The 'What I Really Do Meme' for Chronic Illness

So I made this a couple weeks ago and thought I'd share it here.



I thought it was quite clever and feel it's quite true. So please share onwards!

I had the misfortune of introducing myself to a web-forum for people planning events and was told that it wasn't going to be ok for me to talk about 1) body size and issues with and 2) my illness, as it wasn't part of planning and it might make people feel bad.

I couldn't quite believe my eyes.

I honestly had to reread it about 5 times and catch my breath to reply properly.

People living with disability have a hard enough time coping with the reality of their 'new' lives without having to insulate the rest of society from some uncomfortable feelings.

Part of living and accepting life with disability is being able to talk about it. Like any other healing process, talking about it is vital. My illness isn't who I am, but it makes up a huge proportion of my life, so I talk about it. It's not pleasant for me either. But, it's not my job to make sure people don't have uncomfortable reactions to it.

That's part of being a mature and empathetic person. I live my life with concern and respect for others, and people with a disability expect you to do so in return. I didn't whack people with my crutch while using it, so don't whack me with your complete and utter disregard for my being.

Both my knees are sore today and I'm in a severe and grumpy mood. We have 4 days left of summer (a very wet and cold summer) and I am not excited about the prospect of 9 months of gloom heading my way. This email I received just topped off my approaching gloom.

*** Obviously we need more disability awareness. When did it become MY job to protect YOU from YOUR feelings about MY illness? ***

What does TRAPs looks like?

It's a google search I get a lot. What does TRAPs look like? Good question.

This is what it looks like:



The TNFRSF1A gene is located on the short (p) arm of chromosome 12 at position 13.2.
More precisely, the TNFRSF1A gene is located from base pair 6,437,922 to base pair 6,451,282 on chromosome 12.

Yup, that little blip is where all the mutations can occur to cause all this trouble.

More than 60 mutations in the TNFRSF1A gene have been found to cause tumor necrosis factor receptor-associated periodic syndrome (commonly known as TRAPS).

Source

I was tested either for 2 or 3, and because they did not come back positive for a mutation, I am deemed not 'diagnosed' for TRAPs, therefore, I am not able to be funded for enbrel.

With some patients with some various autoimmune or autoinflammatory diseases, there is a nice salmon rash that appears in various parts. Lupus has the 'butterfly' mark, some with Still's Disease get a patchy salmon rash just before their elbow on the inside of the arm.

FMF'ers and TRAPpers really don't have a distinguishing feature except maybe a stereotypical racial identity.

For those with FMF, you're looking at a melting pot of Greek, Turkish, Iranian, Italian people who's forefathers have intermingled. It sometimes appears in Jews of the area but not the entire Jewish population.

For Traps, you're looking at the Scottish and Irish folk who have not interbred with the English. When you have mixed with the general English people, you are more likely to have another autoimmune or autoinflammatory disease, but because of the variations of mutations, you might be affected.

My link back to Ireland is my maternal grandfather who was Irish, however my mother had quite olive skin.

Given that my last name is now Scottish, I sort of fit the TRAPs picture.

The single most identifying feature between FMF and TRAPs and against the 'normal' picture of a person is the fever.


This is in F, of course. For those of us who use Celsius, it's as follows.

Normal Body Temp: 37C
Oral Fever Temp: Over 37.7/37.8C
Rectal Fever Temp: Over 38.05C

I've taken various photos of the 'mask' like redness I get when I have a fever, but all I was told was: "It looks like you have a fever."

There ya go.

What is the difference between an Autoimmune Disease and an Autoinflammatory Disease?

Autoinflammatory diseases (AID) and autoimmune disorders both result from the immune system attacking the body’s own tissues. Both of these disorders also cause inflammation. However, in autoinflammatory diseases the innate or primitive immune system causes inflammation for unknown reasons, whereas in autoimmune diseases the immune system mistakenly reacts with the body’s own cellular components as if they were foreign antigens. Autoinflammatory diseases also have a hereditary component usually associated with a gene mutation.

