Illness bingo!

[Wegetarian]

I need to take this one with me to the next family reunion...

http://i.imgur.com/Yl1SgT6.jpg

[renidrag]

How can I download like that, I got something to share but I don't know how. Thanks,
Dale

[annekat]

Things can be downloaded from Facebook easily, but I know you aren't on there, Dale. I wish I could help more, but I know that it has to be in the form of a URL, and there are various ways of doing that, maybe with online photo editing programs, or other things suggested on here that haven't worked for me.

Andrew or vdub, is there a way of getting it back how it was, where we could just download an image from our computer files without it having to be a URL? I think we can still do that for our avatar, so why not for images inserted into posts?

[Wegetarian]

You want to download the picture? Just right-click on it and select "Save picture", or your browser will have some similar text.

http://content.screencast.com/users/temporaryfolder/folders/Jing/media/e1fc8bff-9374-409b-a137-49e716e188da/00000078.png


Or did you mean that you wanted to post a picture? In that case you need to have it hosted online (upload to for instance imgur.com). Then press that image button and copy paste the link from your picture (right click on the picture on a website and copy the URL)

http://content.screencast.com/users/temporaryfolder/folders/Jing/media/1fb83ef0-f914-473d-bcc4-a4c17898afb3/00000079.png

[annekat]

Good info, Dan, but we used not to have to go through all that; if we had an image in our offline photo files that we wanted to share, we could just access it directly from there, as an alternative to having it in URL form. I don't know why it was changed, since we can still create an avatar that way.

I did just notice with my gmail (web based email) that it now has an interface for saving pics and downloading them from there. It also seems I should be able to download images from emails, since mine are online, but I think I tried that and had some trouble with it.

When I have time I'll play around with some of that stuff, but I still wish they'd change it back.

[Wegetarian]

What I often do is I use this free screen capture program Jing (http://www.techsmith.com/jing.html) and take a screen-capture of the picture I want to have, and you can then just click a button to have it saved on their server and copy paste the link. Its quite convenient, and won't really take longer than saving a picture and uploading it to the forum.

[JeanMarie]

Dear Wegetarian,
Liking it isn't enough--I love it! Thanks for posting. :thumbsup:

[annekat]

That's cool, Dan. I'll have to save that link and try it. I've always been mystified about screen captures, never knew how to do them.

[Tom]

I need to take this one with me to the next family reunion...

http://i.imgur.com/Yl1SgT6.jpgThat is cool! I get a You don't look sick" and "My friend had something like that and her Dr cured her/him"! Or your over blowing the while thing!

[vdub]

One I get is "your joints probably wouldn't hurt as much if you lost weight". Yeah and the coyotes wouldn't howl so much if you were better looking, too.... :-)

[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.

[Donna-from-Philly]

Wow loosing pituitary function is huge! It would be a lot to keep all the meds going. Being very careful not to miss any. I had trouble leaking cerebral fluid. Did anyone else have that?

[annekat]

It is amazing to me that they can go through the nose and do all that, vdub, especially if they may be in another room! And I'm only just now learning that granulomas can form a shell and surround things, and can be removed in chunks. I'd sure be interested to know what my own granulomas have actually looked like, and where they went if they aren't still there! What a weird disease we have. I'm sorry you lost the lottery, but I guess 17% wasn't the greatest of odds. I'm glad you are doing as well as you are in having adjusted.

[vdub]

Yeah, I take a few drugs. It ranges from about 18-23 different drugs per day depending on what's going on in my body. 3 of the drugs are injections, which I've actually gotten quite used to.

I keep all my drugs in a fishing tackle box all in order by what time of day I take them, but some are multiple times per day, so it gets confusing. Getting ready for a trip, like I am on now, is a real challenge. I pre-load a whole bunch of weekly pill-minder boxes. I load about 30% more weeks than what I actually need and then carry a bottle of assorted super important drugs loose in a bottle. I don't bother with having prescriptions on my bottles for customs because I'm given some drugs a thousand at a time. Instead I have letters from all my docs an my pharmitist. I've never been questioned, tho

I'm used to the ordeal by now and its all pretty much routine.

[Donna-from-Philly]

"Pretty much routine" is a good thing! I think it's a goal we all strive for especially after so many flare ups. I'm always surprised after a flare up how I am always blind sided. Once up on the pred I can't believe I was functioning in so much pain.

[Wegetarian]

Damn Donna and vdub.. I'm getting embarrassed that my brain surgery was so minor... (Not wegs related, just a beningn tumor, but I did "catch" wegs while I was recuperating from the operation). They took my operation on video, as the surgeon was one of the best in the world and there was a class full of students watching it. I did ask if I could get a copy, but no one had done that before so they weren't sure on the procedure to go through to give me it :( Showing it would have been a great way to get the last guests of the party to leave.. ;)

[vdub]

Showing it would have been a great way to get the last guests of the party to leave
LOL!! :-) I need to rember that...