A little more Badger

I'm always hesitant when the phone rings. I don't know if it's a general phone avoidance or phone phobia, but I get this internal cringe when the phone rings. It's not like I've had many horrible phone experiences in my life, but I am, decidedly, anti-phone these days.

It takes a lot of effort to remove oneself from a comfy couch and walk to the phone. You'd think, being in the company of one who loves emerging technology, we'd have a portable phone but pshh. Seriously, who uses those things? We have 1 phone jack and an antiquated non-cordless phone.

When the phone rings, it takes a lot to answer it. It's either someone confirming an appointment or someone changing an appointment or someone trying to change my power company. No one ever rings to offer me a million dollars or a chat. Not that I'd be keen on a chat. I'd have to sit on the stairs and that's really uncomfy.

And I'm exactly the same way with my mobile. It's more likely to run out of batteries than be used, though I am trying to get better at texting people. I just enjoy socialising when it's my own decision.

I spent some time this morning trying to pass on and receive messages with my gastro. He's been quite a find, after the first gastro was a complete waste, so I look forward to hearing from him. He is genuinely interested in the TRAPS disease and wants to know more. He also, genuinely, wants to help.

So when he mentioned that he'd try to see me ASAP when symptoms started forming a pattern, I leapt on that. Are you sure?? I asked, aghast that someone was actually taking me seriously. Really? And in my head I'm thinking, pinch me! Pinch me! I'm dreaming!

Last Friday morning, thursday night I guess, I noticed a pinching feeling in the area surrounding my right kidney. It was enough to wake me several times. Ow, I thought. That's not good. But I went on into 'work' and dutifully ignored it.

Saturday morning it was more than a pinch and more than an occasional Ow. It was more of a sustained owwwww but still only coming in periodic waves.

Today, now a week on, it's more of the 'why do I need a kidney and for the love of G-d would you stop' sensation. I rang my GP's office on Monday looking for an appointment. 'You need to ring a week in advance' the woman tells me curtly (as though I plan these things, as you would a teeth cleaning). He can see you 3:15 next Monday. Oh, I say. That's quite a ways away. Take it or leave it she tells me. Yikes! Drives a hard bargain, these headphone equipped women.

So, here we are. It's Friday. It hurts and I see the doctor on Monday. Options available to me are the 'after hours' or accident/emergency variety of doctor. The emergency room (seems a bit OTT, you know?) or wait.

So I rang the Gastro, thinking of his offer. I get put onto his PA, a wonderful and lovely and patient girl. Oh, she says, are you the TRAPS lady? I hate to call you that, she says.

Oh no, I butt in. I've been called worse. It is me and I've got these symptoms and he said he wanted to know when it was happening. Tell him that it's mild now but it's going to get worse and I thought he ought to know.

I like how you're so calm, she says. Like you know it's going to get worse and yet you're so calm.

Well, I think to myself. I've done the panic and cry thing in the past and all I did was upset everyone around me. Besides, it's not going to kill me...yet.

My counselor and I have agreed that I enjoy the art of grim and depressing humour. Not in the Hannibal Lecter sort of way, though I do enjoy a nice Chianti. I still have a couple bottles in the cellar and need to check their drink by dates. (What? Didn't you spend your 20s cellaring imported Italian wines? No?)

I don't know what it is about me, but I have a tendency to deflect situations into some macabre, satiric humour. I read once that comedians are funny because they're brutally honest about their pain and they're ok with it. I think of myself as an excellent comedian. It is how I deflect pain. It's how I degrade myself and it's how I am brutally honest with my own limitations.

And I adore making people laugh. Laughter is a nice way of someone saying they accept you. I don't think people expect it when they meet me. Sitting in a doctor's office and dealing with these concepts and walking away with him laughing is a highlight for me. I've had doctors comment that they adore working with me because we get to be so real and so informal. I also enjoy when they curse.

I once had a GP, who I was very fond of, bang his head on his desk when he realised he was completely overwhelmed with being able to help me and said: Frankly, I should just discharge you because you're too hard. But I like you too much.

And maybe that's the thing. I like that people like me, and I like to make things easier for them. Because life is hard. I know how hard it can be. So a light moment for them and for me is pure gold.

My counselor says it's a self-soothing mechanism that I've taught myself over time. That by somehow finding a spark of humour, I've accepted the bleak, decided I'm over the bleak, and can move on to positive things.