Source

The article does state: "Attacks of TRAPS can be prevented with colchicines, whereas glucocorticoid steroids are used to reduce symptoms." Which is sooo not the way I want to see doctors treat patients with TRAPS. Seriously, Colchicine makes you poop all day long, you become dehydrated and sore. It doesn't do much at all to stop or shorten flares.


So, while I can't show you what TRAPs looks like, as I don't get an itchy rash on my legs, and I am more affected by fever, inflammation and arthritis, which are all invisible, I can show you what maintaining TRAPs looks like.

This is my morning ritual:



That is Prednisone, Citalopram, Prilosec, Magnesium, Spirulina, and my pain killers, Ibpuprofen, Codalgin and Diclofenac. I take the Seroquel at night. During times of pleurisy, I take the Vick's Formula 44.

Yum!



I often get tummy upsets, either in the form of reflux or just a general upset stomach. I take both Aloe (this is Lifestream Aloe) and Slippery Elm Powder. Slippery Elm Powder is amazing and you should all add it into your diets.



When feeling overwhelmed or tired, I take the Elevit Multi for Women with Children, and when I start to get a bit achy in the kidney, I take Red Seal Cranberry capsules. I often get cystitis and the cranberry works really well to help prevent it.



For stressful times, I take L-Theanine and for coughs that won't settle, I take Wild Oregano Oil. Both are from Solgar and were finds from my friend Anna. (Hi Anna!)



Because I've been on the steroid a long time, I have to take calcium. I often forget as I'm supposed to take it away from cups of tea and as I drink tea all day, I don't remember to take it.


You can see they even upped my dose from 500mg to 600mg twice a day.

And my favourites, my health promoters.



I love to take an apple or two, cover it in squeezed orange juice and have the two together.

Tomatoes, when in season, are also divine. I like the truss kind and find the smell of the tomato vine heavenly.

Into The Sticks

So, it seems my 'invisible' illness has quickly become a highly visible illness.

I always told people I wished I turned purple when I became ill and developed green spots during a flare. Now, I'm not that visible (though I still wish those things), but I am now sporting a pair of forearm crutches.

The physio I saw Thursday evening put me on them and told me to consider a short-term aid for a long-term problem. I hope to be down to one stick in time for Xmas shopping, but for now, two sticks is a tricky transition.

She also used a portable ultrasound machine to attack the inflammation in my hip. I don't think it did much at the time, but it was feeling mildly better on Friday morning. And then I undid it all.

I took a pretty hard fall on Friday night.

Transitions all around.

Recovery

I was going to write a post in March about how it's my least favourite month and how it was surprisingly good and give a big, earthly squeeze to my little lost girls, but somehow the month disappeared. And April too.

The 15th of April marked my brother's birthday and my 4 year (!!!!) anniversary of being on the steroid Prednisone. I owe it a lot and struggle with it a lot. I'm heavier, hairier, balder, smarter, wiser and happier than I was 4 years ago. But it still stung a lot because to me, there was this life BI, before illness, and the life I lead now, AI, after illness.

I guess I'm thankful that I'm not ravaged by the active disease the was I was then. Small graces and all that. But I still have swollen, sore joints and I still get the fevers, the ulcers and the flares of worse arthritis.

I had considered going back on Methotrexate, something I wanted to discuss with my Rheum, but never got to it with the registrar. My amazing GP said he'd go out on the line and prescribe it for me, but he just didn't think it'd be worth it. The risk to him, of course, is large, and the risk to me, as well, is large. And we agreed they were risks not worth taking.


So, I balance my life with a lot of NSAID usage, which is in addition to the other analgesics and the steroid. It's a lot to put in and frankly, I don't do enough to support my body. I should be eating a raw juice diet to help flush those chemicals out but I don't. Can't be bothered cleaning the darn thing and with petrol prices the way they are, food is expensive.

