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Thread: What have we learned about living with WG/GPA?

  1. #11
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    Randy,

    I understand. I've experienced much of the same phenomena with respect to dreams of the future. Fortunately, my here and now is populated with two little grandkids who help keep me focused on what's happening now!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  3. #12
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    Aging...such a concept...at any rate or stage...sighs...
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Great Idea!! Thanks for sharing!
    Sheila-dx and delivered baby Joshua January 2013 (Welcomed Baby Joshua)
    Follow my blog: http://charitymartinsfitnessjourney.tumblr.com ( a blog/daily journal about diet, exercise and health while being a wife, mom and WG patient)

  5. #14
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    There was an earlier thread on same topic about two years ago or so. I bet much of the things are the same but our perspectives do change over time.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #15
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    What have we learnt?
    Well compiling a list as you've done is very difficult - this condition effects people so very different it's almost impossible to give advice that is suitable for all Weggies. I believe that's why this forum is so valuable. There is no leaflet or website that can give definitive answers on what to expect from diagosis, what treatment you will receive, etc, etc. The best chance of getting answers is to ask on this forum, there's probably at least 1 weggie that has a similar "version" of WG as you personally have.

    Having said that, there is always certain problems that all us weggies go through where your list is invaluable.

    The main thing I've learnt is problems with work and being able to find a suitable job, with understanding employers. I've had this condition since I was 17 and held down jobs until I was about 29. Unfortunately one too many relapses led to my condition becoming too severe too work, plus I ended up with more conditions (renal failure, heart failure, haemochromatosis, among others).
    The problem with work is that I truly believe that work is good for your health, but with WG I found full time extremely difficult. But I couldn't afford to work part-time (I have bills to pay). I believe the fact that I was constantly pushing my body beyond it's limits by working full time helped made relapses and a constant, slow deterioration in health inevitable.
    Diagnosed April 1995

  7. #16
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    great list, Pete I hope that andrew can make it a "sticky" one.
    my points to add:
    * wallking everyday
    * being in this awesome forum
    * praying to God
    (I hope I can say it without breaking any forum rules)
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #17
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    Quote Originally Posted by Pete View Post
    I've been thinking a bit about what I've learned about living with WG/GPA since I was diagnosed almost three years ago. I'll admit that I feel fortunate to be able to lead a fairly normal life style. I've had to make a few adjustments financially, physically, and mentally, but so far, everything is manageable ...

    1. You need to be actively involved in your health care. You are the case manager of a team of doctors who may practice in different hospitals in different cities. You need to make sure that your doctors can (and do) communicate with one another about your case. You need to make sure that all of your doctors can see your entire medical record at any time. (Sign the releases and make sure they are up to date.)

    ...
    I hope you find these thoughts helpful. Please feel free to add your ideas as well.

    Good luck and better health!!
    Could you elaborate about this? This being a new experience for me, I haven't really had to work with a team of doctors before. It is one of the things that I find daunting and unsure of. What are some of the things that you have done? What do I need to watch out for. Right now, I feel that I am a little novel, so I am getting a lot of attention, but I know that will eventually wane. In some ways, I want that, and in others, I fear that. I've not had to been too active in my own care before. Something new to learn, I guess.

    Just would like to hear your suggestions.

    Thanks,
    Brett

  9. #18
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    Hi Brett,

    Here a few things I've done.

    1. My docs at both Ohio State and Cleveland Clinic keep my records electronically. I've signed releases so the docs at both hospitals have access to my complete record. I also insist that I get access to them. Both hospitals provide on-line access via myChart. It works well for me.
    2. When I have a regularly scheduled doctor appointment, I have a written list of questions or concerns to discuss. I make sure everything is discussed, and that I understand what I'm supposed to do next before I leave.
    3. I remember that I'm the patient. If I don't get straight answers or if I get a sense that the doc is uncertain about treatment, I get more careful in dealing with the doc. If I don't think I can trust the doc, I begin looking for another doc.
    4. I've learned some medical terms related to GPA/WG to help me understand things better.
    5. I've found that others on this forum are good sources of information and advice. If I see that someone is experiencing similar symptoms, they also tend to report on treatments and outcomes.

    Hope this is helpful.
    Last edited by Pete; 12-27-2013 at 07:01 AM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  10. #19
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    This is a great thread!

    I found it when searching for the term "dipstick". I asked my rheumatologist if she felt my blood tests and urinalysis every 3 months would appropriately capture kidney involvement. She prescribed weekly dipstick checks for protein and blood in the urine with orders to have lab work if it comes out positive. I was wondering if anyone else used dipsticks and it seems like I'm far from being alone! I think the discussion with my doctor is another example of being your own advocate and working with your doctor toward better care. I definitely have more peace of mind with weekly checks.

    Another example of why communication with your doctor is so important - I wanted to go back to the pill form of MTX from the injectable because I was finding the injections inconvenient and troublesome. My joint pain made getting the bubbles out very challenging if not impossible and my husband was no better (like a bull in a china shop and accidentally flicked the needle itself instead of the tube). I found out that my sed rate was high (31 mm/hr). My doctor agreed to try the pills for a few weeks with more blood tests once I explained my difficulty and subpar compliance. I got my sed rate result back yesterday and it is back to a good range (17 mm/hr)! I'm glad I brought up switching the form of MTX. The blood tests show it was the right decision for me.
    Last edited by lag713; 07-25-2014 at 04:36 AM.

  11. #20
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    Quote Originally Posted by lag713 View Post
    I found it when searching for the term "dipstick"

    Dipstick is used very often in the Australian language. In fact my brother uses it fondly (or not) with most people.
    Dipstick is a name for an idiot/silly/stupid/crazy person.
    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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