me. And if I was on the floor with them, then they were climbing on me. I knew how bad it was getting when Rachael kissed me hard on the cheek one night and it made me scream in pain.

As August came to a close, I knew I needed to go back to the doctor. I was withdrawing from my family. I barely paid attention to my girls during the day. I lost patience so easily. I felt I was constantly screaming at them. I felt so exhausted all day, every day. The pain was becoming intolerable. After Mike had to work from home two days in one week to take care of the girls and me, I called the doctor. The doctor I had seen before had me see a different doctor. I hobbled in for my appointment that day, hardly able to look up. I had both girls with me, which made focusing extra difficult. When the doctor came in, I begged. I begged for help. I cried over how much pain I was in and how I just wanted it to stop. I said that I suspected fibromyalgia, that it all seemed to fit. Then my doctor said the words that I was dreading: How do you feel about going in for an MRI and evaluation with a neurologist and then reevaluating? I said no. I told her I had already been through two MRIs and they found nothing. I told her I had no interest in going through that again. She hadn’t realized I’d already had MRIs done. (Read the history. Come on.) But at least something different was happening in this appointment. This doctor who didn’t look much older than I listened to me. Not only had she asked how I felt about the MRI, she understood why I had no interest in repeating those steps. As she sat there, really looking at me in the eye, she asked me if I felt depressed and anxious. Well, yeah, I said matter of factly. Of course I was depressed and anxious. Starting to feel pain and knowing that it means I’ll be on the couch for the rest of the day with no means of alleviating it is depressing and anxiety-producing. My doctor was unwilling to call it fibromyalgia right away. First she wanted to see how I responded to medication. She explained that if I’m labeled with fibromyalgia, then doctors tend to be dismissive of other problems you may be having, simply chalking it up to fibro.

Where am I now?

I now have a rheumatologist to help me manage the fibro, while my primary care doctor manages my depression/anxiety. My cocktail of medications prevents me from having cocktails. Why they made medicine that prevents you from drinking when stress is a primary trigger for flares is beyond me. All of us are still getting used to this new normal. Mike has to remind himself that there are just some things I can’t handle anymore. It’s not a matter of sucking it up. While Zoë is old enough to understand pain and asks me if I’m okay, she can’t begin to comprehend that this illness is chronic. Rachael, on some level, understands that this is a chronic illness, but doesn’t really get how this affects me every day. She is frequently upset with me for not being able to handle having someone over to play after school. In one moment she’ll be the epitome of the oldest child, helping and caring. Quite often, she’ll offer to help me walk, (which is just holding my hand as we walk.) In the next, she’ll hang off of my neck in her hug or jump on me in a burst of exuberance. In the next, she’ll be whining and pitching a fit over why we can’t do this, that, or the other, not understanding that I’m not choosing to ruin her day by laying on the couch. Even I have to remind myself some days that I am sick. I wonder to myself why I’m so exhausted. Then it’s like, Oh yeah. Fibro. I have to force myself to pace myself and not overdo it. I have to force myself to forgive myself when the house is falling apart from a lack of clean dishes, laundry, and bathrooms. I have to ask for help. I have to fight back the notion that this isn’t real and that I’m over exaggerating; I have to fight back the thought that I’m just lazy or a hypochondriac, like my grandmother.

It’s not easy. Some days are better than others. Some days I get to experience a fresh new hell. Yesterday I spent the day with chest and back pain that made me worry about having a cardiac episode. Fortunately, I had seen on Twitter about costcochondritis, whose name makes me feel like it should come at a bulk discount and cheese samples.

