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murmur
11-12-2014, 08:03 AM
Hello again everyone, I haven't been on in a while but here is a rant I've been dying to tell people who also have auto-immune diseases,

I feel that regardless of how serious this disease is, it is often pushed aside. I constantly here stories about cancer survivors and walks for cancer and stuff like that. I understand that it is an awful thing to have, but so is having an auto-immune disease. I am still in high school, and whenever it comes up in conversation people seem so confused or have never heard of it. It drives me crazy because statistically it is right behind cancer in number of deaths. It is frustrating also because when I was on steroids people gave no sympathy as they would have if I had lost my hair threw chemo. My friends would say 'a little puffy face isn't a bad side effect.' and they wouldn't understand how dangerous steroids can be. I am frustrated with people who think that this is just a blip on the screen.

annekat
11-12-2014, 08:17 AM
I hear you. I don't know how to make friends, relatives, and acquaintances see this as among the most serious kinds of diseases, without being obnoxious. I manage to throw in "potentially life threatening" whenever I get a chance. They also have a hard time seeing that this has a big effect on my daily life. I am not able to be as productive as a Weggie as I was formerly. But they think if I'm able to be productive at all, I must be OK, and therefore any drop in my productivity must be due to other shortcomings. And it always peeves me when they seem to feel that since they never heard of the disease, or even of vasculitis, that it can't be anything that serious. I mean, if it was, then THEY certainly would have heard of it! And as for the meds, either they tell me I shouldn't take them and should use alternative or "natural" methods, or as you say, they have no clue about the negative effects.

mishb
11-12-2014, 08:22 AM
Unfortunately it is something that you will continue to hear :sad:

Tell them that it's a type of blood cancer, those little granulomas in your blood vessels.

A lady I worked with was diagnosed with breast cancer, but she still looked so well - why wouldn't she, it was only very early stages.
She decided, even before starting on her chemotherapy treatment, that she would shave her head to save it falling out later on - but also, so that people knew she had cancer.
Well it worked. Not only were people giving her a seat in the trains or holding doors open for her, but they now felt sorry for her.

Guess what, she didn't want people to feel sorry for her. She didn't like the questions about whether it was terminal, can they get it all out, how long do they give you.
She then wished that she didn't shave her hair off and that people would just treat her normally - but by this stage the chemo had started and the hair just wasn't there.

I guess you can't have it both ways.

I agree with you that more awareness and understanding needs to be made about AI's.
Marta is doing her utmost to make this happen

Wegetarian
11-12-2014, 09:17 AM
I'm in the opposite camp, I kind of like that no-one knows about this disease, and I can tell as little or as much as I want. I've been lucky though, that my employer was very understanding and all. But I don't want to scare my friends and relatives more than needed (except sometimes I like to freak out my friends by telling about Cyclo IV's and stuff).

NikkiNicole
11-12-2014, 10:02 AM
I understand all of this. I, too, get frustrated that there is not more being done to promote awareness and raise funding for getting a cure. I get frustrated when explaining to people about what I have. I wish I didn't have to follow it up with an explanation when I say I have Wegener's. Even the advice nurse today didn't really know what it was.
Too many people, even now, hear autoimmune and their brain goes right to AIDS. Yep, I have met a few of those. They weren't the brightest in the bunch. I always say "life threatening" because it is.
Autoimmune diseases can kill just as quickly as cancer.
I honestly get more sympathy for my Wegener's than I do for my cancer amongst my family ... that's a plus.

annekat
11-12-2014, 10:04 AM
I agree, the opposite point of view is very valid, and I don't really want everyone to know what I have. But when in the public eye, as I am when selling my pottery, it comes up occasionally and can be awkward, and people can be oafs, just as I can also probably be an oaf. I guess we need to remember that almost everyone we talk to is carrying some burden that we are unaware of and which we wouldn't necessarily understand. I guess the important points to stress if it comes up are that what we have is rare and can be quite serious, despite appearances. After that, it's often not going to be a good time for much further explanation. Marta is our hero for her efforts to raise awareness of this and other AI diseases.

annekat
11-12-2014, 10:13 AM
I too have had them think AIDS once or twice. Some don't know that AI diseases are actually the opposite of AIDS, and that Lupus, RA, and MS are included among them. Important also to stress that it's in no way contagious. Especially if you are coughing uncontrollably, which luckily happens far less often for me now.

delorisdoe
11-12-2014, 10:44 AM
I tell nobody anything they don't have to know. I rarely say wegeners granulomatosis. When I am visable flaring I say "oh it's an autoimmune condition that you will never hear of and its no big deal". I don't want the world or even family or friends or strangers to feel sorry for me. I have never wanted what was wrong with me to have even close to the attention that cancer gets. Also, I have issues with privacy so my opinion here is most likely not the norm. I have taken people off of my facebook for even mentioning wegeners because it feels so private to me.

delorisdoe
11-12-2014, 11:13 AM
Hi Anne! How have you been?

annekat
11-12-2014, 11:18 AM
Leigh! I've not been too bad. In many ways good. Always nice to see you on here and hope you've been doing well yourself! I forget what part of Canada you are in, whether it's the western or eastern part, or in the middle.

