I may make Bowen my bitch. Or vice versa.

Don’t want to jinx anything (ah, my old therapist would be rolling her eyes at the concept of jinxing), but my Bowen treatment today was awesome. Felt a change even before session had finished.

Two sessions left.

Think I am going to wean quickly from the pain med I started six days ago. Doctor told me it works by damping down nerves’ pain impulses to brain, and I think the nerve-brain connection is quite key in Bowen. I can always restart the meds if needed.

Apparently my pelvis was wacked up (my words, not hers) and is less wacked now. I’m feeling hopeful. I think it has helped a bit, but at the very least I found it deeply relaxing and enjoyed the session. Looking forward to next week!

PS. Anyone who may have information on Amitriptyline and any contraindications with Bowen therapy- or not- please do let me know. I’m interested.

Links and unlinks. Which is which?

Damnit on a platter. They both went down for a nap at 11:55 – and you know I’m not about to take that for granted. The past few days Snort has gone down and Coco has stayed up with me, though she eventually sleeps and then wakes when Snort does. So BOTH at 11:55? Party time. Blogging time.

Except I can’t find the phone.

I’m expecting a call from Dr. Shit (the one who made me cry when I was newly pregnant) to do a ‘medicine review’ for Snort. AKA – does he still need baby bath oil and crazy super strength cream? Yes. Should be a quick call, but the key is answering the phone the second it rings so it does not wake the babies.

I’ve given up on finding it, though. It’s probably off the hook and inside their play oven. Or jammed under a couch. Or in the washing machine. Really, are you seeing where I’m going with this? There is no point in actually looking for it, because I’ve done that and there are still 600 places it could be.

Wow. This is what I blog about when my kids actually tandem nap.

I’ve actually been thinking about a post I want to do but haven’t had time for, but it’s the sort of thing I have to be in the flow for. And I’m not in the flow right now. Stupid phone hunting has thrown me off kilter.

I will say we had the blood tests for Snort come back. Allergies to peanut and egg, still exclude them from diet, needs epipen still, etc. Mild allergy to cat, no real allergy to kiwi or a handful of other nuts they tested for. The real surprises here were he has essentially no real allergy to milk (hurrah!), but a massive hardcore superfreak allergy to dust mites. In fact, his dust mite allergy registers over an 11 on the Crazy Allergy Scale, while his peanut and egg ones are both about a 2.5.

This is awesome because the guidance around dust mites suggests no curtains (actually it suggests plastic curtains, but come ON, that’s just gross), no carpet, no damp, freezing everything you own, no toys or clutter, only plastic furniture, etc.

I’m sort of picturing living in an igloo that is full of IKEA furniture. Anyone else with me on this one?

@1xmum: yes BUT think of the money you could make from the rights to The Boy In The Bubble II

Me: yes! We could then build a plastic annex onto the flat with the profits.

@1xmum: and throw them pizadillas while you sit on synthetic fur covered charity shop bean bags and rub antique Teddy bears on your faces

The interesting thing is that dust mite allergies can lead to problems with….drumroll please….. asthma/breathing problems (check), hayfever type symptoms (check), eczema (check), and night wakings (triple check). So it’s obviously the holy grail, the key to all our problems. All his eye itching till his eyes swell. All his environmental crap. All his wheezing (all the time, he wheezes, literally), all his endless and neverending night wakings, etc.

The only issue now is that we live in a flat full of big soft couches, carpet, so much clutter that a design tv show would probably refuse to help us, etc.

Oh well. Onwards and upwards.

The other thing I have to say is this: @violetsouffle suggested we teach Coco to stop biting by saying ‘gentle’ and making her pet the area she has bitten post-bite. Of course Coconut uses this in a sick way, but here is a sweet thing:

A couple of days ago, she bit down hard on a banana peel. She then instantly looked at me, petted the peel, and kept repeating, ‘nice, nice.’

Oh, you don’t see the link between dust mite allergies and banana biting? You aren’t looking hard enough.

Drive by blogging.

Hi. I’m here.

Pottymouthmommy, Saralema, The Barrenness, Jess…well, everyone actually….I am so behind on reading blogs it’s sick. Disgusting. Appalling!

