Freedom!

At last I've been released from Papworth! The port went in successfully and after a week in hospital to do some amminophiline and extra fluids to try and clear my chest out as much as possible, they agreed I could finish the second week at home. I am totally knackered as I am on fosfomycin and tazocin, and unfortunately fosfomycin is four times a day or every six hours, and tazocin is three or every eight hours... Now even stretching the numbers a bit so i can do both drugs on some doses, I end up doing a minimum four doses a day which takes up loads of time! It also means I get a maximum amount of six hours sleep in one go. I usually get a minimum of nine, so I do feel rather like I've been sat on by an elephant! However on the olus side I am feeling so much better compared to the usual drugs i take. So hooray for the port as I could not take the fosfomycin in a long line as it buggers my small veins up. I am still fairly bruised and sore, but hopefully this will all have been worth it and I will actually feel better for a decent length of time. Fingers crossed!

Port Update

Well yesterday can only be described as a disaster. For some reason the consultant could not get the stupid guide wire into my jugular vein far enough to use as a guide for the port line. Even after several attempts the wire would only go in about 10cm before it would not go any further. This is no where near far enough which means I've been left with a neck that looks like I've been savaged and still no access.... I am seriously sore and seriously pissed off. I was not looking forward to this procedure at all and now it's all gone wrong and I am left in discomfort but with nothing to show for it.   Being poked and prodded like that is seriously uncomfortable even with local anaesthetic and knowing that I'll probably have to try again next week is just not appealing, in fact I am more than a little scared that I'll have to try again. The surgeon had never had this happen to him before and neither had my CF consultant or the specialist nurse, so clearly I am just weird and my body is trying to piss me off again.

I had a contrast CT after the disastrous attempt at insertion, and on Monday will hopefully find out the reason why the guide wire would not thread and whether they can try a different vessel or do something different that will work.  In the mean time, I am still hanging on waiting to get access so I can have some decent drugs and actually feel better, cos I am still feeling pretty rubbish lungwise and need some IVs. My Cf consultant did suggest trying to get a line in me, but quite frankly anyone who wanted to try anything with a needle anywhere near me yesterday was going to get beaten up! Not at all impressed by the whole thing really and don't know if I can bear to try again...

Decisions

I've finally been forced to decide whether or not I need a port (permanent iv access) and in the end the decision was rather obvious. I've not been having a good time with my lungs since about September. I've needed IV drugs about every six to eight weeks, and getting access to my veins has not been easy. Last line took three attempts to get it in...not my idea of fun! So having finally agreed with the docs that actually I do need one I've bitten the bullet and said yes. Hopefully this Friday will be port day, assuming they can find me a bed. The proceedure will be followed by a couple of weeks of antibiotics, and also a new anti gunk drug (whose name is unpronounceable) that is designed to open up my airways and get all the muck out- let's hope it works! This drug is only used as an inpatient treatment as you have to have it as an infusion which runs continuously 24 hours a day. So sadly I will have to be incarcerated in Papworth for a few days at least.... How boring! However, the advantages of getting a port will hopefully out weigh the boredom and the discomfort of the operation- no more being a human pin cushion, no more not being able to use one arm for the length of an iv course and being able to use more drugs that my little veins could not handle. Hopefully this will all result in an improvement to my lungs and a much less grumpy Ros during IV time!

Edit
Port op postponed until friday the eleventh...sigh.

Facebook

I've finally got around to getting myself some publicity and have got a Facebook page for my wedding dress and hat designs. If you'd like to take a look it's here.  Now all I need to do is get a Twitter account (and not get addicted to it!) and world domination here I come!

Experiments in Petticoats

No, I've not turned into some deranged mad scientist, conducting bonkers experiments to bring women's undergarments to ungodly life! (Although that might be something to try later...) I've actually been trying out various ways of making petticoats and various materials to create different skirt shapes. I'm currently working on a 1950's style dress and wanted to see the various ways in which its circle skirt could be supported. This first picture is one of my basic circle skirts without any support. However you can make it much more obviously voluminous  and change its silhouette by adding various types of petticoats.

