All trying to cope with the change in our l... - Vasculitis UK

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All trying to cope with the change in our lives

Omil04 profile image
6 Replies

Hi all , I would like to introduce myself . In July of this year I was diagnosed with with Wagners plus. Since this diagnosis I have been playing catch up. Has soon as you resolved a problem a new problem comes along . Also planing goes out the window, as my plan regarding medication is now all changed as I now have lung infection. I also was informed that this condition was rare, looking at the fingers not so rare. I wish you all good luck copping with conditions what ever form you. Have ,as we all will need it.

Kind regards Lorraine

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Omil04
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6 Replies
Suzym2u profile image
Suzym2uModeratorVasculitis UK

Not sure what Wagners Plus is could you explain more please?

Omil04 profile image
Omil04

Sorry , I have GPA know as Granulomatosis, multiple cavity lung lesions , also in the spleen. Effects walking , Eyes , Hearing . Tend to feel tried most of the time. However I am lucky due to people have got more problems than my self so I try not to moan too much. Hopefully that is true. My goal is to remain positve, and to keep my sense of humour , and laugh at things . My face is moony, my daughter got a sense of humour like myself calls me hamster cheeks, loads of nuts for the winter Ha . Regards L

in reply toOmil04

Hi Lorraine,

I was diagnosed with GPA in 2010 and have mostly eye and inner ear involvement, also had some lung problems but doctors reacted quickly and that's been quiet since, keeping fingers crossed.

How are your ears and eyes affected?

It takes some time to reach the proper balance/mix of medications and for the lot to work. I needed almost a year for that. But there really is a light at the end of the tunnel. All the best.

Omil04 profile image
Omil04 in reply to

Hi Mrs Carroll , ears tend to block it the feeling that you get when you have a really bad cold, eyes tend to go red and gravely, went to optictions about 6 weeks ago . Doctor wants them to check eyes out so another appointment this week . However glad to here that you are now doing Ok. Thanks for your support. Yes I sure I will get there in the end , but it can be frustrating due to changes can happen very often and quickly. If you guys are like me , I don't have a social dairy now, it now revolves around the the hospital. Just one more thing and then I will stop... When I was told I had this and the problems associated with it , I tented to lose my confidence regarding going out on my own . When I identify this , made changes, and now confident again. 😀👍

sorefeetsoldier profile image
sorefeetsoldier

Hi lorraine

Just read your post and i can relate to your condition . I think this is a great site where you can chat to people who know what your going through.

We all should start our own political party ...The pred moon face party lol

Or a rock Band .... moonface and the steroids lol

Take care

S

Omil04 profile image
Omil04 in reply tosorefeetsoldier

Hi sore feet soldier, Regarding starting up a political party, not sure the world is ready for me yet . !! However we have got ba identity all off our own , haven't we. Regards L

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