Topic: Rheumatoid Arthritis

Does My Face Look Fat in This?

(Wearing Primark ‘Hate’ earrings, rest all Vivienne Westwood – World’s End shirt, Red Label shorts, Gold Label ‘Animal Toe Courts’)

These are photo’s you wouldn’t usually see. I have tons and tons of photo’s which go straight into the trash folder. Why? Well to be honest I’m just like everyone else, I cringe when I see a bad photo of myself. Who hasn’t panic jabbed the ‘untag’ button on facebook when a ‘friend’ posted a photo where you looked fat/ bad hair/ tired/ smudged make-up … insert issue of your choice. As it no doubt happens your friend thinks you are acting like a lunatic and she thought you looked gorgeous in the photo, so has no idea why you are screeching ‘How could you do this to me’ down the phone! But when it comes to body image we are always our own worst critic.

As most of you know I suffer from a disease called Psoriatic Arthritis, which is an inflammatory condition affecting the joins and tendons. I have spent the last two years battling this, there is no cure, only medication which can attempt to get it under control. For the last few months they only way I have been able to get out of bed every day is to be pumped full of steroids, injected in the butt. Each jab spot has left a half golf ball sized dint which may or may not go away over time – one of many possible side-effects I risk every day. Every time I trial a different drug there is a list of possible nasties which I might have to deal with but when the other option is to end up crippled and bed ridden you welcome a dimply butt with open arms.

We are lucky really that there are drugs on offer we can try, many diseases don’t come with that option. So yes I am grateful I can get access to health care – even though the drugs in themselves can leave us dicing with death, the untreated disease would be much, much worse. When you use steroids over a long period of time however there are two side effects which are almost unavoidable, weight gain and ‘Moon-face’.

I’ve spoken a lot already about weight gain and how with a lot of effort I managed to get it pretty much under control but the one thing which crept up on me which I have absolutely not control over is ‘Moon-face’. Had you asked me about Moon-face before my illness I would have only thought of the character in Enid Blyton’s The Magic Faraway tree, but it is a common side-effect of long term steroid use also know as Cushings syndrome. It is characteristic by unusual distribution of fat around the face, causing a round moon shape often with chubby ‘hamster’ cheeks. In addition to a build up of fat at the back of the neck a ‘hump’ and around the tummy. In very serious cases it can cause skin thinning where huge, gash-like stretch marks occur.

As I usually hide behind my mane of hair you wouldn’t notice that much of a change in my face, but I have been increasingly paranoid about the round, double chin effect which has started to happen. Since I had my hair up in these photos, under really bright sunlight you can’t disguise the fact I have Moon-face. On the plus side I have now stopped the steroids in order to trial yet another drug, they were only a temporary stop gap, so the face should go back to normal in a few weeks. I was going to ditch the photos and not mention it but that was until I read this article:

Steroids save lives, but we have to face-up to their side-effects

The author Dorthy Byrne also takes steroids for an auto-immune condition, she talks about her own experience with their side-effect. But also how we are very rarely really talked to by our doctors about this kind of side-effect, they aren’t going to actually harm us such as risk of stroke for example, so are often just included somewhere in the small print of the information leaflet in the bottom of the box. Yes of course we all realise we need to take these drugs, fact, but should that mean we shouldn’t be made fully aware of the way it can effect our bodies? Having to learn to accept you have an incurable condition is hard enough, but the emotional turmoil you suffer as you body changes out of your control is never broached. It isn’t just about looking fat either, hell I’ve been overweight of my own accord and whilst it got me down it was my own fault for doing no exercise and drinking pints of larger – oh yes traditional student life style. But deep down I knew I could do something to loose the weight, it was in my control and of course eventually I did. This is very different, the fact you can wake up one morning and hardly recognise your own face is very upsetting. It isn’t any thing to do with vanity, it is the feeling of loosing control which is the scary thing.

The first comment on that article was what made me want to write this, a rant about how vain the author was and how silly she was being scaring people and putting them off life-saving drugs. But she misses the point, anyone in enough pain to be given steroids, like me will know a puffy face is the last of their problems, however this does not mean they shouldn’t be prepared for it. So I felt it was important to share this, because there are so many people out there in the same position as me. We aren’t vain worrying about this, we are just dealing with yet another issue brought on by having an incurable medical condition and some times it is nice to know you aren’t alone in this.

Drip Diets & Detox’s: Why the Disgusting Trend for Hospital Treatments Makes Me Sick

I admit I was horrified to read a feature in Grazia the other week on the new ‘Drip Diet’ craze, but I’m not one to judge and if these silly girls want to risk their health to loose weight then whatever. As you know I’ve been sick lately but had to drag myself out today to run some errands, I picked up a Grazia to read on the way to cheer me up, but ended up in a rage.

I’m ill, I feel like utter shit. It’s a gorgeous sunny day but I’m covered up, every inch except my hands and the bottom half of my face. I have to cover my arms up because they are full of bruises from needles and one arm is a swollen mess due to a bad reaction to a vaccine. One of the drugs I have to take has made me super sensitive from the suns so I’m hidden under huge sunglasses and a hat. Ironically I also have a vitamin D deficiency so I really need some time in the sun, I will go and roll my sleeves up in the garden when I get home in where nobody can see me.

Two week old needle bruises, I don’t heal at a normal rate anymore

So when I open my magazine to see a feature on ‘Party girl drips’ I totally loose the plot. I remember seeing the photo Rihanna tweeted of her on a drip, I felt sorry for her being sick, I know what that’s like, having to be poked and prodded with needles in hospital is the bane of my life. But to now find out celebrities and ‘party girls’ are paying to have vitamin infusion drips to cure hangovers really upset me. I am not one to judge, each to their own, but to make such hospital treatments that other people have to save their lives into some frivolous fancy for these rich and stupid bitches is too much. I was also severely disappointed to see at the end of the feature one of Grazia’s editors trying out the treatment. I could have respected a critical review of the worrying situation, but to try it out like a new lipstick only shows encouragement.