The first petticoat I tried is a fairly classic ballet style net petticoat. A long strip of net is gathered along the top edge onto a waistband and wrapped around the waist, in this case creating two layers. This is the kind of long multi-layered tulle skirt that is often seen in ballet productions. I used fairly stiff dress net and gathered it very heavily around the waist with my ruffler foot, which produces a bell or dome like shape that then falls fairly straight to the hem. 

 

The second type I tried was a very pretty three tiered design made in shot red and black organza.  This is a very 1950's style, with the bottom tier being about twice the length gathered onto the middle tier, and the middle tier being twice as big as the top tier, and the top layer being twice the waist measurement. I used a ruffler foot on this petticoat as well, as it is a lot less work than hand gathering. This technique produces a very light but full petticoat that produces a more triangular shape, with less fullness at the waist and increasing out to the hem.

 

The last petticoat is a bit of a can-can extravaganza! Made from light-weight taffeta and gathered by hand this, like the organza petticoat, works with each tier being twice the length of the tier above. I edged it with some black lace that I have had lying around for years to get that totally crackers can-can effect! Whilst using a lot of fabric this petticoat is not very full, producing a more gentle triangular shape. The material is probably a bit light for a petticoat and even gathered up does not "stick out" in the same way as the organza or net. It is however ,a lot more comfortable to wear against the skin as both the organza and net can be a bit scratchy and in a slightly heavier taffeta would produce more volume.

My last bit of experimentation was with ways of finishing the edge of the fabric.  net doesn't need an edge finish as it does not fray but both taffeta and organza fray like mad so have to have the edge treated. Hand hemming takes forever and machine hemming or overlocking takes a vast amount of thread. So I finally got out my soldering and tried a technique I've been wanting to try for ages but have just not got around to-using a soldering iron to seal the edge of man made fibres with heat. I have to say it works brilliantly! Not only is the edge sealed from fraying but you can cut the strips of fabric for the petticoat tiers out with the soldering iron thus saving time and money on thread-bonus! One downside is that heating up the fibres tends to give off some rather foul smoke, so you have to wear a respirator... Not only does make you look a total prat, but it also makes you sound like Darth Vadar on helium!

It does however produce a nice smooth finished edge that does not fray. You can just about see this on the picture, but unfortunately I do not have enough hands to take a photo hold the solder iron, ruler and fabric all at once, so you'll just have to take my word for the fact that it does work! Who knows maybe I'll give up my sewing machines altogether and just solder everything together now....

Hey Diddle Diddle!

One of my Mum's close friends has recently become a Nanna, and as a gift for her new grandaughter she wanted a cot blanket with the nursey rhyme Hey Diddle Diddle embroidered on it. I'd made one for a friend of mines first baby boy, so out with the Xquisit, and here is the result-

The Complete Blanket

The Cat and the Fiddle

The Cow jumped over the Moon

The Little Dog Laughed

And the Dish ran away with the Spoon!

New year, new look, same old health.

As you may have noticed my blog has changed a lot recently. This is due to the redesign of my website by Mr EB and making my blog match the new design. I am so pleased with the new site, it's much sleeker and more elegant. Evan better it now has my hats on it, although I am still in the process of photographing some of them and doing their write up. If you would like to have a look at the new website it is here. There are still a few sections to add blurb too and I want to take some more photos of some of the hats, but it is such an improvement.

