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.

Of Silver Bullets and Bias

When I was a little girl I had a horrible fear, bordering on obsessive phobia, of werewolves. It all stemmed from a single BETA tape. My grandfather had taped Star Wars onto BETA and given it to my parents. Star Wars is the movie that taught me to talk. My parents would proudly announce, to anyone who was listening, that they'd plonk me in front of Star Wars while they got ready in the morning.

From tv saturation with Star Wars to daycare. Rock on 80s parenting.

But before the Star Wars began, there was a preview for a werewolf movie. I would run from the tv and wind myself into the curtains and cry and shake horribly. And when I was sure it was safe, I would return to the tv.

To remember this, it must have been excessively scary. Later, as a child, if it got dark and the curtains hadn't been drawn, I would look outside in fear, worried the werewolves were sitting outside waiting for me to be alone. We had an alley that ran behind us and we often had a problem with dogs roaming. I had hideous anxiety as a child.

I remember though, that in the preview there was something about the Silver Bullet. The single weakness of these beasts. I would dream about silver bullets for years to come. I finally got over the werewolf fear in counseling in my 20s.


When dealing with an overwhelming illness, or trauma of any kind, we all seek that Silver Bullet. Once found, no matter how hard, it will end that horrible monster plaguing your life. It's a desperate search. Because we're all different, because we all have different reactions to illness, because illness is so different for every single person, the search continues for each of us.

And it's a marketers dream! Just have a look at what this search reveals: Arthritis on Trademe

A woman at Playcentre once approached me about my illness. She was very kind and compassionate and listened as I tried to make sense of what had happened to me. She then broke into a spiel about Ganoderma. She pulled out a bright red booklet and told me to take it home and give it a read. She'd ring me that evening and talk to me about the...PRODUCTS.



Yes, it was a marketing scheme (scam?). A multi-level marketing scheme, similar to that of any other pyramid scheme. Amazing claims begin to pour out of the literature. It clears up anything from acne to MS. Multiple Sclerosis? I was stunned. Of course I wanted in on this! A single tube for $22.95 could cure all my woes.

We looked online and there is some interesting research. It's hard to tell what's real and what's not. It's hard to go past personal 'testimonies' about the power of the product. Because we wanted me to be well so much I almost bought a tube. It was when the woman rang that evening and began her talk about how it had cured everything from her cavities to her recurrent vaginal yeast, we put a giant block up and told her we weren't interested as we were trying other forms of alternative therapy.

She tried and tried for weeks and finally got the message. I never did try it, although I have thought about it from time to time.

I spent a lot of time with a homeopath in Nelson. She is beyond brilliant and I adore her for the emotional space and support she gave me. I saw an osteopath, equally brilliant, to help with the pain. I have since seen another homeopath here in Wellington, not quite so brilliant.

I've tried herbal preparations. I've rubbed myself to the point of stench with various poultices, creams, rubs and drunk every sort of herbal tea you can find.

I've gone gluten free, dairy free and lived on raw juices.

Did anything make a difference? Well, actually, the very first homeopathic remedy I tried I think was the most beneficial of anything I've done in 3 and a half years. In agonizing pain, I sent an email to Selene Homeopathics (can't say enough fab things about them) and the homeopath rang me back and talked to me. He sent me a remedy and within a day or so I felt a major improvement. Since then, not so much.




I've spent literally thousands of dollars in treatments. Chiropractors, the crazy lady who waved her hands around me to dispel the energies, yoga, counseling, tablets, greens, dried herbs, liquid herbs, vitamins, oils, books, veggies, crystals, aromatherapies, bee products, etc.

Nothing has been my Silver Bullet. Nothing has ever met the promises on the label. I've often questioned my rights in returning the product, but is it a gamble to purchase the product to begin with? Do you just suck it up and give it away?

Things that have helped: Ibuprofen and Voltaren rubs, discussing anger and the emotional impacts of increased cortisol on the body, heat and sleep.

I met with a herbalist on Friday of last week. I sought him out to help with the gallbladder pain but mentioned the guilt and sadness I feel about the twin loss. I enjoy meeting with alternative practitioners; in fact, I adore them. I enjoy anyone who seeks out the alternative reasoning behind illness.

