Re: Bit of a mental question, rather than physical..

[Guest guest]

>

> Although i know a lot of you are going through worse periods than i

> am at the moment, how do you cope with.. well.. being around people

> whilst being so yellow? ......

>

> ..... Sorry if this seems insignificant to some

> of you going through the latter stages of the illness, but for me,

> right now, it's everything.

=========================

Dear

Yes, it stinks. It's lousy and it hurts. And no, it is NOT insignificant!!!!

Let's have that

clear!!!

Anytime people stare at you and are so viciously rude and ill-bred as to shout

comments,

it's going to hurt. It's like being surrounded with playground bullies during

your early

school years. It gives you such a helpless feeling and leaves you angry and

frustrated.

However, to respond to them (no matter how badly you want to whack 'em with a

baseball

bat!) would be to stoop to their level and you're better than that.

I've always been quite heavy and so perhaps I'm a bit more thick-skinned about

such

behaviour, but I remember how much it hurt when I was a little girl and other

kids would

say cruel things and make fun of me. In more recent years I've had people yell

at me that

being fat is not a legitimate reason for parking in a handicapped zone. (They

expect,

perhaps, that my medical conditions should appear in neon lights over my

head??!!)

In a sense, your Mum is absolutely right -- hold your head high. The trick to

it, though, is

to hold your head high just in your own mind. Don't EVER show, by so much as a

flicker of

an eyelash, that you've heard their low remarks or observed their boorish

behaviour. It

will leave them baffled and, in some cases, a bit ashamed of themselves.

Trust me .... I've dealt with this sort of stupid low-life idiocy for most of my

50 years. To

pretend they're not there leaves them looking like the pond scum they are, and

there's

definitely a bit of satisfaction in that for us! Yes, it still hurts,

regardless, but it's really all

you can do.

Regards,

Carolyn B. in SC

[Guest guest]

Hi Chris

Thanks for posting.

It is so sad to read you are not very well. It does sound as if you

have the facilities at hand to get medical assistance ....well sort

of.

My goodness - bilirubin count dropped to 100. Docs said this was my

new base level - I think in New Zealand we have the same

measurement which normally is 2 - 21 umo/L Its a wonder you don't

need light bulbs at your place as you must be so yellow you could

glow!!!.

I had to grin that your 'Mum tells me to hold my head up high and

ignore the people' its the sort of thing I would say to my children,

its not that helpful, but we mothers are like that.

You ask if you could buy some fake tan, can't help you with that one,

but If you could find someone nice at a cosmetic counter... they are

not that busy very early in the morning and they may be able to help

with some sort of stuff that could lower your yellow glow.

Again, as your Mum said try to ignore people, you have enough to do

keeping yourself well without worrying about what people are saying.

The only time I have seen an obvious 'liver problem' person I really

wanted to go and say something... I have no idea what.... but along

the lines of 'good on you for getting out and about' but thought it

would be so intrusive.

If you could get to the UK PSC meeting in Oxford this Saturday there

may be others who you could discuss this with.

Again thanks for your interesting post

from the bottom of the world in New Zealand.

[Guest guest]

I suppose you could hold your head up and ignore it, or you could simply say that you're yellow because your liver is failing. I would think that would also shut people up.

On another note, I do hope you're listed for a liver transplant, and that you'll get it sooner rather than later. Sounds like you've been though enough already.

Marie

Time for vacation? WIN what you need. Enter Now!

[Guest guest]

Hi

Maybe an MP3 player when you are out walking around would help. Then you couldn't hear the idiots yelling at you. You would appear unapproachable. It would give you a barrier and maybe help you have a comfort zone.

You also need to remember that this is not really about you. The people talking to you don't know you and you certainly didn't choose this disease. You only have so much time in life, why waste it on things you can't change. It is what it is. The only thing you can really control in any situation is how you react. I know easier said than done. When I'm having a bad mental day I like to ask myself, if this were my last day on earth is this how I would want to spend it? Usually the answer is no and then I figure out how I am better off (I also use this justification to put off doing housework). Its a life lesson that I need to work on and one of the things I think PSC is supposed to teach me - to appreciate each moment no matter how easy or how difficult and to approach things with an even and steady

attitude. I have a long way to go. I guess this is basically the same advice your mum gave you. Sorry for the repeat.

