Sunday, December 07, 2008


I said I would start posting pictures of me again. So here is one. It is not the best picture of me, but it is an accurate picture, except I have dressed up, I am looking ‘My Best.’ But you can also see how Linda and others pick me up with such ease. I am thin. My arm warmers hide how thin my arms are as you can virtually SEE the radius and the ulna arm bones through the skin. My torso has shrunk, I am wearing a large junior miss corset from Hot topic (nice, huh!). I have gone from large to small/xtra-small in panties. I am going to have to buy new jeans again, because I may be a 6 now. I am still smiling, but I am ill, and I am thin.
This is from less than 18 months ago. I am in a wheelchair and have lost a lot of the muscle from competitive training for epee. I am wearing black to make me look ‘slim’ as I feel self conscious about being so big, having such large thighs and arm muscles. I have a slight pot I am hiding. Look at my face, my hair, my skull, my eyes, my torso, my breasts and look at the first picture. Compare the two. Doctors won't act because they don't have enough evidence, or they don't know what to do. Doctors accuse me of being lazy, of having a mental condition. I eat more in the top picture, than the second. Look at them. There is something VERY wrong.

Here I am; TAB (temporarily able bodied) at just over two years ago before I began my several month intensive training for the Nationals where I gained almost 30 pounds of muscle. I liked putting streaks in my hair then. I had a pot because I was only training 5-6 hours a week. There is the same smile with a bit of impishness in it. The post below: Multiple System Failure, is important, because it explains what is happening to me.

I did 40 postcards, and they were sent today. There is a new post up at the Postcard Project too. Cheers!


Tom P. said...

Yes, you are way too thin but you still look great. You have a wonderful smile and that just lights you up.

thea said...

Well done with the postcards :)

All of those pictures are beautiful. But I can see a change.

Maybe these pictures would be helpful to take along when seeing new and hopefully helpful staff - to show them more about what's changed...?

yanub said...

What clear change! I don't know how a doctor could see that and not be concerned. But I can't say as I'm surprised, either. Doctors can be oblivious when they take a mind to be.

On the bright side, you manage to look good in every picture. You are naturally photogenic, and very lovely, dear Beth.

Perpetual Beginner said...

Ai-yi-yi, Beth! You look like you weigh about half what you used to - if that much. Your smile still lights up the room, though.

It says something (nothing good) about the fashion model industry that you look about the right proportions now.

Raccoon said...

when you are comparing now with then, yes, it's very obvious that you're losing weight.

You notice it a lot more, because your clothes don't fit.

Of course, it could be that I'm just a typical male: unobservant...

One Sick Mother said...


I'm not going to sugarcoat anything or plaster you with platitudes. You *are* thin. A size 6 is way too small for your height.

It is hard for me to express fully how badly I feel -not only for the disease(s) you have, but also for how neglectful your medical care has been. The first cannot be helped. it is happenstance; the lightning happened to strike *you*.

But the second: the neglectful medical "care"... Well, that is voluntary -many times over- and unforgivable.

That grieves me. More than I can express here or anywhere- it grieves me. I noted it before -your wasting- that is, and I have been saddened by it. I cannot understand how so many doctors can lack the professional pride to *try* and help you.

It is simply unconscionable.


Neil said...

Yeah, OSM has it right: you are too thin now. But that may be a good thing, 'cause Lovely Linda has to lift and carry you.

Your smile still lights up rooms, I'd say. But it does show how much less of you there is. Don't stop smiling though, 'cause you're still beautiful!

You made that park bench look good, too, dear. Where was that photo taken? Cardiff?

Y'know ducks, I think these are some of the best pictures you've posted since the Hoh rainforest outings. But you mentioned Linda has lost weight too - though in her case it was deliberate. Is she will to show of for us, too?

Love and many hugs for both of you,

Elizabeth McClung said...

Tom P: Well, I figured I couldn't hide behind anime girls forever. I still am losing weight so I expect I will get thinner. Thanks for the compliment on the smile.

