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Thread: Tips for Dealing with Doctors

  1. #11
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    I'm glad you're doing that, Tom. I did it for several years and then stopped the past few years, because I felt I had developed a good grip on my background Wegs symptoms/ symptoms from other complications that are always there, and anything new cropping up. For the first several years those things threw me for a loop on a regular basis. Because I didn't get into remission for several years and because my remission is always pretty tenuous, I just couldn't tell what needed to be reported and what was gonna be normal for me. Keep logging that info for as long as it helps you and your doctors.

  2. #12
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    What a great idea, maybe if I use this I won't confuse myself or the Docs. It would be so good to walk away from apt one time with a clear idea of what's really going on. To both of you thanks for sharing.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  3. #13
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    Docs will help your Docs!

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    Quote Originally Posted by Green Grass & High Tides View Post

    If anyone wants a copy of my Google Docs spreadsheet I made a copy here: https://docs.google.com/spreadsheets...it?usp=sharing

    Not sure if it'll help but thought I'd pass it on.

    Best wishes to all,
    Tom
    Love the idea and spreadsheet. Thanks for sharing!

  5. #15
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    Here's some advice from Cleveland Clinic about patients' expectations of their doctors...

    https://health.clevelandclinic.org/2...m-your-doctor/
    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

  6. #16
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    Could you by any chance explain what the 3 different color sections and the abbreviations are on that wonderful spreadsheet? I can figure some of them out, but since I'm a newbie not sure if some of those columns are abbreviations for medications. By the way, I think that spreadsheet is worthy of a "sticky"! I came back looking for it after browsing the site earlier.

  7. #17
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    Quote Originally Posted by PANDASmomx2 View Post
    Could you by any chance explain what the 3 different color sections and the abbreviations are on that wonderful spreadsheet? I can figure some of them out, but since I'm a newbie not sure if some of those columns are abbreviations for medications. By the way, I think that spreadsheet is worthy of a "sticky"! I came back looking for it after browsing the site earlier.
    Hi PANDASmomx2- Sure, thx, glad if it helps. It a starting place. Anything can be added. I just like it because I can see the whole month on one page. If I highlight just the wegs activity over a level 5 then it shows a clear picture to the Doctor of where the disease activity actually is.

    BLACK: The first section is black columns, those were some of the meds at them time. They change. Currently its' MTX, Pred, Folic Acid, Flonase, Kytril or Zofran (nausea), Vitamin B complex, D Complex and Green (I drink spirulina and juice which helps me)

    RED: The second section is RED which are for activities -Sleep, Exercise, Mood, Energy, Negative / Positive Level; all on a scale of 1-10, except exercise which I track with the minutes of cardio / anabolic (weights, muscle exercises).

    BLUE: Wegeners symptoms. These are the most pressing issues for me to track at that time. The biggies for me then were GI, Nausea, Neuritis, Lumbosacral, Fatigue, Weakness, Eye, Ear, Lung, Sinus.

    SYMPTOM NOTES: Any additional issues or siginificant things for the doc.

    ALP: Was for alprazolam which is xanax, which I was afraid of taking. Eventually had no choice since it counteracts some brain issues I have from Prednisone. So I would put any addictive medicine at this spot. This makes it easy for myself and others to easily track it. Since I have a Adverse Glucocorticoid Reaction to Prednisone and not the ordinary energy aggressiveness, it have been charting all of those medication on that right side of the page. This is because I see a number of other specialists for those. I want my Rheumotologist to see it and be aware but I also needed an easy way to separate the wegs symptoms from the medication reaction.

    I've done this for two years and it has helped immensely. Especially since I suffer from a fatal case of "wishful thinking". I often go into the doctors office and will remember the past month or 2 months as "not so bad, I did pretty good." Then we will look at my chart and see that the Lungs had a flare, the eyes had wegs activity, the neuritis jumped and affected the lumbosacral pain and the GI had 3 cases of significant bleeding.
    That's a big difference.

    The biggest help it has given me is to see that Rituxan didn't work. Cytoxan didn't work. I'm limited to 2 activities a day 1 healthy, 1 family. If I do more I get sick. The chart clearly shows this every time. So I'm accepting that. Now. And all its implications. If I didn't see it in my own handwriting I would never believe it.

    My wegs life boils down this:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

    Best wishes. Would love to hear how you are?
    Tom
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

  8. #18
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    GREAT post...thank you so much for sharing. This helps me with what to ask for my next appointment

  9. Likes Alysia, Jaha liked this post
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