Chronic Illness Cat (The Meme You'll Thank Me For)

This is Chronic Illness Cat:



Isn't he sweet? I didn't create him, but I'm glad he's here. I hope you enjoy him too.

Chronic Illness Cat knows what it's like to have Traps:





But, you don't look sick Chronic Illness Cat!



Is it contagious Chronic Illness Cat?



He also knows what it's like to meet a crappy specialist. Like Dr. R, who told me I had Lupus and was being a woman about it. Yeah. He's lucky he still has gonads.



And he also knows what it's like to feel discrimination.

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To all you suffering from horrid, chronic illness and waiting for a diagnosis, big, big hugs.

A Flare Survival Guide

I'd like to wave to my regular followers. Thank you for coming to this tiny blog and visiting. I'd also like to thank my google search visitors who are coming here to learn more about TRAPS. Most recently some folk from a hospital in Sweden visited and I hope (!!) found information to help someone with TRAPS.

I'm in the middle of a flare, the first in many, many months. I almost didn't recognise it.

For me, the TRAPs flare always follows a theme.

First there is an increase in output, ie poo. Lots of poo. Not watery poo that you deduce cholera simply from the symptoms, but there is more than normal. I also thought maybe it was finally time to cut the wheat.



Then, there is the ulcers in the mouth. At present there seems to be just one on the upper gum of the top jaw, but when the output was increased there was one on the inside of the left cheek and one at the front of my mouth on the inside of the bottom lip. I chewed on that one. Not smart.



I have many films like that one. She has incredible breasts though, doesn't she?

Then came that feeling of an anchor on the chest. It feels like having a 20 pound/ 10kg cat on your chest and you can't quite inflate it all the way. That's the pleurisy setting in. It hurts. It sucks.

Furiously, the joints begin to react. Mostly in my spine and my hips, though my feet and hands are not untouched. I know it's really bad when I cannot put pressure on my right foot, and I cannot move my fingers. They burn. It feels as though they have been in ice water or holding snowballs bare handed. They are red, angry and curved. They do not straighten.

Instead of taking it easy yesterday, Sophie and I walked up and down the street so she could play Mail Lady (or Post Mistress depending on how English you'd like to be). I basically crawled into the car and drove to get Matt. I could not move or use my hands after 8pm last night.

And yet, 4:30am was waiting for me. Voltaren does that.



I struggled to get down the stair this morning. Something about moving the hips and having to press onto the foot was just too much to mentally bare. The brain ticks along but the body is tired, weak.

The lungs feel stiff, like a towels line dried in the winter, crinkling with touch. It doesn't hurt so much as it feels difficult trying to inflate and deflate with ease. There's an overwhelming feeling of never getting enough oxygen in.

The bowels play nicer, but the joints are horrid. Sometimes that cholera feeling comes back and it's hard to wipe. This is why bidets were invented.



I don't know what to do. Do I ring my GP and make an urgent dr's appointment? No. I've done that in the past. All they do is up the steroid to 40mg with the intent to wean in 2 weeks. HELL on earth!! Do NOT do that to your ongoing steroid patients. It's horrrrrid. The headaches!

I could get another chest xray, but I'm tired of paying for them and being told, oh yes, look. You have large breasts and pleurisy. Apparently noting the size of the breasts is crucial. As if radiologists have a boob grading system. (Do they?)

I could go to the hospital and wait 18 hours for someone to see me at 2am and tell me they've had to break out the Merck manual and look it all up and...let's just raise your steroid and see how it goes. Do you want a steroid injection anywhere? The answer is oh G-d no. Those hurt so much!! I always ask, why are you looking in a book from the cupboard from 1992 and not using an app on your phone?

Wouldn't that actually make sense?! The 1992 book has 15 sentences on auto-inflammatory disorders. Period. Most are treated with steroids and immuno-suppressives.