Much more than it was 4 years ago when I went on a raw juice diet for months at a time. I was also on the anti-malarial drug Plaquenil, which meant I couldn't keep solid food down. The plaquinel made me feel so exhausted.

I actually started wondering if I were taking a bad combo of drugs because I've been to that Plaquinel exhausted feeling a few times over the past few weeks.


I recently had a messageboard discussion regarding dreaming, in which I asked if we could temporarily stop dreaming. I've been having weeks of poor sleep because of these very vivid, often lucid, dreams about bad things happening to people I know. I would wake up in cold, hostile terror and then feel powerless and horrid for hours afterwards.

The decision was made that one cannot stop themselves dreaming, but perhaps one could control turning the 'bad' dreams off.

Someone suggested that I wasn't dealing with something in my life and that guilt/ownership was causing the 'bad' part of the dreams. I was then told to begin seeking POSITIVE thoughts and I'd see a change in my life.

I said that while I am actually a fairly optimistic person, compared to say 4 years ago!, I deal with a lot physically and I think the only 'guilt' I could come up with is worrying I'm not doing *enough*. But, I said, I think ALL women face the Enough Dilemma. Am I doing enough for him, for her, for them, and myself?

I mentioned that it's arthritis that I have and boy, did that open a can of worms.

I don't have a disease, they said. No, no. It's dis-ease about my life. And, by the way, had I heard about THE SECRET?

That's where I stopped the conversation and remarked that I don't believe in THE SECRET because I've had a lot of crappy things happen in my life that I didn't ask to, so I'm not one to believe that by thinking about something it's going to happen.

Did I have so many miscarriages before Sophie because I took NSAIDs for pelvic pain and poisoned myself, because I have some sort of huge autoimmune thing, or because I wasn't projecting an image of myself loving motherhood?

I used to think any and all of that, in a sort of roundabout way. I thought that BECAUSE so much bad had happened to me in such a short time, that LIFE was about to bring me ALL this bounty. I was going to rewarded for my patience.

Only, it didn't happen.

A lot. Of Waiting. Went By. A LOT.

I started to get cross. And impatient and angry. Lots of angry.

And I became a really ugly person. I was mean and desperate and completely 100% out of control within myself.

I used to dream, day-dream, and write down all these wonderful things that were going to happen. X would decide this and we'd go Y. And they were ALL SO HAPPY. I drew picture and I wrote poems about these bountiful rewards that were coming.

And they didn't come.

My babies still died. My cat almost died. My husband left. And Sophie's still sick.

So...

What the hell?

And that's when I started to throw away all those lists and dreams and pictures. I used to wish for things whenever the clock would read 12:34 or 1:11 or 11:11. ALWAYS. I'd always wish for something in my lists.

And then I started seeing those times and being THANKFUL for what I have. I have a pretty amazing life, actually. I have awesome friends, who I don't get to see all that often, and I owe them more time. I have an amazing child who is the most creative, brilliant, spirited and sensitive creature I've ever met. And, most of all, I have a wonderful partner.

The same one. A ton of people, all in a matter of 72 hours or so, started asking me about Matt. And I don't actually know what to say. Things are good. We are enjoying each other. We're enjoying being a family. He was so brave to leave and put me on a path to health. I am so thankful for him.

I no longer hate my cold house. I see it as a wonderful home to our tribe. It's cold, yes, but it's weathered gales and sleet, hail and me. We have a huge reserve next door for the boys and it's cluttered. Cluttered but loved.

6 weeks ago I stopped biting my nails. A small blip in the meaning of life, but, for me, it's been huge. I beat that anxiety. I found some calm, some peace, in the fluster of life. I also attempted to give myself a fancy French Manicure but wow, it looks awful. I wear my awful with pride.

I applied for a scholarship to have a 2 year degree in Birth Education and Teaching paid for. I worked on it, got 2 fab references and faxed it in. Well, Matt faxed it in, for I am aloof with technology.