At first it was because I was in a mightly long relapse where it hurt to sit up, so I never went online. Now it’s because every time the babies see the netbook, ALL HELL BREAKS LOOSE as they demand Sesame Street clips on YouTube.

Ya’ll should check out Will I Am’s appearance on Sesame Street. It about makes Coconut crap herself with glee. She does the dance moves – drumming her hands, shaking her head back and forth, and raising her hands in the air – along with him and all those crazy ass muppets. Meanwhile, Snort has been busy laughing at burps and farts.

I love you all. I do.

I love me too, and I am so sad I am not getting to blog about things as much anymore. Screw night weaning, I may have to do some netbook weaning. I mean, come on. They are asleep now and I’m not naked and watching Buffy the Vampire Slayer like any respectable 32 year old would be doing.

I’m frantically stalking people on facebook (have you stalked the ‘existere’ fan page? Cause you should.), replying to emails, and trying to tweet with all the people I miss.

Now, though…

Now? It’s naked time. Because it’s almost the end of the world, and I miss Giles so.

(Somebody want to lend me Angel? I tried half of one episode and hated it, but have recently been informed that it will make my Buffy viewing more meaningful. So I want to see it, but I am unwilling to pay for it because one, we have no money and two, I think it is probably still basically a bit shit. But shit I want to see.)

Night night.

Nap schmap. Sigh.

Coco has had no nap today. Snort’s was over an hour ‘late’…and only lasted an hour before the sounds of Sesame Street roused him.

I’m now pinned to the couch. Once I stopped fighting Coconut and gave up, life became more pleasant.

But still. Giving up naps at 17 months? What did I do to deserve this? I’m sure she’ll take a late nap and things will go to hell. Still, double snuggles is nice. Snort and Coconut are better than a warm blanket. It’s like I have two hot water bottles strapped to me.

What age did your child stop napping? All at once, or pushing naps back first, or skipping every few days?

Resolve.

Saw The Best Doctor In The World this morning. She’s pretty hardcore awesome. In a system where most appointments are scheduled to take 4 minutes, she spent the better part of 40 minutes with me.

She’s going to try to refer me to the private specialist, but thinks that in reality she will have to refer me to the local pain clinic. They may offer an MRI, but in reality will be trying different techniques to manage the pain.  If they feel my case is too specialist or they cannot treat me, they will be the ones to get the funding to refer me to and pay for private treatment.

The original surgeon I saw recommended denervation. Yes, it’s like what it sounds like – effectively killing off my nerves in my SI joints. (There are two joints in the back of your pelvis, called sacroiliac joints. There is one in the front, which is the symphasis pubis joint. I get pain in all three joints, and also in my hips, as a result of my condition: pelvic girdle pain.)

Apparently with my super stretchy ligaments – that will never go back to normal, sigh – it’s not just my pelvis bones that are able to wobble about and go crazy. It’s my fucking nerves. They are not being held in position, which means they are being pinched and twisted, which causes part of the pain I have.

I said that I was the sort of person who preferred more gentle, less invasive treatment – that I didn’t want to kill off my nerves or have surgery until everything else had been tried. She agreed.

I’ve been given a prescription for something that was originally developed as an anti-depressant (ah, as so many medicines have been) but now is used to treat chronic pain. It essentially stops my nerves from giving such loud pain impulses to my brain. She said this is better than codeine, as codeine only dampens down the pain. She also said this is a longterm, take it every day medication. I take one pill an evening. If it doesn’t make me too sleepy the following day and is not working, in a few weeks I can double the dose at night.

She also said this is a medication the pain clinic will have wanted me to try, so by getting started now it makes my case more ‘serious’ to the doctors I’ll see, as I’ve jumped through most hoops of conventional pain relief.

My PGP/SPD essentially is something that can never be cured, but the pain can hopefully be managed. I still do plan to do core exercises – maybe not today as I’m still recovering from this recent horrible flare of the last couple of weeks – but soon. I am also starting Bowen therapy next Saturday. I’m currently taking Arnica (homeopathic medicine) and wearing my ‘magic’ necklace.

