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Thread: just diagnosed and got lots of questions!!

  1. #51
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    Light warrior. Just wondering how many spoons you'd say on a good day? I've never thought of using like that. I just let people know when I'm about to run out which I guess is a bit late really!
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  2. #52
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    Quote Originally Posted by Lightwarrior View Post
    Your advice about finding a balance is excellent. i remember when I was first diagnosed I kept trying to get someone here to give me answers about how to develop a if this happens then wegs will go this direction etc. I remember Jack basically telling me to get over it and that I had to find a new normal. It was really the best advice I had received. I guess that I would be kidding myself and you guys if I told you that I still don't find my science mind trying to break it down better. I can't do that with Wegs and it makes me crazy. So...... I play Jacks post in my head and I try to get over it and find my new normal.

    Lot's of rambling, can you tell I haven't been able to get past 40mg yet??? I guess it's better than the 60 but pred head is still in full swing.
    Even when I know better it doesn't stop me from having pred moments of nostalgia thoughts of how things were better at one time and day dreams that they will be again. It is hard to remember all the time that things change and seldom go back to the way they were. But it is hard to enjoy your "new normal" if you spend all your time thinking about the past or day dreaming about a future that may never come. Trying to stay in the present and practicing gratitude really helps me most of the time. It isn't easy but seems the best way to try manage the losses from Weg damage and other things.

  3. #53
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    Jsmith, welcome to the best little Wegs Forum in the world. This group of people have saved my butt on more than one occasion and in fact my early days were similar to yours in that I had a specialist that had completely abandoned me, and has taken years off my recovery by his lack of care. I'm sorry you have this sucky disease, but life does come back, although slightly altered it is still life. I also have a 6 year old, she was 3 when I was diagnosed, and that was probably the hardest for me. But we're all out on the other side where life feels much closer to the old life but still very different. We're all happy, and love every second of life and time with each other. WG and the early fight to stay alive have give us perspective and have in fact made my little girl much more sensitive and empathetic. My body is a little worse for wear but my spirit is stronger and better than it has ever been in my life. I feel like after that experience I can take on anything. It's been quite a journey. People on here that know me can attest to me being nauseatingly optimistic, but although it was a yucky battle at the start (physically, emotionally, psychologically) coming out of it makes me feel like a million bucks. I still have aches and pains and walk around the house like an 80 year old sometimes, I will still be on Imuran (gentle chemo) for the rest of my life, I no longer work at my job, but I'm happy to be able to do something that could change things for the better and to be with my amazing family and friends.

    I know, gag. It sounds over the top, but I mean it all from the bottom of my heart.

    As for the ears. Any luck? I had the same problem and in fact my first symptoms were in my ears and going deaf and lots of pain... I had my ENT, who also missed it big time, put tubes in my ear drums because the eustachian tube was inflamed and blocked and created a vacuum in the middle ear which in turn collects fluid from adjoining cells and fills up and kills your hearing. A very simple procedure is to put a couple of tiny tubes in your ear drums (takes about 5 minutes max) at the ENT and they allow the ears to drain, and prevents infection from setting in, and clears up your hearing. Only downfall is you can't swim with them (you get a set of earplugs). After about six months they come out on their own and if your disease is under control and the eustachian tubes are no longer inflamed it should be without any long term effect - this is if your problem is what I said, the others speak of problems that involve the nerves and the solutions are as they said, but it's worth checking this option before taking more drastic steps.

    And lastly, the way the doctors treated you - I was cringing as I was reading it - it makes me so angry. What really sucks is that you're not the only one. Although Wegener's is predominately a male disease, autoimmune disease, the umbrella we fall under is predominately a woman's disease and this is how many patients are treated before diagnosis... this is something that I want to change by raising awareness and making some of these doctors held accountable in some way.