An allergic reaction to the Pneumonia vaccine I had to have prior to starting a new medication – this was two days after the shot you don’t want to see how bad it got after that, I suffered 5 days before I could even get treatment for it (excuse the mess and the fact I’m in my bra I never intended to post this photo, I only took it to show my friend who is a nurse).

So here is some reality, a reality I hope none of these silly celebrities ever have to face. For those of you who don’t know I suffer from a disease called Psoriatic Arthritis (previously thought to be Rheumatoid Arthritis and Fibromyalgia). It is a difficult thing to correctly diagnose hence the number of different diagnoses I have had so far. Even this one disease has many different variations. Either way they are all auto-immune conditions, this means my immune system doesn’t work correctly, rather than defend my body it actually attacks it. In the two years I have been suffering with this I haven’t had one day where I wasn’t in pain. Some days I cannot get out of bed, every single part of me hurts – there is now way I can ever describe this, my joints swell up, I can’t walk without feeling my hip joint grate in its socket, my fingers are now permanently two ring sizes bigger, my feet will only fit extra wide shoes now, I throw up most days because of the meds, I constantly have stomach ache from the meds… the list goes on and on.

Treatments are available to help manage the condition and try to prevent further onset, however there is no cure. I’ve tried so many different drugs I lost count, many of them having severe side-effects, one put me in hospital when I had a migrane for five days, I thought I was going to die. Right now I am left in the situation where all the ‘safer’ drugs have failed and I am now facing a drug called Methotrexate. Methotreate or MTX for short is a cytotoxic drug, it is a chemotherapy used in higher doses to treat cancer. That is how serious it is, this I am told is my last resort because I am not sick enough to merit the Biologic drugs which have better sucess rates, yet are 100 times the price. Mr Cameron does not think I am worth £10,000 per year. I must wait until I am near crippled, even though medical research proves it is vital to stop the disease early before it gets to irreversible damage levels. Having said that MTX does have a 30% sucess rate, it is something of a wonder drug for those people allowing them to live an active life. For the other 70% the side effects are very scary, ‘minor’ side effects are nausea, dizziness, stomach pain and hair loss, ‘major’ includes liver damage, seizures, breathing difficulites, oh and death. I don’t have a particularily good track record with side-effects so I admit I am absolutely terrified to start this drug. I have two weeks before I start it so am planning days out and a party with my friends before hand, just in case I’m too sick to see them for a while.

My friend having blood taken for tests

I probably know a lot more about this drug than the NHS booklet would like, this is because I am an administrator in an Auto-immune support group. This is a private group where we can share stories and offer a shoulder to cry on. In our group one member had been on MTX for 15 years it is really helping her, others however I have seen suffer from it immensely. Constant nausea, stomach pains, mouth sores and hair loss. Because let’s face it, as much as I would shave my head right now if I thought I would be cured, the fact is it’s a prospect nobody wants to face. Whilst the dosage I will be on is not as high as that of a cancer sufferer, where the hair is pretty much guaranteed to fall out, it can still be effected. I have read stories from people just experiencing slight thinning to one woman loosing 70% of her hair a few weeks prior to her wedding. It really is stupid to be worrying about something so insignificant, but when you are used to having a disability you can hide, something so visual as your hair makes it very much public. Just like the bruised arms, suddenly you look sick.

Having the Methotrexate injection, my friend has them in hospital as she is very sick and needs to be closely monitored. Usually the injections are self administered.

These last two photo’s are of my very dear friend, I won’t use her name but she knows who she is. She set up our support group and is one of the bravest women I know, as well as one of the most generous and kind hearted. She is always trying to help raise awareness of our conditions and took these photo’s as a means of doing so. Her condition is far worse than mine, she has multiple strains of auto-immune diseases. She gave us all a bit of a worry the other day when she was rushed off to hospital and we hadn’t heard from her. Thank god she is ok but she is currently having to have a drip infusions to keep her alive.

So forgive me if I don’t want to have such medical procedures trivialised in a glossy magazine. Grazia I unsubscribe.

Be Cool

Wearing: Vintage Chanel blazer, River Island t-shirt – (you know that perfect, soft, nubbly material well that), New Look earrings, All Saints sunglasses from TK Maxx and my hair up in a bun fancy that!

As you all know I don’t often post in real-time. I usually have a weeks worth of post’s stacked up as I don’t always have time to post daily.  You also know that I have health problems, namely Rheumatoid Arthritis, but you probably don’t know I also suffer from a few other conditions. One of those is constant migraine. I didn’t have a post scheduled today, because I have used up my back-ups and seem to be sat staring vacantly at a few half done ones I can’t seem to finish. I have taken a turn for the worst last week which I haven’t recovered from yet. I’m not sure what is going on with my immune system, to quote my rheumatologist it is ‘frazzled’. Right now I am on a large dose of steroids so I am not getting so much of the usual joint pain. This feels rather odd, because I get the warning signs of a bad flare up – it feels a bit like getting the flu but without the sniffles. But then I didn’t get the curl up and die joint pain. It is a very strange sensation. Possibly because I didn’t realise how much of a bad flare up I was in, I didn’t fee too bad on Saturday so I decided to start redecorating my bedroom. I delve right in hauling out junk from under my bed and the loft cupboard. Then I start to feel itchy and sniffly. I ignore it and carry on. Then I get really itchy and tired. I look down at my arm, then my legs, then my tummy. Every part of my body is covered in hives, I look like Ive got the chicken-pox! It turns out that not only are people with auto-immune diseases prone to allergies, their bodies are also prone to overreacting to what would be minor allergies in most people. On top of that some medication can effect how the body responds to allergies. That pretty much sums up the infrequency of my posts this last week and the delay in replying to emails.

Besides the illnesses I am also considering some pretty big changes in my life right now – even bigger than redecorating my bedroom! The redecorating is a massive deal to me, it must be about five years since it was last done. But it got to breaking point where I just couldn’t cope with the clutter any more, so a huge clear out and redesign is happening. I will share with you once it’s complete, I am really excited about it. I want to be able to see all my clothes and be able to find what I am looking for! I want to display some of my beloved treasures!

