Category: Migraine

A Battle Weary Soldier

There’s something about the past several years that has caused a callus to form around my heart; I miss the me that was more trusting, less cynical, and softer. I miss the me that expected the best from strangers, and was surprised at, rather than resigned to rudeness or aggression.

In the naivety of my youth, I carried in my heart such hope. My rose-tinted view of the future gave me something to look forward to, even in the gloomiest of seasons. I was going to marry a MOG (man-of-God – insert eye-roll here), become a minor, or dare I hope, major, Christian celebrity, travel regularly, and have a general air of importance.

In reality, I married a very good man, had two really schnoopsie, but delightful kiddos, and ended up getting a counselling degree and writing for a self-awareness app – a profoundly fulfilling job. But somewhere in the midst of this existence, which I may add is genuinely better than anything I could have dreamed up for myself, the reality of life has seeped in.

The kind of reality that is so often ignored in Pentecostalism, where the message presented seems to suggest that if you just plug your ears and hum a worship song loudly, the pain of life will eventually disappear.

The kind of reality that comes home to roost when your husband gets impaled when you’re seven weeks pregnant. Or when you watch a beloved family member struggle with debilitating mental illness for years and years and years on end. Or when you finally fall pregnant after several miscarriages only to get a beautiful baby boy, but with a side of chronic migraine that doesn’t go away. That kind of reality.

And added to this, along with general pandemic related stressors, I have felt a genuine angst about people of faith throughout this season. There was a time when I would assume that Sister Mildred, who always sits in the third row, believed pretty much the same things that I did regarding the outworking of faith and the Kingdom of God. But if this virus has highlighted anything to me, it’s that there is a massive disparity in the way that I understand what it means to be a disciple of Christ, and the way that some others understand it.

I say this not to point the finger at any particular points of theology, doctrine, or faith, but more to highlight the despair and confusion it has wrought within me to see certain people that profess faith, acting in a way that I just cannot align with my understanding of the way of Jesus.

All of these things, plus some I’m sure, have caused a defensive shell to form around my heart – it’s a spikey and sad fence, designed to keep me safe, but all it seems to have done is eat at the glow within me.

And I want it gone. I want the slightly naïve girl back – but perhaps with a side more wisdom.

I don’t know how to do this. But I do sense the soft presence of Jesus starting to warm my heart, and I am convinced that he is the key.  So, I’ll sit, and wait, and accept his warming presence, and pray that my battle-hardened shell would slowly begin to get absorbed by love.

Deb xx

Losing my Rag

I am writing for work at the moment on the theme of ‘Mother Guilt’ – something from which, thankfully, I have always considered that I do not suffer too readily. I have always kind of figured that my kiddos will pick up a mix of good and bad from my parenting (hopefully more good than bad), and that they will have their own issues to process and work through as they grow up; issues which, as they process them, will make them more empathetic, resilient, and grounded human beings.

I already see large parts of my personality in Judah, my oldest. The insistence on knowing what ‘the plan’ is for any given day, the motivation to do just about anything for a lolly, and the inability to let things go – or the ability to persevere no matter what, depending on which way you look at it. I also see less of my personality, but more of my quirks in my little Mason – who knew that chewing those little bits of cheek/inside lip (what are those things called?!) is an inherited trait?

Although I don’t fret a lot about how my mothering is going to stuff up my kids’ lives, today I found myself huddled in the corner of the kitchen, sobbing, while waiting for the kettle to boil. You see, with the ongoing ups and downs of chronic health issues, I will sometimes find myself roaring at the kids over something reasonably minor. I know it gives them a fright – and you know what? It often gives me a fright too. I don’t often realise that my body is depleted and my margins are paper thin, until I hear just one more little argument about that stupid fidget spinner.

Because I’m a big believer in the importance of one’s intentions, I can so easily brush off my infractions by explaining to my inner-critic that I never meant to upset anyone, and I’m only edgy because I feel like crap. But explain that to a couple of kiddos who never know which version of their mum they’re going to get today…or a husband, for that matter.