It’s like making a quilt. I am taking good information from every sort of specialist I’ve seen, and stitching that information together to create something tailored to me. I’m trying to incorporate as much as I can, because I do not want to live like this. I do not want this to be my life.

The doctor pointed out that while I am missing ‘the fun stuff’ with my kids, they will have received more psychological good stuff – stuff that needs to happen to infants for the first two years, stuff that is more important than going out all the time. She reminded me I am giving them a good sense of self, building their self esteem, etc. She said my kids would probably be getting more of this good self-building stuff because of my disability.

That’s nice. It is. I just want to give all that good stuff to my kids, without having to be housebound. Or bedbound, as is the case of the last two weeks or so.

And on that note, I’m going to have a rest now. I’m hoping to be able to go along with TMD, Snort, and Coconut this afternoon to meet my new niece, and need to rest from going out this morning.

Sigh.

Still, I’m feeling more positive because at least I’ve got this new medicine to try. At least I’ve got Bowen therapy to try. At least I’ve got the core exercises to try.

I refuse to believe that I will have to live with chronic pain and be disabled for the rest of my life. I refuse.

Do you hear that universe? I am going to get better. Maybe not right now, maybe not this year. But I will.

Worried now.

Just wrote that positive, uplifting post. Then Coco woke from nap – after about 45 minutes of sleep. So no break for me, because I needed to lie down for two hours during nap.

I’m holding her, rocking her, trying to get her back to sleep ….even as it’s obvious she doesn’t need more. There’s a knock on the door. I stupidly go to answer it while holding her.

Feels like my pelvis has split apart. The symphasis pubis pain has been terrible these last few days – as bad as pregnancy. Well, that was nothing compared to this. It is AS BAD, if not worse, than the end of pregnancy. Hurts to put any weight on right leg – immediate horrific pain in my crotch. And separating my legs at all to walk? BAD IDEA.

I no longer feel chirpy and positive.

In fact, I am downright worried. What in the fucking world would cause my crotch to relapse so severely? The front pain pretty much cleared up when they were born – no severe front pain for well over a year now. And suddenly it’s back?

Fuck. Coco has pooped. Wish me luck changing a diaper. OW.

Choosing to move forward.

While our volunteer was here playing with the babies this morning, I made a few phone calls. I ended up chatting with a Bowen therapist and booking three sessions. Starts not this Saturday, but the one after for three weeks.

I got a good discount for booking three, and am cautiously hopeful. Been reading about Bowen stuff, and it appears three sessions is often all it takes. Hmmm. Guess we’ll see. Doing my best to go in with an open mind and heart.

I knew I needed a therapist I connected with – just plain liked – and on the phone this lady reminded me a bit of Kleinette.  So I followed my gut and will be sure to let you guys know how it goes, especially as I know some of you have pelvic problems, too.

This lady knew what spd was and treats lots of women with pelvis problems, so I’m looking forward to meeting her.

I’m on my own with the babies this afternoon – first time since last Thursday. Yikes. But our volunteer has offered to come again tomorrow morning for an hour. I am always amazed, grateful, and humbled by the way people can pull together to help someone – me, in this case.

I want to move positively forward. Tiny steps (literally!).  I’ve been thinking when I have three consecutive months pain free I’ll consider myself ‘cured.’ I am happy that today, as hard and painful as it is, I am still able to look forward to counting the days in those three months.

Who knows, day one could happen soon.

xx

My multipronged plan of healing.

I’m going to come at this from all sides. Not like a major campaign of war, but like a gentle and persistent approach.

One -

I’ve just ordered a necklace. Nothing special to you or anyone else, a cheap, small pendant on a chain. But it is an ancient Egyptian symbol of healing and protection. Scoff if you’d like, but I see it as a tangible way I can focus on healing – a sort of daily reminder to focus my energies. And hell, if it comes with its own innate superpowers, I’ll take ‘em.

When I knew we were going to do IVF, I ordered a ‘fertility necklace’ that had some fertility related gemstones, silver fertility related charms, and a tiny piece of paper with a positive spell on it. Before I put it on I made TMD (against her cynical judgment!), hold hands with me, I said the little spell and visualized myself with a swelling belly, and then baby, and I put that necklace on. It did not come off until the day I gave birth.