My situation was nowhere near the level that yours is, I was only yellow for a few months but inevitably someone would ask me about it. I used to jokingly tell people I was having an Incredible Hulk moment. I know the Hulk was green but I think most of the time people were responding to my day glo yellow - Hulk like eyes. If a stranger was curious out of concern and kept pushing I would give them a more sincere answer. Usually if he/she was being mean or a Captain Obvious (not a super hero - a nickname for someone who likes to point out the obvious) they would shut up. Afterall the Hulk only changed color when he was mad.

Hope your days get better,

Darcy

Mum tells me to hold my head up high and ignore the people, but holding my head up high just means i notice it more. Do I just act normal and accept the comments and talking behind my back? Do i hide away and not let anyone see me (which i've done for the past few days.. and know i shouldn't really..)? Do i buy some fake tan and sunglasses and hope it covers it up? It's just really pants atm. Sorry if this seems insignificant to some of you going through the latter stages of the illness, but for me, right now, it's everything.Not sure what replies i'm expecting,Take care- Bradford, England.

[Guest guest]

Hi! I don't know if this helps at all, but just try to remember you're not

alone. Next time you hear one of those comments or feel yourself being stared

at, just remember all of us PSCers who are standing right there with you in

spirit and have your back should you need it. I know it won't help to lessen

the impact of the stares or the verbal harrangues as they happen, but,

hopefully, it will give you some peace of mind and a sense of kinship.

Best of luck!

Sandi in VA

p.s. I tried fake tan to cover up some of my yellow last time I turned

jaundiced..it just made me orange-y, so if you decide to go that route, I'd

suggest you try a professional instead of an at-home drugstore fix!

how do you cope with.. well.. being

> around people

> whilst being so yellow?

[Guest guest]

Hey sorry to hear you are dealing with such crap.

We have diseases that are, in large part, invisible to those around us;

when we are feeling well; people may even forget that we are sick on

the inside, sometimes. But with jaundice it is an obvious and ever-

present reminder to us and everyone around us that we are very unwell.

I find that my illness can make those around me uncomfortable

sometimes, because they want to say and do the right things and help me

feel well, but know there's nothing they can do. They don't know if

they should comment or not, if they should treat me gently with kid

gloves, or if they should pretend that everything is peachy and ignore

my illness. I try to be as open as possible for people who are

interested in hearing about what I go through, so as to make nothing

taboo and eliminate those uncomfortable feelings. But even with my

openess, when I was very yellow recently I found people all of a sudden

didn't know what to say, and became awkward. They would look into my

eyes, I could see them comparing my skin to their own. That was a

strange experience.

This may just be my personality, but at my yellowest the best way for

me to deal was with HUMOR. Because really, what else can you do but

laugh?? You're turning into a bunch of bananas!! I don't have enough

energy to get through my days sometimes so, IMO, spending the energy to

worry about what others think of me is a waste of the precious good

moments that I have. I find humor helps not only keep my own spirits

lifted a bit, but helps those around me relax as well. When I was so

flourescent people just didn't know what to say, even my very best

friends! My canned lines, always followed by a laugh on my part,

were " Just call me Dandelion Vieve " and " Can you believe these reptile

eyes?? " and " And I always just thought I had yellow skin undertones.

Who woulda thought it was a bum liver?? " When I opened up the topic up

front with other people, it put them at ease. I think once they knew I

was open and not completely self conscious about it, they relaxed and

it eliminated their need to make comments when I wasn't listening.

I know that my way of dealing with things isn't the right way for

everyone, but it's what's worked for me. Thought it might help some.

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

Do I just act

> normal and accept the comments and talking behind my back? Do i hide

> away and not let anyone see me (which i've done for the past few

> days.. and know i shouldn't really..)? Do i buy some fake tan and

> sunglasses and hope it covers it up?

>

> It's just really pants atm. Sorry if this seems insignificant to some

> of you going through the latter stages of the illness, but for me,

> right now, it's everything.

>

> Not sure what replies i'm expecting,

>

> Take care

>

> - Bradford, England.

>

[Guest guest]

I liked your response to this. I find people seem very uncomfortable talking about my illnesses as well. Not sure why, but maybe it's because there is so little that can be done. Humor seems like a good response. Someone mentioned the day-glo bananas with legs - that was funny. Anyway, I'll try to keep your response in mind next time I turn yellow.

