Melatonin

This is mainly written as a resource for parents in New Zealand looking to start Melatonin in their child.

Our super brainy oncologist Paed (honestly, I'm not sure how we got blessed with him, but sometimes prayers get answered) often uses a drug called Nausicalm (Cyclizin HCl) in his cancer patients to stop vomiting nausea, however, it can also be given to children ages 6 to 12 in 1/2 tablet doses as a sedative. However, sedation with this is generally restricted to acute cases of distress, or, when the shit hits the fan and your paed is away. This is what the GP prescribed. I found it generally only effective on an empty stomach and that the full adult dose was needed (50mg) to stop the intensity of night time anguish.

It was suggested we look into getting Melatonin for Soph as it is a synthetic version of a naturally occurring hormone in the brain. It's something you can easily buy in the US for under $10 a bottle.

However, in NZ, it is restricted. You need to get a script. I'm not sure if it must come from a specialist, but my pharmacist said that most GPs would be equipped to write the script, so I assume it is not specialist only.

30 tablets cost $18.90 for 1mg. However, most people need more than 1mg, with children reaching accumulated doses of 10 to 12mg per night. So, if you can get the script from a hospital physician, this will reduce the cost as you do not pay for the Rx.

I'm unsure whether you can ask for repeats in the script so you do not have to go back to your doctor monthly.

On the first night, 1mg made Soph super drowsy for about 3 hours before she fell asleep. Last night she was up until 10:30pm, as it had no effect.

You can see this becomes a rather expensive venture when one considers that a dose of 5mg a night will last 6 days. You would be spending $56.70 a fortnight to sustain that dose.

My script tells me to increase dose to 2mg in one week should the initial dose fail to sustain a sedative effect.

I suppose one might apply for a child disability payment for the medicine as it is not covered by Pharmac and most likely will not be refunded from Southern Cross.

You can also try www.cherryvite.co.nz for a natural occurring source of melatonin, the tart cherry. Grown and made in the South Island, you pump 3 squirts of the cherry vite into a glass and take it at night. I have not had much success with getting Soph to take it, however, it might be worth a try for those trying a lower doses tablet and want to avoid the extra expensive of doubling or tripling a dose of tablet melatonin.

You can also get capsules if your child can swallow gel caps. However, it too is not cheap and it seems almost irresponsible for the govt to not provide children with autism or ADD/ADHD disorders with a relatively side effect free drug in favour of supplementing chemical drugs they've bought cheaply in bulk.

Parenting Eeyore

A long time before I wanted to have children, I dreamed up the most perfect nursery you could imagine. It was going to be in the inside of Pooh Bear's house. I was going to project life-sized images of Pooh Bear's humble abode into the room and get an art student to paint it all. It would be as though you walked out of your house and into the mind of AA Milne.

I bought old replica print copies of Milne's original drawings, treasured and revered. I touched the cover lightly most nights when trying to become pregnant (and trying to remain sane).



I was a Pooh Bear girl. I carried a larger yellow bear with me on holiday in Rarotonga and he came to many dr appointments, tucked into the back of the car, awaiting whatever medical disaster that was about to manifest. I had grown up on a serious diet of yellow bears. I did not consider him dumb, as many people often refer to him as, but that of a wise, mountain bound sage. Growing up, I had a wonderful Pooh Bear night light that played the Winnie the Pooh song. You twisted the honey pot to release the chimes. I had a Pooh Bear print pillow strapped to my bottom as I learned to roller skate and broke my tail bone.

While Tigger grew massively popular in the 90s, I remained true to my honey obsessed inner talisman. I was and am my own version of Pooh Bear.

However, I married my own version of Rabbit. And Rabbit didn't believe in setting up a nursery, too worried about the cost and whether it would impact the home's value. Over time I had accumulated various Pooh Bear toys, an entire set of characters in a garden theme released by the Shell station years before.

I made do with what I could, being on a tight budget. However, I knew my child was going to be a Pooh Bear, possibly a Piglet or a Tigger.


