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Thread: You're right, you have to be assertive

  1. #1
    Join Date
    Sep 2010
    St. Louis
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    Default You're right, you have to be assertive

    The ups and downs of prednisone is a common topic on our threads and while I know the side effects and I have the face of a chipmonk at the start of Chipmonk's Biggest Loser show, I've had to accept that I personally want quality over quantity. My rheum doctors have both told me to get off the pred. NOW and have been absolutely inflexible. My pcp is less rigid but wants me off of it too. Well, after this last hospitalization, the swelling, the super high doses of steriods just to get things under control, I really began to question all of these doctors' judgments.

    First, I can't breathe when I'm too low on steriods. Second, eating is a torture. My IBS kicks up, it hurts to process food and essentially the only food I can endure is cereal. Then there's the fatigue, pain, etc... You get my point. Well, I made a decision yesterday after a few days of being home, on a much higher dose of steriods and actually being functional for several days in a row. Until they give me an alternative that allows me to live some acceptable type of life, I'm taking the steriods. I spoke nicely to my doctor this morning and spelled out the differences between staying on a reasonable dose versus weaning off. We have a plan in place for a new rheum. doctor team and I understand that I may have to go off of everything to get a baseline, but until then, he respects my desire to stay on a higher dose just to have quality in my life for now.

    It took some excellent coaching from people on this site to remind me that I'm in charge of my care and I know what works for me. For the first time in a very long time, I feel empowered and that alone will contribute to me getting better. I don't consider prednisone to be my final answer but if I can improve my hour to hour living while I work on the bigger picture, an extra 20lbs or bloated face are not sufficient reasons to risk another hospitalization and the consistent consequences I face when I go off the steriods.

    Anyway, thanks for the help the will to grow a spine when it comes to the doctors!

  2. The Following User Says Thank You to serand4 For This Useful Post:

    Saysusie (03-04-2011)

  3. #2
    Join Date
    Dec 2010
    SF Bay Area
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    It's hard to balance assertiveness with respect. I have to watch my attitude and let the doctors do most of the talking. I've discovered that doctors don't like patients that talk too much. LOL I told my doc that whatever my life span is on prednisone that's what it is because my QOL is too low without it. I've been able to find a compromise with a low dosage and my symptoms still breakthrough but it's livable.

  4. #3
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    You go girl! I am so proud of you. We do have to stand up for ourselves because no one else will! As far as the IBS goes I have news. My new (old if you count when I went to him in my teens) GP said "You have IBS. No ever did anything about this?". So he gave me an antibiotic and another med (which I couldn't afford so he just wrote me a script for another) medicine and after about 1 week I was having normal stools (sorry if this is a TMI). I do have more cramps now but the new med is supposed to take care of that. It is amazing to me how they gave me pill after pill and all I needed was a pill to fix that issue!

    Once again.. proud of ya Serand!

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

  5. #4
    Join Date
    Jun 2009
    Long Island, NY
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    great job serand! really fantastic! it's hard to be assertive without being disrespectful or rude at times but it's so important too b/c it opens the lines of communication up when they are clogged.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.

  6. #5
    Join Date
    May 2010
    Thanked 312 Times in 251 Posts


    Hey serand4, as for the IBS, what I've had to do is what's called the "Elimination Diet". Oh, it's *yummy*! (ee-yeah, right) Actually, it's not. It's very bland. For protein, lean lamb, chicken, fish. Try to eliminate beef, and if you do eat it, it's supposed to be grass-raised & "organic". No hormones, no grain feed, etc. (now, that's *easy* to find... tic). Almost all the veggies you want, but no nightshades (tomatoes, peppers, etc.), no corn, no wheat, no rye... rice is OK... Anyway, after a couple of weeks of that, you add back in one food at a time and find what you can tolerate. It also helps with your glycemic index. Hopefully, it might be able to calm your IBS down. The problem for most folks, especially sle patients, is the medication that complicates things. Lupus by itself can cause some real issues in the intestines, but throw in some prescription & otc stuff, and you've got a "brew" going there. Anyway, the "goal" for me is to possibly get to something like the Mediterranean Diet, which while it doesn't feature double-cheeseburgers as the centerpiece of the diet, at least it has *some* chance of flavor in it... Pay no attention to that "heart" stuff they talk about on there... lolol - The diet has also been "implicated" in reducing the risk of cancer in people.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    serand4 (03-04-2011)

  8. #6
    Join Date
    Nov 2008
    Northern Illinois
    Thanked 1 Time in 1 Post


    Good for you!

    I know I have posted before about standing up for yourself with Doctor's. Reccently I "fired" my PCP becasue she would not work with my Rheumy. My Insurance Company nurse representative actually cheered for me over the phone when I called to explain the change!

    Keep in mind that Doctors, just like any other person has to earn your respect! If he/she does not repsect you and the fact that you know how you are feeling then perhaps you need to start looking for a new Doctor.

    Yes, I travel a little further and out more of the my way, but I found a PCP that will work with me and my Rheumy.

    YOU are too inportant to not put yourself first when it comes to your health care. If you do not fight for yourself, who will? (besides maybe Mom!)
    What lies behind us and what lies before us are tiny matters compared to what lies within us.

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