Always Look on the Bright Side of Life

When life deals you a bit of a shitty hand, you have a few choices

1. Fold, throw your lot in and hope for better luck next time, this will only really work to your benefit if you believe in reincarnation
2. Check, stick the game out a little longer, hope that the cards on the table brighten things up for you
3. Raise the stakes, slap on your best poker face and stare the others down

When that shitty hand is living with a chronic illness it pretty much translates to…. wait to die, wait for medical advances or face it head on.

Well today I’m gonna play my poker face, though I must confess I can’t do poker faces in actual card games. When I was younger I used to be sent out into the hallway when playing Cluedo because if I was in the same room, no matter how hard I tried I either accidentally showed my cards or gave up the information on them for free. I’m just as bad playing Uno today, don’t get me started on Texas Hold ‘Em.

I’m going to give Lipodystrophy a big middle finger by sharing what I love about it.

• I can use it to shut people up or get them to talk to me depending on my mood. It’s a whole bunch of information to give someone when you have a medical history that reads like a novel. You can read out hat novel to them either like a love story, throw in characters and anecdotes, keep them guessing to the very end, make your life a page turner…. or you can turn it into Stephen Hawking’s “A Brief History of Time”, an overload of information that will melt their face off like the Arc of of the Covenant.
• If the train or bus is full I can take full advantage of my permanent appearance of pregnancy. I throw in an arch of the back, distend my tummy a little extra and a mummy waddle for good measure and 9 times out of 10 I’m offered a seat. If you like story telling then this also has the hidden of advantage of getting to make up a back story including due date and fake baby’s sex when some nosey old bat asks you about the exaggerated/non-existent bump.
• My legs are magnificent. Barely an ounce of fat and I get that professional dancer look with bugger all effort. It drives my dad’s girlfriend, who runs most days and is a dedicated gym bunny, completely bonkers. Not fair is it? Ha. They’re not just for show either, they’re fast, I used to compete in track events and do well and reigned as shot putt county champ with the assistance of nearly as muscular arms.
• I AM just big boned! Lipodystrophy sufferers tend to have a higher bone density than average. The only bone I’ve ever broken is a toe and that took one hell of a whack. I’m also less likely to suffer osteoporosis in older age becuase of my dense bones, I might be horribly arthritic but at least I’ll have solid bones between my sore joints.
• It’s given me some cojones (balls of steel!) (not literally) Years of dealing with difficult doctors and a temperamental illness means that I’ve learned quicker than many others how to just cut to the chase, through all the crap. It may be that I feel like I’ve got nothing to lose most the time, becuase my experiences have shown me that most the time, there really IS nothing to lose.
• It’s got me writing. When I was a child I used to tell my family I wanted to be an “arthur”, I meant author. Life swept me away and that became more and more of a distant dream. But since starting this blog it’s a dream re-realised. It’s given me something to write about, a voice and style have come through that I didn’t know I had.

Those are all that I can think of for now. I’m sure there are other benefits I can’t think of right now. Why not put yours in the comments?

Acanthosis Nightmare

Acanthosis Nigricans is defined on the US National Library of Medicine as “a skin disorder in which there is darker, thick, velvety skin in body folds and creases”. It is defined by me as the bane of my teenage life.It happens in those with lipodystrophy because of excess insulin, severe insulin resistance means the body pumps out more of it and the unused insulin in the system ‘pools’ in certain areas. Some of those areas are in places with skin folds, under the arms, the groin, and the insulin hyperstimulates the skin cells and the cells that produce pigment so there’s an overgrowth of skin and hyperpigmentation.