Anyway, I am going off the point of this post. Which was to highlight two seemingly totally different post by two of my fellow bloggers and good friends.  The first is on a fun, cheerful note by Lawrence ‘Celine Sunglasses‘. I’ve never been a sunglasses person. It always seemed too much effort to carry them around if a peep of sun dare shine in gloomy Manchester. Even after trying on every single pair in my beloved Chanel I never did succumb to their allure. I had an old pair I would whip out when abroad but that was about it. Lately, however due to my increasing migraines I have become very sensitive to bright light. It doesn’t even have to be sunny, just bright, including artificial lights. So always the one to put a positive spin on things I decided the only way to deal with this is to ramp up on the fashion. Oh yes, my love of sunglasses now knows no bounds, I can’t get enough of them! I haven’t taken a trip to Chanel just yet but I have certainly been getting my designer fix. I know I am always harping on about TK Maxx but seriously if you haven’t done so already go check out their sunglasses!! Bargains galore from so many designers and brands. I will have to take some photo’s of my collection (once the decorating is done and I can find them), but Lawrence tells all in his post about our latest find. I cannot tell you how excited we were to find not just one, but a pair each of the revered Celine ‘Original’ sunglasses! Cerulean for him and ocher red for me!! Not the £250 they are in Harvey Nicks, oh no just 50 of your British pounds!

The second post I wanted to share is by Florrie ‘Speech, Expression and Migraines‘. Florrie and I became friends well before we discovered we both suffered with chronic pain conditions. Yet I believe in fate and I do wonder if the cosmos threw us together to support each other. We share tales of horrendous drug trials and can understand what a sever attack can feel like. In her post Florrie puts into words something I have never been able to. My reaction to pain is most often anger.  To suddenly be crippled by pain, be it migraine or RA, is indescribable. It is also very hard to communicate to someone how you are feeling when you can’t even bare to open your eyes, let alone your mouth. By now my close friends and family understand when I go quite all of a sudden. Or can seem snappy with no reason. Put simply I am in pain.

So there we have it, a pretty mixed bag of a post. I chose this photo because it shows of my current favourite sunglasses, black cat-eyes by All Saints, a bargainous £14.99 from TK Maxx. They also have tons of nice pairs on the TK Maxx website in case you hadn’t seen, I keep checking everyday – honestly I’m obsessed!

Crying Dry Tears: Another Very Hard Post To Have To Write

This time last year I wrote a post about how I had been recently diagnosed with Rheumatoid Arthritis. At the time I was feeling lost as having to accept this strange life I had suddenly thrust upon me. I don’t think I was thinking about how I would be in one years time. But I am sure I though I would be on a treatment plan and in some form of remission. What I certainly wouldn’t have expected was to be now battling two primary auto-immune diseases and two secondary conditions. It is the gift that keeps on giving.

I still have a form of inflammatory arthritis, possibly Rheumatoid but now suspected Psoriatic Arthritis. The two conditions are similar enough not to go into explaining them, swollen joints and no end of pain. I was coping with this knowledge when I got slapped in the face with a second diagnosis of Fibromyalgia to explain the extreme fatigue side (many Auto Immune disease overlap with symptoms so diagnosis can be difficult, the fatigue could be part of the inflammatory arthritis but it may be a condition entirely on its own. Hell I could write an entire blog on that subject never mind one post). I describe it as a slap in the face because I was furious at the rheumatologist for giving it me. He didn’t give me the disease of course, so it was a case of shooting the messenger. I’m not so sure why I was so angry about it, mainly because I had enough problems but also because Fibro has so much stigma attached to it. It wasn’t until fairly recently that Fibro was medically proven, it is for the record a neuro-muscular condition. Put simply some chemicals in your brain don’t work quite right causing you to feel constant pain and extreme fatigue. The severity can alter day to day and from person to person. But the thing that is tricky about it is that it is hard to diagnose. Today a test is done which involves scoring pain when a set of points on the body are pressed. Brain scans can also show neurological problems but these tests aren’t done as standard. So you would think with all this medical evidence that would be that. Yet because Fibro was not proven for so long it developed a stigma that it was an ‘imaginary’ condition, that people claiming it were just lazy. Then you get idiot journalists writing this load of old tosh in the Sun:

“My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”

“And being disabled is incredibly fashionable. The number of people who claim to be disabled has doubled in the past ten years.”

“I think we should all pretend to be disabled for a month or so, claim benefits and hope this persuades the authorities to sort out the mess.”

Ron Liddle

If I was ‘a bit peaky’ it would be a relief. I would love to be a bit peaky. Instead I have days where I sleep right through them. I have days where I can only curl up in a ball because I feel like every single bone in my body is being crushed. Because of this illness I was pushed out of a career I had been to university for the last eight years, leaving me with an insane amount of debt that I was told I could easily pay off once I got this job I had worked so hard for. It isn’t fun having to stay at home all day. I actually do not claim benefits but if I did I would bloody well be entitled too, being a tax payer and all. I might like to be fashionable but this for sure is not one I would recommend following! It goes without saying that Liddle is ignorant and a lazy journalist who cannot be bothered to actually research the illnesses he mentions. He is like many other ‘journalists’ looking to stoke a fire and get  a bit of attention. Much easier than researching and writing a brilliant piece of journalism. But the point is he, as a journalist for The Sun, wields a lot of power. The power to reenforce stigma about a genuine illness. Many people will take what he says as the truth, they will not bother to go out and research what these diseases really are. It will stay in their minds, that these are ‘made up’ and people who claim to have them are not really ill at all and hey if they are also claiming benefits then they are spongers too. These diseases are not new, but the advances in medical research are, allowing them to be identified and further defined.

Things haven’t really changed all that much for me, I have extremely bad days, yes, but mostly I have OK days which is fine by me. I haven’t responded well to any of the treatments yet. There are more to try and it is a long process but I have no choice to stay hopeful for the next one. Taking so many medications have their own pros and cons. One weird one is that one of the meds I am on seems to be amplifying the condition Sjogrens. The first thing I noticed was how dry my skin was, then my nose and my eyes. All easily eased with lotions and drops. Then my mouth got really dry, it is too hard to explain how that feels. All your teeth hurt, so I have artificial saliva. This is totally gross, it feels like having someone else’s spit sprayed into your mouth, why on earth they didn’t think to make it mint flavour I don’t know! Then I was having a bad day and burst into tears, but no tears came out. Not one drop. I can’t cry any more. Which is strange and a bit funny, but also so very sad.