Two -

We’ve not had our post today, so that means that Yogalates DVD may still come or it’ll be here tomorrow. Again, core exercises. I need to strengthen them, because mine are so weak it’s crazy. TMD points out that I often say rash and grandiose things like, ‘I will do exercise every day!’ and then if I don’t, I stop. Sort of an all or nothing kind of girl. That’s got to change.

Even if i do five minutes of these exercises two or three times a week….well, quite frankly, it’s more than I am doing now.

Three -

Someone mentioned the Bowen Technique to me. I’ve been googling and having a good old nose around – turns out that one of the world experts in SPD/PGP (a specialist physiotherapist, she actually writes all the articles on SPD for the major charities who support sufferers) recommends the Bowen Technique. My mom has just offered to pay for me to have this sort of treatment, and it turns out there are three or four practitioners about a half hour away. I’m going to write up a list of questions, ring them, and see if I vibe with any of them. Also if they work on weekends, because otherwise I won’t be able to have it.

Four -

The other non SPD/PGP related thing that may help, that does require a rash and grandiose commitment: writing. I’m going to commit to writing 500 words a day, which is nothing, really. Especially as I like writing. But it does fall by the wayside because I am so tired in the evenings – and like now, it hurts to physically sit up. So I’m going to get over this current Bad Time and then get back into it. I figure it’s a nice outside interest that is actually very inside me – and a nice reminder that I am capable of great, awesome things. (We hope.)

I feel like there was a ‘five’, but these first three things are really what are sticking out to me: belief, hard work, and help from others.

(Oh yes, there is a five. More on that later. And a six – weight loss, weight loss, weight loss. But for right now, and say it with me: belief, hard work, and help from others.)

Posting from bed.

Things not much better today. Aussie came up from the city, son in tow, to look after Snort and Coconut…and me, too. She cooked us lunch, she handed me paper towel during a horrific nappy change, she held Snort while I gave him antihistamine as his eyelids turned into superhives so he looked like water balloons were taped to his face.

Worried about tomorrow. TMD only has 2 more paid days of leave left, plus she’s still trying to look good at work due to impending cuts. Just not sure I can physically care for the babies. Poor kids. Playgroup is definitely out, and our planned trip to the hospital on Wednesday (hey, an outing is an outing) for Snort’s allergy testing now has to be cancelled because he took meds today.

I am only so much fun while lying still on the couch, I tell you.

PS – Thank you for all the lovely comments yesterday. I meant to reply to each one but find sitting up is still tricky. But I read and appreciated them all.

Massive SPD/PGP update.

Haven’t written a longer entry in awhile because things have been tough. I don’t know if any of you kids remember me writing about a month or so ago about how I’d had a bad relapse that hadn’t cleared when I got my period? I’m still in it. And it seems to have escalated ten thousand fold with the approach of another period.

I’ve been finding daily life more painful and restricting, and have been dealing with the ramifications of that.

One being that I spoke to the manager of this volunteer we have. She donates 2 hours of her time every week to our family, to help me take Snort and Coconut out to a local group. The manager is an awesome woman; I really like her. She came over one day to push the babies’ pushchair to the park – through snow and ice – so we could take them swinging.

Anyway, I shared with her that waaay back when, the spinal surgeon said I needed to consult with a pelvic specialist, and that referral had never happened. She suggested I get Crazy Lady (every family in Country B has a specialist nurse assigned to them for kids aged 0-5, ours is named Crazy Lady) involved. I agreed because Crazy Lady has sped up referrals in the past.

Well, weeks went by with no phone call from Crazy Lady. Then this week there was a knock on the door and she just fucking appeared. No forewarning, no professional bothering to call and make an appointment for her, oh no. She busts in during naptime with no regard for my sleeping kids.

She comes into the flat and starts demanding to know if I am depressed. ‘Are you depressed? You’ve been doing so well and I hear things are going down.’

I say, ‘Well, yes, physically things are getting pretty awful. I just needed support getting this referral, maybe speeding things up.’