Because, in my case, my illness lacks so much understanding and no one really knows the *why* of genetic disease, there is often a lack of empathy and support from your specialist. I like when someone looks into my eyes and says, oh you've got a brown spot over your liver, and then delves into the emotional responses.

I guess you get the anatomy and physiology from your specialist but not a lot more. Your GP tends to ride both sides. I think having someone say, oh how are your emotions on the steroid? Are you doing ok? is so, so important. Because no one actually crosses that boundary in real life. No one asks you HOW you are doing in response to drugs, money problems, work issues, child rearing. And if they do, they don't quite know how to respond to the negative.

I've found people either want you to say you're fine and everything is perfect or they want you to be absolutely at the last straw so they can save you. There are a few wonderful people who know how to ride the fence and ask the right questions. Other people, at no fault of their own, don't know HOW to deal with the reality of living a life compromised by illness.

People will say, oh your situation makes me feel so sad and powerless, I can't imagine how you feel. I think that's the thing. I don't know how I feel about it either. If I try too hard to get in touch with my feelings I get overwhelmed and sad and despondent. If I ignore it, I ignore my body's needs and what's going on in my head and my heart as well.

It's hard learning the art of being unwell. Some people get you're having a bad day and some people just can't imagine having a 'bad' day because they often overlook their own feelings and needs. I think we're trained to push past any sort of 'personal weakness' that we just plow through the majority of life, completely unconnected to our body, mind, heart.

I think being too connected to the unpredictable, to the illness, to the weakness and the sadness allows you to be a victim. It's so easy to fall into the victim trap and there are many, many people willing to take advantage of that. I can think of a story of an ill mother who spent thousands of dollars with an 'alternative' gp who sold her a billion products, loads of new-age tests and basically just rode the ride of stripping her of her own confidence and bank balance.

Conversely, being too unconnected to the reality, to support and give empathy and love really does rob the patient. Just because I look well to you doesn't mean I haven't spent the morning in hell trying to get my hands to open up enough so I could feed myself, get my kid dressed and drive her to the playdate we're meeting at.



Because I need to operate on so many levels, including operating heavy machinery (ie, a car), I can't take the pain killers I need to control the pain. So I wait all day until I've completed my list of To Dos and then I take them. I may be in complete agony but have learned it's not ok to show those signs and feelings. I might be completely in my head, counting, using distraction techniques, to control the pain and you see me as aloof or somehow lesser.

I remember wearing a pair of slippers to Playcentre one day and having someone ask me if I was wearing them because I needed them or because I couldn't be bothered getting dressed. What is it about my illness that allows you, gives you complete permission, to be a total asshole?

I'm wearing clothes, have fed, dressed and brought my child to Playcentre. I've worked at the craft table and cleaned up paint pots and here you are asking me if I couldn't be bothered getting dressed? I quietly replied that my feet were so swollen I couldn't fit them into sneakers. I would have liked to include an F-You and a Piss Off, but I didn't. Because, even if I'm feeling like hell, I am required to be polite and conform to society, but how funny that you aren't.

Because if I respond with the way I am actually feeling and try to educate you, I'm seen as bitter or a victim or an attention whore. I had someone point out that I rarely ever spoke about my illness so no one knew how to approach me. And I responded that it wasn't true -- I actually did talk about it a lot. I let people know my hands were hurting so I'd go to something that didn't require their use. Or that I was tired and needed to sit, so I'd go read stories. Just because you weren't listening, well, that's not MY problem. And yet it is.



When I did openly talk about the fears I had, I was told I reminded one of the elected officers of 'this person' they knew who did nothing but whine and agonize over their own illness. So I'm instantly painted with a brush of your own personal bias? How is that fair? How is this giving the understanding and support Playcentre is so known to show? That humanity has claimed as a separation from the beasts of burden?

When I began referring people to The Spoon Theory PDF download, more and more people began to thank me for helping them to understand what chronic disease is like. Not everyone read the story and some said it was too hard to read so they stopped. Fair enough. I imagine it is terribly hard reading the reality of someone young, stricken at a young age, with the rest of their life as complete unknowns filled with hardship. But it needs to be read. And passed on. And shared with those we love and those we hardly know alike.



* An Open Letter To Those Without Invisible Disability Or Chronic Illness …

Into the Bitterness

When I first got sick, people were awash with helpful hints and hopeful suggestions. Like I'd wake up well just as easily as I woke up sick. And when that didn't happen, I asked for a referral to a Rheumatologist.