One good thing I can say has come out of all this is that is has given me more time to pursue working in fashion. It felt right in a way walking away from my old job, it was a weight lifted. I don’t know what the future will bring, we shall see. I’ve always been a big believer in fate.

As a result of the Liddle debacle, sports commentator Mark Robson spoke out, he give a very accurate description of what living with M.E is like (M.E and Fibro are very similar diseases).

Sports Commentator Mark Robson talks about living with ME (mp3)

Shoes Shopping & Questions About Selling?


(Wearing: Vivienne Westwood top, lace skirt, belt & shoes, Steven Harkin Clutch)

This is what I wore to go and meet my friend L in town for a coffee and generally get some fresh air after being stuck inside for so long being ill. On the being ill front I managed to see the practice manager at the Rheum department on Monday, she was great actually once I got hold of her on the phone she had me go right in. I now have confirmation that the problems were caused from side effects and they should ease off once the drug is out of my system. They are not going to start another RA drug yet as they think my Vitamin D deficiency is still causing problems so they want to assess that again in a months time and decide where to go from there. In the mean time I have a new anti-inflammatory drug to try along side a drug which should stop the side effects I had from the other anti-inflams. Anyway boring as this all sounds I hope to be feeling somewhat human again in the next week or so. To add a little cherry on the cake my right wrist has decided to develop a very painful ganglion! I am a walking medical dictionary.

I have to admit as usual I looked a whole lot better than I felt, and had to stay in bed the whole next day to recover. After being on the RA drugs I had forgotten quite how bad it feels not to be on them. Liken a couple of hours drinking coffee and trying on a few pairs of shoes to running a marathon and you are somewhere near. But as I always say there is no point worrying about tomorrow.

As I am sure you will be expecting, the sales are going to be starting soon so this was purely a reconnaissance mission. For once I was the voice of reason and neither of us bought a thing – except some make-up. I have been looking for an eye-liner that doesn’t smudge all over my face by the end of the day and have been recommended to try Mac so I will let you know how that works. I am usually put off Mac because it is always so busy but I needed the damn eye-liner so I risked it. After having them turn down the music so I didn’t have to yell at the SA I came away with my little pot of liner and a new brush. The SA was really helpful so I can’t wait to try it out.

We had a good look around Vivienne Westwood where I finally decided to try on a shirt I had been eying up all season. I knew as soon as I tried it on I would fall in lust with it, but I was very sensible and put it back. Lucky I did as just two days later I got a call saying it was on sale! I have it mail ordered so cannot speak any more of it until I have it safely in my hands in case I jinks it.
We then just went for a look around Selfridges shoe department. We are boycotting Harvey Nics. Why are we boycotting HNs? Well actually it isn’t their fault entirely, but by association. My friend L bought a beautiful Michal Kors bag just 6 months ago, but the screws holding the handle together literally disintegrated! HNs took the bag to have it sent to MK for repair, yet after making her wait 6 weeks she got a phone call saying the bag couldn’t be repaired and she could have a refund. The point was she loved the bag and didn’t want a refund. It would have been very easy to fix too, especially as they still sell the exact same bag on their online store in the USA – we could only find it in other colours in the UK. I just think this is appalling customer service and it has put me off every buying MK. Fortunately L found a gorgeous Marc Jacobs bag in Selfridges – who will fix your item themselves if the manufacturer is unable, so this story has a happy ending.

All the shoes in the pictures are this seasons Prada, I really like the swirled design they have incorporated into their shoes this season. I could never wear the two pairs with the higher heels, they felt very unstable, but that’s why I like to try them on for fun. Check out the Vivienne Westwood wall paper in the photo in the mirror above.

We had to cut through the Arndale shopping center, a place I try and avoid at all costs. Where I was met with the bastard child of Chanel and Lulu Guinness I had to take a snap to show you, I think perhaps it is a clutch bag or possibly a phone!

I am in the process of writing a post on selling tips for car-boots, eBay and Etsy so if you have any questions I might be able to answer just let me know and I will include them in the post.
Have a great week,
Pearl

I also did an interview for Looknbe this week which you can read HERE

In this post I wore lace, which is the item of the month on EveryBody EveryWear, click the link to see how lots of other bloggers styled their lace piece!

Lace | Everybody, Everywear

Is There a Doctor in the House?


(Wearing: vintage dress from www.ShopStreetStyle.com, Vivienne Westwood army belt, Pierre Hardy shoes, Steven Harkin clutch)

This was a rather impromptu outfit since all of a sudden today summer decided to hit up north! The first thing I did was reach for these shoes – cream suede in Manchester not really a wise move – figuring it was going to be dry enough not to ruin them. After another conversation via twitter with the ever wise @mrsbossa (come join our rambellings @pearlwestwood), we decided I needed to enter into a bit more self promotion for my online vintage shop (www.shopstreetstyle.com in case you missed that). Whilst I couldn’t convince Mrs B to walk around in a sandwich board I figured the next best thing would be to walk around in some of the vintage dresses myself. I have to admit I have been very good at not snaffling all the merchandise for myself. Actually I get much more joy out of seeing others wearing my dresses than I do wearing them myself, I like putting a smile on peoples faces. But I do get a lot of people asking where I get my vintage from and whipping a business card out of my pocket is some good advertising! I finally managed to get some more photos taken of some of the new stock so they will be going up next week.

In other news I have been very ill again, so apologies for the unanswered emails and such. The disease modifying medication I had been taking for my rheumatoid arthritis started having terrible side effects. I ended up in hospital last weekend but am OK now, just back to square one on the medication front. Actually further back then square one as I can’t even get an appointment to start a new medication for a few weeks. So I have to suffer in silence again as the RA pain came back with a vengeance once I stopped the medication. I am very angry that I ended up so ill due to the incompetency of a locum GP I saw who when I asked if she thought my symptoms were related to my medication, simply shrugged. I will be making a formal complaint.