She totally brushes me off. ‘Go to the doctor for that. Now, ARE YOU DEPRESSED? Be honest!’

I’m totally bemused by this and say no, I’m not depressed. Then she says she’s coming back next week for ‘a proper chat.’ No thanks. I will write a whole entry about why I’d rather pull out my toenails than talk to this woman. But that’s an aside.

So her visit upset me epically. I didn’t like someone just turning up, making assumptions, and ignoring the areas I truly do need support in. So I left a message the next day cancelling her visit this week. I also phoned up my favourite receptionist (holla! Tracy’s in da house!) and made an appointment to see my favourite doctor on a Saturday morning in a few weeks, so TMD can have the babies while I’m in the appointment.

I guess I’ll be asking for this referral. It’s to a private specialist, but I don’t think public healthcare has an equivalent, so it should still be completely free.

Yesterday TMD had to stay home from work because I couldn’t walk. At all. Even with crutches. And codeine. I was a non-stop sobfest because the pain was so intense I just couldn’t handle it.

Today is a bit better, but probably only because I’ve spent the whole day passed out in a drug induced stupor.

So, my plans. I know I never updated anyone on the whole Christmas weight loss thing, but I’d lost 33 pounds in total by Christmas. Not all in the three months, though, of course. Because I’m sane and realise 1-2 pounds per week is the ideal, though of course I’ve been losing much slower than that. I plan to continue losing weight.

I also am borrowing a Yogalates video from a friend who is hopefully posting it today (holla! Mamacrow in da house!). I know my core muscles are key to ever recovering. I need to not get all crazy and stay realistic. For me that means not going from zero to sixty. Once I have recovered from this truly terrible dip in my physical abilities – maybe this week? – and can do a bit of movement, I plan to do small amounts of regular work on my core. Another friend is posting me paper copies of all the Pilates exercises her physio gave her for SPD/PGP.

What would I do without kind people, hey?? Knowing I have people supporting me offers me a bit of cotton wool to wrap myself in as I try to continue to recover.

I also wish there was a way to go swimming regularly. Those of you who only know me as a stay at home mum may not know I was once Super Lifeguard, The Best Swimmer On The Fucking Planet! Swimming and pilates have consistently been the two exercises recommended to me by specialists. The key to swimming is getting my fucking driving license, which again will be the subject of another entry.

Core muscles are the name of the game. Mine were destroyed by twin pregnancy – my bump went out to my knees when sitting. They were then obviously cut through when I had a c section. Core muscles are what supports the spine and pelvis. I need to strengthen them before I have a hope of regaining a normal (normal for me, not for anyone else!) life.

My mom pointed out that I’ve been sitting around, mostly, and just waiting for things to suddenly heal and be better. She’s right. I have been. I have also been scared of trying and having things not work. Classic fear of failure.

I guess at this point, 17 months postpartum, I’ve got to be realistic and understand that recovery will require more active work from me. That will require me to keep strong emotionally and mentally, as well. So I may blog more about this stuff just to keep myself on an even keel.

Everything is hopelessly tangled. I think losing (more) weight is emotionally fraught for me because I’m just about at the point where I could eggshare again. And getting thinner without having another pregnancy? Would really upset me. I need to move past this. Whether we expand our family by me getting pregnant or not, nothing is possible until I am able to move again. And Snort and Coconut deserve that, TMD deserves that, I deserve that.

This weekend is going to be all about rest and healing, so that I can physically cope with next week. I’m using the ‘opportunity’ afforded me by being unable to walk to read more about spirituality, to think, to relax and refresh.

I’m also thinking a lot about what I want life to look like, and trying to figure out why I always, always, always avoid doing the big things I need to do, why things scare me. Finding my courage is sometimes easy, sometimes hard. But follow through? I lack follow through.

Any comments welcome on any aspect of this post, though be aware I’m virtually confined to bed so don’t necessarily want anything that’s going to be upsetting. So by ‘any’ comments, just this once, I mean ‘nice and uplifting comments, suggestions, commiserations.’ Hehe.

Thanks, for reading. For being.