I hadn't expected Eeyore.



When she was a few weeks old, I would place her in the bouncer with the dangly toys hanging to encourage her to whack and kick them. My brilliant child had amazing hand eye coordination for someone who didn't sleep. At all. Ever.

I propped toys on the top of the dangly toy bar so they would look down and and her and she'd be surrounded by smiling faces, as my own was often covered in tears.

The one she took the most like to was Eeyore. She would smile to him and coo to him. I remarked that my child was an Eeyore, bound to grow up into a dark grey legacy of pessimism and stoicism. My supportive mother-in-law suggested it was because he had big, alert eyes. But I knew. I ruled my life by the wisdom of the Bear, how could I turn my back on the wisdom my daughter was displaying.



And she has always been an Eeyore. Contrary, tart, bitter for her age, afraid of emotion and easily embarrassed by them. She would accept life better if she were a robot, by her own admission, free of emotions and cares.

She carried that Eeyore around for quite a while until she developed her Barbie obsession. Once Eeyore went into the dryer and his mane frayed, she lost interest in him as he was now a bit more mad scientist than sad loner.

Recently we found the tropical holiday sharing Pooh Bear. When we moved from our large, warm designer home into the cold, barren and (I shall refrain from calling it a dump) certainly smaller home, a lot of our goods went into the garage, to be lost for years. Pooh Bear has now been brought into our active lives. He's had a bath, hung by his legs to dry, cooked many dinners and said many good nights, but the girl remains staunchly an Eeyore.



It's been a difficult week for us. In the morning she wakes, often happy and chattering away, but comes down the stairs to revert into an angry, contrary and anxious child. She screams and yells. Both parents desperately try to reign in any impulse to yell and scream. Both give encouragement to one another to push it down, take a breath and re-emerge patient, kindly, loving.

It is the way I wish I had been parented. The urge to smack, yell and kick are growing inside. It is all I know. This is a foreign territory. I have parented as a gentle, kindly, loving parent for so long, much to the amusement of parents who find gentle parenting a fallacy.

Biblical verses about rods and time-outs and how hitting did no one any harm get thrown my way daily. I find it irritating as I don't begin to preach to you about your downfalls as a human being, but it's fine to 'correct' me as you see fit. That's ok, you're going to die a horrid death in my next novel. ;)

I believe you can parent gently. I believe you can parent with an open heart. But I also realise you will, like I did this morning, hit a huge wall. There comes a point where you love your child but you don't like her right this second. When time-outs don't work as you don't have all the time in the world to address every issue.

When parenting a child with Autism doesn't work with your parenting style, or any parenting style really.



I shut down this morning. I just couldn't do it. My body hurt and it hurt to physically push myself down the stairs. And the child who had been happily chatting away to Pooh Bear and I was now a sulky, dark, angry child who refused eye contact and yelled.

I let my husband down. I just walked back to bed and covered my head. I was physically unable to do it. Emotionally broken. I tried to cry, to yell and scream but I was suddenly hoarse, unable to speak. I opened my mouth, pushed with all my might and nothing. I was robbed of motivation. I could't even force myself to get up to go to the toilet.



Eventually I was able to move. To shed tears of frustration. To realise that living with a child that is completely emotionally out of control is hard. Here we are debating whether to put her on an antidepressant and so many people have opinions. So many voices of dissent. So many 'I could do it better than you's.

Other Autism parents say we need more structure. Structure falls blatantly short when the child is stuck in a cycle of screaming and refusing to allow you in. But, I will try. Our house is a mess. It always has been. It's the coupling of people who don't mind mess with a child who constantly creates mess. I can tidy up only to find she's placed things back where she wants them.

I refuse to change my gentle ways. I refuse to parent opposite to my Attachment soul. But it is hard. All I want is to slap her face, send her to her room and throw away her toys. I feel it burning in my body. I feel my hand stiffen.

