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Thread: How does your Wegener's Affect your Family?

  1. #21
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    Thanks Elephant, Doug, and Sangye and all the others out there. I will press hard early Monday morning to get my appointment with my Rheumy. I had all my regular blood work done today as well. Most of the results should be back within 48 hours and the ANCA takes about 2 weeks or so depending on holidays, etc. I get the usual blood work done like CBC, blood creatinin, CRP, ESR, etc. My last blood work was the end of November so that is fairly outdated with respects to how fast WG can move. If this does turn out to be a flare I will certainly have learned a lot again from a flare by how different each of our own flares can be within our own bodies not just person to person. I should have pressed harder about 3 to 4 weeks ago. I had already had the sluggishness and joint pain and worsening sinuses. I should have taken action then but I think I was a little bit in denial and affraid to face another flare so soon again with the Cytoxan and Pred. Even though I don't like the Pred I could hardly wait to take it again today because I know the positives of it and the negatives of WG. Yes Doug the sinus issue for me has been the most prominent and problematic issue of all and has led to other problem areas as well. Keep that finger pointing Doug.

    Love to you all,
    Phil of the north

  2. #22
    Doug Guest

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    The finger points at me, too, Phil! I think your response to symptoms probably is typical of us all.

    p.s. I hope it's a false alarm!

  3. #23
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    Phil, don't beat yourself up about it. Like Doug stated most of us have been there and done that. So we just don't want it to happen to you. Keep your chin up you will get through this.

  4. #24
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    LOL-- And now that you're back on pred, keep your chinS up... (ok, not so funny on some days. most days.)

  5. #25
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    I could add to this thread having a family and all. My kids say that moms meds are making me wacky. I was really already off the wall kinda wacky. So now............ Getouttheway!!!!!!!!! My husband only knows what I can tell him a sentence at a time and no more than one a month. Dont see him much because of the split shift routine we have and have for over ten years now. I miss him and he knows it because I tell him when I do see him on the way out of the door. the big kids are better 14,13,13 but the 7 year old is 7. So if mom is sick or doesnt feel well then thats what it is. The house falls apart and the days go by. Someone might relieze the dishes need to be done after the sink fills up a couple days but thatsabout as far as it goes at this point. Theolders do more with the seven yearold now but only because I beg them or bribe them too. Otherwise my mother is worried for me for a change and the world keeps spinning!!!!! Keep working because I am afraid that if something where to happen my family would be on the Titanic sinking. i need to getrid of our dept so that they can be okay later. So I am trying to clean up lets say so that everything is more manageable when I cant work like I can now. Until then I guess I ride the crazy train.

  6. #26
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    The crazy train, sound familiar. We all do what we have to, with a family of youg ones it is impossible (yes it realy is) not to work a full shift at home. I am glad that my kids are old enough not to need supervision or regular care. My hat is off to onatreetop and everone else with children. Nevermind caring for a family but to work as well is amazing. Besides Jack, who mentiones his daughters often, it is the ladies who cary the home load. I appreciated how silly the request to "take it easy" or "you must rest" is for you. Yes the dishes can pile up , dust bunnies gather but in reality once all the dishes are dirty they still need to be done, and by whom, well by you. So this sentiment of our families to rest is misplaced at best. On that note I now I'm lucky that all in my family understand that mom has to stop once in a while and put up her legs. I even get a tea from my hubby on those occasions where for the last 25 years I can count how many teas I got on one hand.
    Jolanta

  7. #27
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    Onatreetop,
    Why aren't those older kids taking care of the dishes and cleaning? That's ridiculous! It's true that you won't be able to sit around or rest the way you need to, but they are perfectly capable of contributing to the workload.

    They don't lose their childhood by helping in the home. My sister and I did all the cleaning from the time we were in 5th grade or so. We cooked many of the meals, always did the dishes. It was automatic. As soon as everyone finished eating, we got up and did the dishes. No pleading from our parents. It was expected. We both had tons of free time for friends and activities. I was very involved in music and sports in addition to being a strong student.

  8. #28
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    I understand the difficulty of getting children to do chores if they have not been brought up with the idea. Mine are as different as chalk and cheese. One will do anything I ask and is eager to please, even more so if it involves earning some money. The older one (coming up for 19 and about to go off to college) is a master at finding something else to do that makes her too busy to help. However, she is very organised and tidies up her room when it starts to annoy her. Perhaps being away from home and having to look after herself will bring out her more practical side.
    In the meantime, most of the burden falls on my poor wife.

  9. #29
    Doug Guest

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    For all your wife does, Jack, she must be one fine person. I believe I know you well enough by now to say that I bet you let her know that, too! I propose a second category of people weggies must meet other than each other: the spouses and children of weggies, but especially the spouses.

  10. #30
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    I have been working on them but like Jack said they werent expected to so now it is easy to find the busy work so I dont ask. I have one who is eager to please, another that is border line and one that is a zombie and harding leaves his bedroom,the oldest. The little one works againist all of us. I am not the best at making sure everything I pull out gets to the proper place either but am more aware than the others. Only because I know I am the one who will deal with it again later. I am just complaining but if they did more without pushing so much , how nice that would be. I am glad that I can still do everything I can too. Very thankful. So......................riding the train and sometimes it is bumpy and sometimes its smooth I am on for the ride!!

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