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Thread: Noses

  1. #1
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    Default Noses

    After having 34 operations in 8 years, I was left without a nose so I had to go for a prosthetic one. The doctor was very nice and did a good job, making me a nose and another spare one. Expensive! They were ready to pick up the night before I was leaving for America to visit my grandchildren. I was told not to touch them until tomorrow when they would have dried completely, so we put them in a Ray Ban sun glasses case to protect them. When I left the office it was raining so everyone was huddled under doorways while waiting to hail a cab. When I got home I went to show my new noses to my daughter and they were gone. It turns out while we were waiting under an awning I was pick-pocketed for my pair of Ray Bans. I would love to have seen the face on the pick-pocket when he got home and opened the box. Actually, no - I'd like to punch him in the nose. His nose.
    My doctor was great and he told me to come back and get the trial nose and I could use that temporarily. We had called the taxi company just to be sure that they hadn't fallen out of my pocket. My doctor laughed and said that one time, he forgot a pair of ears in the back of a taxi.
    I ended up hating the noses in the end after all that time and money so I just wear a patch.
    My blog: Animo

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    That is so funny.
    I'm glad you have a terrific sense of humour........it could have been devastating for some. I guess you weren't laughing at the time.

    Happy Easter Barbara
    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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    Well, this gives a different perspective to those of us who don't like our saddle noses. At least we have noses! Thanks for sharing your story, Barbara, and I admire you for how well you have managed to deal with everything you have been through.
    Anne, dx'ed April 2011

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    I'm glad you can laugh about it now Barb.
    Phil Berggren, dx 2003

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    Hi Barbara. Your story is amazing and so is your blog.

    I only would like to make one remark.
    Wegener's Granulomatosis is NOT caused by a virus, as you state in your blog.

    Quote from your blog:

    Since this virus runs around the body eating and destroying bone, membrane, muscle
    and pretty whatever it desires...
    People who read this, will be misinformed about the disease.
    Maybe you would be so kind to adjust the text at that point?
    Living with WG/GPA since june 2010...

  7. #6
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    Thanks I didn't know that.What is Wegener's then? I have had no information here even from the vasculitis federation or the rare disease federation. I have kind of been my own doctor so please fill me in so I can correct my blog so as not to confuse people but most of all so I know what I am talking about . That is why I was so glad to find this site because I have felt so alone. I am really surprised that I am not depressed at all and I go about my day like anybody else when I can.. For example I just had 3 days where I couldn't breathe well and I couldn't do any activity and today I feel great.
    My blog: Animo

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    Go to Granulomatosis with Polyangiitis (GPA/Wegener

    That site should help you better understand it.
    Phil Berggren, dx 2003

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  10. #8
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    Barbara, it sort of alarms me that you say you are kind of your own doctor. But it sounds like you have had WG for a long time and must have had doctors along the way. And although I have a doc, the typical complaints apply about short office visits, lack of experience with WG, etc., so I do fairly often feel like my own doctor, too. This forum is where I have learned just about everything I know about WG and its treatments. Which may not be much, compared to some, but is enough to make me feel a lot more aware of what is going on than I would otherwise. Doing searches of the archives here can be time consuming and a lot of work, but you may find some very helpful threads and posts in understanding WG.
    Anne, dx'ed April 2011

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    Thanks, I read it and it helped clear up a few things and let me understand a bit more but I still feel a bit in the dark. Because every organ in my body has been badly affected inculiding eyes and ears, heart, kidneys and now lungs the doctors here feel I should give up. One doctor even told me to go home and there was no need for me to return to the clinic the a hospice doctor would come to my home to adjust my medication. I was really insulted by this because I am not ready to throw in the towel just yet, I have a lot of life left in me and a lot of things left that I want to do. It is a shame that I am in such a backwards area of Spain because Spain has some great Doctors, I just happen to live in a very small uneducated area. It comes down to finances in the end but many of my doctors form Madrid and the North of Spain still talk to me on the phone and give advice over e-mail and will take me in under the table when I really need help because I am not allowed to go to another province for treatment without years of paper work and I have to prove that nowhere in my province can the deal with my problem, which I did achieve when I lost my vision. I used to go private but then it just got so expensive we just couldn't afford it any more. I don't mean to put the Social Service down, it is fantastic, it is just in this area they haven't had any knowledge of Wergener's or Rhodatarula, another rare disease I have.
    My blog: Animo

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    Not speaking as an expert, Wegener's is an autoimmune condition, where something has triggered the immune system to attack healthy organs and parts of your body and try to destroy them. That indeed is very different from a virus. It sounds like Wegener's has caused much more destruction within your body than what most of us have suffered. My heart goes out to you. I wonder if for your survival, you might need to move somewhere where there are true vasculitis specialists and your health care choices are not so limited. I'm unfamiliar with your other rare disease, but that sounds like even more reason to be living somewhere else where you can be better cared for and doctors won't just give up on you. You sound active enough that it is hard to imagine they would even say that.
    Anne, dx'ed April 2011

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