    Autoimmunity and Women
    Even though there is some universally accepted knowledge about autoimmunity, its victims -- mainly women -- have suffered from a lack of focus and a scattered research approach. For example, autoimmunity is known to have a genetic component and tends to cluster in families as different autoimmune diseases. In some families, a mother may have lupus; her son, juvenile diabetes; her sister, antiphospholipid syndrome; and her grandmother, rheumatoid arthritis.
    Getting a proper diagnosis is sometimes as difficult as living with the disease itself. Victims face problems not only because physicians often don't think of autoimmunity, but also because of who they are, namely, women in the childbearing years. As a rule, this is a time in a woman's life when she looks healthy, though looks can be deceiving. Often, women who suffer from autoimmune diseases are not taken seriously when they first begin consulting their doctors. A woman's symptoms are likely to be vague in the beginning, with a tendency to come and go, and hard to describe accurately to her physician. In a typical scenario, she is often shunted from specialist to specialist and forced to undergo a battery of tests and procedures before a correct diagnosis is made, which can sometimes take years.

    Here's the link to the whole story: :: American Autoimmune Related Diseases Association, Inc ::

    I hope this helps, and I've heard nothing but accolades about Dr. Jayne. I know a few people that are his patients and they regard him with love and respect. He is a world leader in WG.

  4. #54
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    That's not over the top Marta. That was beautifully said. I thought you were still working? I'm sorry you can't work. I know what that is like. Why do you say you will have to be on Imuran for the rest of your life? My doc wants me to start weaning off it soon.
    Phil Berggren, dx 2003

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    Quote Originally Posted by Hammy8241 View Post
    Light warrior. Just wondering how many spoons you'd say on a good day? I've never thought of using like that. I just let people know when I'm about to run out which I guess is a bit late really!
    I don't know that I have ever given the spoons a number. Just saying it is a "good spoon day" or a "low spoon day". is usually helpful.

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    Marta,
    I didn't know you weren't working either. I agree with Phil your words were articulate and not over the top at all. I am under a month that I am taking the plunge to quit working and go on disability. I am excited and scared to death, I have always worked and to let go of a good job because I can't do it anymore is just so hard.

  7. #57
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    Quote Originally Posted by Lightwarrior View Post
    I don't know that I have ever given the spoons a number. Just saying it is a "good spoon day" or a "low spoon day". is usually helpful.
    It made we think that those with autoimmune diseases could benefit from some sort of wall thermometer /chart which, instead of degrees F or C is marked with the number of spoons (or energy levels) we have for the day.


    When you get up in the morning , just slide the marker to how you are feeling that day. Might save the awkward daily question on how we are feeling that day and warn your partner that a normally quite reasonable question is likely to lead their head being snapped off!


    Another job for Marta?
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  8. #58
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    Jo,
    Are you taking folate? I think folate is pretty standard with MTX--helps with side effects. I had the shaking hands thing--Rheumy said it was from pred--it goes away in a few months. My Rheumy said to take the MTX after dinner & go to bed so I'd sleep through any side effects. Well I took it after dinner but I didn't go to bed, I wasn 't going to sleep a 8PM, but I didn't have any side effects anyway. Hopefully you won't either

  9. #59
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    Light I had no idea. Well when you get settled in and start looking for stuff to do, let me know, cuz I have lots of ideas. I just sent out letters to Oprah, The Osbourne family, Toni Braxton, Venus Williams, Nick Cannon and Brooke Shields inviting them to our next PJ Day. Don't know if you don't try - ha ha ha... Maybe we can chat on Skype sometime...

    Hammy, ask and ye shall receive... see attached, and use a magnet.
    Can't seem to attach it though... bugga. Well it's a spoon-o-meter poster to put up on your fridge. If you want it send me your email address and I'll send it to you.

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    Very late to this game.... Welcome Jo. I agree with what Hammy said several posts ago: get thee to a Wegs specialist!

    If you only had sinus and ear congestion problems I'd say the pred dose sounds too high. But with moderate to severe hearing loss it might be justified. Dr Jayne will know for sure and make sure you have the best ENT as well.

    I was treated horribly by so many doctors along the way. So many of us have been. There is no excuse for it, but the good thing is that you'll get better at standing up for yourself in an assertive and non-aggressive way. That's a useful life skill, Wegs or not.

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