Mas78
11-12-2014, 11:34 AM
I don't really tell many people much about wegener's either. Once soon after my diagnosis at my lung doctor the nurse said a least I don't have an autoimmune disorder. She gave me a weird look when I told her it was.
This past year my neighbor sent out an email that her labs came back and she doesn't have wegener's. I talked to her a few days later and asked her about if it was granulomatosis that she thought she had, I've lived near them for 10 years and never mentioned I had it. Found out her mom had it and passed away in the 70's after battling it for some years. And that's why she was worried she had it with some of her symptoms at the time.
So I see a lot of us are fairly private with our disease but it can be Benifital to open up a little with people in our lives.

delorisdoe
11-12-2014, 11:38 AM
Leigh! I've not been too bad. In many ways good. Always nice to see you on here and hope you've been doing well yourself! I forget what part of Canada you are in, whether it's the western or eastern part, or in the middle.

Ontario. I am well. I am having a minor weg flare being treated by a little prednisone-al is turning over in his grave at my statement and phil is defending me to him. It is just a skin flare I supose but it has been the most painful thing besides childbirth I have ever endured. The pain is consuming my every day. The prednisone is working its magic. So it's all good.

annekat
11-12-2014, 02:41 PM
Ontario. I am well. I am having a minor weg flare being treated by a little prednisone-al is turning over in his grave at my statement and phil is defending me to him. It is just a skin flare I supose but it has been the most painful thing besides childbirth I have ever endured. The pain is consuming my every day. The prednisone is working its magic. So it's all good. Prednisone always works for me to get over minor flares. I'm so sorry to hear about the pain, though. I have gotten by without any real pain anywhere so far. Maybe my nerve endings are shot or something. And I've never had a real skin flare, just a few red dots here and there. Interesting idea, Phil and Al encountering each other in heaven, arguing about stuff, discussing, whatever... I hope the pain recedes very soon.

Donna-from-Philly
11-12-2014, 03:35 PM
I have a huge extended family that is over 1000 miles away that is always asking about me so I keep a caring bridge blog. Only people I invite see it. I use it to keep my loved ones updated and it keeps things off social media. I do it because I want my face to face conversations to be about other things. I also want my teenagers to control how much their community knows about my condition. I'm missing my left eye so I can't hide my situation. I did get so mad when I was receiving treatment because if you had cancer you could get discounted parking. I was loosing my hair and was told I could get a free wig through the cancer society. I responded but I don't have cancer. The volunteer asked why I was taking chemo. I so wanted to say something sarcastic but I didn't.

My son doesn't tell anyone but his closest friends that I'm sick. My daughter has given speeches and written reports about the disease. Everyone is so different when it comes to disclosure.

mishb
11-12-2014, 10:27 PM
How does one raise awareness or even get more recognition for AI conditions than cancer - if you don't tell anyone about it.

Can't have it both ways :glare:

John
11-13-2014, 01:10 AM
Believe me I know it isn't a blip on the screen. Some people are not understanding, unless they have the disease. I personally don't care to tell people what I have and how it effects me. Maybe we need to enlighten more people to what the disease does or doesn't do so that their can be more research on Wegeners.
Keep asking questions of your dr's and let people know how you are doing. Remember people are scared of what they don't understand.

morningsunshine
11-13-2014, 01:35 AM
This is a really interesting thread. I feel like there are two sides to deciding how and whether to explain Wegener's: the desire for privacy and normalcy on one hand, and the desire for connection with and caring from others on the other.

It's also hard to explain the side effects of the various treatments: I feel like sometimes when I tell people that I'm on chemo drugs, they are skeptical because I've gained weight from pred and still have (most of) my hair. It's hard to break through preconceived notions about what chemo is and how horrid the side effects of pred can be.

On the upside: Wegener's has taught me compassion. I used to be much less empathetic when people would tell me about their health issues and now I really try to listen and comfort those around me.

delorisdoe
11-13-2014, 06:06 AM
[QUOTE=morningsunshine;92194

On the upside: Wegener's has taught me compassion. I used to be much less empathetic when people would tell me about their health issues and now I really try to listen and comfort those around me.[/QUOTE]


It it did the opposite for me. I think to myself while people speak of what is wrong with them "we all have our problems...I don't need to hear about your sore back etc.".

delorisdoe
11-13-2014, 06:10 AM
How does one raise awareness or even get more recognition for AI conditions than cancer - if you don't tell anyone about it.