Days like yesterday send me into fits of tears, but on the whole I try to stay positive and not let this define me. I’m not fibromyalgia woman. I’m Julie. I get stupidly excited over finding the right pattern of chevron for my friend’s baby shower. I’m Julie. I adore sweets like a Pooh Bear, but will also growl at you like a dog if you try to take away a good steak. I’m Julie. I’m a post-evangelical agnostic whose politics lean left of center. I’m Julie. I will correct you if you quote Star Wars incorrectly. I’m Julie. A gorgeous pair of shoes will make me say, Hello lover, like Carrie Bradshaw. I’m Julie. I’m a sarcastic introvert who screams at the tv when the Hokies are epically failing and they need to break the other running back’s knees. I’m Julie. I like tabletop gaming and am a terrible loser. I’m Julie. If I believe you to be a douche canoe, I will not be able to help antagonizing you so that you come down a peg or two. I’m Julie. I have never learned the girly art of tact and have therefore offended a lot of people accidentally. I’m Julie. The words I say when I offend those people usually end up haunting me for years. I’m Julie. I’m a college educated wife and mother of two wonderful girls, who I hope grow up to pursue what they love and kick ass while doing it. Oh yeah. And I live with fibromyalgia.

Back to School

Every so often I have a stress dream about being back in high school. I’m an adult and have graduated, but for some reason I have to go back and take a class for my graduation to count or before I can graduate from college. In my dream, I float along the hazy halls of my old high school, trying to figure out where I need to be. Usually it’s a stress-inducing class, like math or my AP English class. My AP English teacher had thinly veiled contempt for me because of a mistake I made in her English class my freshman year. She outright hated my best friend, with whom I sat in class, and was often my partner in crime to skip that class and choir to go hang out at the mall. When I told my mom after graduation that I had skipped that class, she didn’t blame me.

Rachael is beginning kindergarten next week. Daily, I feel like I’m either going to throw up, birth an anxiety baby, (the head is down and everything!) or have my own John Hurt moment. The anticipation is the worst. I know everything will be fine once we get over the first day hump and have a routine established. Until then, I have all the worrying pent up.
I have the It’s really unlikely worries:
– What if she doesn’t come home on the bus?
– What if she’s kidnapped or molested?
– What if Sandy Hook or Columbine happens at her school and she’s traumatized or taken from me?

I have the It could probably happen worries. She’s really small for her age, wicked smart, tends to have an opinion about things, and marches to the beat of her own drum. (She’s at a pool party today, and rather than join the other kids in playing sharks versus minnows, she would rather keep on with water ballet on her own.) While these are things I really love about her, they are all perfect ingredients for Bullied Soup. Or maybe it’s more of a goulash. Borscht?

When we lived in Ohio, I remember dreading riding the bus. There were two older boys who tortured me by making me look at Garbage Pail Kids cards, whose images can be pretty upsetting to a five year old. In fourth grade, a boy punched me on the playground, and my teacher basically told me to suck it up. At some point in elementary school, my friends tricked me into eating a dog biscuit. My “FRIENDS”! I wasn’t usually invited to parties. I did get to go to the “cool girls” slumber party once, but found out at the party that it was only because someone else couldn’t come. I was an alternate.
I know that all these experiences shaped me into who I am, but I pray Rachael won’t have to endure anything like them. The fact that control is just an illusion and that my role from now on will be that of damage control is slightly terrifying.

Rachael going to school also means that I’m going back to school, too. It will require me to put on my big girl panties and interact with school types and parents….as a confident adult! It could mean trusting someone younger than me to know what they’re doing. It could mean sticking up for my daughter with a teacher who is twice my age when my initial instinct would be to shut up, raise my hand and wait to be called on, and say, Yes, ma’am. It will mean taking a deep breath and walking into that first PTA meeting, getting the pecking order sorted in my mind, and then trying to play nicely with the other girls. (I’m sure I’ve already made a great first impression by chewing out the lifeguard/pool manager at our pool in front of one of the other kindergarten moms/rising K play group coordinator. But, in my defense, he was being a dick and I couldn’t let it go because…principles.) It also means finding the balance between letting Rachael fail, and learning from those failures, and making sure she stays on track. It means making sure, through the fibro fog that clouds my brain, that I stay on top of things like getting lunches made, forms completed, and deadlines met.

The night before my first day of high school, I had an anxiety attack. I paced back and forth in the hall and my bedroom, declaring that I was NOT going. As we stand on the precipice of the rest of Rachael’s education, I try to remain outwardly calm while Rachael bubbles with excitement, ready to jump. But inside I am 14, saying, I’m not going, and you can’t make me!

As far as letting go for my first baby, I believe Michael Gerson puts it more eloquently than I.