See, I AM positive. It's just my positivity isn't rainbows, bunnies and fluffy. It's decidedly dark, meaty and more Philly Cheesesteak than brown rice and miso.

So when the lovely PA responds that I'm calm despite what's going on, to me it's a non-issue. And I actually sort of thought, well, what would you prefer? Me sobbing on the phone and clutching the ground in agony? But then I thought, omg, maybe I am going to die and I should head her warning and, yeah, nah. Not going to happen.

It gives me mental clarity, the grim Jennifer. It lets me get the crap out of the way and get onto business. It also lightens the load. I don't want your sadness, I'm not pitying myself so let's get to the real business of making me better.

I'm finding it hard to curb the habit though. In front of my daughter, I don't want to joke about her health. I'll joke about her high energy, her inability to sleep before 10pm, but this disease, nope. Not funny. Not to me. I'm a real badger about it.

We're not going to dismiss it. I'm not going to allow you to lessen this illness. I'm not going to allow you to replace your discomfort with a blase attitude. And maybe it makes me appear boring and serious and a real stick in the mud.

I started seeing my first specialist, a gyn when I was 13 about the intense pelvic pain I was experiencing. My mother, who never experienced more than 'bad cramps', didn't get what was going on. It felt like a weedwhacker was tearing my uterus apart. I would bleed in excess and pass clots. I would vomit from the pain of the cramping. And yet, it was the 'take 2 tylenol and get over it' attitude I hated the most.

I almost feel sad to admit, but I was a geek. I adored school work and writing essays. Having to miss drama or video production was horror for me. I wanted to be at school for those bits (the other bits like math or science or pe I could happily miss) but I wanted to go to play practice. And yet, it was always, oh Jennifer is an attention seeker and keeping me home was regarded as this generous, excessive and euphoric reward I was being granted and not the kind and caring regard to my pain and my health. There was no humanity in my childhood.

Kids her age don't get pelvic pain. It's growing pains. She'll get over it. She likes the attention and even negative attention is attention.

I didn't get over it. Because there was and is nothing to 'get over'. It's a lifelong commitment, being ill. It will last longer than any friendship, and longer than my own lifetime.

So I saw my first gyn. I was given monthly prescriptions for Vicodin. And it did nothing for me. It was suggested I have a laparoscopy at the age of 14, but my mother said no. I think about the relief I found after my lap in 2003, at the age of 22, and think how much better the previous 8 years could have been.

It wasn't long-lasting, the relief, but it was relief nonetheless. I often question why those of us with adhesions don't get yearly laps, besides the cost and the recovery period.

I had a major kidney infection when I was 15. I had just finished driver's ed and literally, overnight, struck down. The symptoms had been ongoing, but due to the drama caused by me wanting to see a doctor, I ignored it. After 2 ERs, it was found that my right kidney had abscessed.

It took several hours of fluids and kind nurses taking my abuse as they forced the pus from the kidney. That event most likely has paved the way for the recurrent kidney inflammation now. I was in kidney failure.

And I don't want that for my child. Yes, I know how hard it is for you to look at your precious child and imagine the effects of illness. And to admit it to yourself, to other people. I know that people will accuse you of attention seeking, or being mad and off your rocker, but it is worth it to have someone else repeat your fears and worries.

When the paed told me that he suspected that there was arthritis in my daughter's knees, my heart stopped momentarily. I knew what was coming for her. A lifetime of hurt and pain and drugs and sadness. Of limitations and always, always pushing through, but my g-d my heart lifted and I thought, yes! Someone else gets it.

The unresolved pain of my own diagnosis still lingers in me. I think that anger is the force behind my momentum. It powers my satiric nature. It is the power that pushes me through pain, through illness. And I don't want that for her.

I want her force to be fuller. To be brighter. To be of love and confidence and the power of her.

I think, for the most part, the calmness comes because of that simply and easily discarded word: Diagnosis. I got mine. It's my golden ticket. It, all at once, makes me and destroys me. I am finally real. No one can brush me off now. And yet, what an absolutely shitty gift.

I want the same for her. I want her to achieve her golden ticket status early so that we can brush it off and move forward.

I also really want this liver/kidney pain to stop. And knowing that it won't, I open myself up a little more. A little more vulnerable. A little more grey and depressing.

A little more badger.