Can't have it both ways :glare:


I have aves never felt the need to raise awareness. This sounds selfish I am sure but I don't think i would be any kind of embassador for wegeners as I think to be "raise awareness " type person you have to be passionate about it and I am mostly just annoyed, embarrassed, tired. Not passionate. I would not even know what to say. I hate making myself sound so horrible but it just feels so personal to me.

gwenllian111
11-13-2014, 06:41 AM
Good post.

I have to have a health interview (UK) on friday, to see if I really am 'sick'. I look okay, so goodness knows how this is going to turn out.

I feel so unwell all the time now (i'm 33), and i'm not sure if i'm winning the battle with depression anymore.

It's a very isolating disease.

miracleshappen08
11-13-2014, 06:58 AM
In my opinion this is worse then cancer. There are so many people who survive cancer or it goes away and they never have to worry about again. But we live with it for the rest of our lives!! And no we may look good on the outside but our insides are a mess! I tell people that an autoimmune disease eats a person from the inside out. There is no way of stopping it. There is only a way to slow it done and make it not so painful

annekat
11-13-2014, 09:22 AM
In my opinion this is worse then cancer. There are so many people who survive cancer or it goes away and they never have to worry about again. But we live with it for the rest of our lives!! And no we may look good on the outside but our insides are a mess! I tell people that an autoimmune disease eats a person from the inside out. There is no way of stopping it. There is only a way to slow it done and make it not so painful It's an attitude adjustment for me to think of it as worse than cancer. I know for some, it is at least as bad, and for others, like me, so far, I can't say that it is. Yet it still has a profound effect on my life, and who knows what lies ahead. I've seen a friend go through breast cancer, taking a lot more chemo, radiation, the whole shebang, and how sick she felt for months, and the fear of it all. I haven't had to go through that but I know some Weggies go through just as bad and worse, and some die. So it depends on a lot of things, and individual circumstances, whether it's worse or just as bad. It WOULD be nice for people to recognize WG as the big W, or vasculitis as the big V, just as they call cancer the big C.

chris.wg
11-13-2014, 10:55 AM
For people having issues with someone taking the jump to AIDS. Maybe this will help. At work we got a new co manager who lucky for me was someone I already knew so we talked he commented on the weight loss I told him about WG he left it kind of at that nothing else said. About 2 weeks ago while talking the subject somehow came up about sickness. Kind of instinctively for some reason I don't know I didn't refer to what I have as Wg or even a AI disease I called it a vasculitis <because it is> He has known people with Vasculitis before <thinking that is the disease name>, I did set him straight there were different types and mine was called Wegners. But that word to him made him understand the seriousness a bit without thinking AIDS.

chris.wg
11-13-2014, 10:57 AM
Now the mini-rant. Yes I do hate explaining my sickness all the time or even those who know about it asking how I feel. Without understanding what was wrong in the first place. Having said that though..... I can't blame anyone. There are a lot of illnesses I still never heard of or know nothing about. And if I didn't have it I know for a fact Wegners would be one.

chris.wg
11-13-2014, 11:16 AM
Sorry if there is post after post but I got late to the thread and kind of replied as I read what was said. I believe in some cancer cases compared to some WG cases WG is worse but it works the other way also. A blanket statement about any situation is never true for all situations. Everyone has their burden and everyone has their demons. Some of us get off with less then others but in the mind of that individual people tend to think how can this be happening to me. Keep in mind when saying Cancer and thinking it defines everything that disease encompasses would be like a cancer patient saying oh they just have a AI my aunt has arthritis its not that bad. I have lived with someone as they died of cancer that was very treatable but due to a wrong choice in treatment it progressed to his bone marrow. I have my ache and pains but have never been on the types of pain meds he was prescribed and still he barely would move. Sorry off that soap box I just don't want any of us to ever feel oh we have it worse then that guy. Because we do have it bad but do you honestly know what they are dealing with. This thread started because we hate how people just make assumptions about us... Lets not become them.

annekat
11-13-2014, 12:51 PM
Chris, I'm so sorry for the loss of your friend. And you are so right about the error of making blanket statements when no two people's experience of this illness or most other illnesses is the same. Unfortunately, that is how people think about many things in life, in all-or-none or overly simplistic judgements, and always trying to say what is better or worse than something else. It takes something or someone getting really famous, becoming a household word, for people to automatically be familiar, and then it's always this thing or that person is this or that way, and better or worse than this or that. That is overly simplistic thinking that should be corrected as children grow up.