Thea: Yes, I was happy I got the postcards done!

The changes shocked me, For example, simply look at the NOSE - I did not know a nose could lose wieght, could get thinner, but it has!

I agree, I want to take one of when I started care with my current GP and my current picture and ask him if he sees any difference. Knowing him, he might say, "You are wearing different clothes."

Yanub: The obliviousness of doctors is legend. Or they would say, "Sorry, I just deal with X, not with the fact you are wasting."

Thanks, I do have better pictures, ones where I turn my face to look fuller, but these were both full on, almost both ears, and can compare nose size, cheek size; only in a warped world would I be considered obese in the second photo (I was technically 20 lbs underweight due to height), yet stare at the first long enough, and I look kind of chunky in the second. Maybe that is just my anorexia body dysmorphia vision coming back.

Perpetual Beginner: See, they should advertise me, you get to eat anything you want, but you still lose wieght!

OMG! I look the right proportion now? True, I could do modelling for hot Topic now! Except I am over six feet tall - actually that probably is in my favor!

Raccoon: No, it was just the reason for posting the pics, I have hypothyroidism, I sit in a wheelchair or in a chair or in a bed, I eat the same or more than Linda and I look like that. Errrr...what is wrong with this picture?

Yes, I get used to it day by day but using a picture for last year I was sort of surprised. I wanted to use one from 5 months ago as see if the change was that quick, when did it start? As I actually 'bulked up' a bit doing boxing. Which is why I want to do it again, except one of my fingers I jammed in boxing isn't healed yet - and I don't know when I took boxing but Cheryl says it is a VERY long time.

One Sick Mother: Maybe I should be One Sick Author, haha! Yeah, I am, and that I have been trying to get a occupational nurse to see me since July, and a dietician to come and help for the same amount of time just shows what isn't going on. Sadly. I have no care plan or care because I have no occupational nurse.

I am sorry that what is happeneing to me makes you unhappy. I am not asking you to be joyful, but I find your neuropathy makes me sad, so I get it, it is just for me every day, so I can't see it, and I can't remember it. So if they won't care, I can't, because I actually have to deal with the disease, not having the energy or even mental capacity to deal with VIHA management or six specialists, or GP's who wait and watch.

Even when I go to Local "walk-in" clinics, I am, regardless of the amount of people, served last. Because I LOOK sick, I LOOK complicated, I LOOK like it might take more than the 10 minutes in which they are paid for by the government. So I am put in a room and patient after patient goes past while I wait for an hour. And the Doctor walks past, looks and then goes on to the other patient, again, and again, sometimes until closing. What can I do, officially complain and then not be allowed to visit the walk in near me?

I am assumed to be an addict because over 25 doctors have refused to take me on and five had dropped me as a patient. If I complain, I can't see that doctor again. So I am at the only place that will take me, a clinic for homeless drug addicts who either have untreated mental problems or street work. Try getting some pain meds two days early even IF the doctor has written the script from the pharmacy, they won't do it - "You've had your meds and you'll have to wait" they tell linda, assuming She is me and thus a junkie taking pain meds instead of heroin or something else. Sorry. Seems there was some sort of memory trigger there.

Victor Kellar said...

Its a pretty dramatic change. No doubt about it. But your lovely smile may not be helping you; the medical profession may need you more pitiful and worshipping at their alter of God-likeness ...

yeh, I've been in a real cynical mood lately. But your smile helps, even if I the rest of the picture is disturbing

cheryl g said...

You are too thin and I am continuing my quest to (a) get you decent medical treatment and (b) help you keep your weight up. I am so disgusted with what passes for "care" in Victoria BC

Veralidaine said...

You are still beautiful. Too thin, yes, anorexic-looking, yes, not quite as impish as before... but you look wiser, and kinder in this latest picture than in the first. Not much of a tradeoff for constant pain and an early death, but if it was, everybody would want MSA!

