shiraphant: (Default)
[personal profile] shiraphant
Well, shit, dudes. I am just not sure how well I'll cope with the progression of my lipoedema. I can't exactly do anything about it, but damn. I am not looking forward to it. Currently, my legs look like this (I am affected from waist down and on arms, but I'm only showing you my legs because you don't need to see my arse and because I couldn't find any arm-comparison photos):

Those are 24 and 25-inch calves, there, and 37-inch thighs.
You'll have to excuse the hairiness. I'm not meant to shave my legs (though I usually do if I have a medical appointment which involves my legs being on display), hair-removal creams do nothing on my PCOS hair, and buggered if I'll wax. Also, really, what difference does it make on legs like these?
The nature of lipoedema is such that even in cases without the extra complications of fibromyalgia, chronic myofascial pain, PCOS and severe insulin resistance messing things up, weight gain is literally inevitable and weight loss is literally impossible. So I know that my future lower half is going to look something like a combination of these women:

I can already recognise certain shapes and patterns of fat distribution from these women, in my own body and also that of my mother. For instance, I'm getting a pretty impressive shelf from the waist down - it really does look like two people of vastly different sizes spliced together.
My father expressed concern that I was focusing on this too much. I explained to him that I am doing no such thing. Every now and then, my body decides to gain a lot of weight in a short space of time. Typically it's something like a stone in a fortnight, or two stone in a month, and then nothing else for ages and ages. Recently I was on some drugs which caused another weight spurt and noticeably changed my shape and size, so I have been thinking about this for the last few days. I'm posting in order to express my fears openly and be able to face them without shame. I don't expect or need sympathy or "helpful" suggestions; nothing can be done for this condition except wearing (fucking expensive - I mean, hundreds of pounds per pair) compression tights to slow the expansion very slightly, and once the lymphoedema develops sufficiently, manual lymphatic drainage - if it's available. Quite apart from the way it looks and the dangers of infections which could kill me once the condition is advanced, having lipoedema fucking hurts. You know when you get out of bed, and the backs of your calves brush against the side of the bed? That really hurts me. James has to be careful when he's hugging me because sometimes it can feel like he's digging his fingers in really hard, when he's not doing anything of the sort. It will still feel bruised and sore fifteen minutes later. I can't have the cats walk across my lap without pain.

One day I'm going to be unable to walk.
One day I'm not going to be able to be intimate with my husband (I won't get into my self-esteem issues here but I am sure you can all imagine)
One day I'm going to be unable to leave my house for fear of the aggravation I'll get, but more importantly for fear of injuring myself - the slightest cut or tear or bite could be fatal. I've seen my mum nearly die, several times, as a result of an insect bite, or a tiny break in her skin through which bacteria entered and caused cellulitis which left her in intensive care. With each subsequent attack, the body's defenses weaken. She used to have a day or two of warning to get started on her antibiotics. These days she has no more than a couple of minutes. I know what to expect, and all of it scares the shit out of me. And lipoedema is just one of the many things wrong with me, and the thing about having fibro and CMP is that most warning signs for most serious conditions and illnesses are things which fibro sufferers have all the time anyway; anything major gets ignored as "just normal" until it becomes serious enough to rise above the background noise of daily symptoms, by which time it's usually become pretty dangerous.

Forgive me if it sounds like I'm whinging. I'm really not. I'm just saying, most of the time I get on with it, but every now and then I get really fucking scared, and really fucking sick of not being able to have a normal life or wear anything that's not ankle-length or, you know, just be healthy. I get really tired of doctors who don't know anything about lipoedema (because it's not in medical textbooks yet, or at least it wasn't in 2006 when I got diagnosed) telling me just to lose weight. I am especially sick of doctors telling me to lose weight even after they've read the documents I take them, or that my specialist sends them.

I will get on with it, because that's my only option, and I am extremely lucky to have James who is supportive and understanding. I just wanted to say: shit, this lipoedema business is horrible.