For those of you googling to talk to patients, please advise your colleagues that you CAN get Merck and the Davis drug guide TOGETHER for android phones here. Yes, it is $80 US, but you can probably get it onto one platform in the ER/ED or office and you can share it around. Toss those old books and get informed. You didn't learn much at school about recurrent fevers and auto-inflammatory diseases, but there is a TON more info today. Also, please don't expect your patient to wean off steroids 1mg every 2 to 5 days. That's just cruel.



So, what do you do? If it's your first big flare since diagnosis, go see your doctor. If you're feeling really short of breath, go to the ED/ER. A steroid inhaler DOES work, despite what people may tell you about pleurisy. Anything to remotely increase your ability to get more air in does wonders for your brain.

No, it won't make it all go away, but even the placebo effect can be useful.

If you are hurting and are alone, call for help. You need to be around people in case you take a turn for the worse. Or, like so many times in my life, you need a bit of help 'cleaning' up.



Lemon and water, whether hot or cold, is good for you. If you can't stomach food, you still need to drink. Especially if you have a lot of output. A supplement like Spirulina is a good one to have on hand as it's got a lot of good without the weight of something like a multivitamin. A multi can make you feel really nauseous and ill.

Keep on top of the pain. That means you take the tablet BEFORE it feels like a knife is stabbing the joint. It also means using cold therapy to reduce the swelling. Less swelling, less overall pain, or so the theory goes. Again, if you cannot stay on top of the pain, GO IN. There is NO shame in admitting you hurt. Tell them if you haven't eaten so they will give you something to stop the vomiting from Morphine.

Secondary inflammation in organs is soooo common. Kidneys, stomach, pancreas, bowel, etc. Eyes are also very sensitive so stay inside or use dark sunglasses. Headache is so common. You may or may not have a red, flushed look to your face. And, you may or may not catch a fever on a thermometer, depending on how you're taking anti-inflammatory drugs.

If you have a high fever with muscle cramp, water, almonds and magnesium tablets can help. Muscle burning and muscle fatigue are common with little symptom control. Rest, cold packs and sleep help but there's little you can do tablet wise.

Gentle stretching can help the sore joints, but over-stretching can do far more damage. Try to protect the sore joints, but don't overcompensate or you'll find BOTH sides are hurting in different ways.

If you're flaring around your period, please note this. Some women DO find that flares are worse around their periods or ONLY occur around their periods.

If your eyes are sore, keep them moist.

And, of course, document everything. You will need this to take to your rheum.

I'm currently on a mental battleground. Do I up my steroid or do I suffer? If it lasts a few days, I'll survive. If this goes on for weeks, I will not be able to physically handle it. However, I do NOT want to wean. And, I don't feel like trialing Colchicine again. It does nothing. Stop suggesting it.

Colchicine works in a small percentage of people with TRAPs. Usually, however, a higher and more dangerous dose is needed. I found relief with 2.5mg a day. It also made me very, very sick. The muscle burning is very bad on it. The dehydration is awful.

0.5mcg is not worth the opening bowels or vomiting. You MAY be that small percent that respond favourably, but most likely you won't be and it's better to start a drug trial like that at the end of a flare and hope for flare prevention, not as a band-aid solution to a big problem.



Rest. Read. Think of it as a stay home holiday or vacation and not that you're succumbing to an illness that is ravaging your body and brain. The more normal I treat it, the more normal people respond. You can be TOO blase about it, and that's not good, but only you know when you are in dire straights and when laughing about poo is ok.

Leave heat packs to the back and spine or hips and keep the smaller joints cold. Make sure you eat something, even if it's a piece of dry toast or a slice of cheese. Be honest about the illness. If it's hurting, say it's hurting. Hiding or denying pain only makes it worse. And, if you're letting someone down today because you're out of action, apologize but do not internalise. Everyone has an off day. And most people aren't as sick as you are. They're shopping or seeing a movie.