For me, this charming effect of Lipodystrophy appears on my neck, under my arms, in the crook of my elbows and my groin. It began to appear when I was about 12 or 13 from what I remember, when the rest of puberty began kicking in. Out of the sheer embarrassment of having it, I spent many hot summer days confined to polo necks and long sleeves despite the fact I easily overheated. I wore polo neck t shirts too big for me to cover my figure and my darkened skin while my friends started pushing the boundaries of their parents rules with ever skimpier tops and shorter skirts. I distinctly remember one hot day when I tried to fit in and wear a green boob tube against my mum’s advice and one girl caught sight of my under arms and pretty much spat the words “eurgh, don’t you wash or something?!” as loud as she could and having gotten the attention of the rest of the group tried to get me to raise my arms up, and when she realised there was fat chance of me doing that, she tried to grab my arm and raise it. Bitch. It was years before I wore anything even remotely revealing after that.

I simply didn’t know what it was, but at that age I didn’t have the sense to think it could be medical. I hid it, blamed myself because in my teenage head it must have been something I did wrong. My mum fretted about it, doubted that I was washing properly despite my endless scrubbing. She would kill me for telling you this story but, sorry mum, in the interest of telling my account I must… It was going to be somebody’s birthday disco and I had a new sleeveless dress for it that I was going to wear and my mum only wanting me to look my best and not get teased wanted to try and “sort out” my skin. First she scrubbed with a flannel and soap until the skin was red because she still wasn’t convinced that I was washing. Then came the metal scouring pad…. and Cif bleach cream. Spots of blood came before my stubborn as a mule determined mum gave in with a big sigh and “at least it’s a bit clearer”. It did look clearer, largely because you can’t have a skin disorder without the skin there.

From that night on, my mum was convinced that I must be reacting to something, probably all the metals in antiperspirants. Washing powders were changed and I tried every deodorant and antiperspirant on the market. Nothing helped, even when I switched to fancy pants natural deodorant. That was sustained for a only a short while to give it a fair chance but I was a typical teenager…. sweaty. I still point blank refused to see a doctor about it though, that to me would have been way too embarrassing.

There are other instances relating to my ancanthosis nigricans that have left me wanting the ground to swallow me whole. One time at work (in a burger place, Wimpy (yes….they still exist Brits, and yes, I dressed as Mr Wimpy)) I was wearing my short sleeved baggy work shirt and a colleague must have seen up my sleeve as I raised my arm as he exclaimed that I didn’t shave under my arms and laughed. It wasn’t until I nearly tore him a new one that he let the matter go and stopped giggling.
During my first…ahem… ‘female health related encounter with a very cold duck beak like apparatus’ the nurse thought it was nasty bruising that I may have gotten from horse riding. That would be impressive… I think I would have to be riding bareback on a buckaroo-ing dinosaur to get that kind of effect though. Those are just a couple of stories that I can recall, there are other that are pretty similar.
When I started becoming sexually active I constantly worried about being judged, not so much about my body shape, but my darkened areas of skin. I avoided certain ‘activities ‘ that not many women would sacrifice, simply for fear of humiliation. If there was the option, it was lights out, legs crossed any time they didn’t need to be otherwise. My husband has since kindly informed me that when were first going out he didn’t really notice, as men don’t really look at women the same way they look at themselves.

My family moved towns when I finished high school. At this point I was 16 and decided to take the move as an oppotunity to change my image a bit. I had people call me Kat, as opposed to the nickname Moley I was known by before. I stopped being such a tomboy, started going out more and started noticing men more, and they started to notice me. It was this change that finally convinced me to see a doctor to see if I could actually go out and dance without worrying about lifting my arms too high and getting pointed at. I was negatively tested for diabetes at first and so referred to a dermatologist. He took one look and re-referred me onto an endocrinologist. Tests revealed I had insulin resistance which remained monitored and turned into diabetes which was treated in hospital at university as I was an unusual case. I was then invited to join a study. I didn’t pay much attention to it really, I just signed the form that said I was happy for other doctors to see blood tests and my medical records. It wasn’t until a couple years after graduation that I finally heard directly from Addenbrooke’s. That I finally had a diagnosis linking most my health conditions.