I guess I find myself at this juncture where I feel a sense of responsibility to not lose my rag at my kids, and not be a grumpy presence in my home, coupled with this sense of futility and the thought that it’s just so bloody unfair that I have to try and practice self-control, when I just want to sit in the corner and wallow in how gross I feel.

That’s the thing though, isn’t it? Living in the way that Jesus demonstrated doesn’t come with caveats as to how one might be feeling at the time. He doesn’t command us to love our neighbour, only when we’re feeling good. He doesn’t teach us to put others first, but don’t worry about it if you’re facing stuff.

I don’t for a second think he’s standing there with a big stick, reprimanding me with a stern look on his face. No. I get the sense that he’s gotten down to my eye-level, with compassion in his eyes, and an invitation to lean on him, and borrow his love and grace for the people that I live with. My margins may be non-existent, but his are everlasting.

So friends, if you, like me, are facing struggles of some sort (and who isn’t?), and it feels like you don’t have anything but the scum of your personality to share with those around you, perhaps you will join me in resting in the love of Jesus, and allowing his love to permeate your frailness, and drift through you to your loved ones.

Love you friends,

Deb x

An Ode to my Favourite Feeling

Relief.jpg

I once heard some wise person talking about the best feeling in the world – and before I knew what it was, my guesses would have included love, mirth, joy, hope, satisfaction, fulfilment, or that tantalising anticipation of being starving/hangry at your favourite restaurant, but knowing you have just minutes to wait before you get to eat something delicious. But it was none of these things.

The best feeling in the world, according to this person (who obviously left a deep impression, because I can’t for the life of me remember who it was), is relief. Relief! Really? But the more I thought about it, the more it made sense. And since that time, it has become my favourite feeling in the whole world – so let me take you on a little tiki tour of the world’s greatest emotion in my life.

When I was around 14 years of age, an awkward stage at the best of times, I was having hideously painful cramps, so needed an ultrasound to rule out any nasties. To add insult to injury, the ultrasound tech was a young and studly male. The first time they tried to get an image, my bladder wasn’t full enough, so I was sent to the waiting room to let the water I had imbibed earlier make its merry way down. I was feeling a little sheepish that even though I said I’d had the requisite amount of water, if I was being completely honest with myself, I hadn’t. So, I stopped at the drinking fountain in the hallway and downed a gallon to make up for it. That was before I realised that they were also sending out the world’s largest tankard of water with the receptionist…which I couldn’t refuse, because then they would know about the drinking fountain, and make the connection to my earlier deception. Needless to say, my bladder was plenty full for the second scan (it was a blessed mercy I didn’t explode). Then, as I was leaving the room, the tech told me that the bathroom was just down the hallway, and I, at the age where needing to pee was an embarrassment in and of itself, just airily said, “Oh, no thanks, I’m fine,” and sauntered out of there like I wasn’t dying of pain in my lower mid-section. The car ride home in dad’s bumpy little Barina was about the most tortuous experience of my life – I literally ended up having to hoist my butt off the seat with my arms. But, when I got home, oh, THE RELIEF!!

Many of you will be aware that my husband Caleb got impaled on a job site in 2013 (that’s a whole five-part blog series in itself). When I made it to the hospital, I didn’t get to see him before he went in for surgery, so I was stuck waiting in this cell-like windowless room, with my dear friend and her then 5 month-old baby. I made a number of calls to various people to tell them what had happened, and one of those calls was to a friend of mine who was a nurse, so I could ask her questions about what to expect. She told me that I should expect surgery to take a minimum of six hours. After an hour-and-a-half, the surgeon came into the waiting room – I thought that it was either terrible news, or he just had an update for me. (In fact, I didn’t want to shake his hand, because in my frazzled state, I knew he had to go back and keep operating on my Caleb, and he shouldn’t touch my germs). But, the news was glorious! The surgery was done, Caleb was going to recover, and in the words of a man who looked like the person least given to hyperbole that I have ever met, “He is very, VERY lucky.” I think that this was the most overwhelming relief I have ever experienced…I laughed, and cried, and almost hugged the very cardboard man (but his vibe was most-definitely of the ‘no touchy’ variety). As we left the hospital to get some food (McD’s – the ieal food for a crisis), I jumped, I ran, and I even danced! (The only spontaneous dance I think I have EVER done). I can still feel that relief to this day – and that day goes down as the worst, then best day of my life.

