Thursday, March 25, 2010

How to inspire confidence...

...or not - seriously, if you're a doctor, don't tell your patient they know more about their condition than you do because you learnt about it in medical school and have since forgotten!

Unless of course I happen also to be a doctor, which I'm not, I know where the neck of the femur is and the acetabular labrum, I also know where the trochantric bursa is (but I probably can't spell it). I know I have a rare condition, but I work best with a doctor who knows that, admits that and tries to at least refresh their memory.

When Grace was born, I had a phone consult with the anaethetist beforehand, he apologised for being slow in returning my call because he had taken the time to do his research and talk to other anaethetists who had worked with someone with EDS.

Rare, but not life threatening makes for a condition that very little is known about, particularly when the disabilities it causes are that something is painful to do rather than impossible. It could be life threatening in certain circumstances, mostly if unrelated bad stuff happens, my risk on the operating table, or in recovery are greater than other people my age, my risk of falls is higher and thus complications from them.

One particular problem that I have is poor control of blood pressure and all that the medical community seems to know is there is a statistical link between EDS and orthostatic hypotension - something most people seem to get sometimes, feeling dizzy if you stand up to quickly, but I'm becoming suspicious that there may be more that hasn't been noticed, particularly as I suspect that ultimately what is currently hypermobility type EDS may well be split into subgroups, for example, I have worse skin than many in this group, but joint instability in the most commonly tested joints and directions of movements is not as bad, but some movements, particularly rotations seem worse - and it's these ones that seem to lead to bone and cartilidge deterioration.

I'm available for medical research should anyone want me! My obstetric history in particular seems to be almost unique, that I also have narcolepsy makes me particularly unique, working with 1 in 2000 for narcolepsy and 1 in 5000 for EDS, that makes me 1 in 10 million, making the expected overlap for two independent conditions be about 30 people in the USA, 6 in the UK, i.e. still a very small number even if underdiagnosis of both conditions make them more common than the current numbers suggest.

Tuesday, March 23, 2010


I definitely have more energy these days, tired, but more energetic. The longer days and the clock change work very well for me! I've been enjoying getting out in the garden after dinner.

Unforunately, last night, in an attempt to pull up some roots, I managed to snap the pipe to one of the sprinklers, it looks like we should just be able to get a new section of pipe, a small job, not a big job we hope!

I stood and stared at the front garden for a while, it is overplanted like crazy, all we've done since we moved here has been to remove things and more things and discover new things under the tall things etc. we got to being past caring what things got removed and if it's a thing that spreads, then we said good bye! Unfortunately these things have grown rather a lot of roots, I put in a handful of winter pansies in October or November to fill in some of the spaces and the poor plants didn't really have a chance.

I'm still not convinced if the remaining things deserve the title of plants, there are some nice ones, but in odd places, but I think we have to remove them rather than try and make things work around them because the "soil" is like trying to grow things in an extremely large pot that is severely root bound.

On a more positive note, I've transplanted some leeks, which was fun, if a little awkward with four people surrounding a pot only a foot wide and balancing Grace in my other arm.

There is still a lot of work to do, unfortunately more of the back breaking kind than the fun stuff. However I've discovered that Banana Girl is a good helper when it comes to washing the sides of older pots. Grace is a bit of a problem though, she gets cross if I close the door with her on the other side, even though she can see through it, I tried putting a line of toys to distract her, which worked, for about 5 minutes, until she crawled top speed across the deck and covered herself with soil! I'm wondering about trying a play pen in the middle of the deck, but it's evil to put up and take down and with the heavy work, I prefer to do it in short bursts!

Sunday, March 21, 2010

Quilt Show

I finally made it to the Quilter's Anonymous show today, though the drive there freaked me out somewhat, the last few miles are a single lane in each direction road with no separation between the carriageways. The speed limit is mostly 55mph, which people don't really stick to and there are quite a lot of trucks and I ended up with a truck following me who clearly thought I was driving too slowly. Looking back, I probably should have just pulled off, but I found it pretty stressful, not leaving enough distance is a common driving mistake, but knowing that the most likely cause of a collision would be a head on and having a huge truck right on my tail didn't make it a pleasant drive.

This kind of show, where basically, members can show whatever they want, is quite revealing of current trends, there was one pattern, which annoyingly, I can't even visualise, which I saw three times and I'm not just talking the same general pattern, but identical dimensions, borders, fabric tones etc. the only difference being the exact choice of fabric. I wasn't on the look out for anything in particular, sometimes I'm looking for ideas on how to use a particular fabric, or quilt a particular design, but this time, I was just looking, but it's interesting to reflect on what attracted me, for some reason I was particularly drawn to hand quilting, which is a bit of a surprise. I've been musing for a while on a small whole cloth quilt and I'm now wondering if I should instead try a small hand quilted whole cloth.