I agree that vasculitis is a more effective term for what we have than Wegener's Granulomatosis or GPA and what it stands for. Vasculitis is an easier word to remember. The confusion then comes in when we consider the different types and the different scenarios of symptoms and degrees of severity within each type. The world at large definitely needs to learn that vasculitis is its own autoimmune disease involving specific types of systemic and destructive blood vessel inflammation, as opposed to a secondary vasculitis symptom occurring within another disease (which I've heard happens, and could be very serious, too...). They also need to learn that RA, for example, is not always "not that big a deal", some have very severe cases where it attacks more than just the joints, and that it can be truly debilitating. So AI diseases in general are variable in severity and symptoms, and all are potentially deadly. That is what people need to learn, but it is hard, because they are used to thinking of things as always the same and predictable. I think with time, the awareness will increase for all these conditions, as more people are being diagnosed and we are out here talking about it! While trying to preserve our privacy and live a normal life... a tricky balancing act.

chris.wg
11-13-2014, 01:19 PM
Thank you annekat it was some time ago back in 89 and it was actually my stepfather. But it wasn't ment to be the rant it went into that was just the best example I could give being I lived with him at the time. I have had a few others close to me as I'm sure most of us have. It was intended to just say lets not make the blanket statements we don't want made about us :P

annekat
11-13-2014, 02:40 PM
Thank you annekat it was some time ago back in 89 and it was actually my stepfather. But it wasn't ment to be the rant it went into that was just the best example I could give being I lived with him at the time. I have had a few others close to me as I'm sure most of us have. It was intended to just say lets not make the blanket statements we don't want made about us :P Understood, and many or most of us have ranted from time to time on here... I ended up being long-winded and a little rant-like myself. When my main point was in agreement with you, there are far too many blanket statements made about all sorts of things, either by us or others. Down with blanket statements!

Bek Stone
11-13-2014, 07:05 PM
I know exactly how you feel people just don't get it I've also had people tell me 'why done you just take immune suppliants it'll make your immune system stronger and you won't have the disease anymore' Ah NO!!!!! It's an auto immune disease if I boost my immune system the likely hood of dying will be dramatically increased we have to suppress our immune systems in order to try to get the diease under control so frustrating you try to explain it but the just brush it off coz they don't understand but WG is just as serious as cancer as already said avout the stats yet there is very little support for those of us with WG sorry rant over. Lol

Bek Stone
11-13-2014, 07:38 PM
Very very little support in Australia

annekat
11-14-2014, 02:15 AM
Very very little support in Australia Hi, Bek, looks like you just joined. Welcome. There are several Aussies on the forum and they can help you a lot with support in Australia. If you will post in New Members Introductions, more people will see you, as not everyone reads every thread all the way through. Michelle in Melbourne will find you for sure, just a matter of not much time!

Alias
11-14-2014, 05:12 AM
Sorry if there is post after post but I got late to the thread and kind of replied as I read what was said. I believe in some cancer cases compared to some WG cases WG is worse but it works the other way also. A blanket statement about any situation is never true for all situations. Everyone has their burden and everyone has their demons. Some of us get off with less then others but in the mind of that individual people tend to think how can this be happening to me. Keep in mind when saying Cancer and thinking it defines everything that disease encompasses would be like a cancer patient saying oh they just have a AI my aunt has arthritis its not that bad. I have lived with someone as they died of cancer that was very treatable but due to a wrong choice in treatment it progressed to his bone marrow. I have my ache and pains but have never been on the types of pain meds he was prescribed and still he barely would move. Sorry off that soap box I just don't want any of us to ever feel oh we have it worse then that guy. Because we do have it bad but do you honestly know what they are dealing with. This thread started because we hate how people just make assumptions about us... Lets not become them.

I've often thought about the comparison of living with a cancer diagnosis and living with WG. There are a lot of similarities, but it's a matter of both type and degree of severity. Many cancer patients never actually feel sick from the disease but go through terrible symptoms due to the treatment. As far as what others think or understand, I find myself caring less and less and I explain only to the extent necessary if I have to say anything at all. Anyway, this whole thread reminded me of a quote from Phillip Larkin that I heard just yesterday. It's funny in kind of a dark way: "Yours is the harder course, I can see. On the other hand, mine is happening to me."

Jayne 14
11-14-2014, 09:00 AM
I can understand both sides of these posts
The Cancer word / diagnosis for me depends on the stage you have . Stage 4 terminal will always sound far far worse than my own personal journey with Wegs so far .
But , agree , more awareness of how tough Wegs can be would be very welcome .
I'm sick of people saying I look ok when inside I'm feeling total pants !!!


