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Ok So im out of denail!!
Hi All,
I think ive finally accepted that i have this horrible thing, i've had a really crap week, had a flare up in my ears and generally feel really crap.
The steriods appear to have stopped working, i am taking 55mg pred a day and am having 3 pulse infusions a week but that doesn't appear to be helping my ears, although my sinuses are clearer.
I have terrible heartburn, the doctor put me on 20mg of omeperzole but i have increased this to 40mg and seems to be improving, not that i can get hold of a doctor/specialist to check that this is ok!!
Im fed up of being poked and proded and generally in a bad mood!!! Ive put on like a stone and my face is so round i can hardly recognise myself!
I feel so sorry for myself!! I started my own company about 18 months ago and i have my dream job, good money, hours to suit me and the kids and absolutely fantastic clients, i really couldn't ask for anymore, and i'm just so worried im going to loose it all, and without the job goes the house and everything else!!
Im usually very positive, but Im finding it hard now, ive found when you tell people your ill you get a little sympathy, a couple of phone calls and then it tapers, and no one wants to talk about it, they dont want to dare ask how you are!! So when someone does ask i usually say, 'i'm fine as cheery as i can!' Which so isn't true, but then i dont want to be the ill one that everyone feels sorry for!!
Anyway im having my hair done today, which will either cheer me up or put me in a worse mood if the hairdresser doesn't make me look exactly like i imagined!! (im thinking angelina jolie!)
With all the moaning aside im more than aware that im lucky to be here, that ive got to give the treatment a chance to work and there is a million other worse things to have in the world! i just want to mope today!! :-(
My cup is half empty today (only because someone has spilt the other half!)
Jo x
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And i spelt denial wrong!!
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Yep, you spelt denial wrong........it's all part of the disease (we constantly have to double check our spelling these days)
I'm so sorry you are feeling this way.
Remember we are all here for you, as you will be for others when it is their turn.
Yes, things could be worse but this is a sucky disease and you are entitled to feel pee'd off.
I hope the haircut works for you.
Take extra care of yourself and remember to always ........
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
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hi Jo and can i say that what you are feeling is " normal " after being diagnosed with WG.we've all been where you are right now although that is no comfort to you.WG affects everyone in different ways,some of us have been able to regain a semblance of normality by returning to work while others,like myself,struggle to get out of bed in a morning.i can only advise you,and this is from personal experience,is don't try to do too much too soon.i soon determined my boundaries of what i was capable of and if i overstepped them it came back to bite me.if you're able to return to work do it gradually, if possible.i hope the hair do brightens up your day a little bit.come back and let us know.
john.
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Well i didn't kill the hairdresser!! its cheered me up no end, my hair was so long and had got really thin from the pred, now it looks fab and very short, had about a foot cut off, but at least people will comment on my hair for the next few days and not how terrible i look!!
Feeling a little more positive now, until tommorow when i have another infusion! oh the joys :-) these things are sent to try us xx
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glad you're feeling happier.
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I'm glad you've perked up since the haircut..... but it is perfectly OK to vent on here as much as you want! You won't be judged for it because we've all been through it. And it is OK to feel sorry for yourself, until you get tired of that and move on..... Your business sounds great, and I wouldn't worry too much about losing it or your house, as many of us on here go on to live fairly normal lives. It's great that the business was already set up and going well before you came down with this crappy thing we all have!
Anne, dx'ed April 2011
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My husband was prescribed 40 mg of omeprazole once a day. When that didn't quite do the trick it was changed to 20mg twice a day and added 150 mg of Zantac twice a day. That seems to do it - if there are sometimes it doesn't work, Tums do and they were prescribed as well.
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