Since my diagnosis and learning that my embarrassing skin condition was simply down to that I’ve become much more relaxed about my skin. I’ll wear sleeveless tops without keeping my arms to my side as if they’re glued there. My attitude has been helped along largely by the fact that treatment for the Lipodystrophy has at least partly improved my skin, for a while under my arms were a dark brown and my neck was brown at the sides. Now under my arms is much lighter and smoother, my neck only shows when I’m carrying extra weight i.e. after Christmas or I’ve been particularly careless with my diet. I’m hoping that with leptin treatment it will only get better. I still have my hang ups though, I won’t wear swim suits or bikini briefs, it has to be swim hot-pants or board-shorts. I still groan and grumble if it shows up in photos. I still can’t watch Dove deodorant adverts with those smug women swinging their arms around carefree without getting the violent urge to punch them. I mean, come ON!! This is the company that bangs on about how they celebrate ‘real’ women and then have some undeniably gorgeous skinny couple on there and the guy finds this woman’s armpits so attractive that he kisses them?! Give me a break!

Despite all my negative feelings towards acathosis nigricans, without it, I may not even be writing this blog, I still may not know of the condition, of Lipodystrophy and my having it. So in a bizarre way I am thankful for it. I’m certainly not complaining that as my health improves it’s disappearing. If it ever disappears completely, look out for me in the deodorant adverts or at least on the dance floor dancing with my arms up in the air, because I really will be dancing like I just don’t care.

The L Word

No, not love, you soppy bugger. Nor lesbian (perv!)

When you have Lipodystrophy, the L word in life becomes leptin (at least it did for me).

When I first heard about my diagnosis of Lipodystrophy I also heard about leptin. Leptin is a hormone that plays a major part in metabolic control, it’s made by fat cells, I don’t have enough fat cells as the Lipodystrophy has wasted them away, therefore, not enough leptin. Partly becuase I didn’t really understand it’s role and largely becuase I was still slightly sedated from a wisdom tooth removal when I was first told about leptin I was rather indifferent to it. As far as I was concerned it was something that some people were giving a whirl for treating LD. But… as I learnt more and more about it from friends receiving the treatment and studies I read the more it became the 8th wonder of the world to me. As my health deteriorated and my prescription list grew I became borderline single minded about leptin being my treatment path. I was like Golum in Lord of the Rings, the leptin was my precious. For a little while as my former consultant retired and a switched doctors things became a bit up in the air as they do; there was the transition period where all the things I’d discussed with my old consultant seemed to become history as my new consultant wanted to tackle things his own way and learn about me before taking any decisive action with a treatment plan. As frustrating as it was I just let things bump along very slowly, that was until the hell of 2010. I had several hospital admission emergencies, with Bells Palsy (the steroids treating that enraging all the other conditions) , pancreatitis, bad drug reactions and my GP at one point thinking I was developing ketoacidosis. I still shudder when I think of the arterial blood sample being taken to check my blood wasn’t turning acidic, ouch doesn’t cover it. From then on I was a woman obsessed.

I became a pain in the backside for Addenbrooke’s, the only way to get leptin is through them. After much assuring that I wasn’t planning to get a bun in the oven right after my wedding in May and that I was fine with needles I finally got an OK to start applying to Amylin (the pharmaceutical company that make leptin) for treatment. Unfortunately my consultant in Bristol was needed to arrange a newer blood test for my leptin levels as it had to be spun and frozen straight away. Getting that arranged was a kurfuffel to say the least. As Amylin are the sole manufacturer of Leptin and it’s not a licensed drug, the application process can be lengthy which can be frustrating but I knew this going in, but months to just arrange a blood test that in the end took 2 minutes?! That pissed me off. ‘Scuse my French.
Once the blood was finally sorted, the waiting began. If anyone is reading this and are considering applying, please note that you will need patience by the bucket load. I didn’t have it, the team at Addenbrooke’s did though dealing with many, many emails from me chasing up.

