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crackers
06-13-2009, 11:28 AM
i got a phone call from my gp a couple of days ago asking me to call in for a routine blood pressure check.so i went along and had it done and for me it was normal.it was a nurse practitioner who did it,someone i'd never seen before, not my gp.she then said to me "and how are YOU doing".so she got the full story from starting with WG, to the cancer,then living with WG.all the while i was telling her this she sat there with a smile that looked glued on.at the end of my sorry tale she said "well at least you've had 50 years of living.you should go to the local childrens hospital and look at the suffering there." so am i supposed to feel better because there are kids who are suffering(an obnoxious thought) or should i wake up in the morning and think,yes she's right,i will suddenly start feeling better because of what she said.by the way,over the years i have been to the kids hospital and i've seen what goes on there from my son and grandson being in there.i just got the impression that her response was a stock answer to anyone who was less than positive.
john.

Sangye
06-13-2009, 11:46 AM
Yeah, I've lived THAT moment myself too many times! A few times I've had the presence of mind to say something like, "It's a good thing to develop limitless compassion." I say it in a non-confrontational way, almost like I'm speaking to myself and they happen to be there. I guess in a way I am talking to myself, because I'm trying to have compassion for someone who would say such a thing.

I don't always have the presence of mind to do that, though. I often snap back in ways I regret later.

Jack
06-13-2009, 05:48 PM
I'm almost ashamed to say it, but sometimes I just have to turn my back on the suffering of others.:eek: I have about as much to deal with fighting my own condition as I can tolerate and I have to protect myself a little by pulling the blinds down. I just can't afford to go there!

As far as "at least you've had 50 years of living" goes, it is not such a bad thing to bear in mind. I have had several friends and acquaintances die in recent years who were younger than me and apparently healthy. It happens. :(

andrew
06-14-2009, 10:51 AM
She'll learn I'm sure. John, I'd feel pretty much like she didn't give a tinker's fart how I felt. She's definitely got a lot to learn about bedside manner. Try not to let it bother you (easier said than done). She obviously doesn't get it.


I'm almost ashamed to say it, but sometimes I just have to turn my back on the suffering of others.:eek:

Absolutely nothing wrong with that, Jack. You have your own battles to fight. others have theirs Sometimes you just have to say no.

crackers
06-14-2009, 10:58 AM
andrew while i wouldn't wish this on anyone i sometimes feel that if people experienced what we go through everyday for just one week they might see things differently.
john.

andrew
06-14-2009, 11:04 AM
Absolutely! There's a saying about walking a mile in someone else's shoes. Very relevant.

crackers
06-14-2009, 11:07 AM
i think that was a song from the 70s by joe simon.showing my age now.
john.

andrew
06-14-2009, 11:10 AM
Sigh. Those were the days.

crackers
06-14-2009, 11:21 AM
oh yes.
john.

Doug
06-15-2009, 11:33 PM
Then again, there's that "You don't look sick," issue we have. Pehaps if Prednisone gave us puppy eyes instead of hippo arses....:cool:

Sangye
06-15-2009, 11:53 PM
Pred-- esp the higher doses-- gave me extra long eyelashes. It gave me a more endearing look-- along the lines of puppy eyes. Still, there are those who can look at a puppy and be insensitive....

Everyone is trainable, but I've found it's not always the best use of my energy to try and train them. Training myself to have patience and compassion for them is the best I can do.

crackers
06-15-2009, 11:54 PM
a pumpkin for a head,the torso of a pot bellied pig and a hippos arse.:eek: now thats the stuff of nightmares.only thing is i'm awake when i look in the mirror.:D

andrew
06-16-2009, 07:11 AM
a pumpkin for a head,the torso of a pot bellied pig and a hippos arse.:eek: now thats the stuff of nightmares.only thing is i'm awake when i look in the mirror.:D

Baahahahaha. The mirror has a lot to answer for. At least you'll be ready for halloween :D [ducking]

crackers
06-16-2009, 07:37 AM
i save a fortune on costumes.;)
john.

Doug
06-16-2009, 10:27 AM
a pumpkin for a head,the torso of a pot bellied pig and a hippos arse.:eek: now thats the stuff of nightmares.only thing is i'm awake when i look in the mirror.:D

I am astounded you forgot the... bunny ears! :p:D

crackers
06-16-2009, 11:05 AM
sorry doug they are only used in conjunction with the clowns feet which are only seen when i forget to take my water tablets.
john.

Terri
06-16-2009, 12:33 PM
LOL, THANKS GUYS! I NEEDED THAT JUST NOW.

I've always wondered how I look to other people.