The Biology of Blame

One of the biggest struggle in ongoing illness is the constant apologizing that you're forced into. I missed 'work' this morning because I'm feeling so exhausted and generally 'ill' (that runny nose, cloudy head and sore throat feeling most people would call a cold) that permeates every cell of my body. I could sleep for a thousand years, if only I could fall asleep. The body is tired, ill and exhausted while the brain is bouncing around, jutting off corners and keeping me awake.

Illness removes the cycle of normality from your life. And unless you hermit yourself away in a small oceanside cottage, you have to cycle your normality in with the rest of the world. And it's difficult. Because the rest of the world is so caught up in maintaining that cycle themselves they can't make many entrances and exits for your wonky illness cycle of normality.

I spend the majority of my day apologizing.

I'm sorry, I couldn't hear that; I'm losing my hearing. Could you repeat that?

I'm sorry I missed that deadline. I was completely overwhelmed with life and pain killers.

I'm sorry I'm late. I couldn't walk too fast this morning and the hills were a problem.

But there are parts of life that you can't continue to apologize for because it becomes too painful. Denial also prohibits some of the apologizing because it is so painful to admit.

I'm sorry you were late for work this morning because of my arthritis. I'm sorry she was late, that hill is killing me.

I'm sorry I couldn't come in today. My child is more important than your organisation and I need to conserve energy.

I'm sorry we don't have much money, even though you work your butt off for our family. My health insurance is so important and so very, very expensive.

I'm sorry we can't buy that baby. Mama needs the money to pay for pain killers that aren't subisidized.

I'm sorry we can't go play this afternoon. Mama hurts and the pain is so overwhelming I am wanting to run away.

No, it's not you sweetie. Mama's just tired and grumpy today. I'm sorry for hurting your feelings.

I'm sorry I'm not earning an income to pay for all my costs -- it's impossible to find someone to take me on paid staff due to my illness and shortcomings.

It takes a lot out of a patient to even admit these feelings, let alone name them, speak them, address them. But we do. And it's hard and painful and emotionally devestating.

People react very differently to these apologies. Some people brush them off -- oh you don't need to do that! they grump.

But I DO need to make this apology. This is my reality. This is the consequence of my illness. And I WANT to and NEED to make you and I aware of this. This is my cycle of normality trying to engage in your cycle of normality. Let me do this, please!

Other people stop you from even speaking, cutting you off with a wave of the hand or other gesture.

How dare you? I'm a human being and just because you don't understand and respect what I'm saying doesn't mean you get to stop me from speaking. I'm sorry that you're so single minded you don't respect my feelings, or are feeling guilty that you're well and I am not. I'm sorry my illness is making you uncomfortable, but I am also living on this planet and have a right to do so.

And occasionally, you'll get the person who wants to remind you of the blame of illness.

You know, they start. I know this woman who read this book about being positive and how positive thinking brought her money and good health.

Some call it The Secret, some have other names for it. It's this belief that by thinking positive, they will somehow exert control over their lives. And truly, it doesn't bother me. If you think money is coming to you, all the best.

You want to control all the red lights in town, have at it!

But it bothers me when you start exerting blame onto me for my illness.

If you were more positive, you would feel better. Your cells wouldn't be ill. Your DNA would change and you could get better.

Having a genetic disease, that last bit always gets under my skin. My DNA, by default, is different from yours. But my DNA, as proved by genetic testing, has a malfunction that results in illness.

So, by using the positive thinking hypothesis, I could have somehow altered my DNA to become normal by being happy? I somehow altered my DNA to the malfunction state because I chose to? Because I did something wrong?

My daughter, a young child trying to live her life well with illness, is somehow to blame for malfunctioning DNA? Did I curse her with this during pregnancy because I was ill and struggling? I fail to understand the principle.

I get that positive people have an easier time with illness because they can push their way through. But they're still pushing. And they're still getting ill. Some of the most prominent faces of illness are these very people. They ARE positive, happy people who ARE ill.

And some of them die from the illness.

Happy, positive people make for interesting articles. That's why these people are fronting organisations. Because they're nice to reporters. Reporters would have a field day with Oscar the Grouch turning up and berating the reporter.

But it doesn't mean that Oscar the Grouch became ill BECAUSE he is a trash-can living grump. He got ill because he got ill. Illness, like happiness, happens.