Date: 2008-07-11 07:14 pm (UTC)
From: [identity profile]
I'd never heard of this condition before until now. Wow, what a horrible, horrible thing to have. I just wanted to wish you lots of luck and hope in your battle with it :-(

Date: 2008-07-14 02:08 pm (UTC)
From: [identity profile]
It's a bit of a bugger, yes. Thank you, and thanks for reading it, too.

Date: 2008-07-11 07:20 pm (UTC)
From: [identity profile]
I have the utmost respect for the way you have handled all of this over the years - I have no idea how you are in private, but publicly you are so dignified.

Date: 2008-07-14 02:09 pm (UTC)
From: [identity profile]
That means a huge amount to me; I think dignity is the most important thing for me, so I am very glad you think I am dignified. Thank you.

Date: 2008-07-11 07:21 pm (UTC)
From: [identity profile]
Shira, thank you so much for sharing this. I have backed off talking about my illness 'in public' as it were, but I am beginning to think that its the only way to face up to the changes its brought and get rid of some of the shame/ignorance around it

Date: 2008-07-14 02:11 pm (UTC)
From: [identity profile]
You're very welcome. I think it's important to be open about our illnesses, because there are so many misconceptions about things involving fat and things involving invisible illness. There's no shame in having illnesses, and no shame in adapting to accommodate our new limits. It's not our job to educate every moron who wants to give us a hard time, but it's good for us to raise awareness among our friends and family if we can.

Date: 2008-07-11 07:27 pm (UTC)
From: [identity profile]
i feel so ignorant. i had no idea how bad this was.

i loves you.


Date: 2008-07-14 02:12 pm (UTC)
From: [identity profile]
No need to feel ignorant, my lovely, it's relatively rare and most people who've got it haven't heard of it! To be honest, it's not the worst of my health problems, it's just the ugliest and most obvious.
I loves you too ♥

Date: 2008-07-14 02:15 pm (UTC)

Date: 2008-07-11 07:30 pm (UTC)
From: [identity profile]
You're not whinging; you have every right to complain - there are people out there who whinge about far more trivial stuff on a near-daily basis! I think this is the first time you're written in any depth about what you're facing and how you feel about it, and I really don't blame you for being depressed and scared over the future.

I had no idea your legs looked like that; I'd seen pictures of lipoedema before, and I guess on some intellectual level I knew that that was how your body would be affected, but having always seen you in long skirts I don't think it had ever really sunk in. From the waist up you are beautiful, curvaceous and sexy; how on earth any doctor could look at you and say he thinks all you need to do is lose weight just staggers me - are they really so completely ignorant as to think such obviously disproportionate weight distribution is normal obesity? They evidently do though, as you've obviously had that response far too often.

It's completely unfair that you're having to wrestle with their ignorance whilst also having to deal day-to-day with feeling crap, ill and in pain in a way that most people couldn't imagine. I wish there were something concrete I could do to help beyond offering my sympathy and admiration for how you cope with it. Internet *hugs* seem a pathetic, insultingly trite response. :-(

Date: 2008-07-11 08:50 pm (UTC)
From: [identity profile]
You're not whinging; you have every right to complain - there are people out there who whinge about far more trivial stuff on a near-daily basis!

You took the words right out of my keyboard with that, and more or less sum it up with your closing paragraph as well.

Shira, I wish I had more than clichés and platitudes, but you are a strong, brave, beautiful woman and these qualities totally eclipse the way your legs look. What I didn't fully appreciate, however, was how much pain the lipoedema causes you. I can't believe the negligent attitude of the medical profession, has your mother experienced the same ignorance in dealing with her condition? Her symptoms are obviously a lot more advanced than yours, does she have a specialist or something that you could see? I'm sure you've thought of this already but it does seem insane that you just keep getting told to lose weight when it's so clearly out of your control.