Will Linda hunt me down and beat me to a pulp if I send panties (since you mentioned your size?) I found some Hello Kitty ones but didn't buy them for you because 1) I didn't know your size and 2) I was afraid Linda would turn into the tiger from a couple posts down and eat me. They probably still have some.

Have some fresh cookies (baked tonight!) and a couple other things packaged up for you and will send tomorrow, so if you can get someone to check the Washington PO box later this week, hopefully the cookies will fare better than the pumpkin bread as far as arriving in edible condition.

Drake said...

I know you had to "dress up" and I know it is not what you feel like and maybe it is because I can't see past your interior to see your exterior, but to me you still look good. Then again, I am used to looking at scrawneyness in the mirror. You have lost a boat load of weight tho, there's no doubt about that.

No, you are not deceptive what so ever and I can never see you as being so. Don't worry about it, at least not on my account.

As for me...yea...seems like my dad's getting a taste of what I've been going through. He has been diagnosed with spinal Osteoperosis. My grandma also had it and it seems very likely that it is Marfan's related.

Right now, I am not too worried about it cropping up it's head as I am getting plenty calcium supplements in. My major concern is just keeping the rubber-bands in my body from "stretching out" ;D.

P.S. Thanks for the Tat's :D I want to see if it will be permanent on my new shoulder brace ;D

P.S. Thanks for the tat's ;D

Miss Fairy Sparkle said...

Hi Elizabeth,

It's really hard with the doctor stuff - because it has a lot to do with perceptions. I made the mistake of when I got ill first of looking happy when I was in hospital.

A classic conversion symptom - not being upset enough.

So, the fact I was 19 and trying to cope with loss of health, career, etc - but still appearing calm - no good.

Now, I have a strong sense of motivation. If I collapse, I can still keep up a very cheery and bright conversation sometimes. That is because my personality, is not the bit that is ill. It has taken me time to realise, sometimes I have to let peole see me down and distressed and not with my best on, and then they get it. Because ill people do not have cracking smiles.

My mum was dying, and she looked great. I think we both somehow have something in us that made us look weller than we are. I know I don't look as ill as I feel. And I don't appreciate just how much living with a condition for years means you learn lots of coping stuff that means you can hide pain, and nobody will see it.

I'm not trying to be discouraging - but photos don't swing doctors easily. If the notes say, oh, wait a minute, this could be conversion, then that is what they see. People see what their minds tell them to see.

It's stupid, and it should not be that way. You, Linda and Cheryl are witness enough to say - you are really not well.

Drake said...

Hey, I just thought of something...

How's about a couple of photos of Linda? ;D

rachelcreative said...

Great smile my friend.

It's obvious those doctors don't want to see what's really going on. Shame on them.

Abi said...

I don't think that you look all that thin until I look at the second photo. I think that society has warped my perceptions of what women should look like. Working in a place full of young people, many of whom are very thin, probably does not help this. I have this fantasy in which I weirdly become that thin for no reason and then have to eat lots of chocolate in order to become an appropriate weight again. I wish that you could fulfil this fantasy on my behalf; I would send chocolate... (If you need chocolate let me know - I just bought about 30 bars of it.)

In the second photo you look great! In fact, you look great in all three photos. It strikes me how young you look in the first photo - far younger than you actually were. Now, alas, you only look a little younger than you are (to me, anyway; I hear that you are considered to look an awful lot younger by some people).

It also strikes me that I may have just put my foot into my mouth so firmly and repeatedly that the bruising to my throat may take a while to fade. If so, sorry about that.

Dawn Allenbach said...

You're beautiful, so there. But I understand the frustration of not being able to control your own body. I have the opposite problem as you. No matter how well I eat, I continue to gain weight. It may be something going on other than gaining fat because my abdominal region is huge and hard as a rock. I'll ask my doc this afternoon.

