Dexamethisone

[pberggren1]

I hope you start feeling better soon Gwen. I so know about the pain when it is that bad. I hope they figure out what is going on soon.

[Sangye]

Gosh Gwen, it sounds awful. Aren't they treating it as active Wegs?

[gwenllian111]

my dad, who is my health care advocate, says I am not active wg - he is in denial! He says I have an adrenal problem or something, even though doctors can find no evidence to support that.

[vdub]

Too bad about your Dad. I'm not sure why he would be in denial over WG in favor of an adrenal problem. Both are serious and almost equally as bad.

I come from a large family and 5 siblings. One brother refuses to believe that WG is serious -- apparently because I look generally healthy. I guess I have to get down to about 90 pounds, be in a wheel-chair and be on oxygen. Another brother is always saying "you'll be fine". Actually, I don't think any of us will be fine. The diesease will progressively get worse.

I get pretty tired of other peoples' reaction, analysis, and comments on my disease.

[drz]

my dad, who is my health care advocate, says I am not active wg - he is in denial! He says I have an adrenal problem or something, even though doctors can find no evidence to support that.

My impression is that good doctors who are experienced with skills in treating GPA generally give highest priority to patients self report of possible symptoms in assessing the activity level or severity of the illness and base their treatment accordingly. Serious joint pain should be a red flag in most cases for GPA activity especially when x-rays show no other possible physical cause of pain.

[pberggren1]

Too bad about your Dad. I'm not sure why he would be in denial over WG in favor of an adrenal problem. Both are serious and almost equally as bad.

I come from a large family and 5 siblings. One brother refuses to believe that WG is serious -- apparently because I look generally healthy. I guess I have to get down to about 90 pounds, be in a wheel-chair and be on oxygen. Another brother is always saying "you'll be fine". Actually, I don't think any of us will be fine. The diesease will progressively get worse.

I get pretty tired of other peoples' reaction, analysis, and comments on my disease.

I hear ya vdub. So many people tell me I look great. But these are people that do not see me day to day. But most see me at least once a week and even they say I look great. Either they are blind or are being kind. For me it is the moon face and saddle nose and raccoon face that is most predominant.

[Psyborg]

I agree about the "you look fine". I actually had people telling me how great I looked when I lost about 40 pounds in a month. Nuts

[jola57]

I stopped responding to my family's " you look great, you dont look sick at all" and treating me like I could do everything that they can. It is only like last week when all of a sudden I am not available because I have to have kidney CT and kidney ultrasound, and go to my rheumy, then nephro, that I get asked but why, you look so good. I then proceed to say well maybe I look good but my body is not good and my kidneys are failing. We must live with this disease and it takes priority in our lives, but for others, wheather they are our closest mates or not, they have theri lives and their own problems. so because we do not look sick we are not sick. I guess everybody has gotten used to my appearance and cane, and do not associate it with illness but just with me on the whole. It's the same for all of us, and only when something happens that it dawns on them that we are not the same as them and not the same as we used to be. Before I was sick I knew this realtor who had Amyloidosis (liver disease) and she perpetually looked like she was 8 months pregnant. I was just as ignorant as everybody else and asked just like everybody "when are you due". for goodness sakes, she was over 50! We see what we want to see.

[Sangye]

That made me think of a woman I knew a few years back. Thirty-something, with a swollen abdomen that looked exactly like she was about to have a baby any minute. Everyone asked her when she was due, of course. She was adamantly opposed to seeing a medical doctor to figure out what was wrong, even at the urging of holistic doctors. She'd say, "I don't believe in doctors." Talk about denial.

Not surprisingly, she was incredibly judgmental about my "decision" to do the Wegs treatment. She even stopped talking to me after it became clear I was going the medical route, even though she had seen my attempt to treat it holistically nearly kill me.

What I learned from it is that most people are so terrified about their own mortality and susceptibility to illness that they will neurotically deny it in someone else. Like "If no one else is sick, then I can't possibly get sick, either."