Sadly, the new year also started with a brief but very annoying stay at Papworth. I've had a nasty cold that descended and stuck on my lungs for a few weeks, but I had managed to get through Christmas and the new year with oral ciprofloxicillin to damp down my ongoing infections. Sadly, when I finished this course it was pretty obvious that I had not recovered particularly as I was so productive it felt like my lungs were full of glue. So I finally admitted that I needed the big strong iv drugs. Typically for me I managed to time this perfectly with the bank holiday so there were no regular clinics and they had to admit me to start me off on the ivs. Even more annoyingly the cf unit was full so I was on a general chest ward. I did have my own room thank god, but being outside the cf unit is so annoying. Te staff really don't seem to realise that vie been dealing with ivs for probably longer than they have and i don't need to be taught how to administer them, or assessed yet again! I actually realise whilst chatting to one of the non cf chest docs that I've been doing ivs on and off since I was 16, so rather depressingly that is practically half my life and certainly longer than the very nice but very young nurse who was looking after me. I could probably administer the ceftaz and colomycin in my sleep I've had them so many times. Also when they finally discharge you they give you loads of bits of paper saying what they've done to you over the admission for you and for your GP, I never get those at the unit they just send them automatically to the GP and they assume I can remember what happened!

It is also so annoying that as soon as you are admitted into hospital the nurses immediately take all your regular medication off you and shove it in a locked cupboard that you can't open. Clearly as soon as you are admitted you become far too dumb to carry on taking the meds that you've been on for years and have to be given them by a trained professional... they do this in the cf unit as well, but at least they have the decency to apologise for being forced to treat you like an idiot! Next time I get admitted please let me be on the CF unit!!!

Variations on a Theme

Well only one variation so far technically! A friend of my Mum was kind enough to admire my hats recently and asked if I could make one of them in a different colour scheme to match her outfit as mother of the groom for her son's forthcoming wedding.  So, always happy to have an actual proper excuse to make a hat, off I went.  As her favourite was my black and pink button hat, we decided on a colour scheme to match her outfit and here is the result,

Here is the new hat with the original version.



So if there any hats in previous posts that you would like in an alternative colour scheme then just let me know!

Hatting in Felt

At last Ive had a bit of time to actually start using all the fab blocks that my lovely friends got me for my 30th from Guy Morse Brown. I've also bitten the bullet and branched away from my tried and tested buckram and silk or sinamay construction and used felt! I decided to start with one of the simplest of my new blocks, a rather fetching slanted mini fez style and use a plain black wool cone-

So having read everything about blocking felt in all my hat books and costume books and searching the internet for hours I fired up my super powered iron and started steaming. I was definitely too timid to start with and was not using nearly enough steam as when I put the felt cone over the block and tried to pull it into shape nothing happened... Wool is a bit water resistant when ironing wool coats etc you have to spray it with water then whack it with a ruler or something to get the water to penetrate before you can iron any creases out. So with this in mind and having upped the steam generator to full power and really filled the inside with steam and then covered the felt with a wet cloth and used the iron to press the felt I started getting the shape of the block into the felt.  It is quite remarkable the way the fibres shift in the felt to allow you to mould the fabric into a 3D shape. After much pulling and swearing when I accidentally steamed my fingers the little felt blockbegan to take shape

Just a few pins...



More pins and an
almost recognisable shape.



The felt removed from the block and the edge folded under, wired and sewn.

As the block is quite a 1940's shape I decided to decorate it with a felt flower, a popular decoration of the time. Hats were not rationed during WWII and they were often the only garment a woman could easily acquire as no coupons were needed or had to be saved. However, as the war continued materials became more scarce and new hats became harder to come by, so scraps of felt were an ideal way to revive an old hat.  Miniature versions of mens hat styles were very fashionable and were worn perched on the head, tilted at a rakish angle.

Blue and White

Well things have rather got in the way of sewing and hatting.  There is some evidence that I have picked up a new micro bacteria, so in an attempt to see I've been sending off samples left, right and centre (two of which got tested for the wrong things then chucked-grr) having a CT and a bronchoscopy.  I also had another two weeks of IVs to tide me over as I got yet another cold. All this has resulted in my spending far too much time at Papworth which I could have spent doing far more fun stuff!  We've also acquired two new cats, Patch and his mum Socks (I'll post about them when I manage to get pictures of them that are not a blur!) so I've not had time to take pictures of the latest hat.  So better late than never, here they finally are-

This is a very girly pillbox hat made from pale blue sinamay, that fastens at the back of the neck with a ribbon bow. It's decorated with a lace rosette with a large swarovski stone in the middle and finished with white hackle feathers and more swarovski crystals on wires-you can never have too many shiny things!

