GPA Photo Albums needed

[BarbW]

Is it possible to create photo albums for this site where everyone can contribute? I was fairly certain I had GPA months before I went to Mayo. I just couldn't get my local rheumatologist invest much thought in me. Pictures are scare online and valuable to anyone searching.
I started documenting my disease months ago with my camera phone. When I went to Mayo, I wasn't having a flare, but showing pics on my phone helped considerably. We could have different albums for different symptoms: eyes, mouth ulcers, tongue ulcers, saddle nose, nose crusting, skin ulcers, purpura. Any thoughts?

[LisaT]

Sounds like a good idea to me but I don't know If I'd want to show nose crusties (which autocorrect changed to crudités--gross!) and have everyone know whose they were... Maybe anonymous symptom pics.

[Alysia]

Sounds like a good idea to me but I don't know If I'd want to show nose crusties (which autocorrect changed to crudités--gross!) and have everyone know whose they were... Maybe anonymous symptom pics.

prob you didn't see that thread yet, one of the best around http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3378-warning-extreme-booger-pictures-ahead-not-safe-lunch.html

[annekat]

Heh, heh... Alysia beat me to it regarding the booger pictures, Lisa. I have not even looked at them, not a one. People may think I'm a wimp, but I don't care. I don't think it's even that... I just don't need to see them OR know whose they are. I know what boogers look like.

As for pics of other stuff to document GPA disease activity, it doesn't sound like a bad idea. I've always been curious about other people's saddle noses. I have a small, weird hole in the crease of the skin between my eye and my nose that was caused by necrosis soon after diagnosis. Other than that, nothing too grotesque. I've seen some grotesque stuff online. I wouldn't expect everyone to want to share these pics, but it would be worth a shot to see what happens. They could be helpful to us as well as interesting.

[Alysia]

Heh, heh... Alysia beat me to it regarding the booger pictures, Lisa. I have not even looked at them, not a one. People may think I'm a wimp, but I don't care. I don't think it's even that... I just don't need to see them OR know whose they are. I know what boogers look like.

they are not so bad :lol: :wink1:

[annekat]

Oh, I could probably handle it. I just haven't wanted to go there badly enough to do it. An album of saddle noses, though, I'd be right there, comparing them to mine.

[Alysia]

Oh, I could probably handle it. I just haven't wanted to go there badly enough to do it. An album of saddle noses, though, I'd be right there, comparing them to mine.
oh, that one would be too depressing to me :crying: I prefer the boogers :flapper:

[LisaT]

I'd be curious to see other people's veins and bruises because it would help me determine whether this is caused by the disease or an unrelated problem. Either way, it's hideous and makes me not want to wear a bathing suit... Normally I don't care and just want to have fun in the pool and at the beach with my kids...

I think most of us would want to see pics of symptoms similar to our own, but if one doesn't have crusty boogers, or has them and already knows they're caused by the disease, there'd be no need to look. Those pics would be most helpful to people still searching for the cause of their symptoms, to compare... I assume that's why they were posted in the first place. I don't want to see them either, no offence to anyone whose boogers are there, LOL. I'd much rather see pics of your beautiful faces, saddle nose and all! :love:

[Alysia]

I think most of us would want to see pics of symptoms similar to our own, but if one doesn't have crusty boogers, or has them and already knows they're caused by the disease, there'd be no need to look. Those pics would be most helpful to people still searching for the cause of their symptoms, to compare... I assume that's why they were posted in the first place. I don't want to see them either, no offence to anyone whose boogers are there,
na :flapper: this thread contains some masterpiece, like Phil's unforegettable starfish :wink1: :love:

[annekat]

na :flapper: this thread contains some masterpiece, like Phil's unforegettable starfish :wink1: :love: The starfish is almost enough to make me want to look. No, it is not only crusty boogers, but also HUGE blobs of multicolored, variously shaped specimens in all their glory. This I know from seeing my own and not from visiting the thread.

