I had severe insomia when i was taking high dose of prednisone. I took naps and looked forward to them.
Yeap! I have a sister-in-law who is convinced that "because I look ok", then I "must be ok" and she tells people that the disease I have is "no big deal".We look OK, so we are OK.
As for the answer when I am asked how I'm doing, I usually say "good days and bad days, but no worries". If they want to know more then I tell them....
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
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o joy and o joy. we had a bday bbq for my papa inlaw and my handicapped nephew asked my if my face hurt when its gets swoled and red like that. o my i laugh and cryed all in one... the joys of pred i gess.. lol
"My daughter is closer to me than my skin.. she is the arteries to my heart.. she is my life line.. The reason I breathe.."
I find some people are geniune and then others really don't care. Some others put on an act that they care but really don't. For example. A friend of mine recently sent me an e-mail saying quit reading into everything so much, you are driving me crazy, and can't imagine how you treat your docs. Well, I soon set him straight and said: when you ask about my day and how I feel and everything about my diseases, etc, are you really interested or are you just bullshitting me? He said he really does care but though I am reading into things too much. I asked what he meant by that and he said I worry too much. I said it is hard not to worry when you have Wegs, no hearing, and deadly lung infection, and many other things to deal with. I felt like punching him.
I have some other friends and family that are just great and want to know how I am doing what is going on week to week.
Then there are others that say all I need is to go out and find a job.
Phil Berggren, dx 2003
Phil, you have some good friends and family and that is all you need. The other don't matter, just got to keep moving forward.
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