Bigs hugs to you dear Trapper. Just surviving this flare is all you need to be focusing on. You CAN do it. In fact, you ARE.

The Way You Wish

I sat at a parenting support course this weekend. Learning ways to understand grief and anger and familial stress so that one day, should I be called upon, I too can support someone else when their world has just taken an unpredicted turn. From bad birth outcomes to startling diagnosis further down the track. Everyone has loss. Loss is loss is loss. I may not know where you're coming from, and you can't possible know my loss, but together, our losses are losses. The depth, the pain, the consequences are vast.

One of the things I found myself repeating, in almost every group work assignment was: I take a deep breath and I parent the way I wish I had been parented. And a few eyebrows would raise and someone would eventually come over at a break and ask what I meant by it.

I'm not shy about admitting my passion for Attachment Parenting and the belief I have ingrained in myself of Gentle Parenting. I began reading about Attachment Parenting when trying to become pregnant. I knew there was MORE out there than the shit handling of my own life. I knew there had to be a way to raise a kid that didn't involve him contemplating suicide as a teen.

And there it was. And it lead to internet searches for more information and more forum readings about Gentle Parenting. Not to say that I'm perfect and I strive to be flawless, but I have worked VERY hard over the past year and a bit on mindfulness and being present. I did a 19 week (57 hour) group course in Anger Management because I wanted to learn how to feel something. Normally I would start to feel something, anything, freak out and push it all down until it would just blow up.

And it was a common occurrence in women. You're so primed to look after others that it can feel strange to want to look after yourself, especially if you are a product of domestic violence or neglect. (Especially the neglect part.)

This is stolen from LLL:

"Initially, the phrase "gentle discipline" may evoke mushy, weak, absent-minded discipline. It may remind you of families with no boundaries, children controlling the parents, or selfish, impulsive children that no one wants to be around. Or perhaps you might think of parents afraid to say no, afraid of their children's tantrums.

This kind of parenting does exist, but it is best described as "permissive parenting." Fortunately, gentle discipline has nothing to do with this ineffective and problematic style of parenting. Gentle discipline is strong and effective."

Gentle Parenting isn't about kids running wild and manipulating parents. All kids run wild. And all kids do eventually learn how to manipulate the people they love the most. It's how we, as evolving creatures, work. But, gentle parenting is about putting the need of the moment ahead of MY need to feel validated and in control of the situation.



So, my 2 year old spilled pricey unhomogenized milk allllll over the floor. I wanted to scream, to slap her. To yell and throw the milk container at her. Those were the feelings I had. Right or wrong, that's the way I was working. But, I took a breath and asked: How would I have wanted someone to love me and discipline me?

And that's when I really understood what I was doing. And I use it in every situation. How would I like to be treated that I never once experienced? Kindness. Tolerance. Patience. It works with Adults and truly, ourselves.

Those 57 hours were some of the hardest I've ever experienced. Facing grief. Facing the past. Accepting and acknowledging neglect. And then finding the peace to want to move forward.

"Does it work?" was the most commented statement in response to my Gentle Parenting statements. Does it work? Sometimes. Yes. Sometimes. No. But it is ALWAYS keeping myself, my child and the situation benign and not dangerous. If you're hitting your child, you're not doing the right thing. If you're parenting by threat of physical violence and put downs, it needs to stop.

And that's before we throw in the extra demands of parenting with special needs.

Yes, your child has special needs. Yes, life is hard. I know how it can be. But, it's not ok. Not that all traditional parenting ends in violence. But, a lot of it does. Putting hot sauce on your child's tongue is abuse. I hate to break it to you.

Putting hot sauce on the tongue of a child wit Autism is abuse that needs to be reported. Not that this came up at my parenting course, but it has appeared in some of my internet searches on Autism and Discipline.

