Always a fight

[drz]

Just another upate from me...

Saw my local ENT who admitted i had been failed by the hospital. He said the administration and communication between departments had been very poor in the past and the pressue of having to meet government targets had taken its toll. So that was nice, was expecting him to dodge the questions like the Rheumy did. He also said he'd refer me to see a Rhinoplasty specialist at Adds even though he is trained in Rhinoplasty himself he said i should see his colleague as he thought my collapsed bridge might need several operations as well as a graft. Lovely.
I asked him the biggest question and its the one that repeats itself round and round in my head, Would i still have a collapsed bridge now if i had been diagnosed earlier? He said he honestly couldnt say but felt sure i would've had some sort of collapse requiring surgery, but maybe wouldnt have been as bad as it is today. So overall quite impressed with his reponse tho i will never see Rheumatology in my local hospital again.

It sounds like you finally got a good hearing with a good doctor so things should get better from here on in. Good luck as it doesn't sound like an easy road with several operations likely.

[freakyschizogirl]

Thanks drz. Yeah, a few ops doesnt sound very enticing! And to be honest i'd rather not but then again its getting to the point where i cant look at recent photos of me because all i see is that lovely indent where the cartelidge meets the bone. Looks like i've got a bruise in certain lights and if i've been wearing sunglasses people tend to pass it off as that (which happened to me today!).

[JanW]

It may not be so bad, freaky. My doc says that the operation doesn't hurt very much (hurts more where they take the cartilage) and the wound is very small (tip of nose). You don't even get the black eyes or anything because they don't break bones or do anything that can interrupt the blood supply.

Just (obviously) make sure you get someone who REALLY knows what they are doing. My doc's fixed plenty of horrible jobs done by ENT/plastics guys who thought that our bodies worked like everyone elses and used artificial fillers, interrupted blood flow, etc. The key is that we have vasculitis, and the tissue that died once can easily die again....that's how we got the noses to begin with!

[freakyschizogirl]

Food for thought JanW, thanks i will definately consider that, i'm not gonna let any old surgeon butcher me! lol. Gonna be very selective.

With my little hooter tho its not just saddle nose - its the hole in my septum and the collapse, plus Wegs. Dont i feel special!

[DEE]

Feeling fed up . Started tappering preds again Sunday .Had to have extra bloods done this week and just to add to things mobility of right leg rubbish already just had a shower turned awardely sp getting out of the shower pulled something in left thigh aint life grand

[Sangye]

Hang in there, Dee.

[DEE]

Thanks Sangye posted because it was just like you said so easy to do .I just turned to pick up my towel and felt something pull
gone through should I cry or laugh moment
Alright if i stand up ,just getting up from sitting postion interesting

[Jack]

I can really empathise with you on this one! You think you are being careful with yourself and then the slightest thing you do awkwardly pulls something or causes some damage. I now try to concentrate on every movement I make, but still sometimes get it wrong.

Never mind. So long as you have not broken anything it is just a matter of time before you will recover. Hang in there and try to look after yourself.

[DEE]

Thanks Jack just been laughing about it . I look like ive just got off a long ride on a horse when i walk not a pretty sight

[drz]

I can really empathise with you on this one! You think you are being careful with yourself and then the slightest thing you do awkwardly pulls something or causes some damage. I now try to concentrate on every movement I make, but still sometimes get it wrong.

Never mind. So long as you have not broken anything it is just a matter of time before you will recover. Hang in there and try to look after yourself.

The fact we need to concentrate on everything , even simple things like walking ten feet, or getting into a car, --Is that part of why we feel so fatigue so much of the time.