Then… in October this year, I got the email  saying it was coming and I swear it was more exciting than being proposed to (Sorry Steve). Going up to get it  a month later and learn how to inject it was like Christmas, I counted down the sleeps left and everything, although I didn’t manage the last sleep as I was too excited. I can’t give enough credit to the team at Addenbrooke’s, the polar opposite of the kind of doctor you too may encounter all too often (like I have), the kind that listen for a couple key words and filter the rest becuase they don’t think they need to know it. After all, they MUST know better than you right? I felt important there, valued and relaxed.
One thing that endlessly amused me in my injecting lesson was this nifty little panda gadget they had, a cute stress ball-esque panda shaped toy designed for jabbing with needles. I felt slightly guilty about poking something so innocent and cute with a needle, but if I was going to cock up my first times playing with needles then I’d rather the panda than me!

Leaving the clinic with two hefty bags of syringes, leptin and all the stuff I needed to take it I felt like one of those secure collection van drivers; the guys with helmets carrying round big cases of cash chained to them. To the outside world I must have looked bug eyed and paranoid. After months of waiting my cargo gave me the same feeling you get when carrying more cash than you’re comfortable with. The logical side of your brain is trying to tell you that nobody else knows what you have, to clam down becuase the paranoia is only going to draw attention.The batsh*t crazy side of my brain and every other fibre of my being went into some bizarre pseudo secret spy mode, shifty looks to scope out crowds, clinging to the bags so tight that my knuckles ached. That was just in the hospital grounds… the London Underground freaks me out enough as it is, that day having to pay through during evening rush hour nearly killed me. There was a small part of me actually expecting all that tension to result in me passing a diamond.

But I did it, I got it home safely, got it tucked into the fridge after a little overdue clear-out. The feeling of fear that a secret society of pharmaceutical seeking ninjas is going to come to my house and take it away has faded.

So far it’s going well, got used to injecting myself quickly. As for the effects, I’ll do I separate post on that when I’m up to full dose. I’m certainly not disappointed. Now I have TWO L-words, Love and Leptin. (And no, I’m not aiming to get the third one….)

HULK SMASH!!!!

The Incredible Hulk has never been one of my favourite comic book heroes but I can certainly sympathise with him when he says “Don’t make me angry, you won’t like me when I’m angry”. He may fly into fits of rage powered by a freak nuclear accident, more than double in size and rip the military to shreds, hell, he even turns green but he should think himself lucky, he doesn’t have to deal with PMS. Lucky bastard.

For at least one day every month I completely lose my shit. I become irrationally angry at everything, I shout at the TV if I disagree with something, the latest advert to incite my rage is the new ones for always sanitary pads, the ones that have a new ‘more beautiful’ design….. on the pad….seriously. If I want art, I will go and look at the Sistine Chapel, when it comes to my ‘feminine hygiene’ products I don’t really care whether I’ve got a Michelangelo masterpiece in my pants. That poor designer of these new pads, his art ruined over and over, just imagine how Da Vinci would feel if the Mona Lisa suffered the same fate as the pads. I find it annoying enough that pads make it feel like I’m smuggling a surfboard around in my underwear, let alone the adverts making them seem like something to celebrate, don’t even get me started on those Tampax ‘mother nature’ adverts….
Back to the anger, I throw magazines against walls, I throw tantrums that no supernanny would be able to calm, and my tongue is venomous and spiteful. Then there’s the other end of the spectrum, often experienced after the angry bit, the inconsolable mess of a woman. God forbid someone comes near me with a Disney DVD, I’ll run the local shops out of Kleenex. All in all I am not good company.

I’m pretty confident that my hormone levels directly correlate with the amount I say the F word. So if you’re around me and I start sounding like a sailor who needs their mouth washed out with soap, just run, duck and cover will be as much use as it is in nuclear meltdowns. It also directly correlates with how mean I am to my poor husband Steve. I will spoil for fights, call him mean things, lock him out of the house because I’m peeved that he’s still smoking, get all up in his face, yell, pinch and then be overwhelmed with guilt and cry at him so he ends up comforting me!