[pberggren1]

Whenever I get the: "but you don't look sick" response. I often say: it's the type of disease that does not mess with sexiness.....:wink1:

[Alysia]

Whenever I get the: "but you don't look sick" response. I often say: it's the type of disease that does not mess with sexiness.....:wink1:

mmmmmm :blushing: are you kidding ? even if WG would have dare to mess with any weggie's sexiness, (and thankfully it doesn't) it couldn't have challenged yours :wub:

[annekat]

Whenever I get the: "but you don't look sick" response. I often say: it's the type of disease that does not mess with sexiness.....:wink1: Good one, Phil.... I'll have to remember that one and use it on someone sometime.

[Beverly]

You guys are just too much:rolleyes1:. Barb, I would not mind contributing, but am not anxious for the symptoms to return so that I can take pic. Wish I had thought of that :blink:, but was too ill and miserable to have had such a wise idea. I had every symptom listed and then some, except saddle nose, and there are many who have been more ill than myself.
I appreciate you all and what you have been and are going through.
Maybe it would be a good idea to encourage those who are in midst of their symptoms to take pictures for themselves so they can show to their docs. Then if they feel like sharing with an album, they can.
Are we back on subject now?!?!?! :lol:

[andrew]

Near the top of the page click 'community' and 'albums' :)

[Alysia]

Are we back on subject now?!?!?! :lol:
for this you should use this one: (you can find it with the other emoticons)
:back on topic:

[BarbW]

My question is whether everyone can contribute to the same album. If I create an album, can everyone else submit? (I'm just trying to figure logisitics).
thanks,
Barb

Oh, and for all the squeamish responses to nasal crusties, you shouldn't have such a strong emotional response. It is just another symptom of our physical disease, and a very important one at that. If there were more openness about it, I might have found it on the internet months ago and I could have made a stronger case to the physicians.

[annekat]

My question is whether everyone can contribute to the same album. If I create an album, can everyone else submit? (I'm just trying to figure logisitics).
thanks,
Barb

Oh, and for all the squeamish responses to nasal crusties, you shouldn't have such a strong emotional response. It is just another symptom of our physical disease, and a very important one at that. If there were more openness about it, I might have found it on the internet months ago and I could have made a stronger case to the physicians. I, too, am a little confused about the albums. When I click on the Community and Albums tabs, all I see is my own album which I barely remember creating. How do we do a group album that everyone can see?

As for the nasal crusties and blobs, I am not squeamish or emotional. We have been plenty open to talking about them since I joined the forum 3 years ago, and I have participated and have described mine. I just don't feel the need to look at the pictures just because someone thinks I should. I'm not saying I never will. It is up to me and whether I do or not will not affect anyone else. Also, before knowing about my WG, I did find discussions about boogers and blobs on the internet, in regard to the many sinus issues that people have even without WG. I don't remember whether anyone mentioned crusties. It would be nice if WG had been mentioned there, but apparently no one had it. That is why we don't get diagnosed early, because sinus issues are so prevalent and troubling to a lot of people.

[vdub]

As I was reading this thread I was wondering when someone would mention "gee, you don't look sick". Thanks, Phil. And, that would be the issue for many of us -- we don't look sick. As for myself, the pred has added 40 pounds for me, at least, that's what I'm blaming it on. But, showing a picture of another over-weight Yank is not particularly unique. That having been said, having an communal album certainly wouldn't hurt anything.

[annekat]

We could have a section on moon faces. Easy for me to say now that mine is gone! At least I think it is.

[Alysia]

sorry, I will not participate in pics. I need my privacy.

[annekat]

sorry, I will not participate in pics. I need my privacy. That is OK, Alysia. I'm pretty sure I wouldn't want to put my whole face out there either, for these sorts of pics. We are talking about pics of conditions and not portraits. If I could get someone to zoom in on my saddle nose that might be OK. Or I might post a pic of the WG rash I sometimes get on my forearms, although it isn't all that impressive... but you couldn't tell it was me. I don't think who it is would be the main point of this. This certainly should not be a mandatory thing, nor will anyone think less of you for not participating.