For every cancer sufferer who faces ideas of pessimism and a life of hardship, there is a cancer sufferer who spent a life full of optimism and peace. Cancer happens. Regardless of whether you spent your teens and twenties and thirties seeing the glass as half-full or half-empty.

To suggest otherwise is cruel.

Am I sick because I came from a family of dysfunction and didn't have the social skills to enter society as an optimist? Am I sick because I spent a period of time facing depression as a result of sexual abuse? Am I sick because I didn't embrace my illness with positivity and optimism?

No. I'm sick because I'm sick. I was sick from the moment I was conceived and I will be sick until the day I day. It's in my DNA.

Certainly, the way in which one handles illness certainly begets the quality of life one will have while ill. And that's something I have spent the past 12 months learning, getting counseling for and bearing change into our family. It is the message I am teaching my ill daughter.

But I will not stand for someone telling her that she is ill because she has somehow done something to deserve it.

I did nothing to deserve this illness. The illness is cruel enough; living life with this illness is hard enough without some jackass telling me that if ONLY I had... And that my life would become easier if ONLY I would...

To suggest that I can re-alter my DNA and that my illness will go away if I simply retrain my thoughts is informercial fodder.

One such book proclaims: "It shows that genes and DNA do not control our biology; that instead DNA is controlled by signals from outside the cell, including the energetic messages emanating from our positive and negative thoughts...a major breakthrough showing that our bodies can be changed as we retrain our thinking."

I agree to an extent that we do control our destiny with what we do and how we think. When I lived with uncontrolled pain, I hated the world. It was a dark grey blob of existence that no one needed. Death was welcomed.

But once I re-emerged into the world, I saw how amazing and fun and truly wonderful life could be. So yes, to an extent, my positive thinking changed my world. But those positive thoughts only came once my biology was controlled.

I still struggle with the pain. When the pain is so cruel I want to rip joints from my flesh with a kitchen knife, I hate everything. I just want the pain to stop. It's hard, in that moment, to see the beauty in nature, in people, in just breathing.

But days spent with friends and being and feeling happy reminds me that those bleak moments are fewer and fewer.

When an illness is uncontrolled and the patient is living in a hell, being told that they would be better if they just thought positive is cruel. That patient IS thinking positive. They are repeating that the pain is going to go away and it's not going to come back. They are repeating, mantra style, that the pain will be gone in 5 minutes. Those 5 minutes may pass, but they keep bleating on that the pain WILL stop and they WILL be ok.

Fear, desperate fear of the pain not stopping is keeping them pushing forward in their lives; but they are positive in those moments of desperation, willing the pain away. Some depression patients cite this as to how they chose not to attempt suicide. They kept repeating that the feelings would pass. That is optimism.

That IS positive thinking.

No, it's not the 'My body is beautiful and whole' business some people want you to keep practicing, but it IS positive. And in that moment of desperation, of struggling and drowning in pain, it's all you can muster. But it IS positive. And you are NOT doing anything but surviving and how dare anyone accuse you of creating or maintaining your illness by virtue of thought.

There is a place in illness and recovery for positive thinking, for positive euphemisms, for sunshine and rainbows and unicorns and fluffy bunnies. But, as someone who is ill, I am spending my life desperately trying to make my norm fit yours, and as a result, constantly apologizing for my shortfalls.

And for you to suggest that I could, simply and without any drugs, money spent or time spent with my doctor, repel my illness simply by reconstructing my thoughts, is just plain ignorant and heartless.

I don't suggest to you, in polite company or not, that you would fit your trousers better if you didn't drink all that beer, so why can you suggest that I am to blame for my illness simply because I don't spend my time running through fields of daisies in the company of bunnies, unicorns and anime characters?

What is it about uncontrolled and chronic illness that allows people to insert blame into our lives? People long gave up blaming birth defects on the actions of pregnant mothers, so why is it still acceptable to assert blame on survivors of illness?

And how useful is it to do so?

I feel enough blame and sadness for the struggles of my family. I don't need more.

As anyone with ongoing illness, we are probably one of the most blindly optimistic people you will meet. Perhaps not publically, perhaps not triumphantly, but we are. How many of you have tried products off the shelf with hope it will help? How many of you have met with new doctors, often at a high cost to yourself, with hope he will change your life? How many of you have read books, repeated mantras, burnt candles, rubbed oils and prayed and cried to G-d for help?