I’ve tried Evening Primrose Oil, various pills and contraceptive options but with my temperamental endocrine system none of it works for long, last thing I tried was the implant and I had a year long period! I was Lil-lets best customer. I’m already on a fairly hefty dose of antidepressant so that extreme option is off the table too. So it seems I’m stuck this way for now. Plus there’s the fact that you can’t just turn to the stereotypical litre of ice cream or pound of chocolate, because that’s sugar and fat and that’ll just push up blood glucose and triglyceride levels and make it worse but then I can’t really do anything about this horrible helpless feeling and AAAAAAAARRRRRRRRGGGGGGHHHHHHHH HULK SMASH!!!!

In addition to feeling like a complete nutter, the actual event is never fun. The pain is mind numbing, it’s like there’s an invisible world class boxing pixie following me round all day to jab me in the gut at regular intervals. Even with the ‘feminine hygiene’ products designed for maximum absorbency I regularly recreate that scene from The Godfather with the horses head (minus any equine body parts). I’m an atheist but if I ever find out Genesis was true then I will time travel back to give Eve the biggest bitch slap you could imagine, and I’ll wait until it’s that time of the month to do it as well so she can feel my wrath as well as God’s.

The theory behind why PMS is so amplified in sufferers of partial lipodystrophy is linked to the common secondary condition of Poly-cystic Ovary Syndrome (PCOS) that so often goes hand in hand with lipodystrophy. The severe insulin resistance experienced by many LD sufferers can lead to excess insulin pooling in certain areas, one of these is the ovaries, causing over stimulation and the formation of multiple cysts which in turn means that excess sex hormones are produced. It’s the change in levels of sex hormones during certain parts of the menstrual cycle that causes mood swings and chocolate cravings, the more hormones there are to build up and disappear the bigger the swing. What fun this LD lark is eh!?

With all this in mind please take this moment to think about all the poor husbands and partners of female LD sufferers, your £2/month can help get him out of the house away from the bunny boilers and into the civilised world of pubs. Or you can just give it to me and I’ll go buy some chocolate….

Friendship Therapy

My husband got me addicted to The West Wing last year, fantastic well written show, if you’ve never seen it then give it a whirl. One of my favourite moments from the show is in the episode “Noel” in season 2 when Leo tells Josh, who is just diagnosed as having PTSD, the following story….

“This guy’s walking down the street when he falls in a hole. The walls are so steep he can’t get out.
“A doctor passes by and the guy shouts up, ‘Hey you. Can you help me out?’ The doctor writes a prescription, throws it down in the hole and moves on.
“Then a priest comes along and the guy shouts up, ‘Father, I’m down in this hole can you help me out?’ The priest writes out a prayer, throws it down in the hole and moves on
“Then a friend walks by, ‘Hey, Joe, it’s me can you help me out?’ And the friend jumps in the hole. Our guy says, ‘Are you stupid? Now we’re both down here.’ The friend says, ‘Yeah, but I’ve been down here before and I know the way out.'”

It’s just something I wanted to share as it pretty well illustrates my feeling on the need for friendship through any chronic or difficult condition. Whether it be Lipodystrophy, cancer, depression or anything else, shared experience is invaluable. In my case, discovering the forums on Lipodystrophy.co.uk (set up by the lovely Zoe) was life changing. I discovered I wasn’t the only one, I receive friendship, warmth and invaluable advice there (It was there I discovered the ‘Chillow) and when I can I pay it back. This is one of my reasons for starting this blog. You are not alone, whether you suffer this condition or not, there will always be people who have been down the hole ready to offer friendship. And it’s not just those who’ve been there and done that who are invaluable, there’s also the friends who’d jump down the hole with you so you can work your way out of it together.

