Port Love!

It may have been a bit traumatic getting my port into me, but my God it is a marvellous thing! I've been having ivs for a week now in an attempt to regain some lung function and get me a good summertime, and it is soooo much easier than faffing with a long line. There was no digging about in my arms trying to find a vein that works and would take a line and I don't have to spend two weeks with one of my elbows basically immobile, as that was the only place that lines would work. It took two minutes to pop in a needle and hook me up!! Brilliant!!! It hurts a little when the needle is inserted but nowhere near as much as having a long line inserted. Also it stops hurting practically immediately- bonus! I am also taking ciprofloxicillin which I could not take through a long line as it makes my smaller veins stop working, so hopefully this will really help with the bugs as they have not been hit by this antibiotic for ages. It is also wonderful being able to bend my arm whilst taking the drugs. I can even play the piano whilst hooked up! Sadly the drugs have not dramatically improved my playing...! All in all I am a total port convert, so if anyone out there is thinking of having one I say- do it!

An Unusual Gold Bride

Now that Helen has got married I can finally blog about her very unusual bridal gown.  I have been working on Helen's dress since before Christmas and it has been such fun to work on something so different from the traditional ivory dresses that I am usually commissioned to make. For a start, its a gorgeous rich gold. We found the fabric during a shopping trip to Borovick Fabrics on Berwick street in Soho. It is also transformable! The basic dress is a 1950's prom style gown with a full circle skirt and a sweetheart neckline.  It is supported by an amazing pouffy petticoat (this was part of the reason for my experiments-in-petticoats earlier in the year).

The petticoat is six layers of net at the bottom tier, the top three of which are ivory and the under three are scarlet to match Helen's shoes and handbag. Helen also wanted a large sash with a big bow at the back. This has to be the biggest bow I have ever made, it's huge and so girly-I love it!

This all seemed fairly standard in design terms, until she mentioned that she wanted a detachable train to wear as she walked up the aisle... Now this is a rather unusual addition to a 1950's design but she also said she loved the costumes in the BBC's Garrow's Law which is set in the 18th century, particularly the polonaise style of skirts worn by Lady Sarah Hill (the female love interest!). She didn't actually say polonaise there was much waving of hands and mutual cries of aren't they gorgeous dresses from us both- its great when you really understand what the bride really likes! Now, I totally loved Garrow's Law, especially the costumes and the 18th century is one of my favorite periods of fashion history, but it doesn't really go with the 1950's prom dress... or does it? Well, we think we came up with a pretty good compromise between periods with this detachable train that could be worn as a flat church length train or pulled up into a pollonaise like over skirt.

Here you can see the train laid flat at full length.  The sash is still in place and conceals the waistband of the overskirt.

 

 

With the train bustled up in a polonaise it just brushes the floor and means that Helen could dance in it as well. The way the fabric bunches up and folds is just lush! I love making dresses that can change throughout the day, and am really looking forward to seeing Helen's wedding photos when this rather fantastic dress will look even better than on my stand.

Sparkly Sparkly Bridal Hat!

Anyone who spends any time with me, knows I am a total magpie when it comes to anything remotely sparkly! I don't know why, maybe I am part cat as I love my 'shiny things'! So, as I am currently developing a line of bridal headdresses (in my rather limited spare time-sigh!) it seemed appropriate that the first design drips sparkly beads and pearls.  It is a very simple, hand blocked teardrop-shaped hat covered with silk satin then covered with beads. The beading is heaviest on the point over the eye, then gradually fades out towards the back of the hat. I have used this technique on bridal dresses. I am planning on making a detachable birdcage veil to go with this, once that is done I shall add some more photographs.

Uber Sparkly!

CF Week

From the 8th to the 14th of May is Cystic Fibrosis Week run by the CF Trust. As part of the week they have set a target of getting 10,000 more friends/followers on Facebook and Twitter in the hope of raising awareness about CF and reaching new people. They also want people with CF to post/blog/tweet about their life with CF, so this is my blog post.  Here are some basic facts about CF (people who have read my blog before will probably know them already but it doesn't hurt to read them again!)-

• Cystic Fibrosis is one of the UK's most common, life-threatening inherited diseases.
• Cystic Fibrosis causes the internal organs to become clogged with this sticky mucus attracting infection and making it difficult to breathe and digest food.
• People with Cystic Fibrosis have to undergo a tough daily treatment regime including taking dozens of pills, inhaled and intravenous drugs and physiotherapy.
• During Cystic Fibrosis Week, five babies will be born with CF and sadly, two lives will be claimed by Cystic Fibrosis.
• Only half of those living with Cystic Fibrosis are likely to live past their late 30s.
• There is no cure for Cystic Fibrosis.
•  Money raised during Cystic Fibrosis Week will help the Cystic Fibrosis Trust continue to fund medical research to fight the symptoms of, and treat the cause of Cystic Fibrosis. It will help the Cystic Fibrosis Trust improve the care of people with CF, and will help provide direct support for people with Cystic Fibrosis and their families.