Imagine yourself as the small child. The walls are endlessly tall. People tower over you. They hold all the power and control. You are dressed, fed and do what people tell you to do. You act out because of whatever is going on in your insides. And someone hits you. Or threatens you. And tells you they're doing it because they LOVE you.

Now, think about how that child would want the reasonable, sane and loving adult to act. It's not a wish for permission to be a hellion on earth. But it's wanting someone to love you and set boundaries that are fair, proven and gentle. Kids don't stop hitting because you hit them. And they won't stop yelling because you yell at them to shut up.

Good places to start are with Dr. Sears and Wikipedia. This Blog is a nice place to visit as well. You can learn a lot here. And, though I do not subscribe to a religious way of parenting, there are always good insights here.

No, you don't have to eat organic or hug trees. You don't even have to want to give up driving a SUV. You don't have to breastfeed or want to breastfeed. You don't have to eat macrobiotic or cloth diaper. You don't have to wear your baby or home school. And, especially if you're like me, you can openly dislike The Secret, the Law of Attraction and all that bullshit. All it takes to parent peacefully is a commitment to sane, gentle discipline that respects the people involved.


Kids love without boundary. And they love you. Please love them.

Flight Paths

When you start opening up about the conflicts and incredible highs of parenting a child with special needs, you begin to receive tiny little offers to enter the worlds of other special needs parents. It's a dance similar to that of a pollen bearing bee. I offer a slight story of stress and my (lack) of coping and you mention lightly things aren't great either.

We nod, wishing to open up, but not wanting to suggest that your child may be 'special' in that way that no one ever expects. I nod my antennae your way, twitching, signalling mentally that I want to get to know you, to share, to support, to be supported. You twitch back but the bell rings and chaos erupts. My needs will have to wait.

Initially I don't know you parent a child with special needs and you don't know if I do either. But I remark how we're late all the time because we're having trouble finding socks that don't 'rub'. Other ears pick up that I'm a lax mother who just needs to lay down the law. Or take away toys for non-compliance, but you suggest that Woolworths is selling socks knitted with Bamboo and they're really soft. You casually mention your child is sensitive to touch. Our antennae are wiggling, our soft bee behinds are waggling. Yes, I have made contact with someone flying a similar path to me.



My ears prick and realise your child has a sensory disorder, hey, mine too. But I'm too shy to admit it. Because what if you don't actually know what it's like and you start on a diatribe about how a good boot up the butt never did anyone harm.

I listen to you mention that your baby has a tummy problem and hear you mention that singular word reflux. My memories cover me in emotion, awash with the feelings of failure and guilt that time brought me. I come over and tell you that mine had it too and ask if you've gone onto Crying Over Spilt Milk yet and rung their number? Because they have nurses who can help. You say yes and we both marvel at the way people are always there for you out of the kindness of their hearts.

I can't tell you the relief it brings, this quick, almost missed exchange. It's too early for me to whinge and moan to you, but we made idle chat and we talk about reading. My wiggle and waggle is beginning to match your own. I don't want to overstep my boundary with you and ask about your child or husband or family. So, I bid farewell and make the long walk back down the hill to the car.

When you go to school, you meet The Mothers. The Mothers are generally the same, no matter the school, the price bracket of nearby homes and the cars they drive. I'm sure it's been recounted in ways much more hilarious than I could, but it's true. You meet people of all types and they all fit into the various branches of socially acceptable. And occasionally, you come across those that don't fit into socially acceptable, like the mum who leans over and everyone realises she wears dental floss as underwear. (And secretly, we're all envying her freedom, body and apparent lack of restraint.)

And then you meet the mothers who are holding on by a hair, overworked, over stressed and under compensated. They smile dental poster smiles as they hear others talking about overseas holidays and snorkeling. They ooh and ahh at the mention countries like Fiji, Samoa or even Australia. They wish you well and tell you they hope you have a wonderful time. You tell yourself it's ok, one day.

