God Does Not Work That Way!

IMG_1243

Since the dawn of man, people have looked for ways to explain their world. Comets were once thought to be bad omens. To have a mental illness or epilepsy meant you were possessed by demons. A bad harvest meant that the goddess, Demeter, was displeased with you. The creation of the Earth was, (and still is, for some people) explained by a poem written around the 6th century BC. And today, people explain illness and tragedy as God’s will. When people can’t explain why a child died, they say, We can’t understand the mind of God. If people are suffering, whether with a chronic illness or becoming overwhelmed by life, others will try to comfort them with, God will never give you more than you can handle. When that doesn’t ring true, they add on “without Him”. Some proclaim that God allows you to suffer because your faith is great, so you may be an example to others, like Job. The flip side of that is that you haven’t been healed because you haven’t prayed enough or your faith is too weak.

YOUR LOVE IS LIKE BAD THEOLOGY
IMG_1244

We’re going to assume, for the same of argument, that Jesus was/is who He said He was/is. The Son of God traveled, not only preaching the Good News, but also healing the sick and raising the dead. I can certainly understand why people may glean from the Gospels the idea that God allows people to suffer.

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents have sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work.”
John 9:1-4 NIV

I think plenty of people stop at verse 3 and hold it up as proof that God made or allowed this man to be blind so that God may be magnified and glorified. They completely miss the actual point, which is to do God’s work by helping others. Add on verses where Jesus asks people who are asking for healing whether or not they believe in Him, and it’s no wonder where this suffering theology comes from. But I find it telling that, while Jesus may have asked people if they believed, (and for all we know, it could have been something the disciples slid in there while writing the Gospels) He didn’t make them go through a checklist or faithfulness song and dance to prove themselves before healing them. In one case, Jesus found it more important to forgive a man’s sins, rather than physically heal him. It was only after the Pharisees pitched a fit did Jesus add in healing the man’s paralysis, just to shut them up with a resounding So’s your face! (I may be paraphrasing.)

Sometimes I think we forget and only look at the words of Jesus. We forget that His actions are every bit as important. Jesus healed the sick. When someone asked Him for healing, He didn’t say, Nah. Imma sit this one out. But you can head on out from your leper colony and tell everyone how awesome I am. Hosanna, y’all! To claim that God only heals those who call upon His name and are deemed worthy enough is to call God a capricious asshole. It completely contradicts what we see in God through Jesus. What is revealed is a loving God who mourns with us. We don’t see a God who brings suffering. And we certainly don’t see a God who’s concerned about getting credit for good works. (“Go and tell no one…”)

I think, too often, we are like the Pharisees. When we don’t understand or something doesn’t fit in nicely with our worldview, we cling to what we know, (or what we think we know.) Sayings and beliefs, and even superstitions, are passed down from generation to generation. When we use them to explain things in our human experience, we are looking to our own understanding, (and explaining it as God) rather than to what Jesus actually showed us long ago.

He replied, “Isaiah was right when he prophesied about you hypocrites; as it is written:
‘Theses people honor me with their lips, but their hearts are far from me.
They worship me in vain; their teachings are but rules taught by men.'”
“You have let go of the commands of God and are holding on to the traditions of men.”
Mark 7:6-8 NIV

STOP IT! YOU’RE NOT HELPING!
IMG_1245
Image source

Phrases like, “God will never give you more than you can handle,” has made me want to reach through the computer and shake people many a time. (Especially when it’s thrown out flippantly when someone is clearly suffering.) This time, I was set off by the “helpful” comments that people in my chronic pain support group shared. All of these were things that were said to them about why they are made to suffer.

Jesus suffered pain so others would not suffer much more in hell. Your suffering makes you like Jesus, and it draws you closer to Him.

IMG_0667

(An ability to create a massive fish fry out of two fish and to form my liquid metal body into anything I want would also make me like Jesus, but you don’t see that happening. Or was that T-1000?)

I was once told by a Christian therapist that God wouldn’t heal me [be]cause I made him mad.

(So He took his toys and went home, or…?)

Our church said that our family [was] suffering with many illnesses so that the rest of the town doesn’t have to suffer.

IMG_1248
(John Coffey? Is that you?)

Look…those of us with chronic pain and illnesses appreciate your concern and support. But, like most people, we just want to vent or have a shoulder to cry on. Some things are just shitty, horrible, and unfair. Trying to have a simple, pseudo-spiritual answer to make sense out of something that doesn’t make sense isn’t helpful. And think about this: how many peoples’ faith are you possibly destroying by saying such things? When people have suffered for years without relief, saying these things leads people to the logical conclusions that they, 1) Aren’t good enough for God, 2) That God doesn’t care about their suffering, 3) That God is oblivious to their needs and tribulations, and 4) God is a capricious jerk with sadistic tendencies. And this is assuming that they don’t give up belief in a god altogether.

Please, just tell us I’m sorry, or That sucks, or What can I do to help? Those go a long way. If you want to pray for us and healing, that’s great. But also pray for our families who suffer with us, for comfort, hope, and strength. Because, as Jesus so often pointed out, the non-physical is just as important. Just be there for us. SHOW us you care.

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.

IMG_1002.JPG

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”.

IMG_1003.JPG
Image source

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.
IMG_0384.JPG
Thinkstock images

If you would like to share your story here, please let me know. If you wish to remain anonymous, I will protect your identity.

The Broken Ones

20140805-145936-53976818.jpg

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.
20140805-140612-50772459.jpg

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.

Models off the runway

20140708-123529-45329365.jpg
Image source

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?

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.