Speaking of doctors I have made some observations in the last week. At my GPs surgery they called out ‘Mrs Suchandsuch’, a ‘Mr Soandso’ then when it came to me it was simply ‘Pearl’. In the pharmacy I was waiting for a prescription, it was a new pharmacist who I had not seen before she was around my age. She called out ‘Dr Westwood’, I was sat right in front of her yet she looked to a gentleman in his 50s first, an old lady, all around the shop before looking at me. I raised my eye brows and gave her a smile, which was not returned as she snapped ‘full address please’ as if she did not believe who I was. I have to say I do find all this kind of thing rather amusing. It is almost as if some people are embarrassed by my title, don’t think I deserve it or think I have obviously made it up.
Are you not allowed to be fashionably dressed and in your twenties and be educated? I was wearing the outfit in these photos. People are so quick to make judgements and stereotype. I find that most people have a deeper story to tell, so that making judgements on first impressions are never a good thing. I was talking to a security guard today, he was doing that job because he cannot get a job in quantity surveying in which he has a PhD. My PhD is in Biochemistry, if I do not look like a scientist then what do I look like? I am intrigued to know? Imagine if we we’re all given our jobs based on what we looked like, what would I be and what would you be? Do you look like your job?
Pearl

When Life Gets In The Way: Blogging Against Adversity


How much do I love this Chesterfield chair!!

I have been meaning to write this post for a while but haven’t much felt like it. Then Roz wrote this amazing post for the IFB, which you should go over and read – then come right back:
Blogging Against Adversity
Both Roz and I have had a medical condition impact our lives so much that we had no choice but to voice it on our blogs. We both agree that whatever fears we had about doing so were swept away by the genuine love and support of our readers and friends. So I thought I would take this chance to give you an update and to fill in new followers. I have rheumatoid arthritis you can read about it here and a follow up regarding problems with the condition and fashion here. Besides the obvious problems such as being in pain and general exhaustion, drug trials and their side effects it has impacted my life in ways I never really imagined. I guess until you go through something like this, you can watch all the episodes of E.R and House you like but you will never know the little things which really get to you.

I don’t wear flats, never have, never will. Er right ok so how do you wear 3″ heels when you knee is so painful it hurts to move, your hip is grating in the socket so much the sheer feeling makes you feel nauseous and your feet, every single joint, feels like it is stuffed with cotton-wool. Even if you can get your swollen little feet into your shoes you certainly aren’t walking anywhere in them. So I have spent the best part of this year in Ugg boots- I am not impressed about this one bit. I have 3 pairs of Uggs now, I have a pair of black flat army boots for when it is rainy, my trusty old Chanel ballerinas and Vivienne Westwood pirate boots for when it is sunny. I have taken to wearing a tatty old black cardi (it is Westwood and thus I will wear it until it drops to shreds) over everything to cover the wrist and elbow supports. Loose fit black peg trousers have always been my thing and my collection has grown to disguise the knee supports. When I do wear heels I now pull them out of my bag at the desired destination – on a positive note it will save me a fortune in re-heeling. Of course there is a lot of smoke and mirrors with the blog. You don’t see the Ugg boot days, I take off the supports for the photos and I certainly don’t wear bloody flats in the photos. I don’t just do this to make the photos look better, though evidently they do. But it makes me feel better that I can at least see what the outfit was intended to look like, rather than having to wear it with the flats and insanely huge bag stuffed with spare supports, gloves, shoes and meds. Clutches have been well and truly abandoned of late, as have totes which put strain on my wrist.

Fortunately the doctors also diagnosed me with a vitamin D deficiency, the medication for this worked fast so I am ten times better than what I was before Christmas, where I could barely get out of bed. I have now started disease modifying drugs to fight the RA, the effects of which I should see in around 8 weeks – if they work for me. I have tried different types of anti-inflammatory all of which my reaction to was far worse than the original problem and decided to show themselves just after the med’s had started working. The last ones I had tried gave me one day of being pain free before the worse onslaught of side effects I have ever had. That was a very strange feeling, I have gotten so used to dealing with the pain I had totally forgotten what it was like to not have it.

But anyway as long as the goodish days are more than the very, very bad ones I can cope for with that. I do worry I will never get the life back I used to have. I can’t burn the candle at both ends and really have to look after myself.

Helga reminded me the other day that Vivienne Westwood used to receive people when she was still in bed. In fact she liked to do everything from her bed, even make the clothes, so next time I am stuck in bed with my laptop I will just pretend I am Queen Viv. I admit I have taken to wearing my pink furry Prada scarf with my PJ’s, I am ridiculous I know, but it makes me smile.

(Mother of Pearl is wearing: Jimmy Choo H&M tunic and trousers, Pierre Hardy clutch, Chanel shoes and Prada stole – more on this topic again to come!!)
I choose these photos to go with this post as I was at a family party to celebrate my cousin’s 1 year anniversary of her having a double lung transplant. No matter where you are and what problems you have there is always someone worse off than you, that is why I have never been one to complain I guess. I also wanted to include this photo of my sidekick and I. I know everyone loves their mum but mine really is my best friend, I’d be lost without her.

(Wearing: my favorites! Ann Demeulemeester leather jacket, Vivienne Westwood Anglomana ‘Miller’ dress and Christopher Kane embroidered boots – them being too big ended up being a bonus as I put padded insoles in them so comfy, Christopher Kane for Topshop bag – another bonus being at a family party means there are plenty of other people you can get to carry your stuff )

Keep safe and well, where ever you are,

Pearl

Aw, You Guys! (And Some Problems With Shoes)

If I thought the last post was hard to write then this one is even harder. I really don’t know what to say. I was overwhelmed by the comments, messages and emails from the last post, at the kindness, support and understanding from you all. Good job I was at home reading them, you lot getting all soft and making me teary eyed. Thank you. I will reply as soon as I can.
You might regret those words however, when I start ranting on and on, soon you will be begging me to go back to writing about shoes, I am sure :-)
I will warn you this is a long winded post, you are forgiven for skipping to the bottom and just looking at the pics of Victoria Beckham!
But I feel like I know you all that bit better now, and I guess we all have our demons to face. I also never thought how it may help others talking about these things, but of course if I have these problems I am sure there are others out there facing the same thing. Maybe this can be the first fashion blog to give advise for sick people!