Diet is a Dirty Word

Am I the only one who hates the word ‘diet’ for what it has become with a passion!? Twisted and used out of context so much by the media and people trying to sell me things that the average person no longer knows it’s true definition. EVERYONE IS ON A DIET! And I don’t mean that everyone is on a calorie restricted food intake. Don’t even get me started on the word calorie….

Alarmingly the ‘Diet’ industry in the UK is worth over £2bn a YEAR. I’d be happy to bet them (being the people who make up this industry) double or nothing that most of that is a long term waste of money. And even if they are working short term or provide a minority of people with a kick start to a healthier long term eating and exercise plan, they are turning the average office lunch time into one big pissing contest and it’s driving me crazy!!!I can’t be the only person sat there hoping little-miss-oh-so-disciplined-on-her-diet-and-is-incapable-of-speaking-about-anything-but-that chokes on her overpriced shake. You’re going to a spinning class fuelled by two lettuce leaves? Well then don’t bitch to me when you’re suffering after I told you that it’s a bloody stupid idea.

Why the rant about diets you may ask, what has it got to do with lipodystrophy? Everything. The number one line in treatment and management of lipodystrophy is a low fat diet. The less fat you put in your mouth, the less the body has to jumble through to process and digest and considering that a person with lipodystrophy is massively inefficient at the latter part the less of that it has to do the better. I have this message drilled into me often and consistently. It is a HUGE part of my life.

Simple enough right? Just put down the pizza. I wish. Let me go all L’Oreal a second… Here Comes the Science Bit!! As I’ve pointed out in previous posts, Lipodystrophy leads to a loss of fatty tissue either all over or in selected parts, this means that the body has less fat cells. Leptin is a hormone that is produced by fat cells. Therefore, less cells, less of this hormone. Part of this hormone’s job is to tell the brain that there’s enough fat in the body and to regulate appetite in turn. Less of the hormone means that the appetite isn’t as well regulated, in other words I’m hungry alllll the time, not always ravenous but I feel sick before I feel full, I don’t know what “full” is like. Of course this science isn’t perfect because otherwise there would be no overweight people, the hormones would kick in and make people stop eating before it got to that, but that’s a whole other blog!!

The average reaction of people to how much food I can put away is a mix of wonder and horror. Before I learnt about Lipodystrophy and began treatment for it, owners of all you can eat establishments used to quake in fear. I made Homer Simpson look like an amateur. My brother visited me in Plymouth and at Pizza Hut we put away a meal designed for 4+ people, I ate more than him, and his nickname at work due to a certain leaving do buffet incident is “Pizza Dave”. Now that I’ve started treatment for my condition and I have the advantage of knowing my body isn’t actually hungry things have improved, but only a bit. In my sixth form days I used to pile in the food and then later have a major crash as my body was so overloaded trying to digest everything it would tell my brain that being in the middle of a field out with friends was a great time and place for a nap. Luckily now I am usually overloaded with guilt before I get to that stage.

My relationship with food has never been helped by coming from a foodie family. (Though now I know it’s a genetically inherited condition, the family obsession with food makes more sense.) My late Gran’s catch phrase was “It won’t ‘urt ’em” as we had our equivalent of a fourth square meal that day on our visits to her house. I kid you not that one day my Gran proudly reported to my mum that my bother “has been a very good boy” because that day he’d eaten TWO quarter pounder burgers. I went to my cousins wedding a couple years back with my now husband and as we popped over my aunt’s house before heading onto the hotel I warned Steve of the sheer amount of food that would be on offer, he was still taken aback!