I'd say 9 out 10 have gambled with herbs, diet alterations, crystals, oils, people, in a blind hope and faith that it would help.

How is that not positive thinking? How is HOPE not seen as the most active and attractive form of positivity? Isn't hope the eternal flame that keeps humans plodding along?

How can you, blind to my life and all I've been through and keep subscribing to and trying, suggest that I am to blame for my illness?

Maybe it's because of facing the fear and the sorrow and the pain in my life that I have the capacity to feel hopeful. Maybe because I AM honest and feel sadness in my life that I CAN see the joy. Maybe trying to cover it all up with a bandaid of fake positivty might do more harm?

If you want to be supportive and helpful; if you want to love me and embrace my life, if you want to introduce positivity and mediation and other forms of your 'positive thinking' then allow me to explain whether there is time, energy and need for that in my life.

You might be surprised with how positive I already am.



You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. ~Eleanor Roosevelt

The Obligatory I'm Sorry Post

Dear Blog and Blog readers,

I'm sorry for my absence and lack of writing. I've got a thousand excuses but denial is probably the real reason for me not addressing my illness and writing. But I'll be back shortly.

What Hurts The Most?

"What hurts the most yields the greatest strength" reads a t-shirt available at Cafepress.com if you search for Neuropathy.

I think it's a fabulous opened ended statement.

Are they talking physical pain? Emotional pain and regret? Psychological pain? Or a cultural stiffness that eventually endures pain?




For me, what hurts the most is my body.

In July and August 2008 we moved from Blenheim and a warm, modern home to a leaky apartment and eventually to the home we live in now. It's cold and draughty. It has no heat, except a couple oil fin heaters we have bought. The wind rips through. It took months to get rid of the dampness and cold. It was a particularly cruel Wellington winter.

And I had yet to be diagnosed with a rare disease. People still thought I was an attention seeking dramatic depressive.

I just hurt.

One morning I woke up so sore I could hardly breathe. As the day wore on, I began to think, if this is it. If this is all I will ever have to live for, I don't want to live. And it was scary. It was a tormenting thought to have. I had an almost 3 year old -- why wasn't she enough to live for?

Wasn't life itself worth living for? It was a horrible internal battle. My desire to live was strong but the pain itself was so horrid that death seemed like a warm embrace, a deserved win.

I went to my GP after a 2 day internal battle and told him. If this is all I have to live for, I don't want to live. This was when we first looked into Cox-2 Inhibitors. He had some Celebrex hanging around and gave me 7 boxes that had expired by a few months. (Not that they *really* ever expire, he said.) I was so grateful. The drug can be terribly expensive. We raised my steroid and I took some oxynorm and tramadol together. It wasn't what I needed to beat the pain monster but at least I didn't want to die anymore.

He also referred me to the mental health service. I think he realized that it wasn't going to touch the pain and I might become suicidal again. I met with them and my intake was exactly as you'd imagine. I've never been a risk to anyone else, just myself, but only when the pain is so extreme death seems welcome.

They really did seem to get how bad the pain was. They encouraged me to push for a pain clinic assessment. 'Someone must be able to do something for you!' they quipped. (The short answer is no.)

I think it was the steroid more than anything that helped. And it did get better, as it does.

The pain for me cycles in flares. Some days I hardly wonder what the fuss is about and then there are days where simple muscle flexes make me want to howl with pain and the electric shocks are awful.

Today, for example, my fingers hurt. My hands hurt, my arms up to the elbow hurts. My legs under the knee hurts. Moving them is agony. Cutting, writing, brushing my hair or teeth is totally out of the question. Carrying dishes is a disaster because it can all change in a split second. Boom, my hand will open, and crash! The dish that was held so automatically and expertly goes crashing to the ground.

I will never use good dishes as daily dishes for that very reason. I have personally destroyed an entire dinner set. Some of my favourite mugs have been lost to this.

My legs feel as though they are bolted to the ground. Picking them up feels almost like marching and I am directed to memories of elephants marching, trunk holding tail. My mental image is of my heavy elephant leg lifting up, pushing down, lifting up, pushing down. It's almost as though I must tell myself how to walk to get these beasts to work.

Stairs are a laughing matter. There's no way these legs will lift high enough to clear a step and yet, you must. Life doesn't stop because you can't climb the stairs. Especially in a world of 2-story houses built long before anyone recognized arthritis.