Now, at the time, we were living in a small, wine growing community and my referral was for a doctor in a town over the hill, a 90 minutes drive each way. I held onto hope that walking into this man's office was going to change my life. I should have held onto hope that it would change for the better but I hadn't yet found out that a lot of doctors are total douches.

His office rang and said that to be seen by the public hospital, we'd have to wait 16 weeks whereas, to see him privately on a Wednesday afternoon, we would only have to wait 4 or 5 weeks. Who wouldn't take that deal?

So, in that time, we put our daughter into full-time daycare and my days as a busy mother were quashed. The house was so silent and my ability do anything was completely stalled. I remember getting off the couch and crawling to the toilet. I could get on and off by myself at this stage, but you know, that very private 'wiping' stage was still beyond me. So I learned the art of shift and shake -- no paper required. No shame either.

We were going into winter and I wore just a long leopard print robe. Getting clothes on and off was too hard, too depressing. Matt's grandmother had given us a very large insulated container with a spout on the top for keeping drinks cold in the summer. We found that it kept water hot and we used that as a means of making tea. I slid the cup under the spout, hit the button and the hot water came out. I could then wait for the tea to cool and drink it. And because I couldn't hold the cups, I drank lukewarm tea from a straw.

I spent a lot of time on the couch watching daytime tv and listening to ZM online. I hated silence. I couldn't stand silence. To this day I need some form of noise. Being in a silent house takes me right back to those early days of being unable to move and crying for help for everything.

Because I couldn't eat, I drank a lot of juice. I had gotten into juicing when breastfeeding Soph and going gluten free. So we dug out the juicer and I drank all sorts of combos. Anything I read online that suggested even the slightest hint of help, I drank it.

Asians greens, silverbeet, carrots, beetroot, it didn't matter. The most offending was brussel sprouts and the least offending is Bok Choi. Cucumbers juiced are a little slice of sluggy hell. Just don't go there.



That's purple cabbage and gluten free cookies.

Like I said, I tried it all.

Slowly as I began to relearn movements and train myself in movements that hurt less, I became mobile and apparently learned a funky gait that I've since had to work on. I called and called that Dr's office. I begged, I cried, I did anything I could to get in. But no dice.

Finally the day came. Full of hope and awe we ventured over the hill and into the Dr's office. It was an office in an aged care facility, with houses for the elderly surrounding it. I guess lots of old people need Rheumatologists.

When he introduced himself, I felt ok about it all. He was fairly young, with a 2 year old son and he seemed interested in the case. He was concerned that my ANA was negative, but that's ok he said. Some people never develop a positive ANA. I did some basic physical tests for him and it was agony trying to touch this or that.

Then he sat down and started to eat his lunch during my appointment. He said that because they had 'squeezed' me in that this was his lunch hour. Now I felt bad for being there. He told me it was a case of a mixed connective tissue disease to him and that he didn't much care for the 'Whys' or causes. He just liked to jump into treatment.

I was to continue the steroid at 40mg and start on the Plaquinel. Should clear it all right up.

And that was that. My 15 minutes were done, please pay $120 and take this script and begin taking the drugs.

It was really depressing. That was it!? Imagine waiting 16 weeks for THAT!!

So we drove home, filled the script and I took my first doses of Plaquinel. And within a few hours the side effects kicked in. In short, Plaquinel is quite effective against Malaria. It's also quite effective as a laxative. I am a sensitive sort, I'll admit that. Drugs hit me hard. And my stomach is so sensitive from the drugs that I puke easily. But at this stage in my drug trailing, I was still a strong gut virgin.

I was puking from dawn to dusk. My butt hurt so much. I called the office and begged for advice. Finally I got a phone call. Oh, that does happen to some people. Just stop taking it and I'll call in a script for Methotrexate.

All I knew of MTX, from my time investigating fertility, was that it was used as a cancer drug and to kill off ectopic pregnancies. What on earth was he doing giving it to ME?!

No way, I said. Over my dead body. I began to research the side effects, the risk to future fertility. I told him I'd see if I could tolerate the Plaquinel a bit longer and if not, well, I'd cross that bridge.