Have a milk shake on a regular basis. It may help you keep your weight on, but at the very least it'll be a yumm treat you can look forward to.

Diane J Standiford said...

What matters is how you feel not how you look; but the obtuseness of doctors continues to amaze me. have you considered Bastyre here in Seattle? I ache for you.

Kate J said...

I just read your post from a couple of days ago, about your visit from the police. I bet those officers were really embarrassed... and hopefully angry too, at the waste of their time. How could anyone be so vindictive? I told a few people and none of them could believe it.
And now to see this photo of you looking so very thin. I do hope that life stops chucking such s**t at you and Linda, I really do.
Love& peace

FridaWrites said...

The evidence looks pretty clear to me, though you're beautiful in all the pictures.

Lene Andersen said...

Just looked at tehse again and sweetie, you're so thin. Doctors are willfully blind, apparently - I don't know why my cat can get B-12 shots and they won't treat your damn anemia. For one. Don't want to take up a lot of space with what else is wrong with the bastards.

Your soul is still the same. It's obvious - you shine through, no matter what the exterior looks like.

Neil said...

Hmm, now there's a great batch of unconditional love: you're too skinny, but you've got a great smile and we love you.

Ah, how to tell someone the truth without hurting feelings? It's hard, very hard sometimes.

But we do love you. And Linda.


Maggie said...

Hi-I'm happy to see you smile. It's been too long. I agree with Cheryl. You are too thin and loosing weight too fast. I am currently somewhere around a size six but most would agree that I'm just a bit shorter than you at 5 feet tall. There is no way we should be wearing the same size clothes.
Maybe the chocolate shake a day is a good idea?

Elizabeth McClung said...

Yes, I look older becuase a) circulation is an important part to keeping the skin looking good - when you don't have circulation and you don't have any fat, and your skin starts to scale as in autoimmune diseases, it looks older, b) Dying actually makes the skin look pretty crap, if you want to see, "A Silverlake Life" you can see how for example, 30-40 lesions from AIDS really make a guys face look a LOT older.

Yes, when I was active and able bodied, I looked very young and now I am carried about and in tremendous pain (not very good for those developing wrinkles!), and dying. If I had known that showing pictures of me would elicit so much....evaluation, I would have stuck with spending 2-3 hours finding anime pictures becuase now I am supposed to spend 2-3 days or a week to get strong enough to get showered and dressed for more pictures.

Linda can show pictures of herself on her blog, there are plenty on here over time but actually being photogenic isn't the main part of our concern these days.

Actually I am now about 15-20 pounds BELOW what was labelled as my "critical minimum weight" which would get me a tube or something except much like a nurse to do an assessment, we can't get a nurse or manager to get the dieticians who made the "critical weight" when action needed to be taken, to come back. When I eat I eat 2000 calories a day; I eat more than Linda, some days I eat more than Cheryl. Ironically, much like people who look at those who are chunky and say, "You should eat less!" - people look at me and tell me to eat more?

I have HYPOthyroidism, which means I should be overweight; I sit in a wheelchair and a bed and a chair and I eat like a person who exercises, which means I should be overweight and yet my wheelchair cushion is going from a 18 inch to a 14.5 inch across. I don't know why I am starving to death but I do know that it will kill me eventually. And if the problem is that my 2000 calories aren't being digested or absorbed correctly, then I doubt a milkshake will do the trick. I have had a diet of entirely pizza, McDonalds, and Battered fish and fries for four days and lost three pounds. What else can I do? What do I need to do to prove to you that I am not some lazy disabled person. It is freakish, I have noted it being freakish on a monthly level and now you see. Or don't because apparently being the same weight as a full grown woman as you were at 15 is normal for people when they are 6'3.5" tall.

I am sorry I seem a little pissed but I put the photos out so people could understand better the previous post on MULTIPLE SYSTEM FAILURE - one which no one commented on after this post (oh, one exception!). Which means, a) didn't read it, just like the pictures or b) didn't know what to say. Which means I must be a pretty crap writer.