But I know what happened to the little girl inside me, battling her own demons. I grew to hate my parents, not trust them and seek ways to escape them. My house was more violent than a single slap every now and then, but one slap leads to the next. One moment of meeting MY need to hurt leads to more moments of choosing MY needs over meeting the needs of the family.

We are a broken family. Broken by anxiety, sleep deprivation and behaviours common to those diagnosed with autism. How is physical violence against one another going to replace, solve or divert any of the above? How is sitting on a stair step or naughty chair for 6 minutes going to change someone who is consumed by anxiety about death, monsters and failing?

Someone who sits in a classroom for hours pretending to be perfect only to come home, to her soft spot and lose her shit?

How does one get into the head of Eeyore and ask him kindly to melt into society? To be nicer to his parents? To accept the help around him?

If AA Milne didn't have an answer, I can't imagine how I'm to find one.

The Boob Update

You'll have to bear with me as I hack this out on one of those neon pink silicon keyboards. The power output to my laptop finally died out and we've had to throw the hard drive into an older laptop with a broken screen. Not the ideal way to operate, but at least we're operating.

So, I saw the breast surgeon who was one of the wankiest doctors I've seen. I rated him as #3 in the rude stakes. Unable to operate his own ultrasound machine, he also yelled at me for covering up before he thought necessary and then spent the last 10 minutes of our 30 minute appointment online googling for a drug contraindication I told him about when he suggested I take evening primrose oil for the breast pain

He was also 1 hour and 20 minutes late to the appointment with no apologies.

Evening Primrose Oil is somewhat effective in combating cyclical breast pain, however it has reportedly had no effect in non-cyclical breast pain. It is also contraindicated with one of the drugs I take.

And for this privilege, he charged us $175. I wish there was a rebuttal process for when you see a doctor who provides you with nothing and verbally assaults you.

Basically he said that there was nothing pathological in the boob (which we knew from the ultrasound the previous week) and said that I was a rare oddity in that I only have 2 milk ducts in my left boob.

When I spoke with my MIL about this it occurred to me that my daughter never settled on the right boob and preferred the left, probably because it had a slower flow and the right would have been so different in milk flow and quantity.

So, I really do feel like a superwoman having breastfed, mostly 1 sided, for 21 months from a boob with only 2 milk ducts.

What we learned, other than you should always listen to that predictive voice inside, is that there is nothing structurally wrong with the breast, no filled ducts, no lump, bumps or bruises, nothing wrong at all. Just pain. His sage advice was: Suck it up and deal.

Yes, because you're just a silly, silly woman complaining about some pain. Suck it up and deal. Can you imagine a doctor stating that to a president or prime minister? No, of course not. But because you're just a woman, well, suck it up and deal.

Would you pay for someone to tell you that? To your face? Me either, and yet I have to. Because he's a doctor and I was given a 'service'. I don't agree with the outcome of the service, but I will pay it. And tell everyone I know not to go to him.

Aside from the breast issue, anxiety is at an all time high here. Soph hasn't been sleeping much which has such an impact on her moods. She was prescribed a sedative, basically an anti-nausea med, but it really was helping. However, it was only helping at the adult dose, no where near as effective at the 6 year old dose. So, we only got a couple nights of sleep into her.

Last night she was acting very quiet, unable to make eye contact and lying face down on the floor, her really autistic behaviours. I tried to guess what had happened and hit upon something with her teacher.

I made quite a few jokes of the outlandish nature, like her teacher had decided teddy bears were evil and was creating a petition to outlaw teddies in NZ. That sort of just seriously random and outlandish statements to unarm her. She laughed quite a lot and in the end said that she was really scared to tell me what happened in case I was mad at her.

I asked if it involve Hamish, a really bad kid at school who she had a run-in with earlier this year. She said no, I could breathe again.

She said that she was trying to log in on the computer and she got her login wrong. Instead of SP2869 or whatever, she only typed in SP2 and her password. The computer was locking up after 3 attempts and the teacher came over to help. Some sort of disciplinary verbal exchange took place in which the teacher corrected Soph and Soph yelled at her and rolled her eyes.