In my head I just kept counting down. Ok, another day sick means I'm closer to the end of this. If it's a flare, it'll stop and my life will go back to normal. Any day. Any day. Come on, any day. People were telling me that a positive attitude, visualzing being well, etc was going to make it all better.

And it was naive. I held this hope that I was going to get better and when I got worse or violently ill from a drug reaction, I felt lost. Wasn't I supposed to be getting better? What the hell?

And if I had negative thoughts I was reigned in by well meaning friends. No one knew that what I needed most of all was just unbiased, non-judgemental, silent support. Someone to hug me, to hold me, to let me cry and scream. Holding all of that in poisoned my perception of life.

The pain was so intense at times and uncontrolled pain is akin, in my mind, to torture. Any movement, any sudden slip from total control meant uncontrolled pain for hours. Doctors, some doctors at least, are very quick to give pain relief. Others won't. My GP, thankfully, was quite good but started me very slowly. At first we tried normal Ibuprofen. Then we tried Voltaren. I quickly showed intolerant to it and had my first bowel bleed and a bad case of gastritis. The steroid, it seemed, was making my body so sensitive.

So we tried codeine with and without Tramadol and finally worked up to Oxycodone. I was bloated up like a walrus. I began developing shakes in my arms and speech was very difficult. We rang the Rheum and demanded an emergency appt due to the shakes and the uncontrolled pain.

It took about 10 days but we got there. Again, it was lunchtime, this time was a pie and a very grumpy, inconsiderate demeanour. He was upset that the Plaquinel wasn't working, that my inflammation markers were all normal despite the obvious swelling and pain. He didn't like the neediness and my 'demands' on him. I am, he explained, the only Rheum for 3 regions and I am a very busy man.

I felt guilty, ashamed but also scared. Terrified of the shaking, the inability to form words. He told me it was odd that these symptoms were starting now, very similar to that of Parkinsons or MS. Oh, he said, looking at my chart. You've got a case of Prednisone poisoning! Just drop down to 20mg. You won't be able to tolerate 40mg very long.

How simple for him, how insane for me. That's it?! This drug is controlling my life!

He asked me why I hadn't started the MTX. Because if I was taking it, I wouldn't be hurting now, and silly girl, you should be doing what I'm telling you. But, I told him, what about the risks to fertility etc. He told me I shouldn't be worried about the future when today was such a problem.

He told me it was very strange that none of my tests had yielded an answer and perhaps it wasn't Lupus after all. It was very much like RA with the swellings and the negative ANA. But my RF was negative as was my Lupus factor. Hrrrrrm, he said, eating his pie, crumbs all over my notes. Yes. RA. Start the MTX and see your GP for pain. And, by the way, arthritis shouldn't hurt all the time. If it is, you're just feeling too much.

We left angry. Hopeless. Upset. I cried most of the way home. Why was no one listening to me? Treating me like an actual human being!? Is this the only doctor we can actually see? What. The. Hell.

I saw my GP and explained my pain and my worries and he just shrugged at the inability to offer another Rheum. We could try Christchurch he said and he began digging through a book of referrals. No, I said, it's too far to travel and I can't afford it.

So I filled the MTX script and waited. Waited for a day when the pain was so intense I questioned my sanity and took photos of the drug. How could something so innocent looking have the potential to kill cancer and render one infertile?







So I swallowed my six tablets and waited.

I didn't actually have many side effects to the drug. I had a weird burning sensation at times but nothing more. I also didn't have any effects that it was working. It takes a few weeks everyone kept saying. So, I kept taking the drug. And waiting.

Being sick and on the diagnosis roller coaster is a giant case of hurry up and wait. You do your bit, all you can, and you wait. For other people, for drugs, for chemical reactions, for signs of life and hope.

And nothing.

The pain was intense and horrible. I remember taking a red marker and having Matt put an X everywhere on my body it hurt. I walked into my GPs office and showed him. He just put his head in his hands and said he didn't know. He had started training as a Rheumatologist but stopped because it was simply too hard. It was that scenario all over again. He told me he'd give me the highest dose of Oxycodone he could prescribe and that he'd do some reading.

When I saw him a few days later, he told me he thought Still's Disease was the answer. It often has completely normal blood panels and doesn't respond to modifying drugs. We were progressing into Spring and he warned me not to take the sun lightly. Being on MTX was going to change everything.