So lets talk about one of the biggest issues, the shoe situation.
First I think I need to give you a quick over view of my situation, basically after being told there was nothing wrong with me and having seen four GP’s I finally got a referral to a specialist. The first 3 specialists thought I had Carpal Tunnel (how I wish that had been right, it can be fixed with an operation). I said till I was blue in the face that whilst my hands hurt the most they were not the only problem, only to be told ‘lets concentrate on one problem first’, ‘that’s probably something different’…until all the nerve testing and what-not came back negative and one consultant said ‘so you have a PhD, what do you think it is?’, I kid you not.
Luckily he agreed to refer me to the rheumatology unit, where I saw a wonderful Dr who diagnosed rheumatoid arthritis (it may still be psoriatic arthritis but that’s another story and its pretty much the same thing). She sent me off for blood test and x-rays to determine the specific strain, so that treatment could begin. She said to come back in 4-6 weeks – me thinking OK maybe it takes that long for the x-ray appointment. I know blood test are done the day they hit the labs. What I later found out was that I should have had the x-rays on the same day, irritating but never mind I had them a couple of weeks after. But then what started to annoy me was why make me wait 6 weeks to come back when the test results would have been received withing the next day or so?
So the 6 weeks later was actually last Friday, I was looking forwards to finally getting somewhere in controlling this disease. I get there and am disappointed to find it is not the same Dr I saw last time, so I have to explain everything all over again. This guy says the blood tests and x-rays are all negative. Then wants to examine my feet, applying pressure to joints asking if it hurts, mostly its Ok, he seems a bit annoyed saying but you told the last Dr certain joints were painful. I explain that no, today is a pretty good day and the pain moves around so its not miraculously gone away, just hiding today.
He then points out I have bunions and starts squeezing my foot there, I say yes I am aware of that but really they are tiny and not at all painful. He is making a bit of a point about the bunions so I demand to see the x-ray (whilst the only x-rays I have studied are from ancient remains, its all pretty much the same, I’m no radiologist but I know a bit). I say yes I agree they are there but again very tiny and not where the pain is. The he starts asking if I have back ache, yes I do, so he ‘examines’ me without wanting me to take my coat of (my huge puffy ski coat!!) gives my lower back a prod, asks me to touch my toes. Then says maybe we should have your lower back x-rayed. This really starts to piss me off, as lower back x-rays can affect fertility and the reproductive organs and are only ever done if absolutely necessary so I refuse point blank. I am seriously about to throttle this guy, trying to fob me off with bunions and my back, were you hoping for a slipped disk??
So he decides I need more blood test, I am an academic so have been hitting up the medical journals to learn about the different test and their accuracy. It is well known that the most common test, Rheumatoid Factor(RF) is not accurate for younger patients and early stage cases. But well lets redo them all again anyway! He also recommends ultrasound scans – these are more accurate for arthritis detection, but I will have to wait 2 months for an appointment. That’s the NHS what can you do. I understand totally that you cannot being to treat arthritis until you identify the exact strain. But I am in F’ing agony and haven’t slept for months, so I tell him I need something to help me, if I have to wait 2 more months. He says he will put me on stronger anti inflammatory – in the arthritis world they are called NSAID’s (non-steroid anti inflammatory drugs). What can I say they don’t seem to be making any difference, will keep you posted. I still cannot fathom why no one gives a toss about my knee and hip!

Anyway back to the shoes.

Whatever part of your body is hurting its going to be uncomfortable, but your feet are the hardest thing because they have to wear shoes. When I wake up in the morning I have to lay for about half an hour until the stiffness eases off from my hands and feet. I got woke up by the postman the other day, and automatically jumped out of bed to race down to answer the door, my feet hand woken up quite as quickly and I fell found myself sprawled on the floor!
It is hard to explain how the pain works, its like all your joints are stiff and also like someone has stuffed cotton wool inside them. Sometimes specific joints throb, pain shoots up them, dull aches. Mostly it feels like I want to stretch out my feet and toes as wide as I can. My toes also crack, like when you crack your knuckles.
So when all you want to do is stretch out your feet having to put them into shoes is really not pleasant! On bad days all I can do is wear Ugg boots, the soft sheep skin really helps as it cushions between every toe, I have an outdoors pair and a pair I wear constantly around the house. Those funny looking socks with individual toe sections really help too. On days which aren’t too bad I prefer to wear shoes with a small heel rather than flats as I find them more supportive as they hug the arch of the foot. My favourites are my Vivienne Westwood low heeled shoes and my Fifi Louboutin’s as they both have a low heel, are well padded inside, support the arch and have a nice wide toe area.
I’ve always had wide feet so I have never been a fan of stuffing my toes into tiny, narrow fitting shoes. In fact I think my expensive shoe habit has stopped my feet being in a worse condition. That said I think my bunions (isn’t that a vile sounding word) are genetic, rather than a course of my own actions. I would never cause myself damage for fashion, and whilst a lover of heels I save the sky-scrapers for sitting in bars!
Victoria Beckhamis probably the most famous person with bunions, they seem really bad, I think she should get herself some lower heels too, though she has been something of a flats convert as late.

No real reason for these two pic other than I think VB look fabulous!

In this pic however it seems her shoes are too big, with a gap at the heel. I often find myself having to compromise on shoe size, my feet are a size 38 in length but for the extra width I need a 38.5 and sometimes a 39. Generally with boots I just get the larger size as you can’t notice but with court’s it is not possible as your foot slips in and out all the time. Luckily Mr Louboutin understands me and his 38.5 fits me perfectly, I hate brands who don’t do half sizesand I wish more would do extra widths. I know Clarks and Duo shoes do but really they aren’t my cup of tea.