Nightmare at George Street!!!

So when you move into a new house you do expect there to be some things that you don't like and that you will have to change. However, at George street we have something a bit more special than that.... A wall mural that actually scares me witless is possibly a little unusual! I give you the wall of Mr EB's study-

I mean argh, help, yikes!!!!! What the heck is that? One of my birthday party guests suggested it was probably someones  A-level art project and was probably titlled "genocide" or something equally creepy. It's basically a repeat of someones face done in loads of different styles. If you look closer at it, it really doesn't get any better...

There is even one in there that has no eyes.... shudder. So we shall soon be removing this, er thing,  from the wall and painting it a nice plain colour.  We certainly can't just paper over it, because we'll know that it's still there looking at us.....

A new friend at George Street

Whilst pottering around our new garden at George Street I had a close encounter with my new friend, our local Robin who spends a lot of his time in our apple tree. In fact any other Robins who pass by get seen off in no uncertain terms, so our garden is clealy his patch. Mr Eb and I spent about an hour or so weeding around the bottom of this accompanied the whole time by a very brave and curious Robin who sat above us keeping up a constant stream of whistles and whirrs. I hope that he does not mind us being here and is just curious and looking for some food as he seemed very excited and nearly ended up sitting on my leg at one point! I only took a few snaps as he took definite exception to the chirrup my camera makes when it focuses and dive bombed me to try and scare off an obvious competitor!  I've started putting food out and hopefully we'll soon have more birds and keep on seeing this little chap.

September so far...

..has been sooooooooooo busy!  First off it was my 30th birthday! Bit of a weird sensation as as I get older I am more conscious of the whole life expectancy issues of having CF, but never mind nothing I can really do about it so I shall just try and ignore it! My birthday was great, Mr EB, my parents and I pottered off to Wimpole Home Farm to have a quiet walk about and a really great lunch at the fab restaurant there.  We then spent the rest of the day flopping about as we were all knackered from the other big event of September, namely Mr EB and I moving into our lovely new house!  I love our new house, and will post photos just as soon as I can remember which box my camera got packed in... I actually had my 30th birthday party the day after we moved in, which was the day after my actual birthday.  It was not meant to be as hectic as this but the move date got shoved back and back again several times so that our original early August date became mid September.  Ah well, after much scrubbing and cleaning (the last owners seem to have stopped cleaning once the offer was accepted...) we got the basics sorted out.  We'll still  be living from boxes for a while but it is fantastic to have so much space! Can't wait to get everything totally unpacked and sort out all the annoying little DIY jobs that need doing...

Richard and Josie's Wedding

Last Saturday my brother Richard married his lovely girlfriend Josie at Birmingham Registry Office. It was a very small ceremony of just immediate family and was such a lovely day. Sophie was fantastic throughout and gurgled along with the vows! They very kindly asked me to be a witness and I managed not to make any blots or mistakes on the certificate-thank god...  After the ceremony we walked the short way (via all the fountains) to Bank restaurant for a fantastic lunch.  Even more food followed later at the Regency Club at the Hyatt Hotel and the wedding cake really was amazingly delicious and gold! It was made by Josie's step mum, Elizabeth and I am definitely taking a leaf (no pun intended) out of her book with the edible gold leaf topping.  It was also a double celebration as Saturday was my Mum and Dad's Ruby wedding anniversary. I'm sure Josie and Rich will manage as many happy years together, and I'm hoping to manage a few with Mr EB!

One of the funniest parts of the day was Sophie chewing Mum's gold locket- I don't think she was trying to test the gold's authenticity, but even with only one tooth she has still left a rather good tooth mark on the back... I think I will try and get the locket engraved with the date and Sophie's name for posterity!  (As usual all these photos were taken by Mr EB as he is just better at it than I am!)