I'm normally cold all the time anyways so long sleeves didn't bother me. I got a big hat and put sunscreen on my hands and my face.

One Sunday after the farmer's market we joined our osteo friend and his wife and daughters for lunch at a lovely little restaurant in the Mudhouse. I began to feel very faint and sick to my stomach. We were very aware of the sun but wanted me to get some air. I was sitting at a picnic table under a tree in the shade. But I didn't feel any better.

When we got home and I peeled my top off, I noticed I was sunburnt all over my chest. Despite wearing a winter top, in the shade, I had been burnt. We saw a pharamcist as he was still open and he gasped and said it was at least a second degree burn.

He packed it with gauze and gave us some sesame seed oil that was being used on Bali burn victims to reduce their scarring. It was horrible. I had to go to my GP's nurse and get the darn thing repacked. The pain was horrible but at least I didn't focus on my joints as much.

Because the risk of infection was so high I had to drop the steroid from 20mg and try to cope. It healed beautifully, thanks to the sesame seed oil, and it hasn't left much of a scar. I stopped taking the MTX and went up North with my daughter to stay with my MIL and FIL. Life was simply too hard dealing with the stress of Matt's work and being sick and guilt and coming up to my due date.


A Very Bloated Jen

I spent my due date in bed crying. What had happened to me?

I went to bed one night a very tired, busy mum of one and look at me now? Bloated, sore, unable to move much and filled with so much anger, hostility and infinite sadness. What had I done? Why was I being punished? Why did G-d hate me so much?

My MIL was very supportive but I think it was a very foreign concept for her, all of it. I don't think anyone had anything they could say to reach me. I had gone too far into myself and I hated the world. And I didn't care who I hurt in the meantime. No one's pain could match mine, so why did it matter if what I did upset them briefly?

I bought some Christmas angels from Trade Aid after my last Rheum appointment. I held onto them in bed, clutching them. Trying desperately to form some sense out of the events of the previous few months.

What happened? Was it ever going to get better? Just what the hell was going on?

On Illness and Defeat

Study has always been a good outlet for me. I'd consider myself bright, not exactly smart per se, but bright, able to tackle concepts and write about them. I've done well academically, did well with my SATs and my ACT. I've breezed through university classes, often at the top of the class. And yet, as I approach my 30th birthday, with a number of years of higher education behind me, I still have yet to achieved a diploma or those fancy letters after my name.

It's been a combination of battling depression and becoming ill as well as moving away from an area in which I could study; I also became a mother and wanted to focus on that.

It was always my goal to go back and finish my degree when my daughter started school. I've struggled with what it is I'm good at, what I want to spend my time doing. My interests have ranged from working with children to advocacy. I have wanted to, for years, to be a birth educator and a fertility consultant but the fear of failure holds me back. Also, that fear of other people and their opinions weighs heavily in my mind.

When Matt first dropped the separation bomb, I was overwhelmed with grief and fear and nausea. I threw myself, literally, into the gym and worked out my anger and my sadness and my fear. I found my arthritis improved dramatically and I felt so much clearer in my head. So what my GP had been saying about exercise and arthritis and exercise and depression was really true?! Why did it take this long to figure it out!?

I decided to get my affairs in order with Victoria University and begin studying towards finishing off my degree. They decided to accept a fair share of my previous courses and I was all set to start when they sent a curt 2 line email explaining they had closed off applications for all but graduating students and, on that day, 1499 others plus myself found ourselves floating with no university, no plans and no options.

Victoria refused to answer questions, my emails went unanswered, my phone calls unreturned. It came out that they had indeed left applications open, for international students, the real cash cow of NZ.

Massey University, also in town, was very gracious and decided to accept a late application. However, they said, they would only accept 4 of my numerous courses and I had to start over again. Angry and startled by such a stupid policy, I decided to start a new degree vs paying twice for the same BA in English and History. Bad move #1.

Bad move #2 was feeling pressured to study more than I could safely handle. I signed up for 3 classes, 1 100 level pre-req and 2 200 level pre-reqs. 2 exams and 1 research proposal.

And things started out well. I did quite well on my first assignments and then I started developing some bad stomach pain. Well, abdominal pain is quite common for TRAPS, it's often a sign a flare is coming. My fingers started to swell madly and I had to increase my steroid to 40mg to be able to uncurl my fingers and move my hands. The side effects of the steroid, going from 4mg to 40mg is intense.