As demonstrated so kindly by VB here you can see that many ballet flats don’t actually support your foot well. They are comfy, I love my pair to pieces but I find my foot arch can get a bit achy if I wear them all the time. In winter my riding boots are the flat of choice as they have a small chunky heel so the foot is supported. This does leave me with bit of a summer shoe issue so I will have to try and find a stylish alternative – I guess with UK weather the is no rush!
I used to hate wearing socks in bed but my feet freeze now. I don’t care what that there is no physical proof that cold weather makes arthritis worst, but scientist still don’t know the exact route drugs are Incorporated into the hair – doesn’t matter it still happens! Wearing big socks seems to help the pain a bit, the more ridiculous looking the better!

Next post will be a short post, promise!!
Again HUGE THANK YOU TO YOU ALL!!!!
Pearl

Aw, You Guys! (And Some Problems With Shoes)

If I thought the last post was hard to write then this one is even harder. I really don’t know what to say. I was overwhelmed by the comments, messages and emails from the last post, at the kindness, support and understanding from you all. Good job I was at home reading them, you lot getting all soft and making me teary eyed. Thank you. I will reply as soon as I can.

You might regret those words however, when I start ranting on and on, soon you will be begging me to go back to writing about shoes, I am sure :-)
I will warn you this is a long winded post, you are forgiven for skipping to the bottom and just looking at the pics of Victoria Beckham!

But I feel like I know you all that bit better now, and I guess we all have our demons to face. I also never thought how it may help others talking about these things, but of course if I have these problems I am sure there are others out there facing the same thing. Maybe this can be the first fashion blog to give advise for sick people!

So lets talk about one of the biggest issues, the shoe situation.
First I think I need to give you a quick over view of my situation, basically after being told there was nothing wrong with me and having seen four GP’s I finally got a referral to a specialist. The first 3 specialists thought I had Carpal Tunnel (how I wish that had been right, it can be fixed with an operation). I said till I was blue in the face that whilst my hands hurt the most they were not the only problem, only to be told ‘lets concentrate on one problem first’, ‘that’s probably something different’…until all the nerve testing and what-not came back negative and one consultant said ‘so you have a PhD, what do you think it is?’, I kid you not.
Luckily he agreed to refer me to the rheumatology unit, where I saw a wonderful Dr who diagnosed rheumatoid arthritis (it may still be psoriatic arthritis but that’s another story and its pretty much the same thing). She sent me off for blood test and x-rays to determine the specific strain, so that treatment could begin. She said to come back in 4-6 weeks – me thinking OK maybe it takes that long for the x-ray appointment. I know blood test are done the day they hit the labs. What I later found out was that I should have had the x-rays on the same day, irritating but never mind I had them a couple of weeks after. But then what started to annoy me was why make me wait 6 weeks to come back when the test results would have been received withing the next day or so?
So the 6 weeks later was actually last Friday, I was looking forwards to finally getting somewhere in controlling this disease. I get there and am disappointed to find it is not the same Dr I saw last time, so I have to explain everything all over again. This guy says the blood tests and x-rays are all negative. Then wants to examine my feet, applying pressure to joints asking if it hurts, mostly its Ok, he seems a bit annoyed saying but you told the last Dr certain joints were painful. I explain that no, today is a pretty good day and the pain moves around so its not miraculously gone away, just hiding today.
He then points out I have bunions and starts squeezing my foot there, I say yes I am aware of that but really they are tiny and not at all painful. He is making a bit of a point about the bunions so I demand to see the x-ray (whilst the only x-rays I have studied are from ancient remains, its all pretty much the same, I’m no radiologist but I know a bit). I say yes I agree they are there but again very tiny and not where the pain is. The he starts asking if I have back ache, yes I do, so he ‘examines’ me without wanting me to take my coat of (my huge puffy ski coat!!) gives my lower back a prod, asks me to touch my toes. Then says maybe we should have your lower back x-rayed. This really starts to piss me off, as lower back x-rays can affect fertility and the reproductive organs and are only ever done if absolutely necessary so I refuse point blank. I am seriously about to throttle this guy, trying to fob me off with bunions and my back, were you hoping for a slipped disk??
So he decides I need more blood test, I am an academic so have been hitting up the medical journals to learn about the different test and their accuracy. It is well known that the most common test, Rheumatoid Factor (RF) is not accurate for younger patients and early stage cases. But well lets redo them all again anyway! He also recommends ultrasound scans – these are more accurate for arthritis detection, but I will have to wait 2 months for an appointment. That’s the NHS what can you do. I understand totally that you cannot being to treat arthritis until you identify the exact strain. But I am in F’ing agony and haven’t slept for months, so I tell him I need something to help me, if I have to wait 2 more months. He says he will put me on stronger anti inflammatory – in the arthritis world they are called NSAID’s (non-steroid anti inflammatory drugs). What can I say they don’t seem to be making any difference, will keep you posted. I still cannot fathom why no one gives a toss about my knee and hip!

Anyway back to the shoes.

Whatever part of your body is hurting its going to be uncomfortable, but your feet are the hardest thing because they have to wear shoes. When I wake up in the morning I have to lay for about half an hour until the stiffness eases off from my hands and feet. I got woke up by the postman the other day, and automatically jumped out of bed to race down to answer the door, my feet hand woken up quite as quickly and I fell found myself sprawled on the floor!
It is hard to explain how the pain works, its like all your joints are stiff and also like someone has stuffed cotton wool inside them. Sometimes specific joints throb, pain shoots up them, dull aches. Mostly it feels like I want to stretch out my feet and toes as wide as I can. My toes also crack, like when you crack your knuckles.
So when all you want to do is stretch out your feet having to put them into shoes is really not pleasant! On bad days all I can do is wear Ugg boots, the soft sheep skin really helps as it cushions between every toe, I have an outdoors pair and a pair I wear constantly around the house. Those funny looking socks with individual toe sections really help too. On days which aren’t too bad I prefer to wear shoes with a small heel rather than flats as I find them more supportive as they hug the arch of the foot. My favourites are my Vivienne Westwood low heeled shoes and my Fifi Louboutin’s as they both have a low heel, are well padded inside, support the arch and have a nice wide toe area.
I’ve always had wide feet so I have never been a fan of stuffing my toes into tiny, narrow fitting shoes. In fact I think my expensive shoe habit has stopped my feet being in a worse condition. That said I think my bunions (isn’t that a vile sounding word) are genetic, rather than a course of my own actions. I would never cause myself damage for fashion, and whilst a lover of heels I save the sky-scrapers for sitting in bars!
Victoria Beckham is probably the most famous person with bunions, they seem really bad, I think she should get herself some lower heels too, though she has been something of a flats convert as late.