Slowly, others start to identify you as a special needs mum. We're the un-manicured, tossled hair, no makeup still wearing yesterday's clothes mum. I've been wearing this shirt for 3 days you admit. Another mum casually admits she has on the same knickers as yesterday because non are washed. A third remarks she washes her sheets daily and doesn't know how on earth you people survive in such a state. Your heart sinks. Opening up is hard. Sometimes, people just don't get it.



Time passes with our dance, my steps further opening me up and your steps further proving you feel safe with me. Soon, we spend 45 minutes on the playground talking about unpaid bills, medications and how, actually, this wasn't what we signed up for.

I remark how I had this idyllic view of a family of 6, two parents, loving and in love, and four picture perfect kids. We were going to homeschool and have big family moments that heal all childhood wounds. It was going to be, well, absolutely perfect. And then, here we are.

And actually, your voice crack, maybe its good that we only have one because, you know, you'd hate for the others to miss out. And she says that she had a dream of having 3 kids and the first 2 were fine but the third, well. No one expects imperfection. Or poor health. Or a life-sentence. No one's dreams match up, but this, well, this hurts.

You overhear some others talking about going out with female friends to a bawdy show with men stripping down. It's ok, they say, they were raising money for someone's cancer treatment. You smile but inside you recount how no one is helping you pay for home help or brings you meals or offers to mop your floors. After all, in this country, it's not the done thing to ask for help. You're meant to be self-sufficient, humble and happy for others.

And, it's not that you're happy the other person is suffering. G-d no! You hold your child tight and imagine what it would be like to lose him or her, or for him or her to lose, well, you. It's unimaginable. Your gut aches.

It's just that you wish you had the right, the reason, the privilege of having bad days, of waiting all day in a hospital for an answer and getting one, and desperately sought moral support from others. Instead, what you get are leers from people in the grocery store who don't get it, unhelpful advice you didn't ask for, and bills. You wake up some days wishing you didn't wake up and feel enormous guilt over feelings those things. You love your child. You feel blessed for having this child when so many do not, and then you feel angry because damnit, what on earth did you do SO BAD to deserve all of this?

For my child to be dealt this hand? He or she is innocent and asked for nothing. I'm the one who brought him or her here. Punish me, damn you.

And your husband asks who you're talking to, as you're sitting on the loo, hand crunched tightly around a loo paper ball. He's stressed too, you remind yourself. He goes to work, turning off all the drama and emotion, so he can do a good job. To get paid. He comes home and is hit with a wave of the drama and emotion and reality is a cold, icy wake-up call. He's worked so much overtime you can't remember the last time he was home in time for tea. But we all sacrifice you say, holding yourself together. We all do it together.

You look at me and I look at you and I am praying that tonight you're going to understand my wiggle and waggle and that I am open to receive yours. We work together, like a hive, often our worker bee mantra overcoming our real, human needs.



But its not all bad, you tell yourself. The highs are so high. The pride and the joy is immense. Simple tasks that are dealt with without the drama and emotion are praised and the happiness is unbridled. It's something other special needs parents understand. Today, you say, we got into the car without tears. Hooray! they chime in. They get it. They feel that joy too. Your joy is theirs. Your sorrow is theirs. And their sorrow is yours too.

I hope, a school mother says, that she'll have an adequate life. You smile back. I hope she has that, and so much more. Then you selfishly find yourself thinking, I hope I have that. And so much more.

When people ask about parenting a special needs child, all the cliches come: The highs are high. The lows are low. The days are long and the nights are longer. But the years are short and time flies. How is it I long to tell you my struggles and my successes, but I don't want to burden you with them as well?

I hope to have my family work together as a hive. But I also yearn for my community to do so as well. I want you to love your child and educate him but also to prepare him for a life of service to others. To his future family and to his future community. So that he has the kindness, the patience and the desire to want to help my child and so many others, once we are gone. So that his antennae are primed and ready to accept and acknowledge the wiggle and waggle of other's flight paths.