Unless a quilt is designed to hang on a wall, then hanging them up isn't really the best way to display them, just as putting paintings on beds doesn't show them off! When I sat down to have a coffee and feed Grace, I could see quite a few quilts from different angles and I realised how much I'd missed on the first viewing, when I'd looked quite closely, so I wandered around again trying to look from different view points!

There was a good selection of minatures this year, I've done one minature and I was pleased with it, actually, it's the only thing I have hand quilted! The nice thing about minatures is that even though making the blocks takes no less time than making them larger, putting it together, quilting and binding it is way faster, you get a finished quilt very quickly!

After debating over joining the group for 3 years, I finally did, joining at the show costs 20 dollars and lasts until mid September, if I never go to a meeting, or do anything with it, then it's not the end of the world, but I do intend to try and get involved with a satellite group, hopefully I'll find one which has some under fifties in it! No offense to my many wonderful friends who are that age, but it would be nice to meet some younger quilters too!

Friday, March 19, 2010

Reading levels

Today was report card day, I'm not entirely convinced of the benefit of assessing kids quite so frequently, but it's interesting to see if the child we know and love is demonstrating the same things at school as he is at home. In particular, it's obvious to us that since the last report that he's made huge strides in reading, would the testing agree? Thankfully it did, which then raised the question what on earth do these random letters and numbers mean, I managed to for a chart that compares several different systems and they seem to be using two of them, one numerical and one alphabetical, I think they must have been labelling books according to "Reading Recovery Levels" which is a number, the first book I saw labelled with a number not a letter was K, so that fits, apparently he's now level M.

We've noticed that he's singing more and my assumption was that this was because he could now read the words on the overhead projector at church, I don't even know what they do in music at school, but I doubt it's singing words from a screen, apparently he's above grade level in that class. I've been wondering for a while if we should try and get him started on an instrument, one of our neighbours is an organist, I've been thinking of asking her if she teaches and if she'd consider trying it out with him.

The problem with counting rubbish

I've not been idle on the decluttering/organising project, but I've realised that unless I'm working on an area with a significant number of things destined for the bin, then counting them takes more time than it's worth! I've made some good progress on the bookshelf I use for sewing and quilting storage, but I've not thrown much out, at one point I began collecting things to be binned in a pile on the floor, but that turned out to be troublesome and potentially self defeating, I'm making a lot of temporary piles on the floor, which need to be moved at frequent intervals before they get attacked by a child (aka Grace).

I made a decision to box up my serger (overlocker in English), I got it free, I've used it, I intend to use it again in future, but it isn't something I'm likely to use fo just a few minutes here and there, so away seems like a good place! Unfortunately the box I found was about an inch too shallow, I think I'll just have to put it somewhere such that nothing could go on top of it.

My idea in that corner of the room is to have things organised such that I can sit down and sew for a few minutes here and there, mess and junk was accumulating such that that wasn't possible, but a major transformation is occuring, I really am getting there in this area.

Clutter is a big deal for me, I'm not a neat person, I usually rely on my good memory rather than rigid organisation. But the mess and clutter bother me, I'm not a hoarder in the sense that I don't throw anything away that I might potentially need, but I do err on the side of keeping things, or not processing them straight away. Paper is the biggest problem, it comes home in school bags, in the mail, and seems to multiply and every empty surface seems to attract it. We have a desk that we created to fit our house in the UK, amazingly it fitted perfectly here too, but it's now downstairs, it's a paper magnet, I don't think I've used "my" side of it since we moved here. I get frustrated that every time I put some effort into purging some of the paper and make a little space, it rapidly fills up again. Sometimes I wonder if I should find a very large box and just plonk everything into it and if we don't use it, then we don't need it!

Thursday, March 18, 2010

I still don't like this title thing!

I'm full up of cold, my brain is working really slowly! Somehow, I managed to sort out some of the plants from yesterday, with some assistance from Banana Girl, we chose a pot for the ginger scented geranium, apparently it doesn't mind getting dry, or does it need deep roots, but it's ended up in a bigger pot than necessary as the one that looked perfect had a very happy lavender plant in it that I thought it best not to disturb.

I stared at a small pot of leeks for a while before eventually deciding they could survive a while longer in the pot they came in. Some swiss chard found a home in the middle of a large pot, I chose this plant because it comes up with multicoloured stems which apparently look fantastic in sunlight. I plan to put something around the edge of the container, but I haven't figured out what!