No real reason for these two pic other than I think VB look fabulous!

In this pic however it seems her shoes are too big, with a gap at the heel. I often find myself having to compromise on shoe size, my feet are a size 38 in length but for the extra width I need a 38.5 and sometimes a 39. Generally with boots I just get the larger size as you can’t notice but with court’s it is not possible as your foot slips in and out all the time. Luckily Mr Louboutin understands me and his 38.5 fits me perfectly, I hate brands who don’t do half sizes and I wish more would do extra widths. I know Clarks and Duo shoes do but really they aren’t my cup of tea.

As demonstrated so kindly by VB here you can see that many ballet flats don’t actually support your foot well. They are comfy, I love my pair to pieces but I find my foot arch can get a bit achy if I wear them all the time. In winter my riding boots are the flat of choice as they have a small chunky heel so the foot is supported. This does leave me with bit of a summer shoe issue so I will have to try and find a stylish alternative – I guess with UK weather the is no rush!

I used to hate wearing socks in bed but my feet freeze now. I don’t care what that there is no physical proof that cold weather makes arthritis worst, but scientist still don’t know the exact route drugs are Incorporated into the hair – doesn’t matter it still happens! Wearing big socks seems to help the pain a bit, the more ridiculous looking the better!

Next post will be a short post, promise!!
Again HUGE THANK YOU TO YOU ALL!!!!
Pearl

A Very Hard Post To Have To Write

I never wanted to write this post, in fact when I started blogging I never intended to have my photo’s in it or write about my life. It was to be an anonymous blog of sorts, of course most bloggers will realise that to write a blog does include you, it has to otherwise it seems vacant. Anyway as you all know the blog is very much an extension of me and my personality so it seems odd to try and hide part of that, but there are things I like to keep private. When one of the private things started to impact upon the fashion however it got a bit tricky, and I have found it hard to write a lot of the posts from the last 3 months.
So I am going to explain a few things in this post to get it out of the way, like ripping of a plaster (band-aid for my USA’ers). I have rheumatoid arthritis (RA).
It is an incurable disease which causes inflammation of the joints. Yes, it does majorly occur in older people but there is a large percentage of younger people with it. There are many different strains of arthritis and it effects people in different ways. I have a fairly bad case, it differs day to day but every day is affected in some way. From slightly achy hands on a good day to complete exhaustion (no being able to get out of bed), extreme pain in my hands (so I cannot even move a finger), same pain in my knees, feet, spine, elbows, wrists, ribs. My hands are always cold, I can spend a whole day or week feeling nauseous. I can’t tell you the last time I managed to sleep right through the night. It is hard to sleep with your hands, and sometimes your elbow perfectly straight – try it when your laying in bed just for a minute, it is pretty much impossible.
You know your having a bad day when your laying in bed, one eye open, trying to think of ways to hide your hair so you don’t have to go through the trauma of having a shower – it involves moving your hands and arms more than you would think! Then it is even harder to consign yourself to the fact that if you aren’t well enough to have a shower you really shouldn’t be leaving the house. Some days I think are a good day can quickly turn into a bad day, walking half way to the shop and have to come back because your already exhausted, having to go and hide in a changing room so you can have a rest – Harvey Nichols is best you could drop dead in there and nobody would notice.
I don’t like to tell people about this because I don’t want any sympathy, there are people a lot worse off than me.
Whilst waiting for X-rays in an empty room with your phone and a mirror, bloggers take a photo. I had to laugh at myself for doing this without even thinking. I think the gown could be Prada SS11.
So how is this affecting the blog?
  • Sometimes I don’t have the energy to get dressed, so unless you want to see my range of PJ’s there aren’t as many outfit posts.
  • Some days I can’t bare to put proper shoes on my feet hurt so much, again unless you want to see my Ugg boots a lot, not great outfits posts.
  • I hate wearing flats, but just looking at a pair of my beloved sky-scrapers and how my knees feel somedays, can make me cry.
  • I have put on weight, not that much but going from an 8/10 to a 12 is enough to make sure half my clothes are too tight, thus limiting the outfit selection – taking so many tables makes me feel either totally nauseous so I can’t eat, or insanely hungry so I eat tubs of hummus and wheat free crackers – more calories than you would think, especially when you are in too much pain to exercise.
  • I haven’t been able to wear any rings for a while due to swollen fingers.
  • I can’t wear nail polish as my nails need to be assed – one strain of arthritis can affect the nails.
  • When your in pain it makes you snappy, sometimes I have to leave a post a day or so until I can rewrite it without sounding like a serial killer.
  • My hands can hurt so much I can’t type, hence drop in my replying to emails and visiting your blogs.

I took this photo trying to devise a way to do more outfit post without going outside. Of course for walking the dog etc I wear this kind of thing all the time, I never expected to wear it to go out for lunch but it was either Uggs and be able to walk or don’t go at all. Luckily in Manchester Uggs and trackies are actually considered trendy by most of our youth, all I needed to do was swap the Chanel for a Pauls Boutique or LV Speedy bag and I would be set!

I also had to ditch my beloved Miu Miu bag as I just can’t carry it anymore, shoulder bags only from now on – I did get the Pierre Hardy to make up for it though.

  • I also have to wear special gloves which make me look like a hobo, sometime I layer over them with other gloves, sometimes I forget to take them off for outfit posts like the pic over on Wendy B’s blog.

Anyway that is about that, I have lost a few followers as I know I get more hits for outfit posts but I think that I am writing some interesting post in exchange. I wasn’t sure if to put this post up but there are lots of great blogs by RA suffers which have helped me it is nice to know your not alone. I was also inspired after readings Vix’s post on her hip operation, and the lovely Mrs Fab, thank you ladies.
Pearl