[LisaT]

The starfish is almost enough to make me want to look. No, it is not only crusty boogers, but also HUGE blobs of multicolored, variously shaped specimens in all their glory. This I know from seeing my own and not from visiting the thread.
Me too. :scared::scared::scared:

[pberggren1]

I should have had my camera ready the last few weeks for pics of the sink critters......:drool: Some are much bigger than the starfish one....lol

[LisaT]

I hope they get smaller and disappear altogether. At least you're getting rid of them... There's something sickly satisfying about a 'productive' sinus rinse... Perhaps because it means one will have a little more open breathing space.

[pberggren1]

The rinse is always a major highlight of my day.

[LisaT]

The rinse is always a major highlight of my day.

Only a fellow sufferer could truly understand and appreciate that. Thanks for the giggle.

[annekat]

My critters have gotten smaller since my sinus pockets have eroded and no longer provide as many nooks and crannies for them to collect in. They are still produced in the nasal cavity, though, and sometimes I'm surprised and delighted with a big one. It always feels so good to get something like that out of there.

[pberggren1]

My turbinates must be massive based on what comes out some days.

[annekat]

My turbinates must be massive based on what comes out some days. I get the feeling from my ENT that my turbinates are mostly eroded. I don't know why that happens to some of us and not to others. I barely know what a turbinate is but of course have seen the pics of them in diagrams. Looks like I'll be having an MRI soon for a variety of issues so maybe will get a chance for a better look.

[pberggren1]

Turbinates are in your nose, they can't erode.

[annekat]

Turbinates are in your nose, they can't erode. Well, I had thought there was some underlying bone, and bone is what erodes. But I will try to get a clarification or see if I misunderstood. That is entirely possible.

[pberggren1]

The sinuses are hollowed out areas of the facial bones and skull bones. They behind the nose, below the eyes and behind and above the eyes. So the sinus cavities can grow over with new bone and totally fill in. The drainage holes to the sinuses can also grow over. But, the sinus bones can also erode to make them much larger and in some cases pose major problems. The turbinates however, cannot erode because they are tissue. The tissue can be eaten away by the macorphages but usually not.

[annekat]

Phil, this link describes the type of bony erosion and loss of turbinates that I think is going on with me. It also talks about neo-osteogenesis and bony obliteration of parts of the sinuses, which I think my ENT described to me. I'm still a bit confused by it all. WG is specifically mentioned in this article.
Bony abnormalities of the paranasal sinu... [Am J Rhinol. 2001 Mar-Apr] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/11345151)

[pberggren1]

Wegs can do nasty things for sure. I wonder how many of us have saddle nose.

[annekat]

The sinuses are hollowed out areas of the facial bones and skull bones. They behind the nose, below the eyes and behind and above the eyes. So the sinus cavities can grow over with new bone and totally fill in. The drainage holes to the sinuses can also grow over. But, the sinus bones can also erode to make them much larger and in some cases pose major problems. The turbinates however, cannot erode because they are tissue. The tissue can be eaten away by the macorphages but usually not. Phil, I think you have described what is going on in my sinus and nose area pretty well, which I addressed in a thread called Disappearing Sinuses. My understanding about the turbinates is that they are folds of tissue in the nasal cavity which are covering a framework of bony structures. So yes, the tissue itself would not be likely to erode, but the bone underneath would, so that the turbinates no longer have the same defined form. In the sinuses, there can be the filling in with bone and at the same time total erosion of the thinner bone next to the nose, creating a common cavity, one big hole. Several on here have described the common cavity, though they may not have the thickening to seal off the sinuses, so still have lots of problems. In my previous thread about this, Titus 3:2 said the same thing has happened to him as my scenario, and that he has lost his turbinates. I may not understand everything but I take my ENT at his word when he says my turbinates are pretty much gone. I think he must mean the bone more than the tissue.