All this combined, the insatiable appetite, food being such a central part of my life, my ability to feel well depending on my diet, means that I’m already tired of the diet-talk before little-miss-diet even decides what new fad she’ll attempt now. I’m exhausted of food. If I hear Paul McKenna spout off that it’s all so simple as to only eat when you’re hungry on one more chatty telly show I will eat him. But that’s not my biggest peev. My biggest peev is the crazy ‘diets’, the nutritional equivalent of Scientology, cults designed to leech money. For the most parts they show such little regard for actual facts and provable science. Case in point is the Feast ‘diet’ where you starve all day then eat all your food within a two hour window….because ‘that’s how cavemen would’ve eaten’. WHAT!? Next you’re going to tell me that people get depressed because they are haunted by the spirits of dead aliens. Last I checked, I wasn’t a caveman. Don’t go throwing evolution at me in defence because following that logic I would shit in holes in the ground because that’s how cavemen did it, luckily society invented sanitation systems and toilets, I say roll with the punches and adapt. Plus, didn’t really do those cavemen much good, I have a pretty awful metabolism, eat all day and I’m already pretty ancient compared to your average caveman. Hopefully the inventor of this ‘diet’ will be weeded out by natural selection.

Fact is, most these diets really don’t give the human body enough credit. Detox diets massively undermine the awesome ability of a healthy liver so most people doing them are eating pretty weird and disgusting stuff with little effect. The liver can repair itself completely as long as it’s no more than two thirds damaged. As long as you’re not abusing it heavily then there’s no need to eat aloe vera stuff to cleanse it, just give it a break from things that upset it and it’ll sort itself out.

Then there’s the thyroid gland. So smart and so adaptable. Many people barely realise what it is or what it does, I find for the majority of people, their knowledge on the matter is that they “know someone who takes tablets for that”. The Thyroid Gland produces thyroxine, a hormone which regulates the metabolism. It’s output is controlled by the pituatary gland which produces TSH (Thyroid Stimulant Hormone), telling the Thyroid gland to produce more or less thyroxine depending on the body’s needs. The reason I bring it up is because it is good (when working properly) at adapting, such as when the body is receiving less food. In other words, if you’re starving yourself on some ‘diet’ for any length of time your thyroid knows about it and it adapts. It produces less Thyroxine. Your metabolism slows down to preserve the little calories you’re getting. Unfortunately it’s not quite as fast to ramp back up when you go back to your usual diet which is why so many people put the weight they lost back on and then some, their body is still in ‘sleep’ mode. Almost like a computer that’s been left idle for a while just bumbling along doing minimal work and then someone suddenly wakes it up and needs it to run a few programmes all at once straight away, that computer normally struggles and gets a little congested while it wakes back up. In a way I have an advantage here. I have no thyroid gland, born without one, they scanned me as a baby, there is absolutely zilch thyroid tissue. So I have a continuous stream of Thyroxine taken as tablets and my needs are monitored by blood tests to check I have enough. This is done by measuring TSH, which is still produced by the pituatary gland as when I was born without a thyroid gland my pituatary gland didn’t get the memo. This advantage is minimal though, hypothyroidism so often makes it difficult to lose weight. I know when I’ve missed some tablets because I bloat like a puffa fish.

All in all, my point is that providing everything is working like it should your body is smarter than the latest celebrity craze diet, no matter which money grabbing “Doctor” invents or credits it, give it some credit. Even when things aren’t working like they should be, such as with those suffering Lipodystrophy, no special article in a glossy magazine or best selling diet book is going to be better than your doctor’s or dieticians guidance (not nutritionist, nutritionist is to dietician as toothologist is to dentist, bollocks).

So stop giving your hard earned money to sadistic spongers in the advertising industry trying to prey on your insecurities. Everything in moderation, including the time spent giving a toss. Now if you’ll excuse me, I’m off to give that smug Special K woman a massive wedgie in her “strappy backless knock-out” swimsuit….

What Must Be the World’s Most Overdue Baby

From what I understand…. you need to have sex to have children (with the exceptions of immaculate conceptions and IVF) but before I’d even got to that in life, I endured the ‘joys’ of future motherhood. Gushing people asking when I was due, rumours at school and the looks from elderly nosey parkers loaded with judgement. This was never helped by having a brother 13 years my junior, If I was out with him and my mum (his mum) I could almost see the cogs furiously turning in peoples’ heads as they tried to decide… decide who to judge out of an older mother or a teen mum.