Whilst brewing a cup of tea I got brave and took the aerator to the old compost pile, it's quite liquidy down below, but the bubbles indicate it's doing something, I may need to mix some dry material into it, but we don't have a shortage of dry material, so that's ok.

The expensive garden centre

We have cleaners come every other week on a Wednesday morning, it's easier all round if I make myself scarce. So I took a trip to the garden centre.

Unfortunately, if you put lots of plants together, there is a good chance I'm going to be allergic to one of them and even though I avoided the ones I know about, wandering around the undercover section got quite uncomfortable.

I know large pots are expensive, but looking at those prices is not something I want to do again in a hurry. I did discover a type I've not noticed before, they look fairly authentic and are some kind of rubbery material in a double layer, so they would probably be good insulators, they are also lighter weight than the ceramic equivalent. As it happened, none of the shapes they had particularly appealed, so it wasn't difficult to say no!

I did find a tall metal pot in the reduced section, looking like it would look in a year or so if we'd bought it full price, so at 70% off, I've given it a new home. I'm thinking of putting leeks in it, unless I think of something else that needs a particularly deep root before I actually put the leeks in it (I'd already chosen one small transplant).

I was happy to find a few plants that it's hard to start from seed, but aren't ones I could pick up for less in Fred Meyer or The Home Depot, I might not have been 100% accurate, but I don't want to have to make another trip up there in a hurry.

My big find was a compost aerator, we have two compost bins, I have a vague idea to use the older one of the two for potatoes, but I'm not quite sure what it's like at the bottom. I also saw pop up potato bags, which I plan to investigate more online. I love small new potatoes, particularly in salad and they are so much better fresh than from the supermarket, but the idea of growing them is also to spend less, not just enjoy them!

Tuesday, March 16, 2010

cough cough here, cough cough there, here a cough there a cough everywhere a cough cough

hmm, that's probably too long a title, but it's definitely what our house sounds like at the moment!

I just discovered Banana Girl's preschool has a teacher training day on Friday, I'm not thrilled, somehow I'd managed to miss out on the info until an email today, I think I even signed her up for lunch, rather than the sign up sheet being available but crossed out, which is usually what they do for random days off.

I'd been thinking of heading to a quilt show, but now I'm unsure what to do, a stubborn 4.5yr old could really wear me out, but I do want to go, it's a guild show, non juried, so it shows everything anyone wants to show, which means that rather than looking at quilts as works of art and craftsmanship that I could never aspire to, I actually pick up ideas that are potentially acheivable, whilst at the same time getting to drool over a few outstanding quilts, I didn't make it in 2008, but the 2008 best in show was on display in 2009 and I could have stared at it for hours, though rather irritatingly they'd hung it behind a table of people selling tickets, but I got bold and asked to look closer, it's the first quilt on thispage, which does it absolutely no justice, it has tiny stuffed berries, details sketched in and beautiful quilting. The five dollar entry fee and the drive up to Monroe was worth it just for that!

Friday, March 12, 2010

Does she like red jeans?

That may not have been the exact phrase, but it's the sentiment of an example of how not to treat a disabled teenager that I remember from sometime in my childhood. It was in a book, whether that was a school book, library book or something else, I do not recall, but or some reason it stuck in my head.

I'm feeling like that girl must have felt, I have thoughts, feelings, opinions etc. if you want to know what they are, then ask me, don't play chinese whispers, I can speak!


I fell over Wednesday morning, I didn't slip or trip, nor did I feel pain before I went down, my left leg just vanished from under me. My ankle felt slightly sore afterwards, but it wasn't until Thursday morning that other pains started to appear. The whole hip area has the same kind of thing that you feel the day after unusual exertion, or the day after a car crash, perhaps a bit worse.

We'd already arranged some back up childcare for this afternoon, which I'm immensely greatful for, but I'm at a loss as to what to do with myself. I've got plenty of ideas as to what to do, but I'm not in the mood, maybe that is painkillers speaking.

I need to think of something to cook with beef that's already cut for stir fry, I got it out of the freezer yesterday, but decided I wasn't going to survive cooking before I'd made a plan other than what meat to use. I can't remember whether I bought it frozen, or put it straight in the freezer, so I really need to use it today.

I also seem to have chicken drumsticks multiplying in the freezer, so I need to find a recipe other than sticky ginger chicken to use them, yummy though that way of cooking them is.

I've done some more garden planning and I definitely want to plant some spinach ASAP, we eat loads of it and apparently they are good plants for growing in the shade. I've also come across some varities that aren't actually true spinach but can be used in the same way that are red or purple vines that can be grown in hanging baskets, which sounds rather fun. Banana Girl wants to grow pumpkins and having cleared a lot of material from our small south facing front garden last year, it seems like something worth trying, so we chose a couple of packets of seeds whilst we were picking up prescriptions yesterday. Since we are having a mild winter, it may be worth starting some of the seeds inside soon and taking a chance of putting them out earlier than normal, there should be enough in the packet that we can do some on the normal schedule too.