Marie

To: From: gfmeyer@...Date: Thu, 17 Jul 2008 00:33:26 +0000Subject: Re: Bit of a mental question, rather than physical..

Hey sorry to hear you are dealing with such crap. :(We have diseases that are, in large part, invisible to those around us; when we are feeling well; people may even forget that we are sick on the inside, sometimes. But with jaundice it is an obvious and ever-present reminder to us and everyone around us that we are very unwell. I find that my illness can make those around me uncomfortable sometimes, because they want to say and do the right things and help me feel well, but know there's nothing they can do. They don't know if they should comment or not, if they should treat me gently with kid gloves, or if they should pretend that everything is peachy and ignore my illness. I try to be as open as possible for people who are interested in hearing about what I go through, so as to make nothing taboo and eliminate those uncomfortable feelings. But even with my openess, when I was very yellow recently I found people all of a sudden didn't know what to say, and became awkward. They would look into my eyes, I could see them comparing my skin to their own. That was a strange experience.This may just be my personality, but at my yellowest the best way for me to deal was with HUMOR. Because really, what else can you do but laugh?? You're turning into a bunch of bananas!! I don't have enough energy to get through my days sometimes so, IMO, spending the energy to worry about what others think of me is a waste of the precious good moments that I have. I find humor helps not only keep my own spirits lifted a bit, but helps those around me relax as well. When I was so flourescent people just didn't know what to say, even my very best friends! My canned lines, always followed by a laugh on my part, were "Just call me Dandelion Vieve" and "Can you believe these reptile eyes??" and "And I always just thought I had yellow skin undertones. Who woulda thought it was a bum liver??" When I opened up the topic up front with other people, it put them at ease. I think once they knew I was open and not completely self conscious about it, they relaxed and it eliminated their need to make comments when I wasn't listening.I know that my way of dealing with things isn't the right way for everyone, but it's what's worked for me. Thought it might help some.GenevieveUC 1983, J-Pouch 1999, PSC 12/07Do I just act > normal and accept the comments and talking behind my back? Do i hide > away and not let anyone see me (which i've done for the past few > days.. and know i shouldn't really..)? Do i buy some fake tan and > sunglasses and hope it covers it up? > > It's just really pants atm. Sorry if this seems insignificant to some > of you going through the latter stages of the illness, but for me, > right now, it's everything.> > Not sure what replies i'm expecting,> > Take care> > - Bradford, England.> With Windows Live for mobile, your contacts travel with you. Connect on the go.

[Guest guest]

" My bilirubin's stuck up above the 200 mark, and i look like a bunch

of bananas on legs. "

So, one advantage of being yellow is that your teeth look whiter by

comparison. Also, ( didn't want me to share this, but I can't

help it) I would imagine it makes it easier to hide naked in a banana

tree:)

Our neighbor told that it looked like he was dressed for

Halloween all the time. I'm sure she thought it was funny, but it

wasn't what he needed to hear when he felt so crappy.

The 200 mark is atrocious. I'm sure your physical and mental energy

level is below zero. Our thoughts are with you.

God Bless,

wife of , (psc 1995, cca 2007, tx 5/2008)

bbfranson.blogspot.com

bfranson.blogspot.com

[Guest guest]

Hey everyone.

Thanks for the replies to my question, they were all very much

appreciated!

I've started being able to go out more without fear of the staring.

It's still happening, but i'm starting to get through it without it

affecting me as much, which is good. Managing to get back to some sort

of cheerful level and able to laugh it off a little more, think i was

just going through a bad patch!

Down side is my bilirubin is still getting higher. I saw my Docs

yesterday, but they didn't change anything as i'm due to see a new

team of docs at the Liver Unit in St ' Hopital - Leeds.

Apparently, the doc who i'll be under there is excellent, maybe he'll

have something to suggest.

Anyway, take care everyone. Try keep smiling!

Mr Banana Man, .

>

> Hey ho fellow PSC folk.