Sent from my iPad using Tapatalk

lag713
11-14-2014, 09:20 AM
I'm glad that Wegener's isn't visible (no saddle nose yet) so I won't need to explain it to strangers or be reminded of it constantly but I wish there was a way to help people (family, friends, coworkers, even health professionals) understand what we're going through. I think most of them get it but I always feel odd describing a list of symptoms as if that begins to explain the disease or my prognosis. The Wegener's is more than the sum of it's parts but I think that's difficult for people to grasp as vasculitis is not well known. I referenced people to the late Harold Ramis when describing vasculitis. I think a celebrity spokesperson and advocate would do wonders for vasculitis awareness and research. I'm convinced that environmental factors and pollution are likely to cause an increase in the prevalence over time.

As far as comparing Wegener's to cancer, a couple of months ago a fellow graduate student had a tumor the size of a butternut squash over her kidney. She knew she was going to lose the kidney but wasn't sure what it would mean for her life (benign or malignant, etc.). The whole department came to support her with cards, food, well-wishes, a community-made quilt, etc. There was love pouring out to her from everywhere. I felt jealous. I felt guilty and selfish for feeling jealous. My coworker friends didn't go out of their way to support me when I told them what was happening with me 10 months ago. I didn't tell everyone about it and I asked people not to share it with others because I was still reeling from the diagnosis and what it would mean for me. I was trying to come to terms with it. By the time I had, it seemed as though my friends had moved on and figured I was fine ("you look fine"). The other graduate student had a successful surgery, is still recovering but is cancer-free without chemotherapy. She, like my husband, will likely remain cancer free and will move on once she has healed. I know that I will carry Wegener's for the rest of my life. It's a marathon, not a sprint. I just wish a few more people came out for my race...

lag713
11-14-2014, 09:41 AM
Anne - your comment about taking natural remedies to treat your disease when drugs were causing side effects reminded me of something. When my in-laws first heard about Wegener's, they told me that all I needed to do was change my diet and I would be fine. It took a few conversations with my husband before they began to understand how serious it is and how avoiding the medication could cause a great deal of damage. Autoimmune conditions are a tough thing for people to wrap their brain around.

annekat
11-14-2014, 10:06 AM
Anne - your comment about taking natural remedies to treat your disease when drugs were causing side effects reminded me of something. When my in-laws first heard about Wegener's, they told me that all I needed to do was change my diet and I would be fine. It took a few conversations with my husband before they began to understand how serious it is and how avoiding the medication could cause a great deal of damage. Autoimmune conditions are a tough thing for people to wrap their brain around. I have been told the same thing about changing my diet. Following an anti-inflammatory and otherwise healthful diet is no doubt a good thing that will help us, but we all know it by itself is not a way to bring Wegs under control. Same with natural remedies, some of which can actually do us more harm than good. I have been told to take echinacea. I have to educate them about what is wrong with that idea. People are trying to be helpful and would love to share their own pet theories. But it indicates a lack of awareness of the seriousness of Wegs; I mean, how many of them will tell a cancer patient to change their diet or take natural remedies? They know they are in over their head on that one, and they should know the same thing about vasculitis or any of the other potentially deadly AI diseases. BTW, I want to make it clear for those reading this that I never did embark on a course of natural remedies and have stuck with the standard treatments; for me the side effects have not been as bad as for some, but I wouldn't have gone that route regardless.

ozterry
11-14-2014, 11:24 AM
Hi, I was diagnosed in August and still coming to grips with drugs and side effects myself. I also don't want people feeling sorry for me. At the moment I have swollen feet and cellulitis, so I am trying to deal with these changes myself without worrying what others think. My family and close friends know, but I live I a retirement village and the last thing I need is everyone knowing my business.

mishb
11-15-2014, 03:41 PM
Very very little support in Australia

You just hadn't found the right place yet Bek :tongue1:

The Aussie's on here will help and also the Aussie and Kiwi's in the fb group will look after you.
You are no longer alone.

Thanks Anne - love that you are always looking out for us :love:

ozterry
11-18-2014, 10:05 AM
I have a, so found very little support here in Australia. This forum has given me support just by reading others thoughts. Isolation from understanding advice has been a real problem for me.

annekat
11-18-2014, 10:23 AM
I have a, so found very little support here in Australia. This forum has given me support just by reading others thoughts. Isolation from understanding advice has been a real problem for me. Get with Michelle, the post above yours, for getting more support in Australia; she can tell you about meetings, Facebook groups, etc. that are all about support for WG patients. Send her a private message maybe; she is one of the nicest and most helpful people on the forum. Aside from that, yes, you are right, the forum itself gives plenty of support on its own. I can't say enough good about it.

mishb
11-18-2014, 08:32 PM
:blushing::blushing::blushing::blushing: umm thanks Anne

There are actually lots of Aussie weggies on here that are also part of our fb Group........and they are all the best. I'm glad to say that Bek is also one.
It is each and every one of them that make it fantastic.