I will often be sitting, waiting for pain killers to kick in, when I feel the electric shocks hit my spine or my arms. The burning in my legs is agonizing at times. I used to be ashamed to cry in pain. Most of the time I'm alone when it happens so I don't mind going with it. But when other people are around I try not to.

I try to hide it as much as I can, but there are some days when it just hurts so much I hate life and I hate everything and I just want to stop hurting. My daughter is getting better at understanding it's not her, or anything really, it's just that mummy hurts and mummy needs to let it out. But it used to really upset her.

So I would find myself stuck on the floor, in agony, crying with an equally distressed toddler crying too.



Nothing ever really helps. Heat, cold, pain killers. I find that there will be days of warning -- increasingly sore muscles. Sore joints and fatigue. Headaches. Trouble sleeping and eventually it will hit.

It's often when I have a lot going on and so I will email people: "Fingers hurt. reply later, ok?" whether or not ok is a satisfactory answer for them. Sometimes I can push through and my fingers will ache and swell and once I nearly burnt the house down trying to prepare meals in this state.

I turned the wrong element on and went to sit down, exhausted from chopping and feeling fatigued. We had moved the toaster to the stove so it was easier for me to operate and boom! Up in flames went the toaster. If I had fallen asleep or been unable to move to extinguish the fire, we would have suffered far more damage. Thankfully the only damage was smoke induced and a burnt element and ruined toaster.

People often suggest we get home help during these times. The problem is many folded. For one, you never know when it will occur. You can't afford that sort of help anyways ($26 + an hour) and people expect you just to 'harden up' and get on with it. And I've tried and I do. But most often, it's hard, I hurt and it made me very, very angry on the inside.

When I explained the anger to the psych consult, they suggested I do some anger management courses. Oh, how I laughed. I don't have an anger problem I told them. I most certainly did. I also had a problem with accepting this was my life. I was still clinging stubbornly to the belief that I was going to get better.

It wasn't until this year when the gene tests returned that I realized I am *never* 'going to get better'. You can't change who are at a genetic level. All I can pray for is relief from the pain and the drug Anakinra to work.

I think that helped immensely. As did the anger management classes. I eventually went to them, in March of 2010 instead of Sept 2009. They taught me that I didn't have the social upbringing to deal with the emotions I was feeling.

It helps to write about the pain. Constant pain really does your head in. People often comment: G-d I can't handle it when I get a headache! I can't imagine weeks of this pain!

And that's how it is. The pain will rise and fall in cycles, it will cancel plans, create chaos and hassles. You have to make excuses and find alternatives. People won't understand or if they do, they are so kind and wonderful you wish all people were like them. Someone will bitch at you and someone will bring you a casserole. You're constantly challenged by the pain -- your own reactions, your ability to self-care or self-hate.

Life goes on and doesn't stop. The pain will eventually go away. You're left exhausted and hurt. Once the pain is gone, it takes days to rebuild from the exhaustion and flush out all the shitty drugs you've had to pump yourself full of.

When people recover from an illness with antibiotics you often hear people say -- oh, it takes it out of you. Takes weeks to get over those terrible antibiotics. But you never hear, oh, that awful oxynorm. Takes weeks to get those drugs out of your system! Insert with tramadol, morphine, meloxicam.

I recently overheard a discussion in which two people were discussing a third party using a lot of paracetemol. And how taking lots of pain killers was a blight on society. I had to laugh. Paracetemol?! Mwah ha ha. How I wish I was one of those people who never needed anything and considered it a last resort.

I think I've actually got an incredibly high pain tolerance. It's how I get on with life. I shop. I cook. I mend and sew. I create and paint and play Barbies. I parent very well. I've done charity work.

I hurt but I carry on.

I was told the other day that you'd 'never know' anything was up with me. Sigh, I think on the inside. I wish I went purple. Or had stripes. Or big fins. Even a big fish head. I responded that I walk slower than most people. And take time with things because I have to think very slowly to make sure I'm not making social mistakes.

I was grateful that these people asked about my illness and I got to tell them more. I was grateful for their empathy and for their kind words about how well I carry myself.

I guess that's another way the illness hurts.

If I want to lie down on the floor and sob and openly express my emotions about it all, am I not carrying myself very well? Am I doing a disservice to myself or others with chronic illness by not carrying myself well?