Veralidaine: small cotton ones please unless they are kids size then medium, I guess - I don't know, medium hangs off me.

Maggie, now you don't need safty pins to borrow my stuff, you actually should worry more if you can't fit into something. What will that mean? Nothing; medically it must mean nothing - except that you will break most of my ribs during a compression. Woo ha!

Elizabeth McClung said...

I never knew that part of the process was publically losing your dignity and being ashamed; I guess many would rather say, "hey it is normal to lose weight in your NOSE" and that people around them look like that - really? Really? Or to deny a disease and the person with it existing, or to tell them it doesn't matter.

It does matter. And with each comment I want to destroy those pictures because no one seems to understand that I worked like HELL, I did 10K's for fucks sake, I exercised daily, I ate and drank fluids, I did everything and there is something SERIOUSLY wrong. This isn't a "this is my life" retrospective - this is two years, just over. Same person, same skeleton; when you don't sweat, your skin doesn't get the oils it needs, when you can't raise your arms, you have a harder time moisturizing. I smile because I am weak, I am dizzy, and I am having my picture taken.

yanub said...

Beth, maybe none of us used the words you wanted us to use, but every single person has noted changes you have gone through and expressed disgust with the doctors who can't see what is plain, that you are under great distress, that your health has failed. We're also your friends, so we are still going to also tell you if there is anything good still. You manage to be lovely, even sitting as propped up and painful as you obviously are in your wheelchair. It's obvious that you were expending a great deal of energy for that shot, and that dressing up for it must also have been exhausting. Your pain comes across clearly.

Yes, it sucks what is happening to you. MSA is a terrible disorder, and it doesn't matter to me if you were in top physical shape or not to start with, or if you exercise as much as humanly possible every step of the way. I in no way think there is something you could have done to prevent what has happened, and if I thought that, you'd be well within rights to dress me down. Your doctors--well, they are culpable because they could grant you more relief instead of making your life even more difficult.

Why are you ashamed? What dignity have you lost? I'm confused here, because my estimation of you as a person hasn't been reduced. I don't know why you think you aren't getting your point across. It's rather more obvious that we who comment aren't getting our point across.

OK, I'm just exhausted. I hurt, I haven't slept, and I have to go to work. If I didn't use the right words again, what can I say except that it probably won't be the last time I say everything wrong.

cheryl g said...

I am sorry that my comment has hurt you. I am personally very angry with the medical community. My research indicates that this massive weight loss can be tied to the failure by the medical community to address the anemia, the thyroid, and to provide true pain management.

I keep saying "eat this, drink this, eat more" because I feel so damned helpless and I am grasping at anything to help. Maybe I believe that there is a magic number of milkshakes and once that is reached you will be better. I don't know. Denial is a strong thing.

I am scared. I watch you shrink before my eyes and it just hammers home that this disease is going to take you away much to soon. I love you and a world without you is going to be darker and bleaker.

Veralidaine said...

I'm sorry, Beth, I think I don't know how to explain that yes, your body tells a horror story that would make Stephen King and Edgar Allen Poe run screaming from the room, but still you have a beautiful spirit AND you look beautiful in all your pictures. Does that make what's happening to you less horrible? HELL NO.

But it's a fact-- you ARE beautiful, because you're a beautiful person, and that shows in pictures. You don't look healthy or normal. The change in your body is a horrible thing, and I wouldn't wish wasting away despite eating and eating on my worst enemy. I pick out clothes for you at the store I found with lots of HK stuff and never know-- do I get Beth a large, for her long arms? Or a small because her torso is down to skin and bones?

I never meant to hurt you, and I don't think anyone else did either. I think we all just love to see you even if it is a sad, awful thing to see that you are so thin, and everyone wanted to reassure you that even though it's obvious you're not healthy (and any doctor who denies the changes in you deserves to get MSA), you should still put pictures in your blog, because your family and friends love you and want to see you.