We had a big get together in September in Melbourne - 20 plus people turned up.
Another big gathering then happened in Sydney in October (I think it was) and 10 or so turned up there.
Then a couple of weeks later a few more in Newcastle.

We are now in the early stages of planning a big meet up in Queensland for May next year.

I'm sorry you missed the Sydney one Terry, but believe me, there will be more.

If you are not on facebook Terry, then this forum is definitely the place to be, because everyone is awesome.........and we will try and let you all know when the next meeting is for each State.

Thanks again Anne.

annekat
11-18-2014, 08:51 PM
You're welcome, Michelle!:biggrin1:

greenjeep
11-20-2014, 08:21 AM
We have all gone through this conundrum in some way I'm sure. My wife used to get upset with me because I might skip church or something due to feeling bad and she would tell everyone how bad I looked and felt. The next week I'd be better and when asked how I was I'd say I was ok. She felt I was making her look like a fool. I finally told her I wasn't going to say I felt horrible when I didn't. I don't care to get sympathy so bad that I'll lie to get it.
I have come to realize that I really don't want sympathy from anyone ever. I know this because when u get sympathy it is embarrassing for me or I reject it outright. I just want permission to feel bad when I do.
I figure if you are relying on others understanding of your condition to feel better, you are going to be a very lonely, disappointed person. And with this disease it's hard not to be lonely and disappointed anyway.
At least the folks here truly understand.... And even then there are differences of opinion on every subject.


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

greenjeep
11-21-2014, 03:24 AM
By the way. I'm not saying that I gave perfected the technique, I struggle with wanting sympathy as much as anyone. I just keep telling myself that sympathy and understanding won't make it all go away.


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

Jaypfei
11-22-2014, 09:15 AM
I don't voluntarily offer up information about my condition anymore. I too have had a few people give me a frightened high brow when mentioning AI. Having a cochlear BAHA I get a lot of questions. If I must explain my condition; I simply tell people that I have a rare form of Vasculitis. Wegeners GPA. That usually satisfies their curiosity.

Pierre42
11-22-2014, 11:17 AM
:w00t:

When trying to explain WEGs to people I find it helps to give them a landmark they recognise.

"You know about MS? Well it's like that but instead of attacking your nerves it's attacking your blood vessels".

It's an auto-immune condition, we have no cure, you can be great one day and in hospital fighting for your life the next, more often than not there are no external symptoms, the drug side-effects (for some people, at least) are only slightly better than dying, AND the drugs make you more susceptible to infection/disease, you can be perfectly fine for YEARS and then have a flare and rushing to hospital (remember I said there is no cure?), it's very likely to get worse over time, and every flare/as you get older the drugs work less.

You spend every day looking for symptoms, wondering if "it's ONLY a little cough", wondering of those "spots" are actually purpurae haemorrhagica (yes I had a scare the other week, regularly scheduled blood work says it was "not the obvious") ....how much sun exposure is "excessive"? how can I tell BEFORE I suffer an extremely bad burn? (yes, there IS now a gadget-and-app for that)"... and basically doing a truly excellent imitation of a hypochondriac (except that you ARE actually suffering from a life-threatening disease).

Them: "but you look FINE, are you SURE you're sick?"
Me: (sigh) "I'm on high-dose immuno-suppressive drugs -> my immune-system is in a choke-hold and gasping for breath, if it ever responded to the point where I ACTUALLY had a fever I'd be off to hospital immediately."
(been there, done that, spent 5 days on several flavours of high-dose IV antibiotics, surrounded by doctors with very worried looks) -> and it was "just a cold".

Or, if you like scaring people:

... Do you know what it's like to drown in your own blood? I do. And it started with "just a cough". Now imagine what goes through my mind every time I start having "just a cough"....I spent two weeks in intensive-care in an induced coma, when I came out it for the first week getting my head wet in the shower induced a panic-attack because my body felt it was drowning. ... Tell me again how perfectly fine I am?

Talk it up people! WEGs is a strain on your mental health almost as much as physical health.

On the upside I've learnt so much about biology/physiology/medicine and various drugs that I pretty much qualify as "a medical specialist".

MikeG-2012
11-25-2014, 01:31 AM
Important also to stress that it's in no way contagious. Especially if you are coughing uncontrollably, which luckily happens far less often for me now.

I tell people that are sick that they are 1,000,000,000 (billion) times more contagious to ME than I am to them! (-8

greenjeep
11-26-2014, 06:34 AM
:w00t:


Talk it up people! WEGs is a strain on your mental health almost as much as physical health.