I have a million other stories of blessed relief – too many migraines that finally responded to the pain medication, babies that eventually made their arrivals, and those same babies that finally slept through the night, kiddos that out-grew illnesses, assignments, practicums and degrees completed, medical tests and scans returned benign, necessary big-ticket items purchased, job interviews done and dusted, and first dates out of the way.

I am SO glad that the landscape of my life, with all its hills and valleys, is peppered with the airy, refreshing breath of relief. And do you know what the coolest thing is? I reckon that heaven is gonna feel a lot like blessed relief for a really long time.

Love you friends,

Deb x

She’s Really Let Herself Go…

goldfish jumping out of the water

It was a couple of years ago that I first wrote on the subject of body image, and it’s time for another go-round. It’s been on my mind a lot lately. Since that time, my weight has fluctuated with the different migraine meds I’ve tried. I monitored it weekly or so by dragging my scales out of their not-so-hidden hiding place in the garage, almost guiltily jumping on the scale in a furtive fashion, and dealing with the emotional aftermath of my new number. Until, finally, a couple of months ago I decided I was over it. The scales had a hold of me that I was just done with. So, I bit the bullet and frog-marched them out the wheely bin. Good riddance. Or so I thought…you see, because I know where my parents’-in-law keep their scales…and one of my good friends also has a scale in her bathroom…and there’s one at my local pharmacy… so…

It is for this very reason that I realised I needed to make a more full-scale assault on this sense of needing to fit into society’s ideal of fit, healthy, beautiful, acceptable, or whatever you want to call it. It’s super sneaky. It’s ALWAYS in our faces. Always. So, forgive me if you feel like my words are a wee bit strong here today, I intend NO offense, but I need them to be strong to stave off the onslaught of shame that keeps trying to infiltrate into my world.

You see, once I got rid of my scales, there was a period of time when I was in the middle of transitioning migraine preventatives, and I could tell my body was changing, but because of lack of said scales, I couldn’t actually tell if it was getting bigger or smaller. But my health was much improved and I felt, surely, my body was beginning to reflect this. Until I ferreted out a secret-squirrel scale at someone’s house, and to my horror, I had packed on several kilos in a matter of a couple of weeks. What I experienced at this time was nothing more than a whirlwind of shame and despair. I expected to gain weight during pregnancy, then while breastfeeding, then on different migraine preventatives, but now, while eating gluten and sugar free whole foods, exercising six days a week, and generally in much better health? Nope. But it turns out that my new med, which is doing wonders for my head, is a weight-gain drug for me. Hooray.

I was chatting with one of my friends at this time, and said something to her that unwittingly set me on the warpath against the shame; “The problem is not that I’ve put on a few pounds – the problem is that I live in a society that says that that’s not okay.” Bingo. So I started to find some resources that would give me ammo for the battle. Firstly, I watched Taryn Brumfitt’s excellent doco ‘Embrace’ (on Netflix here in the US, but I don’t think in NZ as of yet…but you should find it somehow!! It’s SO GOOD), and listened to a body positivity podcast featuring Jes Baker, who is an advocate for body liberation, and a super onto-it chick.

What I have learned over this time, is that to simply start to love my body is great, but in essence, it’s simply trying to stretch the rules of acceptability in order to make myself fit. It’s changing the rules of the game so that I still feel okay playing it. It’s a wider (literally 😉) margin for the same old tactic of seeking belonging, approval and validity by external measures. Instead, I’m taking myself out of the race. Those rules can’t apply if you’re not in the game. My body is so useful in getting me around in this life, and for this, I am so grateful. But, it does not represent my value as a person. Not one little bit. So, whether it’s toned and slim and sleek, or a wee bit wobbly around the edges (or a lot wobbly), it makes NO difference to the way God has called me to live.

(As a slight aside here, I know that the old ‘but you’ve got to be healthy’ thing comes into play for a lot of people here. And I agree that health is essential. But I also agree, that it’s none of your business. My health is between me, my doctor and my conscience – which, btw, is totally clear.)