Date: 2008-07-14 02:42 pm (UTC)
From: [identity profile]
you are a strong, brave, beautiful woman and these qualities totally eclipse the way your legs look.

Thank you - James is always telling me this sort of thing but it's easier to discount a husband's words, isn't it? It means a great deal to be hearing it from friends whose opinions can't just be dismissed with "but you have to say that, you're married to me!"

I can't believe the negligent attitude of the medical profession, has your mother experienced the same ignorance in dealing with her condition? Her symptoms are obviously a lot more advanced than yours, does she have a specialist or something that you could see?

My mum didn't get the same "you're just fat, nothing wrong with you, lose weight" quite as much after they took her into hospital when she was about ten and put her on a 300-calorie-per-day diet and observed that she lost weight everywhere except her legs. Her lipoedema was evident from earlier on than mine was, we have slightly different types and they still don't know what it is exactly. She did, like me, fall into the self-starvation trap and gave herself a stomach ulcer while she was trying to lose weight after I was born, and is still stuck in the endless cycle of trying and failing to lose weight by restricting her already not-large food intake. They tried to reduce her legs in 1988 by giving her liposuction, which was basically a disaster; it worsened her condition significantly and she was in huge pain for months. They didn't know what it was she had at the time - they thought it was lymphoedema and elephantiasis, which it's not, it's lipo-lymphoedema, which is lipoedema which has caused lymphoedema to develop in addition. I'm in the very early stages of lymphoedema as well. It's only in the past six or seven years that any research has been done into lipoedema, and I see the same specialist she does (and my uncle does, too - he has a very rare form of lymphoedema, apparently only 71 people in the world have it). They're doing a lot of genetic research and we're part of it, but there's nothing else they can do for us. The official diagnosis is extremely important and has been very helpful, but they can't do anything other than make sure we get seen by lymphoedema clinics, get custom-made compression garments, and know how to take care of our skin. My mum's attitude is less, hmm, compliant than mine. She doesn't see the point of going to a lymphoedema clinic, she won't get compression garments, and she won't try to get manual lymphatic drainage. She basically can't be bothered, and after so many years of being messed about and damaged further, I can sort of understand why.

Date: 2008-07-11 09:20 pm (UTC)
From: [identity profile]
Couldn't have put it better.

Date: 2008-07-14 02:43 pm (UTC)
From: [identity profile]
Thank you. It's important to me that people whose opinions I value don't see me as a whinger, which is why I don't mention this sort of thing very often. I'm really pleased (and relieved) by the supportive responses I've had.

Date: 2008-07-11 11:01 pm (UTC)
ashbet: (Lacrimosa 2)
From: [personal profile] ashbet
Arkady has said it best, I think -- I don't know that there's anything I can add.

But, yes, Shira -- your are strong and brave and beautiful (in heart and spirit as well as your exterior), and you're not in the least whinging when you say that you're scared of what the future holds -- it's perfectly rational to have these fears, especially when you've seen your mother struggling with the same issues.

I admire the hell out of you for not letting life knock you down, even when you've been dealt such an unfair hand. And I'm really impressed by the way that you've insisted on proper medical treatment despite dealing with utter incompetence and prejudice on the part of most medical personnel you've encountered.

*huge hugs and much love*

-- A <3

P.S. I think Photobucket has removed the latter set of photos, unfortunately :/

Date: 2008-07-14 02:51 pm (UTC)
From: [identity profile]
Arkady seems to have spoken for quite a few people :)
I know my fears are rational, I suppose I just wanted to make sure people knew that if I say something, I'm not just going "o noes, my legs are fat" - I meet most of the criteria for Body Dysmorphic Disorder except that they were written with normal people in mind; I look at myself and see a huge, hideous, misshapen body not because I am in some way delusional but because that is what is actually there.

I admire the hell out of you for not letting life knock you down, even when you've been dealt such an unfair hand.