On a more personal level, I thought I would post a copy of my repeat prescription, which runs to four pages these days.  From this rather long list can see just how many drugs I actually take or use every day, and this is on a good day...

Pills-
Creon 25000
These are enzymes to digest the fat in my food. As my pancreas is screwed I don't get them naturally. I take 6 pills with an average meal and 2 with snacks, so it totals about 24 a day.
Azithromycin 250mg
One pill a day, antibiotic and gunk reducer!
Citalopram 20mg
Antidepressant-pretty self explanatory, but without it I am an emotional wreck.
Itraconazole 100mg
Two pills twice a day. Antibiotic fungicide to combat Aspergillis (nasty fungus) growing in my lungs
Flucloxacillin 500mg
One pill twice a day. Antibiotic to damp down the bugs in my lungs.
Carbocisteine 375mg
Two pills twice a day. Not sure of the technical name for this but it thins the gunk in my lungs making it easier to cough up.
Omeprazole 40mg
one pill twice a day. Strong antacid for digestive problems caused partly by CF and partly by all the other drugs...

Inhalors and Nebulisors
Qvar 100micrograms
Two-four puffs twice a day depending how chest is. Steroid to combat inflammation of my lungs
Tiotropium 18micrograms
One puff a day.  Bronchiodialator acts on the small airways of my lungs to keep them open.
Serevent 25 Micrograms
Two puffs twice a day.  Brochiodialator (like ventolin but stronger)
Ventolin 100micrograms
As needed when I get wheezy.
Colistimethate Sodium 2 million units
Nebulisor solution twice a day. Inhaled antibiotic has to diluted by me with 2ml of sterile saline per vial. Used for a month in turn with-
Tobramycin Nebuliser Solution 300mg
Nebulised twice a day for a month-tastes awful but works.
Mucoclear Solution 6% hypertonic saline
Nebulised salt solution to thin lung mucus, once a day. This is just soooooo salty-but it does work so I do it...
Salbutamol Nebulisor solution 2.5mg
Nebulised ventolin used once a day to open up lung airways to allow the hypertonnic saline to penetrate lungs as much as possible.

Diabetes treatments
Novarapid Penfill cartridges
I take insulin with food, the amount I take is dependant on the carbohydrate content of what I am eating. This means I have to this out before I inject myself... this is annoying!
Aviva Test Strips
Strips for my blood sugar monitor
Multiclix lancets
Needle for the stabbing device so I can use said monitor.
Microfine needles 4mm
Needles for injecting insulin-they really are tiny so it doesn't hurt-unless you do it wrong and hit muscle...


So that's my everyday medical regime. If I want to go away for a weekend all this stuff and paraphernalia has to come with me... including the nebulisor and all its components-it all takes up a lot of suitcase space! Not to mention the fact that if I am ill then I will have to take intravenous drugs and that adds a whole new dimension to the regime, as most of the antibiotics come in powder form so have to be reconstituted by me. The number of needles, bottles of saline, water and syringes that fill my house during IVs is huge! And that is not including the antibiotics themselves and the hepsal flush (dilute heparin solution) that you have to do after each dose to keep the line open. I really am a walking pharmacy!

This regime is my life-every damn day, and I know that the regime will not get better, that my lungs will not get significantly better and that I will always have to take these drugs. The individual doses or pills may change from time to time but this is the way I have to live if I want to go on living for a reasonable length of time.  Please think about supporting CF Week -you can join on Facebook here. Or there is more info about it here.
(I think that this info is all correct and that I've got the reasons I take the various drugs right-if you know that I've spelt a drug name wrong or got the explanation of what it is wrong, don't make a smart arse comment please. I take them and that's what matters.)

Bad Blogger!

I have not been updating my blog as often as I should have been... It was a New Years Resolution that I would update it at least a couple of times every month and also blog more of my hats, and yet I've managed no posts for the six weeks-oh dear.  I never have been very good with New Years Resolutions!

I've had this half hat finished for several weeks now, but have only just got round to photographing it. first there was all the schmozole of Papworth and the port and the two weeks of IVs, then I went on holiday (hurray- I really needed it!) and then I spent the rest of the time catching up on work and getting a bride finished.  So finally I have got some nice pics of it in the lovely sunshine-

It was inspired by several hats that are pictured in a catalogue of vintage patterns that I got from Amazon a couple of years ago. I blocked the buckram base over a standard dome crown block, then having mulled it, I covered it with pink satin and a layer of black veiling. The edge is black satin bias binding. The decoration is rather more 1920s than 1950s, but I like it! Its a black ostrich feather pom pom that I made from an old feather I used in a show years ago, and to hide the base of the feathers I covered it with more black satin and lots of jet swarovski crystals.

Close up of feather pom pom

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.