.

Amen brother.



Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

annekat
11-26-2014, 07:14 AM
I agree, greenjeep, and well said, Pierre42. I'm really feeling it lately.

vdub
11-26-2014, 07:42 AM
You spend every day looking for symptoms
I never really thought about it much, but you are soooooo right. I guess its an unconscious thing for the most part, but I do wake up every morning wondering what this ache or pain is. With a semi-big change in drugs last Jan, I am feeling better than I have in 5 years, but the last couple months have been troubling. A general fatigue and malaise seems to be setting in and no drug changes have taken place. A bit disturbing.

Wegetarian
11-27-2014, 01:20 AM
Oh, I like this quote :)



I figure if you are relying on others understanding of your condition to feel better, you are going to be a very lonely, disappointed person. And with this disease it's hard not to be lonely and disappointed anyway.


What kind of sympathy and awareness is it that you guys are hoping for? I'm just wondering as Weg's can affect people in so many ways that its hard for someone who has it to know what all it can do, so what would you want the the people who don't know anyone with Weg's to know about the disease?

My mom always sound so worried when I talk about the disease, that I kind of just want to tell the good news. I do wish they'd help with the kids more, as its been a really rough year and a half for my family.

Bek Stone
12-01-2014, 05:41 PM
I completely agree with everything that's been said I hwd a little laugh to myself reading your comment Pierre but your so right it happens all the time and people just don't get it but I suppose we all have to look at it that way otherwise we'd driving ourselves up the wall thank goodness for this group where we can actually talk to others who get what we're going through and you don't have to give a big speech about what's wrong with you why you don't look sick why your face is puffy etc. And then people just assume that you can no longer have a normal conversation about anything other than what's wrong with you that really bugs me. I mean come on I have other interests gosh and don't like to focus on what I can't do anymore but rather what I can yet people seem to love reminding you of your limitations which I'm quite aware of I don't need reminding like you said we're all pretty much qualified to be specialists on WG that's for sure lol

Swb21188
12-01-2014, 10:39 PM
Before I was diagnosed it was pretty obviously there was something really wrong especially to the people who were around me a lot like my co workers. When I was finally diagnosed I decided to keep it to myself and my immediate family. Partly because my boss was a complete prick and would have fired me but mostly because I am a very private person and am not comfortable putting myself out there. I found this quite easy all I had to say was "it's not cancer" and people would automatically assume it wasn't serious and not ask any more questions. Personally I do prefer people not knowing I am "sick" but I too get frustrated with the assumption cancer is the only illness the is truly serious.
Not long ago I had a girl come in to my work place and ask me to buy tickets in a raffle which provides wishes for adults with cancer. I asked her do you do this for only cancer patients or do you include all patients who have terminal illness , you can guess what the answer was. I have also known numerous people who were diagnosed with cancer who went on to be cured something we can only hope for. One day in a moment of letting my guard down I said I would prefer most cancers: I would have the same chemo and same side effects but with a possible all clear at the end.

Swb21188
12-01-2014, 10:58 PM
You do realise this forum was started by an Australian. Australians do support each other you only have to ask

Swb21188
12-01-2014, 11:00 PM
I have a, so found very little support here in Australia. This forum has given me support just by reading others thoughts. Isolation from understanding advice has been a real problem for me.
You do realise this forum was started by an Australian. Australians do support each other you only have to ask[

ozterry
12-02-2014, 07:35 AM
I don't appreciate being hijacked. I was referring to support in terms of information on this disease and its issues, NOT on Australians and their attitudes to people in need.

Swb21188
12-02-2014, 07:47 AM
I don't appreciate being hijacked. I was referring to support in terms of information on this disease and its issues, NOT on Australians and their attitudes to people in need.
I was referring to on information and support on WG. Sorry you felt you were being hijacked, but this forum and others do provide information and support to everyone. There are also many doctors who are very up to date on the latest treatments and yes like everywhere in the world there are many you aren't.

ozterry
12-02-2014, 07:55 AM
Yeah, OK sorry, feeling not so good today. :)

mishb
12-02-2014, 08:20 AM
Terry, I'm sorry that you are not feeling well today.
It's only early. Hopefully things will look brighter as the day goes on. :hug2:

Swb21188 - are you on facebook? We would love to see you in our Australia and New Zealand WG Group.

