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Thread: Sometimes it just honestly sucks !!!

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    Default Sometimes it just honestly sucks !!!

    I went to a new years eve party last night. I think the timing of me finding this forum was just perfect. I came home and cried my eyes out. I felt so isolated. Because of the flare im currently having and being on pred i actually ventured to talk about my wegeners. Very rare for me. I just didnt realize how "normal" ppl think i am. So the responses were just completely dead ended. No questions. No nothing. Stare and change of subject. My year was very hard. Of the years ive been sick the longest stretch of just plain hard. So i mention that and ppl are like "so what was so bad about it" umm......you all know the feeling im sure. So i told my husband i guess if i want ppl to understand me i have to act more sick. I never have. Ive always tried to keep up with my peers. You know...do everything anyone else does. If my friends plan a ski trip and invite us, well lets go! (didnt turn out too good) I have 2 kids and my group of friends are moms with young kids. So ive tried to be normal you know.BUT I AM NOT!!!!! I honestly think ive denied it. I think i'd do well to acknowledge my sickness, and live within its means. Stop pretending and maybe in the long run be further ahead. I also must realize that my current 40mg of pred is effecting my emotions. So just maybe this post is pointless. I dont know. Maybe someone will read it and put it back into perspective for me. I know i cant be alone in this. Not anymore

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    Hang in there!! It gets better.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    If you are not usually this emotional, then it IS THE PRED. I used to hate the mood swings from tat darned stuff.

    I agree with Pete, hang in there! It will pass once the 'roids get out of your system.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    You are never alone here. As the others said, pred doesn't help with mood swings. Some days are ****, others are passable. Stop worrying what other think, you know how you feel. Enjoy the not so bad days, I drink the three beers my rheumatolagist allows me twice a week.

    Take care
    Terry

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    I think sometimes others need to know when we have a medical condition that may affect our ability to participate fully in the same activities everyone else does. I agree that people's eyes just tend to glaze over and they change the subject when we mention our illness by name.... they just cannot relate, it is nothing they've ever heard of, and we seem OK to them. So maybe it is better just to say " a health issue", "a medical condition", or "an auto-immune condition", and let them use their imaginations, or not. At least it would explain why we sometimes leave early or decline invitations to evening or day-long events. If they want to ask further, they may, and then we'd do best to keep the answers brief and simple. Very close friends should want to know the details, others will probably not be able to process the information. It is a tricky balancing act, and some of us on here prefer not to let on about our disease at all, if possible, and just try to live the way anyone else does. That's a personal choice. As for the prednisone and the emotional reactions, YES! That should improve when you get into the lower doses.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    So maybe it is better just to say " a health issue", "a medical condition", or "an auto-immune condition", and let them use their imaginations, or not.
    I use the line, "I have a rare auto-immune disease that has similar symptoms of Rheumatoid Arthritis, plus more."
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    People don't seem interested when I mention the disease until I tell them it is worse and more deadly than cancer.
    Once I get their attention, I tell them about the disease, but I still get some dead stares.
    I think people want to ignore the pain and suffering and live their lives in only positive things (dream world).
    What they don't realize is that there can be a positive life with this disease and some go into remission their whole life.
    Everyone could get along with all if they just take a moment to understand others.
    We all have different crosses to bare and some worse than than others.
    Working together makes us all stronger.

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    Quote Originally Posted by MikeG-2012 View Post
    I use the line, "I have a rare auto-immune disease that has similar symptoms of Rheumatoid Arthritis, plus more."
    That's good, Mike.... it does seem smart to mention it in comparison to another AI disease that they HAVE heard of, that they are probably familiar with through knowing someone who has it. And especially one like RA that is known for causing physically debilitating symptoms that limit the patients' activities. Unfortunately, some may think of RA as minor since so many have it, and may not be aware that it can be very severe and even life threatening in some patients. But it is a good approach that will help explain your physical limitations, and the "plus more" is an important addition.
    Anne, dx'ed April 2011

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    I'm so blessed
    You are not alone
    It's very hard understanding this disease ourselves let alone explaining to others
    But , you can't keep on as before & your friends I'm sure would love to help u
    I get fed up too but this site & all fellow weggies wrap their arms around me & then it's better
    Rant away if it helps
    👍


    Sent from my iPad using Tapatalk

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    We (us on the forum) have said over and over that the most often heard comment is "gee, you don't look sick". Some have responded by not talking about their disease and others have responded by educating people about the disease. I try to educate people. I tell them how the disease works, that it isn't something they can catch, how it makes me feel, that it can be controlled, but not cured, and that the drugs I take for it make me feel almost as bad as the disease itself. Not everyone is interested. Those who are interested are the ones I call "friends". The others just aren't important to me as I am not important to them -- its a win/win.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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