>

> My PSC seems to have advanced a wee bit over the past few months. In

> March i was admitted to hospital when i started turning a lovely

> shade of yellow, and managed to spike a rather alarming fever of 39.3

> degrees C. (think that's about 103 F, damn silly different

> scales! ), and was feeling down right rough as a dog. My bilirubin

> count jumped up to about ~250 (i'm hoping the same levels are

> measured in England as the rest of the world - normal on the count is

> about 2-4 i believe) and i wasn't having very much fun. Docs stuck me

> on all sorts of anti-biotics, and had a stent placed in my CBD during

> a rather lovely ERCP. This managed to settle down the fevers and

> infection and my bilirubin count dropped to ~100. Docs said this was

> my new base level as it wasn't going any lower, so they sent me home.

>

> A week later i again started glowing yellow again, feeling sick

> again, and started having the most godawful pains in both sides of my

> back. I went to Accident & Emergency and got admitted again. Had a

> chest x-ray and they found blood clots in both of my lungs - really,

> really not fun (although the oral morphine they gave me for them was

> fun! Started seeing many strange things! :S ) and also my liver was

> playing up again, so another long course of anti-biotics. After about

> 2 weeks i was released again with my bilirubin down at ~100. Not

> exactly normal coloured, but acceptable all things considered.

>

> Things were going alright, bili was stable, pain was gone from lungs,

> returned to work and had just got back up to full time when on the

> 25th June i was admitted to l'hopital again because i was turning a

> funny shade of, you guessed it, yellow! This time though there were

> no fevers and no nausea, so the docs just though my stent had been

> blocked up. They lined me up for an ERCP which went ahead a few days

> later. They found that my stent had vanished! When i asked where they

> said " You've probably passed it. " .. certainly didn't feel it if i did!

> Anyway, they stuck another stent in me, a nice big long 12cm one

> which opened up 2 strictures in my CBD, then they sat back for a week

> waiting for it to drain.

>

> It didn't drain.

>

> My bilirubin's stuck up above the 200 mark, and i look like a bunch

> of bananas on legs.

>

> They sent me home saying: " You might still drain, but now we're

> thinking the damage is further up in your liver in the intrahepatic

> (sp?) ducts, so there's nothing else we can really do at the mo apart

> from monitor your bloods. " They also said they wanted me home before

> i hit one of them with a baseball bat as they could see i was a wee

> bit fed up.

>

>

>

> Now, after all that drivel (seems i needed to moan somewhere), the

> question i was wanting to ask, and i know it might be a wee bit

> difficult to answer it is:

>

> Although i know a lot of you are going through worse periods than i

> am at the moment, how do you cope with.. well.. being around people

> whilst being so yellow? I've been out of my apartment twice since i

> was discharged on Friday, and i've already had one comment shouted at

> me about how yellow i am, and had whole streets stare at me. I can

> deal with physical pain, but this just mentally hurts. Got home after

> the comment shouted at me and collapsed onto the couch in a fit of

> tears. Now i'm pretty much scared to go outside as i find it so hard

> to deal with. I know it's only human reaction when you see something

> out of the ordinary to notice it, but when you're the thing that's

> out of the ordinary.. it's.. poo.

>

> Mum tells me to hold my head up high and ignore the people, but

> holding my head up high just means i notice it more. Do I just act

> normal and accept the comments and talking behind my back? Do i hide

> away and not let anyone see me (which i've done for the past few

> days.. and know i shouldn't really..)? Do i buy some fake tan and

> sunglasses and hope it covers it up?

>

> It's just really pants atm. Sorry if this seems insignificant to some

> of you going through the latter stages of the illness, but for me,

> right now, it's everything.

>

> Not sure what replies i'm expecting,

>

> Take care

>

> - Bradford, England.

>

[Guest guest]

Hi Chris

When your post came up I thought of this video, when you are out

walking you may be too young to know who the Bee Gees are, but you are

STAYING ALIVE...grin.

http://www.dailymotion.com/video/x1afd7_bee-gees-staying-alive_music

(I can't find the video on YouTube)

Hope the new team of Doctors can help.

Best wishes

from the bottom of the world in New Zealand

> Thanks for the replies to my question, they were all very much

> appreciated!

>

> I've started being able to go out more without fear of the staring.

> It's still happening, but i'm starting to get through it without it

> affecting me as much, which is good. Managing to get back to some sort

> of cheerful level and able to laugh it off a little more,