Now, this sort of thing always happens at home. We call it the sassiness and we are working on correcting and replacing the behaviour, but in a child who is tired, not eating, anxious to begin with, it's hard to contain. I believe Soph was told it wasn't ok to yell at the teacher and roll her eyes and Soph felt truly awful about it.

She told me it was repeating in her head over and over and it just wouldn't stop. I tried to explain some things I've been taught to overcome ruminating thoughts, but of course, she didn't want any of it.

I made her write an apology card to her teacher and I hope the teacher sees this child is actually struggling and won't keep repeating the oft quoted, there's nothing wrong with this child; she's an angel.

We've had a referral to the child, youth, adolescent mental health care team (CAMS) and they're posting off a letter. We will likely receive it next week and I ring in to book. I don't know why it has to be this way, but it does.

Hopefully they'll be able to help us medicate this anxiety and get her into some sort of child therapy for her anxiety issues because anything I suggest to her gets shot down.

She's at a playdate today so I'm getting lots of doing nothing done. I've tidied up some recyclables that needed to be washed and sorted. Going through some old kids clothes to get onto an auction site. Some extra cash for xmas would be lovely.

Spring is here and so is the pollen. The pollen aggravates my sinuses and my myalgia is quite bad in my calves and arms. I'm just not sleeping well at all and I spend the entire day exhausted.

Thinking of investing in some herbs to trial.

Currently taking magnesium, calcium and spirulina for energy. It's better than it has been, but I'm not superwoman and that annoys me I hate life taking a back seat to fatigue and exhaustion.

Hoping he's no Boob

It's boob day.

I'm not feeling too flash today and feel really pessimistic and melancholic about it all.

I've met so many specialists who direct all conversation, don't listen, preach and then take your money, leaving you feeling alone, unheard and pretty pissed off. And I'm getting that vibe today. I don't know why.

The left boob has been so sore and that worries me. I can't sleep on it and whenever I roll it squishes and wakes me up.

I ended up taking the seroquel on night 2. I had begun to get the shakes and that buzzing noise in my head had returned. I told Matt it sucked that I feel so chained and addicted to it, but, as he pointed out, it's a med I take for a purpose.

So, I suppose I really do need to work with a knowledgeable Pdoc and find some way of keeping mental peace without upsetting the boob.

As we get closer to Breast Cancer Awareness month (October), I am seeing so much more in print and on tv about 'being aware' of symptoms, seeing your doctor, etc and it make me feel all the more that I'm going to be dismissed and shown the door.

I never should have seen the female doc. I should have gone straight to my normal GP and just gotten over the conservative side.

I found something called Myofascial Pain Syndrome that often has breast pain and inflammation. I'm going to try to ask the breast surgeon about it but I'm so used to being dismissed, I doubt i'm going to get far.

So, for now we wait.

Funky Boobs

When you have funky genes, it makes sense that everything else about you is funky. Funky gallbladder, funky knees, funky sense of humour. And to that, I can add funky boobs.

Earlier this year, Soph (and Matt) were diagnosed with Asperger's Syndrome. It's hard to say whether you're actually 'diagnosed' with Autism or whether the light has finally shown through and you come to know who you really are.

We switched schools when the first was not adequate for Sophie's needs and it was a really stressful time because we hadn't yet received the AS diagnosis for her. All we knew was that she was struggling with tremendous anxiety and having a difficult time with everything. She was basically shutting down in class: no talking, no eye contact, crying, etc.

It was thrown back to us that we were doing something wrong. We kept saying that it must be the teacher (who was quite a grouchy, yelling teacher) and in the end we all decided to move on.

Interviewing at other schools is hard because you're viewed as either someone who's been trodden on or someone who's going to trod on you to get own our way.

Not pleasant!

I was really struggling to get some sleep, up at night with Sophie screaming in her sleep. Up at night with nightmares. I asked my GP for something, ANYTHING, to help me sleep. I'm already on Seroquel 300mg at night for insomnia. He said, go ahead, take 2 on nights you're feeling quite stressed.

