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Thread: Worst things about having Wegener's granulomatosis

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    Default Worst things about having Wegener's granulomatosis

    Worst things about having Wegener’s granulomatosis:

    On a support forum for diabetes I saw a thread on things people hate most about having diabetes. It got me thinking about the most irritating things that come with having Wegener’s so here is the start of my list in no particular order:

    1. Having to learn to spell it so you can write it on medical forms, emails, and other places.
    2. Never knowing if that cold you just got is just a cold or start of new flare.
    3. Never know if the pain in your joint means Wegener’s is coming back. Never knowing if any new pain or symptom means something bad might be going on.
    4. Having to try explain to people that auto-immune disorder doesn’t mean your immune system is too weak. It just doesn’t work right so you have to take dangerous meds to try keep it weak and subdued.
    5. Having to takes lots of different meds with undesirable side effects just to stay alive.
    6. Being your pharmacists best customer and having to support a number of health care providers so they can take trips with your money while you can not travel anymore.
    7. Having to adjust to various losses in your ability to function due to damage from the Wegener’s such as loss of hearing, trouble walking, poor balance, lack of endurance, etc
    8. Having emotional meltdowns from number 7 or effects of prednisone.
    9. Having a good day means being able to get out of bed and engage in some activity for a couple hours even if it is at a very slow or limited basis.
    10. Having to try educate or explain to some doctor, other than your treating rheumatologist, what your symptoms might mean or what treatment might be needed. Why you are concerned?
    11. Hearing people say you look better now that you gained some weight after you gained 50 pounds from being on prednisone,
    12. Seeing how you look in the mirror after your weight gain and not having any clothes that fit. Feeling you have to eat again three hours after eating a big meal because of the prednisone.
    13. People not recognizing you because of your new new look with nice moon face and Buddha belly. Maybe this is a good thing sometimes, but not when trying to cash a check at your local bank.
    14. Wondering why you had to be the lucky one out of 25,000 to get this nice disease?
    15. Having to give blood and urine every week or two so your phebotomist looks like your best friend.
    Last edited by drz; 03-12-2011 at 12:36 AM.

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    13. ha ha. Customers used to come in to my work and ask me how my sister was? I dont have a sister. I figured out that they thought i was my ugly larger sister. once i figured this out i would answer " great". she is on vacation.

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    Thought of couple more:
    16: Being germ-a-phobic because of weak immune system. Having to cancel social activity because other people are sick and you need to avoid them. Having to wear germ mask when going out due to low WBC.
    17. Being afraid to travel cause you might get sick and they won't know how to treat you. Fearful of flying since it is bad place to catch germs.
    18. Checking for blood when you cough or urinate cause....

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    19. Telling people that chemo is just not for cancer patients and then explaining that WG is not cancer 'cos they just don't get it.
    20. Having to take some kind of pill every hour of the day, seven days a week for the rest of your life.

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    Heck I have to wear a mask regardless of my WBC...per Mayo I basically have no immunity now...up side ...my kids try to make lips on them t dress them up some.....so i look like a clown with a mask...could be worse .....

    21. Missing out on those favorite restraunts for special occasions cause you have little or no immunity to keep WG at bay!!!
    22. Movie theater popcorn at the movie theater watching a movie with my kids.(making it at home is just not the same)
    23. Overdoing it because you want to do something with your family then sleeping days away to pay for it.

    Lastly from me:
    24. Explaining to your kids that even if the meds make you sicker it is actually helping you get better...then you don't get better...you just may not get worse!!
    Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!

    My mojo for today.....gonna be johnny apple seed and just keep planting
    Lisa Marie
    The happiness of people is not necessarily to have the best of everything...but make the most of what you have!!

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    25. Feeling tired and exhausted from walking up a dozen steps or any other"strenuous" activity.
    26 Being sick and tired of feeling sick and tired most of the time.
    27. Having to qualify or hedge any social engagements cause you don't know if you will be up to doing it.

    I bet we can get a hundred so keep going.

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    28. The look of pity you get from people when they ask you how you're feeling...I know they mean well, but I hate that look.
    29. Trying to find clothes in my closet that hide my extra 20lbs that Preds has so kindly bestowed on me.
    30. Bruising easily from all the meds...I'm clumsy and run into stuff all the time.
    31. Not being able to spend time with my nieces and nephews because they carry too many germs.
    Nicole

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    32. Staggering when you walk. If you don't have a cane or walker, they think you are drunk.
    33. Seeing the anxiety in your family members who worry about you.
    34. Feeling guilty because you need so much help and can't do much to help anyone else.

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    35. Having shaky hands from the Prednisone.
    36. The Crusties - only a Weggie knows!
    37. No two Weggies having the same symptoms.

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    Nice thread Drz

    38. Having to learn how to pronounce wegeners granulomatosis
    39. Listening to someone you have told the name of the illness, correcting your pronunciation!
    40. Having to call for a first aider to stem the flow of blood coming from that clever 'buggers' nose after a touch of pred rage!
    41. Not looking as ill as I feel.
    42. Knowing that you have no real reason for feeling depressed & grumpy but you are.
    43. letting a loved one know that 'it's not funny' and your pred rage is taking a 'fast lift upwards' and they don't listen!
    44. Loved ones don't talk to you all week just cos you 'blew your top' when they were only making a joke!
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



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