Thank you! It really means a great deal to me that my friends actually admire me. I never expected or imagined that I would hear that from anyone. I admire you and always have, knowing how hard it is to do anything with fibro and seeing how much you deal with and how much you do.

And I'm really impressed by the way that you've insisted on proper medical treatment despite dealing with utter incompetence and prejudice on the part of most medical personnel you've encountered.

I just get more and more angry every time I have a bad experience with a doctor. If I don't insist on proper treatment, firstly I will suffer, secondly the fuckwits will get away with treating people like shit, and thirdly nobody will ever learn. I truly don't believe I have any alternative. I've got to make a fuss because nobody else will, and not everyone can.


(yes, Photobucket are apparently incapable of distinguishing between pornography and medical information. The photos are now being hosted on James' website, run on his own server)

Date: 2008-07-12 08:09 am (UTC)
From: [identity profile]
Echo arkady's comments as I couldn't have put it better.
There's nothing wrong with putting down how you feel. Expressing fear is better than bottling it up and means that we all have a better understanding and can be there for you, however you wish.

Mucho huggeroonies

Date: 2008-07-14 02:53 pm (UTC)
From: [identity profile]
Thank you my lovely. I do feel much better for having posted this and got so many supportive and understanding replies. It does make a difference to get it out sometimes and not feel ashamed or stupid for being scared.

Date: 2008-07-14 02:26 pm (UTC)
From: [identity profile]
Thank you1 I like to think I've got slightly more cause to complain than a lot of people who blether on about stuff, but then I remind myself that it's all relative. I like to try and maintain some dignity and I never want people to think "oh god, here she goes again". Nobody likes to hear anyone talking about their ailments, and I've certainly got enough of those.
but having always seen you in long skirts I don't think it had ever really sunk in.

That's my aim in wearing long skirts :) in a couple more years I won't be able to hide that something's wrong even with long skirts, but I do my best to look proportionate. I've seen how people look at my mother's legs and I've seen those looks directed towards me when I'm sitting down, for instance on the Tube, and the hem of my skirt rides up to mid-calf. I care less than I used to, thankfully, but I'd never voluntarily put my legs on show. Thank you very much for the compliments! I do my best to be presentable :)

are they really so completely ignorant as to think such obviously disproportionate weight distribution is normal obesity?

They're not just ignorant, they're arrogant and fatphobic. They don't like anything which doesn't fit into their tickybox way of practising medicine, they don't like incurable problems which don't lead to death, and they don't like fat people. They particularly don't like fat people who can't be browbeaten into losing weight, not that it stops them trying. I mean, for heaven's sake - reading a medical document which clearly states that weight loss is impossible and diet and exercise don't have any effect ought to be enough for any doctor, but several of them have been really bitchy about it and it hasn't stopped them going "Well you should try to lose weight..." as if I haven't spent the last twenty years of my life trying to do that. I'd say half the trouble I have with doctors over my lipoedema comes from their automatic blame-the-patient reaction whenever fat is involved, and the other half comes from their hatred of knowing less than the patient does and/or not being able to do anything about it.

I wish there were something concrete I could do to help beyond offering my sympathy and admiration for how you cope with it.

That on its own is a great help to me; the responses I've had to this post have helped me overcome this latest bout of terror over my future as far as my size and shape are concerned. I am also very reassured to hear that people don't see me as a weak and whining annoyance, and never imagined that I might merit admiration, so thank you.

Date: 2008-07-11 07:45 pm (UTC)
From: [identity profile]
The strength you display in dealing with this makes me love you more. But the way the medical profession treats you makes me hate them more. It isn't fair.

(and, completely inappropriately, those photos you posted look almost artistic to me, like Rubens or Botticelli)

Edited Date: 2008-07-11 07:48 pm (UTC)

Date: 2008-07-14 02:54 pm (UTC)
From: [identity profile]
You are lovely, and you know well from your own experiences what the medical profession are like. It's not fair, but that's never made much difference, has it? We just have to get on.