It really does nothing more to help you sleep, I found. It does, however, make you more zombified. Not really worth it. And for those of you looking to see if doubling your dose will help you sleep, it doesn't actually. Try some valerian tablets along with your seroquel dose.

Or get up. Seriously, the zombie nature of the drug is so difficult to tolerate, and if you're taking pain killers, please be careful doubling your dose and taking any sort of codeine or narcotic.

In May I started getting twinges in my left breast. I don't really get tender breasts before a period, so if I do feel something, it gets my attention. It was like a sharp stab and it was dull and came and went.

However, as time went on, the breast was getting bigger, angrier with that stabbing sensation but there was never a red mark or a lump or even anything coming out.

Finally, this past cycle, it was getting to the point of severe pain and a yellow goo coming out by itself. I didn't really freak out because I knew whatever it was, it was going to get handled with care and swiftly.

I saw a GP, not my own because he's a man and I don't feel comfy with a man handling the gear, and she seemed ok. She didn't think it was an increase in estrogen or prolactin. She was more concerned about the lump she expected to find.

I hadn't found anything. Matt hadn't found anything. She assured me she was quite good at finding them. And then, she didn't find anything. Nothing at all.

That's when she started getting worried. She mentioned that the pain radiated upwards and into the underarm and it could be a thyroid thing or nothing but it needed to be seen. So, 2 days later I was in the ultrasound room with the older woman trying to get my boob to lactate whatever this goo was.

She couldn't get anything out. She couldn't find any lumps, calcium or pea sized blocks in the ducts. And, she said shaking her head, the pain isn't in the dense tissue as you'd expect with Fibrocystic Breast problems, it's all in the light tissue.

The radiologist came in and said that given my age, they didn't think a mammogram was wise because of the dose of radiation I'd need to get a good look. All my thoughts on whether to get a thyroid guard were directed to that fact that we NEED them if the dose of radiation is high enough to dissuade a radiographer from a mammogram. It could be the age and density of my breasts, but it did make me worried I hadn't bought a thyroid guard.

When she came in to print off the scans, she told me to go home and do some digging with my prescription medication because she does occasionally see this in HRT patients. The extra estrogen, she said.

So, we came home, happy that there is obviously nothing pathological with the breast but shaking our heads in wonder. There is nothing wrong and yet the breast is leaking goo and it hurts! Hurts!!

I started icing it instead of putting heat to it and that seems to help. I tried cabbage on several occasions but it did nothing. Perhaps hot cabbage leafs might have given more relief. It's not really something I'm willing to try just yet. The idea alone sort of icks me out.

I started the steroid because it makes everything else funky, might as well go there. Nope. Nothing. Steroids aren't really indicated in boob disorders at all, except in the treatment of abscess or acute mastitis to help the swelling.

I went to the Omeprazole and got lots of links to breast leakage and breast growth with other gastro drugs like Domperidone. I was given Dom in 02 post gastroscopy to deal with quite bad vomiting from 'stiff' digestion as the old man said. It brought in full milk. That's when I started getting a bit pissed that the female GP didn't even order a single blood test.

So I looked into Seroquel, the drug I LEAST expected to cause breast problems. In high doses, and we're talking the high dose schizophrenia doses, 1600mg a day, there is quite a common report on breast inflammation, breast leakage and discharge. But I take 300mg and have never been on a higher dose. I couldn't find anything about breast discharge at 300mg. That's when I went to the crazymeds forum and asked. At 300mg, the drug begins to impair estrogen receptors and increases in prolactin have been noticed.

So, if I had been at 600mg for a few weeks, that might have been enough to trigger the breasts to begin to fill, then I jumped off, leaving the breasts in a hormone flux.

It seems the only solution to the problem is either to get a script for a drug that turns off the prolactin centre and take the 2 together for the rest of your life, or you wean.