The first side effect you notice is the a sort of madness, a delirium and a racing heart. It's not quite euphoria, because you don't feel super happy, but you feel super energized with reality shaded a bit grey. You actually can get quite a lot done in those first few days. But then the insomnia kicks in. The racing heart, the hair loss begins rapidly and the headaches kick in. You feel exhausted but wound tightly, like a spring. At any moment you could go from happy and calm to violently emotional.

I would cry watching Rachel Ray chop potatoes so perfectly. I would cry watching my daughter sound out words. And then I'd snap and yell at the cat for scratching. It is very, very unsettling.

As you can't be on the higher doses for long, you spend 10 days in this unsettled emotional rageway only to begin the weaning. Weaning, as the word sounds, is painful. Your body, as it has not produced it's own cortisol, begins to squeeze hard on the adrenal glands. They begin to ache, headaches and nausea are common. I tend to vomit during the drop from 15mg to 10mg. This is the stage where hair shedding intensifies. Losing clumps of hair is common, as is the loss of your eye lashes. The hair on your chin, however, grows quite quickly on steroids.



The headaches are some of the worst; they are crippling in intensity and very few pain killers actually respond to the headache because the body is sending signals that it is cortisol deficient and needs help. The insomnia continues and the body reacts to the withdraw. Diarrhea, vomiting and volatile emotions are common. I am more ok with the emotions at this stage as I can rationalize what is happening and verbalize a lot better.

Finally! Victory, I'm down to 5mg again!

It was during this time we all came down with a horrible winter cold and because the body requires more cortisol when ill, my body became adrenal deficient. I had begun noticing a hard, stabbing pain in the area of my right adrenal gland and put it down to being adrenal deficient. A trip to the A&E brought the suggestion I had a kidney infection and I was restricted in food and fluid until my body regained adrenal stasis (and the steroid went back up to 20mg). I began a 10 day course of antibiotics for the kidney. As I'm allergic to most antibiotics for urinary problems, I got my old friend Nitrofurintoin. It has the tendency to make your pee orange. Which is completely awesome at 7am when you are completely unsuspecting of such things. Whoa! Orange pee!!

However, the abdominal pain became worse and I began throwing up. Was it the weaning off the 20mg or something more? Another trip to the A&E resulted in the diagnosis of Cholelithiasis, which I believe is the presence of gallstones in the biliary ducts. The doctor, as he prescribed major narcotic pain killers, said: It's a bit like giving birth, gallstones. Your gallbladder must dilate to push the stones out. Over and over!

I rang to get an emergency appointment with a private gastroenterologist and was told I couldn't do so until the 5th of November. Then it was at least 7 weeks away. At this stage it's not too far away. I've had repeated bouts of the gallbladder pain and attacks. I've given up food but not caffeine. I've drunk olive oil in 1/4 cup amounts mixed with a drizzle of lemon juice. I will never do that again.

I've drunk numerous cups of liver tea and eaten the dried herbs. Nothing has helped. At this point, as the doctor said, I either have it out on my terms via elective surgery with the gastro or it comes out once it reaches an emergent stage.

Emergent was described as having labs indicating infection, inflammation and fever. I've yet to sustain all 3 long enough for labs to be drawn and interpreted, which leaves only the elective option.

The pain is intense and cruel at times. The worst pain is the upper back pain from the swollen gallbladder pushing on the liver. Livers weren't meant to be bounced around, let me tell you. The pain is often intense and followed by vomiting and diarrhea. It is hard to sleep with such pain. The narcotics make you jittery and blurry; there are hot flashes and night sweats. It is impossible to think after a night of night sweats and insomnia. The narcotics stop any chance of a fever being recorded, thus creating the roadblock of not getting all three emergent signs.

Really Bad Pain
The most typical first sign of gallstones is pain — sometimes excruciating pain — in the upper abdomen or right side. This is sometimes accompanied by fever, vomiting or sweating. The most common treatment is surgical removal of the gallbladder, although there are other treatments, depending on the type of gallstone, the severity of a person's attacks and the presence of complications such as infection.

Most treatments are much more successful if they are given early on. Anyone who thinks they might have gallstones should see a doctor as soon as possible.

