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Thread: Just in time!

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    Default Just in time!

    First rheumy appointment tomorrow. Typically by the middle to end of last week (after 4 weeks of felling bottom of the heap) I started to look and feel much better. Lack of symptoms and a negative ANA were worrying me, although I know I had my raised ESR as something to start with. So I did something very silly. I'm not advocating doing this but I panicked that the doctor would just try to brush me aside. So I went out in the sun with no protection. Just did the normal routine school run and a bit of shopping. Didn't sunbathe or anything. About 30 minutes and it's done the trick. By yesterday the bus had been back and run over me. All the aches and pains are back with avengeance! And as if on cue today, my face, chest and hands have broken out in a rash. Like I said, I wouldn't recommend that anyone do this but I feel as if I can walk into my appointment and say to the doctor "look at me!"

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    Hello Sharon,

    Best of Luck mate with tomorrow and look what you've done NAUGHTY NAUGHTY to get noticed, i'm just having the crack mate but it just makes you wonder if you do look better some won't believe you but how you've broken out, he/she can't ignore you now.

    Please keep we updated & all my love with tomorrow, i'll be thinking of you. xxxx

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    I totally get what you did. Don't do it again - but I hope the risk you took will ultimately give you the help that you so desperately need. There is nothing more frustrating than being miserable, and then feeling better as soon as your appointment comes and having the doctor brush you off. Please let us know how the appointment goes.

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    Quote Originally Posted by Shaztwirl View Post
    First rheumy appointment tomorrow. Typically by the middle to end of last week (after 4 weeks of felling bottom of the heap) I started to look and feel much better. Lack of symptoms and a negative ANA were worrying me, although I know I had my raised ESR as something to start with. So I did something very silly. I'm not advocating doing this but I panicked that the doctor would just try to brush me aside. So I went out in the sun with no protection. Just did the normal routine school run and a bit of shopping. Didn't sunbathe or anything. About 30 minutes and it's done the trick. By yesterday the bus had been back and run over me. All the aches and pains are back with avengeance! And as if on cue today, my face, chest and hands have broken out in a rash. Like I said, I wouldn't recommend that anyone do this but I feel as if I can walk into my appointment and say to the doctor "look at me!"
    First let me say that I do not recommend the type of behavior because it can cause more trouble then it is worth. Having said that... I did almost the same thing and it was actually recommended by someone with lupus. Too often by the time the doctors appointment comes we are out of the flare and everything looks fine! I had someone tell me to make my doctors appointment in the afternoon and make sure that I had been in the sun some in the morning. The reason for this is, for those having a difficult time being diagnosed, it can bring the inflammation levels up so that when the blood work is taken it will show a more active disease.

    Once again, I can't recommend this but I do know why you did it and that it has worked for others!
    Mari

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

    ~Winston Churchill~







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    Shame on you! End of mom lecture. Lupie me understands why you did it. Sad that we often have to resort to desperate measures to get the doc's attention but we do what we have to do. I know you'll not do it again and I'm sure I speak for many here when I say that I'm more upset we have to resort to such measures more that we are upset that you did it in the first place. Best of luck with your rheumy! Do let us know how it goes.

  6. The Following 2 Users Say Thank You to ruziska For This Useful Post:

    magistramarla (06-07-2011), tgal (06-07-2011)

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    Ruziska said just what I was about to say! It seems that we have to knock most of these docs over with obvious symptoms before they will listen to us.
    I hope that yours paid attention to you.
    Please let us know!
    Hugs,
    Marla

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    A harsh spanking with a wet noodle to all of you who've done this!! Now, let me say that I completely understand and I feel that it is so unfair that we have to resort to this in order to get our doctors to believe us and take us seriously! But still...all of you get in line, my noodle is al dente and ready to admonish its lashings

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    i am feeling sorry for you..............
    and laughing at all of our responses.

    only a sick person would understand what we do ourselves.

    pitty more doctors dont get our symptoms..... even for a day.

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    Thank you all for the admonishment! (Can't believe I found that big word at this hour of the morning)! I know it was a silly thing to do and I am suffering for it but I'm glad and also very sad that you all realise why I had to do it. It will be something I never do again. Now somehow I have to make it the 60 miles to hospital by public transport with 3 different kinds of back pain, a red blotchy face (with no make up) and aches and pains all over. Dreading it. Serves me right. Thanks for the support. Will let you all know how it goes

    Sharon
    xxx

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    I totally understand as well. While it seems like a silly thing to do, lets analyze both this situation and the alternative.

    The alternative: Shaztwirl walks into the doctors office in pretty good shape, not appearing sick and testing borderline. Specialist says he isnt convinced and asks her to come back in a few months for a review... if she doesn't get the good old brush off that is. This means months extra of untreated and undiagnosed lupus. This could mean some terrible flares in the mean time.

    The situation: some sun exposure has caused obvious symptoms, there is a good chance it will be represented in her blood work and the doctor can see her symptoms for himself. It might just tick all the boxes to get a diagnosis on the spot (fingers crossed). Treatment will begin sooner, possibly saving her from a few possibly nasty flares.

    I know its naughty... but... i would do the same.

    Many hugs! I hope this is a big stepping stone towards diagnosis : )

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