Geeezzzz, must be scary to some.:D

Doug
06-16-2009, 03:18 PM
sorry doug they are only used in conjunction with the clowns feet which are only seen when i forget to take my water tablets.
john.

:p Aw, yes! I forgot about that: Polish hams stuffed into clown shoes, if you can find a pair that fits! Of course, you'd leave off the bunny ears! My bad!

jola57
06-16-2009, 03:20 PM
ah me friends, pretty soon I will be saying godbye to the belly and arse. I have gone from 98.6 to 91.6kg, whoopee. At least some good news.
John, insensitivity is just part of life, they just don't know how it feels and for the better part probably are trying to make us feel better. I know how I used to be probably saying something as stupid as that nurse. just think how much more we know than anyone else in the world, all the little grey cells that work overtime with the result ---- wait for the punch line ---- yess ----bunny ears

Jack
06-16-2009, 04:42 PM
I have gone from 98.6 to 91.6kg, whoopee.
I've gone from 102 Kg to 54 KG :eek: You can have too much of a good thing.

jola57
06-16-2009, 04:52 PM
sigh, I can only dream now of that weight. I am dropping slowly which is a good sign, last time I dropped fast and then went into flareup. If I remember you have a hard time keeping your food, what about high calorie soups and shakes?

pberggren1
06-16-2009, 05:52 PM
I'm exactly half way between at 77kg. My arse doesn't seem to be affected yet, just my gut and chest.

Jack
06-16-2009, 07:13 PM
what about high calorie soups and shakes?
Yes, I have them on prescription, but they are not very nice and don't make me feel great.
Half the problem seems to be psychological. Because I have difficulty swallowing and then feel a bit sick after eating, even the smell of food now puts me off the idea. I know that I can't afford to let this develop, otherwise I'm going to starve! :eek:

Doug
06-17-2009, 01:28 AM
Pred-- esp the higher doses-- gave me extra long eyelashes. It gave me a more endearing look-- along the lines of puppy eyes.

Now we know....!:)

Geoff
06-17-2009, 02:11 AM
Nice one Doug,

It pays to keep a sense of humour. Your comment is oh so true but funny just the same. Everyone I meet comments on how well I look so I 'feed' off that. We have all seen people who look like the walking dead and I remain positive that I will fight this disease. Everyday when I drive to work (yes still having to pay the bills) I pass the house where my best mate lived. He was taken very quickly by a stroke and even if it is pouring with rain and the wipers are going full tilt, I thank God for the gift of another day. Dont want to get too 'preachy' but there it is........

coffeelover
06-18-2009, 12:05 AM
Jolanta,
Congrats on your weight loss. I am still hovering at the same place I was a month ago. But am vowing to get serious again this week. Now that my pred doses are lowering, I have high hopes for SOME weight loss.
I am eating better for you foods though, so that I am happy about.

Jack,
Your weight loss does seem a bit much over a short period of time. I wish I could tell you something to help. Maybe you will have to join my nightly smoothly ritual. Coffee in the am, tea afternoon and evening and a smootie before bed. It's amazing I have time for anything else! Anyway, we do not want you starving to death. You have dealt with WEGS all these years, you can overcome this too!
Lisa

Stephanie
09-15-2009, 08:23 AM
ergh im having a horrible time with weight loss, i hated the way i looked at 10 stone and at 13 and a half stone i refuse to leave the house
its just not coming off, i dont eat all that much and have a wii fit and a bike that i use everyday.. :(

Sangye
09-15-2009, 09:20 AM
I wish I could say it will happen fast. Pred changes the endocrine balance so deeply and the imbalance remains in the body for a long time after you've stopped the drug. I don't remember if you're off it yet.

Don't overdo the exercise, though. I know you're young and wanting to get back in the game, but take care. The pred, the other drugs and the disease all create a fair amount of imbalances that cannot be corrected quickly, or by pushing hard. And stress or overdoing it is a good way to cause the Wegs to flare.