My daughter seems to struggle with it at the moment. She wants me to be a willing participant in her play and I am finding it hard to explain to hurt what it means when I say 'Mummy hurts'. I've tried to explain that I only have certain amounts of energy. She hasn't quite grasped that mental energy is different to physical energy and I have limited amounts of both.

I feel immense dimensions of guilt.

For not bringing in an income. For costing my family money. For having to bail out of social events. People don't get that. They think you're a flake or just finding any old excuse to not go out.

That causes guilt too. If they'd just ask -- are you avoiding me or do you really hurt they'd get so much more knowledge and no one would get hurt feelings.

People are biased by illness. They either find you a bludger or have bad memories of someone else with illness. Maybe illness killed off someone they loved desperately and you remind them of that pain. Not many people choose to let you tell your own story.

That hurts too.

It hurts to hurt.

I remember once a nurse told me to pray for pain relief. "It can't hurt" she said, not knowing the pun. Oh how I wanted to point it out but didn't. I didn't want to appear sacrilegious.

”The greatest evil is physical pain.” – St. Augustine

Oddly enough, nothing has taken away the pain. Not even prayer. As much as I had hoped a good word with the big man upstairs was going to help, I wasn't really surprised.

Today, my arms hurt. My fingers ache. My legs burn. I trip over my heavy elephant feet. I am tired and plagued with exhaustion. But I have promised a trip to the beach and a plate of hot chips. I have to pack to catch a flight tomorrow and it's overwhelming.

This is when I actually use prayer. Lord, I say, please grant me the patience and the endurance to get through today. To hold my tongue and to love my daughter unconditionally.

It's one of those days when I say: Everything hurts.

It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. -- Julius Caesar

The Courage to Be

While I was in hospital, Matt took Soph to the lab to get her bloodwork done.

We had taken Soph to see her regular GP, Rachel, someone who looks amazing for giving birth to her 3rd child a few months ago and is so smart it's hard not to leave jealous. Rachel is a brilliant children's GP. She's aware, she's considerate and, the best point, she doesn't freak out.

We first starting seeing Rachel about Sophie's constipation and when we saw the Paed, we had remarked about the fevers that we had started seeing when Soph was a baby. We told Rachel, ok, it's time. Sophie's teacher has come to us about the fevers, and if someone else is seeing them, it's time.

Ok, Rachel said. Let's move with this. Keep your fever diary (something I have tried and tried to maintain but never seem to get more than a few days into before I fall off the wagon) and we need to get the blood tests done.

When we first started the constipation diagnosis, Soph had some blood tests done for celiac and we did all sorts of stool and urine tests. Soph was barely 4 at the time and was so brave. She winced and cried quietly. They gave her a certificate to colour in and a colour copy for her records. I treated her to a Happy Meal, because, well, it's all I could do at the time.

Rachel wanted the test done with obvious signs of the disease. It's the same for my rheum. They always want you to be able to rush to the lab at the first sign of mega disease and frankly, it's a pipe dream. For one, labs close. For two, most diseases like TRAPS are so unpredictable it's impossible to schedule your lab test around your life and your disease.

However, with a paeds appointment coming up, we want the blood test results. So Matt and I debated. Do we wait until we can catch a 38C fever or do we go with the physical signs: redness, irritability, food refusal, tummy soreness.

For a couple evenings we had been noticing a temp spike over 37.5C but by judging the clock, it always came after 5:30pm and the lab closes at 5pm. So...do we take her one afternoon just before 5? Do we keep her home one morning until we see the signs?

Knowing the ANA and some other autoimmune tests can take up to 3 weeks, well...what do you do? Take a gamble and get it done now or wait and miss the paed appt with blood results?


It hadn't actually been decided when I went into hospital. My phone was quite quiet on Fri morning and I texted to see how school drop off went and got a text back saying they had been to the lab, with big bear as her Whanau support, and they were now at BK having a treat.

My heart dropped. My brave girl! Doing this without her mama!! My heart hurt. This is MY job. I'm supposed to be there to comfort, to arrange and to oversee these things. It did help me realize that her father is completely competent and that as we separate, he will be fine to cope with and do these things.

He tells me they had her on his lap, with his legs holding hers down. He held one arm, they held another. Another girl did the poke and draw. She screamed and cried, as you would when you're 5. She said she doesn't want to do that again until she's 6, or 6.5. My heart breaks.