I'm sorry if my comment hurt you, and I'm sorry in advance for what I wrote on the note I sent with your cookies-- I wrote "Two dozen cookies to fatten you up-- yeah I know that's not gonna happen, but I can try, right?" I didn't know when I sent the package that failing to gain weight by eating was a sore spot, and I won't say anything like that again.

Neil said...

Oh, you're not a crap writer, dear. We're just bad at communicating sometimes. We're all trying to say nice things to cheer you up, and some of us may have misunderstood what you were trying to say with those photos.

And you don't have to be overweight to have am uncomfortably large belly: I've decided to eat a bit better, and a few calories less, to try to et my waist down below 40 inches. I'm 6'5, and people think I look skinny - they should've seen me at 50 pounds lighter than I am now! My 33 inch waist was a bit too small, maybe, for my height, but I worked for Purolator Courier for three years, ate ANYTHING I wanted, and kept the same waist size while gaining 35 pounds of muscle in the arms and legs.

Now it's all moved to the belly, and I can't bend over comfortably to tie my damn shoes.

I did read the following (previous) post, Beth, but I wanted to say something positive. I'm sorry if that was the wrong thing to say.

Love and hugs, always,

Lisa Moon said...

Gosh, Beth, there is something (snorts) terribly wrong with our doctors/medical system if they can't look at you and worry about your health.
In the second photo where I believe you said you look comparatively 'chunky', you also look quite slim to me there, too! Yes, muscular also, but quite slim. I would guess you had relatively little body fat, an athletic build.

I, too, have hypothyroidism, which was found after I went to the doctor wondering why I was suddenly gaining back the 50-odd pounds I'd just finally lost, having gained it while pregnant with my son (who was by then about 4.5 years old). My doc at the time said 'could be thyroid, but unlikely for woman in early 20s'. She was very wrong.
And yes, I've struggled to lose that weight since and now, having developed this excruciating nerve disorder, leaving me unable to walk or stand very much, it will be pretty hard to get enough exercise to lose weight. With such a low thyroid, it's a struggle like most people will have to lose weight, for use just to not GAIN weight.
The fact that you have lost so much body weight, with a low thyroid, I would think would set off 'alarms' in and of itself.
Also, hypothyroidism causes hairloss (I have an almost bald-patch on the front of my head. NOT fun to deal with, then my eyelashes, formerly thick and curly, have dwindled to perhaps half of what they were, are more straight than rounded...), causes dry, flaking skin, depression and more.

I'm mentioning these things in agreement with your statement that you 'should' be overweight, since you're a full-time chair-user, who has been eating a sufficient amount of calories to do so.

It's very easy for me to see the loss of the natural layer of, well, body fat, which makes women tend toward a softer appearance, in your face as well as your clavicle, arms, etc.

As others have said, you still manage to look quite lovely, but I know all too well that appearances can be VERY deceiving in that area.

And I've found that in the nearly 3 years I've suffered with this intense pain, I look to have aged around 10 - and my very young-looking face has been something people have commented on throughout my 20s and into my 30s (a while ago I met a university student who was shocked to hear I had a teenaged son; she thought I was her age - 20! Even with my prematurely grey hair!).

Now, I see the lines of chronic fatigue and pain being etched in my face, the bags under the eyes which just get bigger, the haunted look to the eyes - all of which I can now pick out in others who live with this type of pain.

I guess I'm trying here (hopefully not too clumsily) to relate in some way to you, although I know all too well that my disease is not likely to kill me, just torture me the rest of my days.

But finding some way to try and understand even a bit of what you're going through is how I not only relate, but in my own way how I am really showing you respect (or I intend to) - I'm saying, not clearly, that wow, this is what *I* have to go through, I just have so much admiration for your strenght and determination to fight what you must, and you do well with grace, courage and humour.

Thank you always for sharing. I hope this comment wasn't too convoluted to follow...