We’ve all heard the completely hideous phrase, “She’s really let herself go!” Well, it’s time to redeem it. I really am learning to let myself go – away from unkind, ungodly, media-perpetuated rules that tell me that how I look is the measure of my worth. I’m letting myself off the hook to spend my limited time, energy and money on things that bring life, love, wholeness and the Kingdom of God into this world.

Will you join me in letting in yourself go?

Love you friends,

Deb

A Chronic Pain in the Ass – Part II

migraine

It’s been a couple of months since I wrote about my battle with chronic migraine, so I thought it time for a wee update…and the news is good!! At the beginning of August I started a two-month free trial for a brand new drug called Aimovig. It’s the only FDA approved drug available that was developed specifically for migraine. Apparently people who suffer from chronic migraine have too much of an amino acid called CGRP (Calcitonin Gene Related Peptide). I stick myself in the stomach with two auto-injectors each month and by some crazy magic, the drug finds it way to my brain and binds to the receptors in the brain that receive CGRP. This means that the peptide cannot land on my brain and it has meant that life has become a whole lot more pleasant!

The first month gave me approximately two week-long stretches of a clear head, but with a couple of MEGA migraines in-between. The second month I have had only one hideous migraine, and a few rough days, but more clear days than the month before. It builds up in your system, kind of like a vaccine, so that over time it should become more effective. It starts wearing off about 5-6 days before my next shot, which is funnily enough quite difficult to handle, both emotionally and physically. I think having a taste of freedom has raised my baseline of what is normal and the return of pain is more unwelcome than I could have guessed.

This drug costs like a million dollars (or $700 per month), and I’m currently having to appeal my insurance company for coverage, but thankfully the company that developed the medicine are giving it away for free for up to 12-months while the insurance process takes place.

Lots of people have asked me if I’m super excited about being so much better – and to be honest, I think I’m working through a bit of PTSD from the past couple of years, so it doesn’t feel safe to get excited. I thought the migraines would end once I got out of the first trimester of my pregnancy, and then once Macie was born, and then when I stopped feeding, and then there have been the four other preventatives that I have tried and been disappointed with. So, I’m wary. Getting my hopes up has proved dangerous in the past, and my battered soul is only just now daring to poke its wee head up above the trenches and check for the all clear. But oh, I am grateful, and so so relieved. I remember being plagued by pain, watching people walking by casually on the street, takeaway coffee in hand, and screaming on the inside, “DO YOU HAVE ANY IDEA HOW LUCKY YOU ARE???!!” Now I have a taste of how wonderful it is to commit to an event and have a fairly good chance of actually making it; of going on holiday with the family and not having to say ‘no’ to half of the activities because I have to lie in a dark room with an icepack on my head. And it’s so wonderful.

Something else I’m realising is that now life is returning to more of a normal state, my thinking requires attention. I have gotten in the mindset of a sick person, and while I still need to be mindful of resting and being careful as I recover, I also need to remind myself on a daily basis that I am becoming healthy. In fact, in order to re-train my brain I’ve become on of those irritating people that keeps a mantra on the lockscreen of their phone: ‘I am healthy, I have energy, I am patient, I am kind.” (Those last two are mainly in aid of rectifying the grumpy-mum situ that my poor kiddos have had to endure for the past couple of years).

So there you go! All-in-all very, very hopeful! I could not be more grateful for the amazing scientists and researchers that have devoted their God-given smarts to developing this drug – it is making a world of difference to sufferers and their families all over the States. Here’s to many, many more pain-free days ahead!

Love you friends,

Deb xx

A Chronic Pain in the Ass

migraine

It was about this time two years ago that we got the much hoped for news that I was pregnant with little Macie. After three early miscarriages, this was a much celebrated occasion and I was so elated! I had only known I was preggo for about a week when I started to feel really ill. Not just the usual nausea and fatigue, but I just felt really odd and off…like an alien had moved into my body. With this off feeling I also started experiencing daily headaches and lots of migraines. Being that I was pregnant, I couldn’t use my normal migraine treatments, and they become more frequent and more severe. I blamed it on the hormonal supplements I was taking due to the risk of miscarriage, and figured I would feel much better after the first trimester. When, in fact, things got worse in the second trimester, I just had to ride it out, trusting that once the baby was born, all would be well. Now, two years later, I’m still in a daily battle to manage chronic migraine.

