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crackers
12-04-2008, 09:02 AM
My name is Sue, I joined this site because my husband John became really ill two yrs ago and ended up with septecemia.He was diagnosed with wegeners, whilst they where doing tests they found a large polyp on his bowel which was blocking the bowel so they removed it a day after his bowel perforated and he had emergency surgery, peritininitis he was in intensive care for a while the polyp was cancerous he had a colostomy which he had reversed last September and finished six mths of chemo last July.So the Wegeners we felt was put to the side whilst all the other stuff was going on.We saw the consultant on Tuesday this week and she said the way he is now is as good as it gets.He is finding it hard to deal with the tiredness and the weakness in his muscles.I just think it will help us both to talk to people in the same situation and seeing how you all cope.I work as a health care in our local hospital and I had never heard of this disease.It has changed our lives so much
Right thats the whinging over both myself and John are in our fifties with two grown up sons and three grandchildren, we share our home with Holly our mini scnauzer and Bailey a sixmth old german shepherd.Looking forward to chatting to everyone and learning a few things from you all
Sue x

crackers
12-04-2008, 12:33 PM
hi all i'm john sue's husband.where to begin?i've always been a fit healthy person the odd cold and flu nothing more.at the back end of 2006 i started with what i thought was a bout of flu but into the new year i still had a cough which just wouldn't go away.then the night sweats started i would wake up in a pool of water.i would shiver violently feeling icy cold while sitting in a warm room.then the tiredness and weakness started.my doctor referred me to the rheum clinic at our local hospital.they admitted me almost immediately and after many tests diagnosed connective tissue disease.you'll probably know within ctd there are variations,wd being one of them but i was displaying symptoms of each of them.i've not had the joint pain but i've got the watery eyes, the nose bleeds,the muscle spasms,the affected lungs and the extreme tiredness and weakness.before this we used to go camping in scotland and walk up the hills now it's a struggle to climb the stairs.i've had every test you can imagine even a bone marrow test which has to be the most painfull test there is.at the moment they are attempting to reduce the steroids to avoid muscle damage.the problem with this type of disease is it not only affects you it affects those closest to you.decorating the house,digging the garden,even walking the dogs is beyond me.i feel so sorry for sue,she didn't sign up for this,sometimes i feel like a burden in fact most of the time.sorry to have sounded so downbeat but this is the first time i've had the chance to talk to people who really understand what it's like.thanks for listening and i'm sure we'll talk again soon.

andrew
12-04-2008, 07:23 PM
Hi Sue and John...
You're right, we do know what you're talking about. You're free to sound 'downbeat' any ol' time you like too :) Good ol' WG is a tricky beast and can manifest itself in an almost infinite variety of ways. I guess that's what makes it so entertaining (just kidding!).

What dose of Steroids are you on?

It is REALLY hard to see those around you do what you feel you should be doing. It really makes you feel guilty despite assurances to the contrary. The important thing, as I'm sure you've discovered, is not to give in to the guilt and push yourself too hard. The morning after I came home from hospital, I decided to make myself breakfast. Bad idea - not the cooking but the fact that I needed a plate from the bottom cupboard. Having only just learned to walk and breath at the same time again, I wasn't too good in my feet. I managed to squat down and grab the plate but I very quickly discovered that there was no way in hell I was getting back up again. I managed to drag myself up again using a stool on the otehr side of the kitchen but it brought home to me that I need to take it easy :)

So, I know where you're coming from. You need to trust the Mrs and put it to the back of yoru mind and concentrate on little steps forward which usually come in the form of three steps forward then two steps back. Eventually you make some real progress :D

Welcome to both of you!

crackers
12-05-2008, 04:09 AM
Hi Andrew they started John off on 60mg prednisalone because his crp was 300 and something, they have gradually over two yrs got him down to seven and a half mg but the less he takes the more tired he gets and his muscles are so weak.I made the mistake of handing him our grandsons pack of balsa wood as to me it wasnt heavy but it nearly took John to his knees.I am so happy to have found this site because as John says he looks ok and he feels people dont understand( even I dont at times) I think you have to go through this to know and I wouldnt wish it on anyone.At least now we realise we are not on our own and there is support out there
Thank You
Sue xx

andrew
12-05-2008, 05:52 AM
Yup, if you look 'normal' people expect that you are 'normal'. Very hard to get across that you're ill. Have a read of this thread, especially the link in post #5: http://wegeners-granulomatosis.com/forum/general-wg-chat/19-fatigue.html

crackers
12-05-2008, 07:19 AM
Andrew what a great way of thinking,:)
Thanks
Sue x

Luce
12-09-2008, 01:15 AM
Hi Guys

Having read this I felt I must tell you about my partner and how absolutely brilliant he has been since I was diagnosed a few weeks ago with WG.

We had some friends coming to visit yesterday and our flat was in quite a state because of the weirdness that was the last few weeks. I told him I would clean the bathroom and kitchen while he was at work but I just coudn't do it - a few minutes of scrubbing the bath left me so out of breath and tired I had to walk away.
Martin was just fantastic over the weekend - he finished what I couldn't do, hoovered, put the Christmas decorations up and all while I stood and watched (and probably nagged!). I was so grateful I burst into tears (and blamed my emotional outburst on the steroids) and he told me that he'd do anything for me. Again, he didn't sign up for this - he's only 28 and although we've been together for 9 years he could have just walked away and left me to deal with this alone.

I'm so glad I have him and didn't realise until this weekend just how much I took him for granted. So I guess what I'm trying to say is please remember to thank those around you for all the help and support they provide, Martin is certainly getting a big Christmas present this year!

crackers
12-09-2008, 01:48 AM
Hi Luce
Like your other half,I will always stick by John omg I didnt marry him to walk away he is still my John and I love him to bits he just cant do too much thats all.Its just hard because we feel so helpless.
You Take Care and look after yourself
Hugs Sue xx

Natalie Makeef
01-09-2009, 01:06 PM
Hey there ladies. My husband is the same David has been a great support and strength to me. We were married in April 2005 and I was diagnosed with WG on Nov 2006. We were trying for children at this stage but WG and the medication has prevented this from happening.:( I am also going through pre-menopause :(:( David said that I did not need to go back to work till I was well - well I keep having complications. he told me our weddings vows were "in sickness" I don't know what I would do without him!!

Awells
01-11-2009, 10:06 PM
John, don't feel guilty about not being able to help. Sue understands. It sounds like this is the same for so many of us. I was diagnosed Dec 1st 2008....I've been dealing with fatigue for about a year...never knew why just figured I was getting old or stress from new positions at work etc....then they found a Mass in my lung which led to my diagnosis....anyway, I find that I can only go about 4 or 5 hours at an office job on my best days....don't push yourself, do what you can when you can...hopefully the doctor is wrong and you will start to string together some good days. (Wegener's good days that is)

Good Luck!

-Adam Wells.

crackers
01-11-2009, 11:10 PM
hi adam.problem is i don't have any good days.before i had surgery last september i could walk approx. a mile now i struggle to walk 100 yards.i've got a bit of a lung problem at the moment and i'm waiting on the results of a ct scan i had last week.2 years down the line and i still feel like crap.finding something positive to hang on to is not easy,maybe once these results come thru things will improve.anyway good luck and stay healthy.
john.