Yes, Wegs can do some nasty things. There are many that I have not experienced at this point and hope I never will. We are getting a little off-topic here, probably, since we will not be able to post pics of the insides of our sinus and nasal cavities. Unless they are CT scans or MRI's. That would be interesting. As for saddle noses, I've often wondered that, too, how many of us have them. When I'm out in public where lots of people walk by, I actually look at their noses to see if there are any saddles.

[vdub]

I actually look at their noses to see if there are any saddles.
HA! I do that, too, even though I have escaped the saddle nose myself. I certainly have all the pred stuff, tho.

Speaking of pics -- no one said anything about my new avatar. Dang, so disappointed. Its not me in the picture, but I took it. Its on the Homer spit in Alaska. OK, back on subject....

[annekat]

HA! I do that, too, even though I have escaped the saddle nose myself. I certainly have all the pred stuff, tho.

Speaking of pics -- no one said anything about my new avatar. Dang, so disappointed. Its not me in the picture, but I took it. Its on the Homer spit in Alaska. OK, back on subject.... vdub, your new avatar is cool! If only I could enlarge it, I could see better what is going on in it.. But the mountains in the background are great. Never been to Alaska. OK, back on topic....

[andrew]

I, too, am a little confused about the albums. When I click on the Community and Albums tabs, all I see is my own album which I barely remember creating. How do we do a group album that everyone can see?

Hmmmm...true it's a bit counter-intuitive. Might need a tweak or two....Will check it out.

[vdub]

OK, Anne..... A big pic for you click here (http://wasem.com/wg/HomerAK.jpg)

[Alysia]

Speaking of pics -- no one said anything about my new avatar. Dang, so disappointed. Its not me in the picture, but I took it. Its on the Homer spit in Alaska. OK, back on subject....
mmmm how could we ? :blushing: sorry vdub :love: you avatar is great :thumbup: brings me a feeling of coolness which is a blessing in the heat that we have now in Israel :blink: :biggrin1:

[Alysia]

Wegs can do nasty things for sure. I wonder how many of us have saddle nose.
simple to check..... http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4100-how-many-us-have-saddle-nose.html#post86931
p.s. Batman just need to ask.... :love: signed: Batgirl. :wink1:

[windchime]

Vdub love the new avatar. Big pic very cool. I miss the mountains. :sad: But I get to visit them this year. :thumbsup: Ok back on topic.

:back on topic:

[Jaypfei]

We could have a section on moon faces. Easy for me to say now that mine is gone! At least I think it is.

I actually have a photo of the moon face. It was back in Feb 2013 when my then rheumy had me over loaded with so many drugs. I was at my Mom's memorial service standing with Papa and my brother. I look at the photo and still can't believe it's me. I was heart broken from losing my Mom and I felt awful from all the drugs. It certainly reflected in my physical appearance. If we can figure out the posting of pictures I'll put that one in there.

I up loaded a moon face photo of myself on my profile album. Yep, that is me. Thankfully moon face doesn't last forever. :)

Oh happy day! I was able to re-load my saddle nose pics and they are right side up! Not sure what I did, but yeah.......

[annekat]

I actually have a photo of the moon face. It was back in Feb 2013 when my then rheumy had me over loaded with so many drugs. I was at my Mom's memorial service standing with Papa and my brother. I look at the photo and still can't believe it's me. I was heart broken from losing my Mom and I felt awful from all the drugs. It certainly reflected in my physical appearance. If we can figure out the posting of pictures I'll put that one in there. I had to go out in public with mine and sell at the farmers market, and didn't think about it too much. Almost no one mentioned it. Later, after it was pretty much gone, a few people told me how much better I looked, which I appreciated. I'm sorry you lost your mom, not that long ago, and can understand that looking at that picture may not be easy.