And I didn't get it. And I felt sad, but it didn't absolutely derail my life. I embraced that feeling of sadness, told myself I'm going to have to write a really stellar application to the university (and the loan people!!) and try again. I'm actually sort of happy I didn't get it, because you had to promise 2 years full-time study and I couldn't do that.

It was something I really wanted, though. But it didn't destroy me the way it would have last year, or any other year in my life. But, would it have come to me if I had drawn pictures and written stories and poems about it happening? Or is weighing down life with so much expectation just a barrier to real happiness?

I feel more at peace within myself and with G-d. My dear friends know I began to feel like G-d was punishing me, subjecting me to the 3 D&Cs and the autoimmune disease. I felt hated and unlovable. Marked. A Sinner beyond repair.

When they told me it was a genetic defect, a genetic disease, I began to feel maybe there was something really wrong with me. It was even in my genes. I truly was marked. A burden. And with uncontrolled pain, that darkness and pain just ate into me.

And I don't feel that now. I pray. All the day. Moment by moment sometimes, in especially trying 5.5 year old situations. But my prayers aren't so needy now. They're more: Dear Lord, thanks for the sunshine today. It means she can go run around. VS the Dear Lord, please make it stop raining because I can't take 15 more minutes.

I know some people don't rely on faith the way that I do. I actually denounced G-d to myself following the twin loss. Because, if there was a G-d, why was this happening? But, as they do in 12-step programemes, I had to make room for faith and let it back in. And, over 4 years, it's worked its way back in.

I had to admit to myself, and to the world, that I am a co-dependent. I had only ever heard the word used in association with wives who bought their alcoholic husbands alcohol. I didn't know much about it. But I came across a study about children from bad backgrounds and found that co-dependence is a side-effect of abuse.

Children who grow up with/in/perpetrating violence are/will/maybe/grow up to become co-dependents. And that fantasy is one hallmark of the condition. All those stories and pictures and poems. I was living my life in fantasy to avoid what was really happening, hoping for this mystical Bounty I was to receive that was going to fix everything.

Trust me, it was a bit of a mindfuck.

And I fell apart at the feet of my counselor. And session by session we tackled the ugly crap that triggered the anger. Piece by ugly piece.

There are still more pieces. I always think of a new one and think, oh damn. Why am I not seeing Beverly anymore!? (She's too booked!)

Pia Mellody is THE groundbreaking thinker in the area of Co-Dependence. I have watched all I can find of her and her lectures are hard. They can feel cruel, but they are honest and to the point. (http://www.youtube.com/watch?v=nrLaaar02e4)

Pia realized that hundreds of people had passed through her office at The Meadows with stories very similar to her own. For one thing, a large majority had been abandoned, abused and neglected as children. Pia had long suspected that her own symptoms stemmed from her traumatic childhood and severely dysfunctional family system.

As Pia interviewed person after person, a unique and clear pattern emerged. All had five similar symptoms:

They had little to no self-esteem, often manifested in the carried shame of their primary caregivers;
They had severe boundary issues;
They were unsure of their own reality;
They were unable to identify their needs and wants;
They had difficulty with moderation.

These symptoms together marked an extreme level of immaturity and a level of moral and spiritual emptiness or bankruptcy...

Pia also showed how codependents carry their abusive caretakers’ feelings. Our natural feelings can never hurt or overwhelm us; their purpose is to aid our wholeness. “Carried” feelings lead to rage, panic, unboundaried curiosity, dire depression, shame as worthlessness or shamelessness, and joy as irresponsible childishness.

I began reading her books and at one point she asked which OCD habit you actively engage yourself in? I have many, but one that seemed the most easily altered was nail biting. And I told myself that if I could read her book and get through it alive, I could stop biting my nails.

Now I have proof in the dog-eared book and fancy/ugly French manicure.

I had to own up the realisation that I wanted other people to fix my problems because I was too scared to fix them myself. I wanted other people to make me happy because I didn't feel the things I enjoyed were worthwhile and I wanted them to like me so much I'd rather enjoy what they wanted. I was immature and angry and hateful and fat and overwhelmed by being angry and hateful and immature and fat and was just a big, ugly toad. I wanted to rage and hate and hurt and still be loved despite it all. And it was childish to think and do so.

