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Type: Posts; User: Deborah T

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  1. Replies
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    Alysia - It's bad enough to feel like crap - but...

    Alysia - It's bad enough to feel like crap - but it is insult to injury to be treated like crap too. Please, report the "doctor" (and I use the term loosely), may even want to send a little note to...
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    Greetings darl-p & Welcome :smile1: I'm...

    Greetings darl-p & Welcome :smile1:

    I'm fairly new to this support group and have been vastly encouraged by fellow Weggies. I had complained bitterly to my docs about fatigue and was told,...
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    Lilly - Life truly is a gift. I think the only...

    Lilly - Life truly is a gift. I think the only thing I "like" (and I use the term loosely) about Wegener's is that I can rejoice in each day that I feel good. I don't take the good for granted, and...
  4. Hope you feel better soon. It really sux doesn't...

    Hope you feel better soon. It really sux doesn't it? You have friends in this support group who know exactly what you are going through. I completed my RTX IV treatments last month. Last week I...
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    Alysia- Looking sick is superficial, you can...

    Alysia- Looking sick is superficial, you can dress up a corpse and put on just the right makeup for it to not LOOK sick. Doctors ... jeesh. What is important is your labs.
  6. Thread: Feeling blch

    by Deborah T
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    I'm prim bread-winner. Spouse semi-retired with...

    I'm prim bread-winner. Spouse semi-retired with no benefits. I'm afraid of losing my health care benefits. Will graduate from Master's program in 6 weeks. I just have to hold on until then. Am...
  7. Thread: Feeling blch

    by Deborah T
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    Feeling blch

    Hi fellow Weggies -
    I have been off on temporary disability since Feb and am anticipating going back to work Wed, April 2. I did however teach a class last Tues and last Thurs and was absolutely...
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    is the staining on the gumline between the teeth...

    is the staining on the gumline between the teeth or just between teeth?
  9. Hi Andy - I work M-F so I take my MTX Friday...

    Hi Andy - I work M-F so I take my MTX Friday nights to deal with any s/e over the w/e. I have waste-long hair and did NOT want to lose it and am on one megadose Folic Acid qwk. I used to get GI...
  10. Thread: Protest

    by Deborah T
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    Hi Nikki - It has been so long since I've...

    Hi Nikki -

    It has been so long since I've felt "normal" that I can't remember what that feels like. I hate medication too.....and I love medication. I can't imagine where I would be without it....
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    Alysia - I admire you for working in that...

    Alysia - I admire you for working in that environment. I am an RN and am scared to death of working in the hospital environment. I may succumb to working at home in triage, which is so not what I...
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    ARGH! I don't think people get it. They have no...

    ARGH! I don't think people get it. They have no idea that a simple cold for them may mean pneumonia for us. I work in a health-care agency. I will have people stand in my doorway and say, "I...
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    That is SOOOOO hard. I work in a building with...

    That is SOOOOO hard. I work in a building with hundreds of people. I am scared to death of catching what is lovingly referred to as "the office cold" when they come around. You are lucky that your...
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    That's awesome Alysia. Our office has a strict...

    That's awesome Alysia. Our office has a strict no pet policy...except for our CEO who brings in her dog on occasion. I would LOVE to bring in my cat or dog. They are (usually, lol) very...
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    FORTUNATELY I have my own office. On my lunch, I...

    FORTUNATELY I have my own office. On my lunch, I turn out the light, turn off my phone and take a 15 minute power nap. It actually does help. Good advise :-)
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    I am in my very last semester for my Masters...

    I am in my very last semester for my Masters degree in nursing education. I am on sick leave from my job but anticipate being back in 2 weeks. I am exhausted just thinking about everything I will...
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    I have a boss who always tells me I look great. ...

    I have a boss who always tells me I look great. I even had the misfortune of having a CVA (stroke) while working one day in the office five years ago. When I told my boss I was seeing double and...
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    Dear Nikki - I think many of us have those pity...

    Dear Nikki - I think many of us have those pity parties of one. We are all in the same boat on some level. WG is a nasty disease that you did not ask for. Each day is a crap shoot - will I feel...
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    no. we are about 60 miles south of buffalo

    no. we are about 60 miles south of buffalo
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    Nasal Septal treatment

    Anyone using anything to help with nasal septum perforation - saline isnt working that great...need to keep the inflammation and infections down...down...down...
    Thank you - Deborah T
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    Support Group / Rochester NY

    Anyone live in / near Rochester NY that would be interested in meeting for support?
    Deborah T.
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    Hello Jay - So sorry to hear what you are going...

    Hello Jay -
    So sorry to hear what you are going through. :sad: Not all rheumatologists are "into" WG. I recommend talking to your primary or pulmonologist for a different Rheum for "2nd opinion"....
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    Hi Kim - Following my last dose of RTX, my Rheum...

    Hi Kim - Following my last dose of RTX, my Rheum put me on Mepron, 2 teaspoons / day x 1 month, then 2 teaspoons a day 3 d/wk (for life). "This medication is used to prevent or treat Pneumocystis...
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    Hi Mary- It took me 7 weeks to complete my 4...

    Hi Mary-

    It took me 7 weeks to complete my 4 weekly doses due to fevers and lung congestion. Rheum won't give the RTX if any indication of infection. It did not make a difference, per my doctor,...
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    Greetings fellow RN - I am a Weggie and a...

    Greetings fellow RN - I am a Weggie and a practicing RN. It's hard to know so much and so little about a disease at the same time. Praise God that your dad does NOT have a malignancy. WG is easier...
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