(I see what you mean about the photos, I think it's the light - it's sort of golden flesh on dark backgrounds like a lot of old paintings)

Date: 2008-07-11 07:55 pm (UTC)
From: [identity profile]
(Also inappropriately and I know it doesn't mean much, but when I've met you I've thought that you were stunningly beautiful).

Date: 2008-07-14 02:55 pm (UTC)
From: [identity profile]
Well, you know I think the same of you, and thank you ♥

Date: 2008-07-11 08:46 pm (UTC)
From: [identity profile]
Some medical personnel don't seem to recognise anything that wasn't on the books at the time their training ended, let alone 2006. I'm not at all surprised you've run into this attitude, but I wish you didn't have to put up with medical arrogance on top of everything else.

Date: 2008-07-14 02:57 pm (UTC)
From: [identity profile]
It's like you said the other day, sometimes we're treated as if it's our fault for needing medical attention at all. Then if you have the temerity to have an incurable or unrecognised problem, there's no chance of getting decent treatment without fighting every step of the way.

Date: 2008-07-11 09:08 pm (UTC)
taimatsu: (Default)
From: [personal profile] taimatsu
That sounds truly awful, and the unhelpfulness from medical professionals must make it much worse. Thank you for sharing this; when I met you, your condition was completely invisible to me, and to know that you're dealing with something so horrible (with such strength and courage) is a salutary reminder that people can have really serious problems which are nevertheless not on public view, and to avoid assumptions about people's health.

Date: 2008-07-14 03:09 pm (UTC)
From: [identity profile]
Thank you for understanding. I keep my legs hidden but I can at least prove that I have this if I really want to show someone, but as a sufferer of fibro and CMP I agree with you completely about invisible problems. So many people think that a problem doesn't count if it's not right in your face all the time.

Date: 2008-07-11 09:11 pm (UTC)
From: [identity profile]
it's scary, and it's horrible, and I hate that you - or anyone, but specifically you, who I adore and admire - have to live with this condition. And I'm hugely angered by a medical profession who only add to the pain and frustration inherent in the situation, when their whole *purpose* is to do no harm, and help wherever possible.

I love you, lady.

Date: 2008-07-14 03:10 pm (UTC)
From: [identity profile]
And the thing is, it's actually the least troublesome of my various medical conditions, in many ways. Which doesn't say much for my physical state, really, does it?
I think most doctors have forgotten the bit about doing no harm.
I love you, too.

Date: 2008-07-11 09:51 pm (UTC)
From: [identity profile]
Ouch. I know to a degree that sensitive, fragile, tender feeling in the soft tissue just from having RA. I still have a lump and swelling under my thigh from a knock I got last April, the legs seem especially prone to it.

I'm just saying, most of the time I get on with it, but every now and then I get really fucking scared

This is me too, mostly I just deal with not being able to walk or hold things properly or just be any sort of functional because it's life and it's here But other times I have days where I see the progression all unfolding ahead of me and how helpless and vulnerable I am and how angry I am and how scarred I am and I all comes tumbling down.

You are very lucky to have such a lovely husband, he's a treasure to be sure.

Date: 2008-07-14 03:15 pm (UTC)
From: [identity profile]
I know exactly what you mean. People accuse me of being too negative when in fact all I am doing is being realistic. I try not to think about it often or I'd just be paralysed by fear and misery, but sometimes it's unavoidable. I am indeed very, very lucky and so blessed that James is so wonderful. I couldn't manage without his love and understanding and care.

Date: 2008-07-11 11:00 pm (UTC)
From: [identity profile]
Oh my lovely. You will ALWAYS be my lovely, regardless.