I didn't want to wean. I spent about 48 hours in a funk of 'what will my life be like' post-Seroquel. Then I had a horrible day with the pain on Sunday and thought, nope, I'm getting off. So I read all Monday on how to wean.

The general practice is 50mg a month while titrating up with another drug.

50mg a month means 6 months of possible breast pain. And a lot of pain killers.

The most closely related drug also causes prolactin issues, and I don't want to do that. Plus, I thought, it will take MONTHS to get in to see a psych doctor. I will ring and make a GP appt and I will just go down 100mg and see how that feels in the boob.

Night 1: Not a lot of sleep but some. Lots of waking up in active tremor. Headache. Nausea. Runny Poo.

Thoughts of OH G-d HOW AM I GOING TO DO THIS!?

Better with hot tea.

The boob is absolutely no better, but I imagine until we get the anti-prolactin drug into my system it's just going to keep hurting.

I don't recall what colostrum was like, but that must be what the goo is, though it much denser and more like thick pus. I can't make it come out, it just comes when ready. It has no odour and it isn't stretchy like mucus. There is no blood.

I'm hoping the breast surgeon has a clue and gets me that drug. Breast pain while weaning is sort of a double edged sword.

Off for more hot liquid to stave off the nausea.

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

Catching Up

I need to find the time in my life to write.

So much has been happening and there are so many emotions surrounding it.

I saw the Rheum registrar, a young Indian man, who seemed very nervous and slightly with the deer-in-headlights appearance. It's the one part of my illness I absolutely hate. I just simply can't relate to people who treat you without that essential human connection. I guess if I came across someone who was really extraordinary and something I've always wanted to see in real life, I'd be excited too, but, as a patient, it sucks.

Basically, I've been denied my requests for funding for Anakinra. And they want to take away my diagnosis. That really unsettled me for a few weeks. I started having nightmares again. I simply am running out of options and it makes me feel I need to find another Rheum. Someone who will take these dead ends and DO something. Be proactive. I can't live my life waiting for someone to have the time for me. I've already done that in my personal life with poor results.

Miss S saw the Paed Rheum who IS proactive and has some pretty big friends at London's Children's Hospital where they will do her genetic testing. However, she has some FIRSTS that have to happen. 1) We have to have blood test proof of an elevated inflammation marker, something we have NEVER been able to document in me, save for the gallbladder thing.

We also have to do some testing on Soph, though, at this stage, we're not sure what it will be. It might just be xrays but it could involve explorative surgery. No mother looks forwards to that decision.

School has been a major source of anxiety for us all, to the point of insomnia. Lots to talk about there. The bottom line is the teacher is unhappy with Sophie having time out 2 or 3 times a day for a rest, for her ongoing fatigue. I don't want this to become a permanent source of anxiety for us. She is showing ongoing fatigue signs, she's not coping with the heat and it should be a simple solution.

Instead, it's become a 'We just pulled our kid out of school because of 1 teacher'.

I attempted a 7 day Colchicine trial, suggested by the Registrar as part of proving my 'need' for funded drugs. I made it 5 days and can't do more. Everything burns. It hurts to move. The nausea and stomach symptoms are horrendous. I felt like crawling into a hole and being left for dead earlier today.

Summer has come and gone. It makes me melancholic to see Autumn arriving. It makes me sad it's March. It makes me sad it will be 4 years in 9 days.

Soph has been home for 2 weeks and that's 2 weeks I haven't been going in for my voluntary role. That leaves me with tremendous guilt, given we've just had mega need there due to the displacement of Canterbury residents following the earthquake in Christchurch.

I feel like I'm holding things together with some sort of dissolving threading. It's going to give at some point.

To get me through, I've been taking about 6 kids vitamins every day. It does seem to be providing wonders of energy and health. I remember it was my tonic when Spph was born and we weren't sleeping.

I've been thinking of adding Water kefir to my list of crazy things to try and get well. Must try to find some in nz to get started.

My head is just killing me but I can't lie down because of the colchicine induced nausea.