Illness bingo!

[Tom]

LOL! Just today, I visited my elderly aunt and she is so concerned about my cousin who is flagging on a highway construction crew and said that she works so hard and her back hurts her. When she got around to asking me how I was doing, I told her that I was not as good as last time I saw her a couple months ago because of the weather and my COPD. I mentioned Wegeners to her and she says, Have you seen a Dr for that, you know they have a cure for that!" And then the conversation went back to my cousin having the flu, Poor thing she says! ERRRRR!

[brew22]

LOL! Just today, I visited my elderly aunt and she is so concerned about my cousin who is flagging on a highway construction crew and said that she works so hard and her back hurts her. When she got around to asking me how I was doing, I told her that I was not as good as last time I saw her a couple months ago because of the weather and my COPD. I mentioned Wegeners to her and she says, Have you seen a Dr for that, you know they have a cure for that!" And then the conversation went back to my cousin having the flu, Poor thing she says! ERRRRR!

Send her some info on the disease..she sounds like that type that is probably raving to your cousin about your problems and your cousin my be feeling the same way you do. Ha! Now that I have this disease I find people talk about it to each other more than they do to me!

[godgirl]

This. Is. AWESOME.

I get a lot of "you should look online for a natural cure".

[Donna-from-Philly]

Great visual. I get "you look great". And "if your on chemo how come you haven't lost your hair". "You don't look sick". What does sick
Look like? After two years of +40 mg of prednisone and brain surgery. They are basically saying "damn girl, you looked bad". My parents don't want to talk about it. They change the subject and tell family members that I'm getting better which isn't the case. After three years of a constant battle you would think they would be starting to deal with this.

[vdub]

.....and brain surgery

Brain surgery? What kind? Was it wegeners related?

[newbie]

How about "at least it's not cancer."
When did cancer become the only thing that can kill us? I just received confirmation of my dx on Friday and have heard this several times already. How do you answer that???

[godgirl]

Well, newbie, at least if it was cancer, I might be done with treatments now - and not have to be on chemo drugs the rest of my life. Oh, and people would know what it is and I wouldn't have to explain it 6 billion times.

I once got a "You should go to this healer I know. He'll give you a magic rock." I can't make that up.

[Donna-from-Philly]

Brain surgery? What kind? Was it wegeners related?

My brain surgery was Wegener's related. The cells followed the optic nerve into the brain and also wrapped itself around the carotid artery. They were able to remove about 95% of it. They also had to remove the left eye and all the muscle and tissues surrounding as it was all compromised. There were complications and I had to have three brain surgeries in four days.

[annekat]

Oh, Donna, that all sounds awful.... I'm so sorry you had to go through all that. Once again I'm reminded how lucky I am to have a fairly standard case of Wegs, so far. I've lost an eardrum and my septum and have double vision from sinus erosion under the orbits. But none of those are as bad as having brain surgery and losing an eye. Best wishes to you.

[vdub]

My brain surgery was Wegener's related. The cells followed the optic nerve into the brain and also wrapped itself around the carotid artery.

My brain surgery was less complex. Wegeners had surrounded my pituitary gland, pituitary stock, and hypo thalmus with a granuloma shell. The surgeon went in through my nose, entered the head cavity between my eyes, and then proceeded on back to the pituitary. It was all robotic-- in fact, I think he was in a different room, but not certain. He took out 5 chunks to relieve pressure. I had a 17% chance of keeping partial pituitary function, but lost the lottery as well all pit function and hypothalmus function.

The pituitary is the master gland that controls most all of the endocrine system, so I lost most all endocrine functions (thyroid, adrenal, testosterone, B-12 binding, human growth hormone, etc) plus I lost the hypothalamus, which controls kidney function. I'm learning to live with all the drug, tho.