[cuddles you]

Date: 2008-07-14 03:17 pm (UTC)
From: [identity profile]
You are fabulous and I know I will always have Lisa-love. *squidges you*

Date: 2008-07-11 11:50 pm (UTC)
ext_83784: Me at Wasteland, Amsterdam - April 2009 (Hug)
From: [identity profile]
It's not whinging, it's stating matter of factly what you are living with. While I was aware of lipoedema, I didn't realise it could cause so much day-to-day pain and the way it can progress.

Thank you for sharing it, you are a remarkable woman.

Date: 2008-07-14 03:26 pm (UTC)
From: [identity profile]
Thank you, I was going for matter-of-fact but was worried that it had descended into self-pitying blither. I'm glad to have made people more aware of it. It's not even particularly rare, it's just really seriously underdiagnosed because doctors just dismiss it as obesity and fob patients off with "diet and exercise will make it go away" (the professor who diagnosed me was not at all surprised to hear about my long history of what would have been called anorexia if I'd ever lost weight, and said many women with lipoedema develop eating disorders as a result of the "you're just eating too much" attitude most doctors have).

Date: 2008-07-12 02:31 am (UTC)
From: [identity profile]
I'm very sorry you have to go through this. I knew nothing about it until you posted it. You know I'm here to talk, even though lipoedema isn't something I have. You're very brave and real and I love you.

Date: 2008-07-14 03:27 pm (UTC)
From: [identity profile]
Thank you, my lovely. Lipoedema is one of those things that people just don't hear about unless they or someone close to them is diagnosed with it. I'm really pleased I've had so many positive responses.

Date: 2008-07-12 02:42 pm (UTC)
From: [identity profile]
Oh Shira, you are so brave and tough. Thank you for opening yourself so much to educate everyone, I am sure there are hundreds of people if not more who learnt about this through you, and who will help spread awareness.
I wish you so much happiness .... *smooch*

Date: 2008-07-14 03:29 pm (UTC)
From: [identity profile]
I don't really see myself as brave or tough because it's just a thing I have, you know? I am very glad I've been able to raise awareness - I figure that's the best thing to do.
Thank you *squisht*


Date: 2008-07-13 05:52 am (UTC)
From: [identity profile]
Complain away baby!!!

People don't get it. Some don't want to.

Suckage... that's what it baby.... SUCKAGE.


Date: 2008-07-14 03:30 pm (UTC)
From: [identity profile]
Is that MUTTS in your icon? :D


Date: 2008-07-14 04:29 pm (UTC)
From: [identity profile]
Yes. It is the muttzarella!

Date: 2008-07-14 03:01 pm (UTC)
From: [identity profile]

I had a loved one with elephatiasis. I remember the support tights.

Thinking of you, dear.
Edited Date: 2008-07-14 03:02 pm (UTC)

Date: 2008-07-14 03:32 pm (UTC)
From: [identity profile]
The doctors thought my mum had elephantiasis and lymphoedema for years, before they realised it was lipoedema and lymphoedema. She's still not got any of the support tights. I've got two pairs so far, oh how sexy they are. Thankfully they come in black.
Thank you, my lovely.

Date: 2008-07-20 07:12 am (UTC)
From: [identity profile]
Hello lady. You are a big doof, of course you aren't ruddy well whinging! You are the least whinging-type person I know. Also you are gorgeous and lully, and well basically what they said. Lipo for the lose, it is mean to mai lully shiras.

Date: 2008-09-15 06:44 pm (UTC)
From: [identity profile]
*hug* i didn't know about lpoedema until i reconnected with my former bf (who is now my current)... he had severe lipoedema he said for several years related to his former obesity. I don't know much about the treatments but it got so bad , he was dripping fluid by the container full he had to be sent to some cutting age center in Miami for treatment. I don't know what they did (it was probably drainage?) but he doesn't have it anymore just scars and discoloration as reminders... I can't help feeling that maybe the right doctor may know of what they are doing in other countries, or what new therapies may be on the horizon... you are very lucky to have an understanding spouse... if i hear of anything i'll let you know... i've given up on finding therapies for my conditions here as well.. sigh..


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