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Thread: New Flair

  1. #1
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    Default New Flair

    I've been playing ring around the rosie with my Doc friends, finally went to my Rheumy yesterday who recognized immiediatly that I am flairing and took contact information to contact Dr. Langford. He got me in last night for 1st infusion of 1000 mg IV Pred, have another one today and one tommorrow. I am already responding to treatment. Could shower without having to stop midway to sit down and breathe. Could sit up straight for entire morning conference (30 to 45 minutes) withought having to lean back for chair support. Can touch kidneys withought crying. He is taking over as the driver, I think my pulmo and nephro will be relieved to be only consults. I feel hopeful, not happy that I had first flair during high dose po pred and 250 mg cytoxan a day, but happy to be responding to pulse steroids. My collegues have sequestered me to my office, I know it is to protect me, but may be a self-defense mechanism on their part also they're a little scared of me on that high dose since they have been part of my po ride and they curse the coffee shop if they sell me anything with caffeine on a normal day. (LOL).

    I know, I know, that I should have done this a long time ago and I may have made things worse. Nurses are stubborn, I'm stubborn but vow to not be so stubborn and stupid.

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    I'm not so sure that you should be working with that much Pred inside you! It is a huge dose and usually only used in crisis.

    In the past, I have been on pulsed Pred and also pulsed CTX, but this method was not effective for me. Daily oral worked much better.

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    Lightwarrior, I agree with Jack that it's not a good idea for you to be working. You need to rest! (Though I'm sure the pred is telling you you're fine fine fine...) I'm gonna nag you on this, so prepare thyself.

    Don't be hard on yourself for not taking action sooner. Just learn from it and try not to repeat it. We all go into denial very easily. Very glad your doc is going to call Dr Langford. If you're on ctx and high-dose oral pred but your Wegs is still worsening, they need to change drugs.

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    OHHH the nagger is here ...I agree with Jack. You should be home in bed resting. You are flaring with WG and need to rest. I am a RN, but I learned my lesson. Lightwarrior...I know you are very intelligent...but you have to take care of your self. Can you do short term disability? You need to see Carol Langford and get her to look at you physically. I know you have people there who love you and would take you there, I sense that. It will all work out...need to take care of yourself first and your family will be fine. Let others take care of you, I know that it is hard..cause you are use to taking care of others.

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    I agree with Elephant that it's best to see Dr Langford in person.

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    Quote Originally Posted by elephant View Post
    Can you do short term disability?
    I have short term and long term as a benefit, the problem is that it does not cover insurance. I have carefully guarded my extended illness and time off benefits to keep a month in the bank, if I go over that month disability would kick in at 3/4 my normal salary (okay) but my cobra would be $1496.00 a month for insurance that isn't paid if I'm out of my eib/time off. That would be impossible, which would mean a lapse in insurance, inability to get meds, etc. etc. I am not working very hard, and have the option of a sleep room if I need it here or my office has room for a recliner. I have to guard and build my time off so I play the Insurance game correctly.

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    sorry to hear things not been so good lightwarrior
    like you i sometimes use the word im fine
    got bloods results back today rang wg consult to tell him
    he didnt ring back so took it no news good news even though from looking at them even i knew things not quite as usual
    BUT he did ring i have to have bloods done again first thing tomorrow
    low platlets etc im on ctx and high preds again thought things where looking up
    please take care of you i understand about work i told mine id be of for two weeks back in jan when i had kidney biopsy
    still not back wg consult and own gp keep telling me no because your not stable enough i work in schools and get full pay for the first six months
    hope u are feeling better soon DEE x

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    Yea, I agree with you Lightwarrior...you don't want to be homeless. So glad you have the option to sleep. I totally understand the insurance game. Get to Carol Langford please...you will understand why when you go.....you feel that you were really seen and heard. It is worth the trip! Praying for you to get better soon.

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    It sickens me (more) to know that you can't take adequate time off because of stupid insurance issues, Lightwarrior. This is heartless and wrong. I'm so sorry---

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    Quote Originally Posted by Sangye View Post
    It sickens me (more) to know that you can't take adequate time off because of stupid insurance issues, Lightwarrior. This is heartless and wrong. I'm so sorry---
    Not just for us, but for all of the others who have already lost the insurance game... it is why we need to stay strong and advocate for health care reform. I consider myself lucky that I know the game and can still manipulate it, there are so many others who can't. Thank you for always thinking with your heart.

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