I'd like to think things are much, much better. A better, realistic, no-fantasy, no intensity-ridden better. Baby steps, as offered by Dr. Leo Martin in What About Bob?. Baby Steps.


It's been 14 months of recovery for me. I envision 30 more years of recovery, to be honest. Painful, not perfect, less intense, less fantasy-filled 30 years.

Now I need to write my Mother's Day Post.


Links:
a) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314061/
b)http://addictionrecoveryreality.com/the-therapeutic-genius-of-pia-mellody.html#ixzz1LdUg1F52

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

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.

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 …

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.

Still's has a Dragon; Lupus has a Butterfly

When I was first researching the numerous possibilities for my illness, I came across the symbols of uniting people with chronic illness. I'm sure it started with awareness ribbons and then became full on projects to unite people, illness and symbols.

Still's Disease has a red dragon and Lupus has the purple butterfly. We all know ticks carry Lyme disease and they have chosen lime green for awareness.

What do genetic diseases have? Often you'll find photos of the actual genetic test showing the genetic default in the chromosome. To me, that's like finding a gold nugget in a stream. Real, solid proof. So many of us don't actually ever get that proof.




Other times you'll find drawings or diagrams about how the mutation is affecting the body. No one has yet to select an animal, nominate a colour or express interest in visualizing the disease for those affected.

The Arthritis Foundation of NZ chose orange and the orange fruit as their symbol -- bright, appealing and dynamic. Anyone with arthritis in their hands knows how hard it is to peel an orange. I do it just to prove to myself I still can, no matter how much it hurts.

Genetic Diseases are invisible to most. I look normal, often 'healthy' with a rosy glow (that's the fever folks!) and yet, inside, I am vastly different from you. But you can't tell. If I wore a pin or a t-shirt, would you stop and notice? Would you be able to tell then that I was different?

If I were to design this symbol, this 'look at me because I AM sick' visual, would I want it convey the seriousness of the illness? Or courage? Or determination? Would you choose to show how strong you are, even on days you just want someone to make you a hot cup of tea and put you to bed? Do you choose to show your vulnerable side? Would people misinterpret the vulnerable as weak or attention seeking?

Most people I have met want to be seen as strong with the weakness to the side. They want people to know they are sick but not different. Strong but weak. Brave but vulnerable.

I can't actually put all those words into an animals, shape or colour. If I had my daughter choose it would be a rainbow because that's what she's interested in right now, and well, the wonderful gay community beat us to that.

It was jokingly suggested to me to make buttons or pins with a giant Hugh Laurie face on it. You know, a sort of giant Dr. House staring into your soul as only he can do. Because we all know that when you see Dr. House it's going to be ironic, dramatic and rare.



He's a good looking guy, so we might just sell a few!

I think I'll go with the traditional DNA stack. Maybe long silver lines for the Helix and gold bars for the chromosomes? Maybe put a shiny stone or piece of metal where your genetic defect lies?

The DNA Store has a variety of existing designs so it'd be hard to not copy anything they offer.

I think, should I see someone wearing a DNA lapel, I would instantly assume that they were a biologist or truly a mad scientist, so I'm not sure my message would be getting across.

There are quite a few creative types making DNA strands out of coloured beads but I associate beads with children's cancer and the beads they 'earn' as they go through treatment. Those beads are so special, as are the wonderful children who earn them.

I can't go with Pandas or puzzle pieces. Pink and Red are out.

I'm thinking of going with a soft, furry white Yeti. Why not? The prednisone makes you go all grey and furry and as big as a yeti. Your mood swings can include a Yeti growl and you often want to be alone. And with those hot flashes, all that ice and snow would be welcomed!

See, he can even be cute!

This



or even this



Now, who wouldn't buy a Yeti pin?