If you don’t have, or know someone with, a form of partial lipodystrophy then you may be wondering why people are jumping to the conclusion that I am with child. I’ll explain. My lipodystrophy means that I lack fatty tissue in my bum, my legs and my arms. All the fat in my body has to go somewhere, on me that’s around the middle. I figure that people see the slim arms and legs and deduce that means that I have a slender frame everywhere, it seems like a logical conclusion. It must be following that logic that seeing a weighty bulge around the belly could only mean a bun is in the oven, especially being a woman at my age.

Being asked my due date has become all too regular an occurrence for my liking and the vast majority it’s from strangers I’m chatting to trying to be friendly or people I’ve just been introduced to. Though I find it a little disheartening, it’s something I’ve gotten used to. I used to be angry and upset for days at such remarks but now I’m often able to brush it off within hours. I’m still tempted to carry around leaflets about lipodystrophy to hand out to the people who make the unfortunate mistake of asking me about my non existent baby. That way I get to educate people, I don’t have to try and balance reassuring them I don’t mind (when I kind of do) with explaining why I understand why they made the mistake and they have the closest thing there is to a note excusing them from uttering sorry alot, going red or at worst digging themselves into a bigger hole by trying to explain that “well….you look pregnant”. Yeah, thanks. And yes, people do seriously do that. I know people don’t always want to avoid the big pink elephant they perceive to be in the room, but this is like going and stomping on the poor misunderstood elephant’s feet to prove it’s there.

The latest incident was from my next door neighbours asking when I was due. Now these are people I’ve lived next to for at least a year, they have their own baby, I know that much, but in true 21st Century 20-somethings fashion, that is the full extent of my knowledge about the people who sleep within metres of me. My shape hasn’t changed much over this year. Surely I would’ve had the baby by now?! Surely I’d have a couple by now if I was as pregnant as they seem to think I am, enough to outright ask me my due date with no other reason to suspect I am with child.

I know this is something that many partial lipodystrophy sufferers have to put up with, it’s a frustration, an embarrassment because sometimes we feel like we need to hide our bodies. The worst thing I heard from a fellow sufferer was that when she was explaining to her physician that she feels embarrassed by her shape and has difficulty finding clothes to fit the shape she was told to stop being fussy and just shop the maternity ranges. That Doctor obviously has all the bedside manner, sympathy and empathy skills of a severely autisitc grim reaper.

I know it’s not going to change anytime soon. I accept that for the most part people are just curious or trying to share in what they think is a joyous time of my life, but it’s not always easy. I’m hoping that as awareness of the condition spreads, that a few people might bite their lip until they KNOW there’s a baby on the way.

In the meantime if someone on a packed train or bus gives up their seat for me because they think I need it, I’m bloody well taking it.

Nice to meet you

I’ve sat here for a good ten minutes now thinking about to even begin to start this blog…

Right now I’m thinking “Ah bollocks to it”…. except I just practically begged my husband to buy me this domain for me so I figure I’d rather bang my head on the desk and find a way to get the words out, eloquently written or not (I’m guessing ‘not’ so far), just to avoid the loud sighs, huffs and puffs of protest.

I guess a little background about me wouldn’t be the worst of starts. I’m currently 26 and living in Bristol in the South West region of England. I married my husband Steve in May this year at Monkey World in Dorset (that was awesome, we got to fee the monkeys and everything!!) I currently have no children though I am hoping to change that in the next few years. I’m originally from Dorset and my family are still there. I studied Law at the University of Plymouth and graduated in 2006. I currently work as a legal assistant in a legal services company. I’m a fairly creative person, I enjoy writing and drawing though I really don’t do it enough these days.

As for my condition, I won’t speak much about that now, I will be sharing plenty about that in future posts. I just wanted to give myself a little definition outside of my condition…

So that’s me in a nutshell, I hope you enjoy reading this blog.

Kat 🙂