Crashing and burning....

Well I can't say I am surprised, but I am back on the IV's.... Going by my annual review results and my CRP levels (the level on infection markers present in your blood) for the last few months it is pretty clear that I have been harbouring some nasty lurking infection for quite a long time and never quite completely squashed it with past antibiotics.  Last Wednesday was my annual review results and whilst some things were good-liver and bones are in particularly good shape, my lungs are definitely on the decline and Dr Barker suggested we recheck my CRP levels and then consider IV's this week so that I would not miss Rich and Josie's wedding.  My levels were indeed up to 33, which is not that high (below 15 is ok) but it has been at that level for ages and it is not a good idea to let it linger.  Sadly, my lung function today was down to the lowest it's been ever, which is not that surprising as I am feeling really rather rubbish at the mo.  Today my tests showed that I have less than 50% of what I should have (both the FVC and FEV1 tests). That's  sort of like saying I've only got one working lung!  This is really not good!!!

The Doc's seem to think that I should recover back to my usual 65%, but I am not happy at all about this drop-to put it mildly...  So now I have the dubious pleasure of trying to do two IV drugs, Tazocin which I've had before and Imipenum which is a new one for me, but has to be taken four times a day!!! This means every six hours...when am I going to sleep! Combined with the fact that tazocin is three times a day, so every eight hours...well you try making those two fit together without ending up permanently being attached to a drip stand! I'm going to have to cheat a bit and try and stretch the numbers to make it bearable and so that I get more than four hours sleep in one go-wish me luck!

Another button hat!

Well it has been such a busy weekend, I am shattered... My brother Rich married his lovely lady Josie and we spent the weekend celebrating their marriage in style, with lots of food, up in Birmingham.  I'll post photos of this later when I have actually managed to organise and edit them. I'm so pleased for both Rich and Josie and had a fantastic day. Sophie was such a good girl throughout and even gurgled at appropriate moments during the ceremony!

Anyway, the hat for this post was actually finished before the weekend but I did not have time (or the money) to organise an outfit to go with it so I wore my lovely silver rose hat and matching ensemble again. I have not decided yet if I am going to keep this hat or sell it, but I am really pleased with the curly wire and bead decoration. I've not used it since the first hat I made last year, but I think I may use it lots more as it is such a fun decoration that moves and sparkles most pleasingly! I also really like the colour combination or pink and black, a bit different from my favorite black and white.

Hat Block Buying

My latest addiction is adding to my collection of hat blocks.  I originally only had two that I bought from Guy Morse-Brown, a fabulous block maker where I would happily spend every penny I have. Their website is http://www.hatblocks.co.uk/ if you want to take a look. However, I now have four hat blocks... I have discovered that I can combine my love of Ebay and feed my addiction to hat making... Not good for my wallet-especially as I am in the process of buying a house with Mr EB so am already feeling very poor!  At least on Ebay I can stick to my do not spend more that £40 a time rule. I've always had this rule with Ebay, as I don't want to spend loads of money on something then find out that it's a fake or have it not turn up etc etc. I've only ever been totally shafted on Ebay once when trying to buy a pair of spotty tights that never arrived-I never got my money back but hey, at least it was only £5.  So I never spend more than £40 on Ebay because that is the most I am prepared to loose on one item. 

So far I've got two off Ebay and I've just been trying out the first one to arrive.  It is a fairly basic but very useful shape; I've seen them called button blocks for the obvious reason that it looks a bit like a big button-

So it was out with the black sinamay and feathers I've had hanging around for ages and off we go! Blocking sinamay is so much pleasanter than buckram, because the sizing is no way near as sticky and the fabric is no where near as tough and is much kinder on your hands.  The finished shape did take a bit of levering off the block but once off it's a lovely rounded shape and I am rather pleased with the finished decorated article-

Close up of the decoration