Thursday, March 11, 2010

Tidying, or not?

This project to chuck things out has just turned into a mega tidy, needed, but harder. I've opened out my quilting table to I have plenty of space to lay everything out so I can see what needs to be stored together and what doesn't. I decided I'm remove my serger from the corner of the sewing machine table, it's not currently threaded, so there doesn't seem to be much sense in it being there. I think now I've started working on my bedroom, I've got to finish, or at least have it as my primary goal and in other rooms only collect rubbish, not do anything else. At least that's the theory!

Wednesday, March 10, 2010

Container gardens

I'm not exactly green fingered, but I will try my hand with a few seeds and stick a few plants in the ground. One of my regrets when leaving Cambridge was the blueberry bushes I had to leave behind. I'd put a fair bit of research into what to buy and what to plant it in, I'd had to learn about soil types and figure out what ours was. I'd even worked out the likely return to know that it wasn't a waste of money, it was a sad day when I hauled them into the boot of the car to gift them to a friend.

Now, we have a north facing sheltered deck, it's really not all that amenable to much growing, but the previous owner managed it and I've continued to dabble, with mixed sucess, but bad weather last winter, being pregnant, then having a newborn made last season a wash out, I didn't plant any annuals, but it looks like most perennials did actually make it and are now doing very confused after such a mild winter!

Pretty much everything I know about gardening comes from the back of a seed packet, which equates to not very much! So last week, I bought a gardening book, all about growing food in containers, so I'm trying to approach this season with a bit more strategy. I now know our hardiness zone, heat zone and the average dates of the last frost of spring and the first frost of autumn, so now I've just got to figure out what I want to grow and when and where to plant it.

My previous approach has been one type of plant per container, but I'm discovering that mixing it up is more visually pleasing, makes better use of space and certain things help each other along.

I've read the basics and vegetables are the next section, it's time to start making some decisions, it's too late for things that should be planted before the winter, but there are plenty of things that can cope with a possible late frost.

Tuesday, March 9, 2010

This crazy body

I really don't get this, conventional wisdom is that you stiffen up after being still, but the past few days have gone in reverse, my low back (I think it's the SI joints) stiffens up and this afternoon, it wasn't just an "I feel stiff" moment, but a "the broccoli is on the bottom shelf of the fridge how on earth am I going to get it" kind of moment.

Last week I finally picked up the phone to schedule an appointment to consider a cortisone shot in my hip, only to find that the doctor I've seen before has left, but it's been a long gap, so that's not such a big deal. I've never had a cortisone shot, I've got close, but me and needles in joints does not have a good history, the needle has only won once whilst I'm awake and it's a good job no one was monitoring my vital signs if the amount of sweat was anything to go by! I figure I've got to try it once otherwise I'll never know if it can help, at least if I know how it helps I can weigh that up with the risks, because from what I know it seems like the risks are from doing it repeatedly rather than just once.

Monday, March 8, 2010

2010 in 2010

I came across a challenge to declutter 2010 items from your home in 2010, the idea was by any method, bin, recycle, donate, sell etc. I had the realisation that I could easily get rid of 2010 items to trash or easy recycling, so I'm doing it and I'm not just going for doing it in the year, I'm going for doing it as fast as possible!

However, I don't want to make it too easy, I'm not counting every single sheet of paper, every single receipt, I found a back of small reels of thread that I had no idea what they were made of and haven't used in 10+ years, they were tangled with the odd thing that seemed worth keeping, so every handful that I separated off I counted as one.

I'm trying to attack areas where I know there is significant proportions of things that need to go, otherwise I get distracted organising, which is no bad thing. The idea of getting rid of 2010 things seems to freeing, I want to focus on that. The only problem is, I don't want to misjudge something that is precious to a child that I didn't know about, so I think I may have to create a half way house in the garage and keep things there for a couple of weeks. I may have to create a separate box that isn't rubbish, but is the keep for a year type of box, even if it becomes a keep for three years box, I think I can cope with that.

Which reminds me I cleared some clothes away before I was even pregnant, they weren't fashionable then I'd be loony to think they've come back in, so that's a few boxes I should go through. I figure any tidying, sorting, purging is good whatever the next few years bring. We've just created a space for Nathanael where he can shut the door and do men things, it's like an indoor shed, without the power tools. I've told him he can come to me with a list of things he wants and I'll either find them in the house, or depending on what is is to buy it