Being the googling nerd that I am, I have become somewhat of an expert on migraine. So, let me inform you that chronic migraine is diagnosed for those that suffer over 15 headache days a month (less than that is termed episodic migraine). At the worst point, I was having around 20 migraine days a month, barely one day in four or five was a day I wasn’t in pain…and I pretty much never had a day when my head was clear.

So here are a few of my scattered thoughts about becoming an unwilling member of the community of chronic pain:

It sucks. Plain and simple. It really does. Part of me wants people to understand what it’s like to have to spend energy you don’t have looking after two young boys, and then all your ‘free’ time in a dark room with an ice-pack on your head. But then, the other part of me knows that it would be impossible for anyone to understand what it’s like unless they’ve been there.

It’s lonely. Pain is isolating. Making plans can be tricky and they’re always pencilled in, pending on what my head is doing.

It affects the whole family – especially Caleb. Goodness knows it’s hard enough listening to someone whine when they’ve got the flu, it’s virtually impossible for two whole years. He has to carry the extra weight with the kids and also deal with a wife that’s almost never 100%.

New, often really annoying, buzz words become part of your vocab. I remember one Christmas when I was little someone brought tiramisu for dessert. I had never heard the word before, and all of a sudden it was like the new hot word for the day; everything was ‘tiramisu this’ and ‘tiramisu that’, and ‘this tiramisu is lovely’, and ‘have you tried the tiramisu yet?’ SO annoying. That’s been our house for the past couple of years. Medical terms and drug names are an unwanted part of our lingo now. Some of the particularly irritating ones being  CGRP, trigeminal nerve, prodrome, Aimovig, Topamax and Ondansetron (which also sounds like it could be one of Optimus Prime’s buddies).

It makes you a crazy person. I google treatments ad-nauseum, even to the point where I have taken new treatment plans to the neurologist for his approval (which, thankfully, he’s really open to). I try home remedies (the most successful of which is strict diet control of no gluten or sugar, and drinking fresh steeped ginger root throughout the day). I even feel guilty when a bad migraine hits…I feel like somehow it’s my fault that I’m letting the family down again. It’s horrible.

I always thought that when pain struck, you could just take meds, it’s that simple. But with migraines, it’s not. After a time, abortive medications (pain relievers and migraine specific meds) actually begin to have a rebound effect and give you migraines. So I can only take two lots of meds per week at the most if I want to avoid getting into an awful headache rut that can only be broken with steroids. This means that I will frequently go whole days with a bad head, unable to take meds, only to cave in the evening because it gets too bad. It’s a really hideous situation to be in.

It’s super expensive. The Botox treatments I currently receive cost around $1,500 out of pocket every three months, money which we don’t have, and it’s a tough pill to swallow (metaphorically). The new meds I’m about to try cost around $600 a month, so it’s about same. It feels like a kick in the guts spending every last penny on treatments to make life more bearable, when it desperately feels like a holiday would be an infinitely nicer thing to save for!!

It’s not all doom and gloom though, God has been really kind, and a couple of kind family members have pitched in to help out with finance when they can. Additionally, things really are MUCH better than a year ago…I now usually have to medicate only a couple of times a week when things get bad, and I have a number of helpful tricks in my wee toolbox to manage my head. The Botox has definitely made a difference, but not as much as I had hoped, so I’m going to be trying a brand new preventative drug that has just hit the market; the first ever preventative specifically developed for migraine.

Your prayers would be deeply appreciated. I would LOVE to be able to get back to normal life in time, to be able to make it through the day without needing to nap (sometimes more than once), to have energy to play with my boys, to no longer feel the PTSD sense of dread whenever the pain returns, to hang out with friends, and to get off the meds that make me feel like a walking zombie!

Much love,

Deb xx