Matt took her to school and her teacher, the incredible Mrs. Chambers, announced to the class that Sophie had been a brave girl and she held up her Certificate of Bravery and they all clapped. Oh, be still my heart.

We fully expect nothing significant from the tests. Rachel told us to expect nothing, we know from my own experience, to expect nothing. So, if we're to expect nothing, is it worth getting them done at all. Well, yes. Because if it's TRAPS, getting nothing is on par. If it's something like Juvenile Rheumatoid Arthritis, we will see something. If it's going to attack her body, it's at least worth *trying* to find something.

When I first was undergoing diagnosis, I used to be crippled with guilt. The guilt of being a sick mother -- unable to mother to my fullest. The guilt of being an angry, emotional mother -- hurting my child with my inability to control my emotions. The guilt, oh the guilt, of passing this on -- and it still gets to me. If I'm sick, well, that's ok. It's my lot in life. I can cope with it all. After all, I'm an adult and I'm used to things being tough and ironic and hard.

But her. Not her. Anyone but her. This is the child I fought to bring into the world. The child who struggled so much in her first year. Who has fought so hard to grow, the develop, to be the best and bravest girl she can be despite abdominal pain and these other symptoms.

When Matt first ended the relationship, I was awash with this feeling that I wish I hadn't brought a child into this fucked up situation. Didn't she deserve a family with love and respect and a safe place to fall, especially if she's going to face other troubles in her life?

But I now see that she does have a family with love and respect and she will always have a safe place to fall. It just happens to be a slightly augmented nuclear family and I hope that as we all grow and age that we will continue to be a close and safe and loving family. I think our joint desire to help her through the illness is what unites us as parents.

I still ache inside thinking of the guilt. I ache inside knowing that she is going to have a lifetime of illness and pain. I ache inside knowing that any future children I have will face this as well. I suppose I am steeled by the fact that my own experiences have been much more positive here in Wellington and that I am growing and learning how to handle myself, handle the unknowns of the illness. I am comforted by the fact that the staff at the hospital are so kind, so caring and so professional, and yet maintain that friendly, approachable manner.

I'm sure this confidence is going to falter at some stage as we approach the paed appointment.

But, for now, I'm relieved the lab tests are in the works and the girl bounced back from it all.

Just a Quick

Just a quick apology for the sudden lack of posting. I've been in hospital with what we thought was finally *the* gallbladder attack to get the bugger out.

Turns out I had huge infection markers and was on 2 antibiotics and spent quite a few hours in hospital.

Ultrasound, and a very good one at that, showed the organ is perfect. Surgery would fault the body as it's working so well. So they called Will who said, it's obviously traps.

Fever, high white markers, abdominal pain with vomiting and diarrhea. Did she have a mouth ulcer before this? Yes, actually, I did. How funny.

So I'm to up the steroid to 40mg and I'm to see Will. So no need for the gastro on the 5th.

I'm feeling much better after 2 days on antibiotics but the amount of morphine needed for the abdominal pain is a bit concerning. It scares the bejeezus out of me.

Care was phenomenal, room mates were slightly demented and insane (more on Mary another day) but I am thrilled to be home.

They wake you so often for this and that that it is highly impossible to ever get rested.

So, another point for TRAPS.

Writing is my Food

I've been reading some posts on a messageboard lately about 'fatties' and how people who are overweight need to stop feeding their gobs and just exercise. It makes me giggle a bit, because those types of people have never struggled with much. Either by design or pure stupidity.

We all struggle with something. Some people feel too tall; some too fat. Some are poor and some just have really crappy luck.

It did, however, inspire me to question whether I had it in me to get back on the stepper and do some weight training exercises. And the answer is that I do have it in me. The power, the desire, the insanity to challenge my adrenal glands.

My gallbladder is distinctively more sore and angry than before the exercise so I know that today's 750 steps is probably on the high side for someone with biliary colic.

I've been meaning to write about what it feels like to pass on that really crappy luck but my daughter isn't doing too well. She's had a fever for a few days, very sore knees and she's tired, sore and emotionally exhausted. We're off to the GP and I'm going to ask for some blood tests.

I had hoped we'd have 15 years before we saw more aggressive signs. But we're not getting that sort of time.

I'm supposed to be writing through these feelings but it's hard. Isn't it easier to just stuff it down and have another cup of coffee and bake some cupcakes? Some pretty pink cupcakes?

Tomorrow. Today is a challenge enough.