So keep up the exercise--it's great that you can do it. Just try to see it as a marathon, not a sprint. :)

jola57
09-15-2009, 01:42 PM
I have just gotten used to people looking at me, I still don't like the way I look but I decided not to let it get to me. I keep thinking - one day - but when that day comes I simpy don't know so for now I have a lot of one day's to look forward to.
I too shun the people I knew before the illness that I have not seen in a while. That is just my blighted pride. I am working on it.;)

Doug
09-15-2009, 01:48 PM
Jolanta- Good for you! I think your post highlights another thing new weggies need to be alert to: every day isn't wonderful, but most days can be if you count your blessings. Look for the signs that tell you you are improving. Focus on those! Be honest with yourself about things like weight gain and moonface (oh, yes! that one I hated! but I still had to go to work that way!)

crackers
09-15-2009, 01:51 PM
jola i've seen people i know,from before it started,in the supermarket but they don't recognise me.so i let them walk on by.as you say stupid pride.
john.

jola57
09-15-2009, 01:58 PM
You must hear my chukle, I don't know how many times I tried to do this but they always recognize me, so I just go into my spiel "Well I have been ill and I have this autoimmune disease ....blah blah blah"

Doug
09-15-2009, 02:04 PM
Here's another strategy: Swallow your pride and meet them the first time you see them after WG. Tell them the whole story, assuring them as they pass out, that you'll be sure to update them the next time and every time after on how you are doing!:D From that time on they will try to avoid you.;)

jola57
09-18-2009, 02:55 PM
Now there's a solution. but then there is the other side of the coin. Just today I have been complimented on how much slimmer I look then a mere 3 weeks ago (funny that I don't feel slimmer). She is a nice lady and I believe her.

Doug
09-18-2009, 03:03 PM
Even if it isn't factual, accepting what someone says at face value can help until there is genuine change. It would be rude to tell your friend she was wrong anyway! (In my mind, you look like Greta Garbo, only with a Polish accent! I could be wrong, but that's my impression! Don't be rude and tell me I'm wrong!)

jola57
09-18-2009, 03:06 PM
"I vant to be alon", nah at one time it was said I looked like 'Audrey Hepburn' but i think it was just sheer complements.

Doug
09-18-2009, 03:12 PM
http://www.wegeners-granulomatosis.com/forum/members/doug-albums-doug-s-album-avatars-candidates-picture51t-kittens-cute.jpg (http://www.wegeners-granulomatosis.com/forum/members/doug-albums-doug-s-album-avatars-candidates-picture51-kittens-cute.html)

Jolanta-

There, with everything going on, you are in serious need of cuteness! Also, if you looked like Audrey Hepburn (I fell in love with her before I understood the emotion! That emotion, that is!), you could pick up 50 kilos and still look pretty dang good!:)

jola57
09-18-2009, 03:16 PM
Ooooh, he is just adorable, thanks for being here. Nah, that 30 kg I put on realy did a number. You can see it in my before and after pictures.

Doug
09-18-2009, 03:29 PM
Jolanta- Before and after photos are like nasty abbreviations: it's dangerous to take a peek! What if I came back, and I put down that frequently used texter abbreviation: "OMG!" You'd look it up, and, if you were having a bad day, you'd think "Oh, that Doug thinks I look nothing like Audrey Hepburn now!":D

jola57
09-18-2009, 03:43 PM
Ha ha, I look at them and actually am glad, at least my hubby doesn't nag me to go on 10hr hikes.

Sangye
09-18-2009, 11:42 PM
I haven't allowed a single picture to be taken of me since I got sick. I don't ever want to remember these days-- not that aspect, anyway!

Doug
09-19-2009, 01:01 PM
I made the mistake of stopping by DailyBooth (Twitter with photos?). It involves posting one photo of yourself each day, in some activity or something. I truly fail to get the point of these things! Anyway, I have, in less than a week, taken more self-portraits than the total number of photos I've allowed others to take of me in, umm, maybe 20 years! It's liberating, as my new avatar may suggest. I'm hanging out with a tough crowd these days.

Stephanie
09-21-2009, 02:28 AM
I haven't allowed a single picture to be taken of me since I got sick. I don't ever want to remember these days-- not that aspect, anyway!

im exactly the same, i have no photos of me at my prom or at any family events, looking through peoples photos it looks like i havent been there
i had a party for my 16th and it looks like all my friends have broken into my house and i didnt know, because im not in one single photo, not even in the background.
i fail to see the point in photos.

coffeelover
09-21-2009, 02:39 AM
Hey Doug!

I like the shirt! Perfect!

I am the opposite. I take pics of myself and painstakinly look at them to keep my disease in perspective. I have been feeling great, which makes me think that I am OK.....but we all know with WEGS that is not necessarily the case and I need to remind myself to take it easy. Right Doug?

With age comes SOME wisdom
Lisa Coffeelover

Doug
09-21-2009, 10:19 AM
I didn't either call you an old battleaxe...! Ha!

As for feeling great and losing track that I have Wegs, I am precisely as bad as you, Lisa! On one hand it is a blessing to be so removed from the disease- even doctors, for me, at this point, are getting to be rare- but on the other it leads to over -doing things and forgetting our BFF is forever.