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Hi Tara just wondering how your feeling?  How is it going at work?

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    Hello there I am doing ok down to 7.5mg on the prednislone they have upped the MMF But I am feeling a bit of fatigue coming on legs really heavy and the nose bleeds starting again. This sometimes happens when they lower the the Pred fingers crossed that's all it is. Still at work and enjoying it so don't want to be beaten by GPA. I am starting back with my studies and hopefully can keep going. Have been resting this weekend. How are you doing hope all is going well with work and you are coping ok take care and keep going at your own pace 😊✌️
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      Hi Tara:  What is MMF?  Fatigue yes unfortunately how do we get rid of this, honestly between low iron and now Wegener's I don't have a clue what it feels like to not be tired.  I had two nosebleeds last week but I'm blocked in my left nostril and patiently waiting to get into a specialist, I blew my nose real hard for a bit both times though as it's aweful being this blocked up.  Have real bad allergies, have had allergies since in my 20's.  What really knocked me on my butt was a very bad sinus infection (two sets of antibiotics and wondering if it's  gone 100% yet).  Beaten by GPA?  Excellent, you go girl I've been wanting to go back to school for a while, I just can't get myself to do it as I did 2 years of night school (College) with working full time and found this difficult.  Back at the gym again, but really have to up it a notch.  Yes I'm back at work, into my 9th week full time, it's been difficult but I'm extremely glad to be back, couldn't sit in my house and think about this disease so much, not good.  Yes rest is very important I'm trying to get my rest also, don't get enough sleep during the week, need to work on this, my sleep always broken up with washroom trips.  I switched my meds recently (Thank God) I was so exhausted on methotrexate.  I'm taking Apo-Azathioprine.  Apparently Wegener's affects our joints, I know what you mean with the legs.  Re:  Cardio I have to get back at regular cardio got away from this when I got the sinus infection, back on weights but have quite a way to go.  Great glad you are enjoying working, talk to you soon, just been really busy so not checking the forum very often.  Take care smile


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  • Posted

    Hello glad to hear you still working and I love the

    Way you said you not going to let WG beat

    You. I not working I just don't know what to

    Do anymore I really want to study but I want

    To do something at home I just feel stuck.

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    • Posted

      Hi Dona:  My mother has been through so much, it started with her having a fall in Oct of 2013, she has been in and out of the hospital, now staying at my sister's place.  I will admit I've had my moments especially when I had too much time to think about this disease.  My mom is diabetic, she has had hip surgery at 74 I believe, same leg left leg, fell and broke her femur in 3 places.  She has never walked again unfortunately (aweful) but she is my inspiration, I can not believe how much she loves life with everything she has been through and she is on a trake and dialysis now. We almost lost her in ICU at 1 point. She said to me about 6 weeks ago (Toughen up)!!!  No kidding, she is so funny (never lost her sense of humour through all this)  She is a hoot seriously.  Now I say to myself, if ma can get through all this, I don't think I'm doing so bad, I pray often though, but I mean I'm walking, still able to do treadmill back at work, strength (surprisingly I think I'm stronger than before) how is this possible, I think because I'm very determined, now I have a way to go but I was in shape before and have to get back there.  For now, get your rest, just a suggestion, maybe find some hobbies you really like.  Go out with your family and friends for dinner etc.  Try to fit some exercise into your day and I think over time you will feel better.  You will probably be able to get another job soon, maybe you just need to rest for now?  Just a suggestion.  Take care smile
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