Typical symptoms

* steady pain in the upper abdomen that worsens rapidly and lasts as long as several hours
* pain in the back between the shoulder blades
* pain under the right shoulder
* nausea or vomiting
* abdominal bloating
* recurring intolerance of fatty foods
* colic
* belching
* gas
* indigestion
* sweating
* chills
* low-grade fever
* yellowish color of the skin or whites of the eyes
* clay-colored stools *

Having ongoing biliary colic and passing gallstones isn't exactly the environment conducive for study, creation and understanding of abstract concepts. It was during this time my studies started to eclipse my ability to do the work.

And now I'm faced with withdrawing from the classes and lodging a plea with my loan. It is, without a doubt, a defeat. It is, without a doubt, one more very visible sign of the illness winning.

Because TRAPS is a disease of inflammation no one can decide whether the gallbladder is, in itself, a diseased organ or it is the disease of inflammation that is ravaging the organ. All agree that it will be better once the organ is removed, however, the question then becomes -- what organ next? You can't simply cut and remove all organs once they become ravaged by disease.

That's a scary reality. It's a horrible reality. How many people have to confront those thoughts, ever, in their lifetime? Let alone as a young mother, a young woman, and a person with dreams and goals and hopes.

I'm not prepared to let the illness win, no matter how small the defeat. Illness is regarded as failure. There is often a lot of blame attached to illness. Because, if you had super powers, you'd just fix yourself up and get on with it. You wouldn't need help. G-d forbid needing help! We're trained from the age of 2 to be resilient, independent factory workers who need little instruction on pushing buttons over and over. We're not grown with empathy and compassion and a desire to help others. So illness is seen as a remarkable failure.

Remarkable because you just keep failing, and oh, isn't that sad? Pity, tsk, tsk.

Here I am having to lodge a plea and beg for understanding when it should be granted without thought. As a family we have struggled through hardship -- financial, emotional, work compassion wise. Every day is a justification that the illness is real. Someone once commented that my struggles were not due to illness, but because I hadn't adapted to life as a mother.

That one comment has haunted me. Illness, the failure to be normal, is seen not as a justifiable situation, but a self-made creation that must be granted permission by anyone and everyone at any moment's notice. I am required to give notice of my illness to anyone who asks, and as it is a rare and misunderstood illness, I must provide adequate research to anyone who questions the validity of what I am saying.

The illness, the defeat, the failure is constant. And yet again, I have failed. Failed to achieve normality, failed to achieve despite everything else going on in my life. I'm seen as a risk, a liability. A bludger on society.

I understand the situation is out of my control, that the disease is unpredictable and that I have tried very hard. Given time and adequate support, I promise my research proposal would be amazing. Do others understand these same things? Will a group of people reading my plea understand my good intentions? My hard work? My desire to push past the limitations of the illness?

Sandeep Joseph, Managing Director, XM Malaysia, writes: "...there is a lot we can learn from failure, and it is worth the effort. Whether we learn lessons about bouncing back, or we learn lessons about perception, and the biases we bring to our decision-making processes...And it set me wondering about how we perceive failure. Do we embrace it, understand and learn from it, or do we seek to brush it under the carpet, deny reality and pretend we never got it wrong in the first place? Do we seek excuses, alibis and escape routes?" *

No excuses here. I simply failed to ever catch up. I haven't felt well enough to do work and it was only this week when I started feeling a bit better that I got into contact with my disability coordinator and asked her opinion. We should have done this earlier she said. I know, I said. I just didn't feel up to it. And it simply didn't matter enough to push through the pain. And I think that speaks volumes. If it was something I truly had a passion for, I probably would have pushed through it, much like I did last night working on Lady Gaga's pants for Halloween.

It was a bad move, a bad choice, a mistake. I know I want to work as a birth educator and a fertility consultant. I know that, you now know that. So why am I so hung up on pleasing people and trying to amass a fancy degree to show I'm worth something?

Put simply, I don't know.

The powers that be have accepted my desire to withdraw from study and I get my plea papers next week to fill in. I feel sad and that overwhelming fear of the future is bearing down on me. The gallbladder pain is gnawing and clawing at me and I'm due for a dose of Meloxicam.

It's hard to feel solvent when life is so unpredictable and so out of your own grasp and control.