'miracles' hubby
12-13-2014, 03:12 AM
I have a hard time, as the spouse of someone who has WG when it comes to work, I have been lucky so far with my jobs being understanding of the time I have to take off to help my wife, especially on bad days, but it is one of those things when I am starting new jobs that I ease in to telling them, I mean it is a part of my life, but one of those things that would be a major faux pas to mention at an interview, 'hey by the way my wife has a major chronic auto-immune disease that I will have to take time off of work to help care for her when she isn't feeling well, I hope that isn't a problem'


Sent from my iPhone using Tapatalk

'miracles' hubby
12-13-2014, 03:25 AM
I don't voluntarily offer up information about my condition anymore. I too have had a few people give me a frightened high brow when mentioning AI. Having a cochlear BAHA I get a lot of questions. If I must explain my condition; I simply tell people that I have a rare form of Vasculitis. Wegeners GPA. That usually satisfies their curiosity.

A lot of times in stressing how bad it is for us, my wife will be trying to explain what is going on and, well I have a sister who is a nurse practitioner, and she often makes comments that my wife is exaggerating how bad it is, or she is attention seeking... It is a constant battle for me being between the two of them. Because my sister just doesn't understand, I mean sure she understands what the disease is and how it affects the body, but she doesn't understand how it FEELS!


Sent from my iPhone using Tapatalk

me2
12-13-2014, 12:04 PM
That is so great miracleshubby that you are sensitive enough to try and understand how bad this illness can affect someones life and how difficult it can be just to function at times. I have found most often that most medical professionals profoundly mis-understand how debilitating this illness is. They didn't know me as a person who worked 80 hours a week, they didn't know me as a person who climbed mountains, they didn't know me as a martial artist , they don't know how tough I am and what it means for me to say I am in pain and can't function.
After being blown off as a complainer , whiner and attention seeker it takes its toll on the mind and spirit.

I hope you know what a incredible blessing you are as an advocate , as someone who believes in your wife , as someone who will step in when necessary and set people straight.

Most people will never in their lives experience chronic, life threatening , debilitating illness like this and so they have nothing to compare it to. Very few people without experience have the depth of compassion and willingness to try and understand that you do. Thanks for being there.

miracleshappen08
12-16-2014, 11:37 PM
Me2, I'm very glad for my husband!! He has been the biggest blessing to me! He does understand in the fact that he has had to sit by my bedside at the hospital knowing that I may never come out of a coma. My surgery last year, I went into it with both of us knowing that I only had a 30% to live. And I went to the doctor yesterday to find out that the WG is eating the bone in my face. They don't know if they can stop it and if it continues it will eat through my inner ear and in to my brain. It has already eaten through part of my eye socket.

annekat
12-17-2014, 05:47 AM
Me2, I'm very glad for my husband!! He has been the biggest blessing to me! He does understand in the fact that he has had to sit by my bedside at the hospital knowing that I may never come out of a coma. My surgery last year, I went into it with both of us knowing that I only had a 30% to live. And I went to the doctor yesterday to find out that the WG is eating the bone in my face. They don't know if they can stop it and if it continues it will eat through my inner ear and in to my brain. It has already eaten through part of my eye socket. If your disease is under control with meds (which I don't know if it is or not), it should stop "eating away" at things, I'd think. Your recent posts have caught my attention because I, too, have had the obliteration of the septum, turbinates, and the thin bones in the nasal cavity that used to separate it from the sinuses. And I, too, have had some erosion of the bones in the orbital socket, the ones that separate them from what used to be the maxillary sinuses and are now the common cavity. For me, this causes double vision, due to the support of the eyeballs being undermined and them not working well together when focusing. My ENT showed me the images from the MRI. I asked him if he thought it would get worse, and he said no. But I don't know how he could know, really. The good news is that my latest blood work showed my inflammation level to be completely normal for the first time, probably, since I've had this crappy disease. So, there is not currently a lot of disease activity taking place. I wish the same for you. And nice to see your sweet hubby on here.... I hope he continues to chime in whenever he feels like it.

miracleshappen08
12-17-2014, 05:55 AM
Yeah... This is the hard part for me and the doctors. My blood is coming fine, but the disease is still very active. I have been on MTX for years now and have had RTX. So I'm not sure what the next step is. But the pain sucks so bad!!!

annekat
12-17-2014, 06:32 AM
Yeah... This is the hard part for me and the doctors. My blood is coming fine, but the disease is still very active. I have been on MTX for years now and have had RTX. So I'm not sure what the next step is. But the pain sucks so bad!!! This is so unfortunate, and I'm so sorry about the pain. I think I've already said this on here, probably to you, but I asked my ENT why is it that other people with sinus destruction and common nasal cavities are having a lot of pain and I'm having none at all. He said it is because the tissues in there are all healed, and he says he sees no likelihood of problems for me in the future because there are no sinus pockets for infections to collect in. But if the disease is still active, which could be more so with me in the future, then I'd guess there'd be granulomas in there cutting off the blood and oxygen supply, chewing things up and causing tissue death, obstructions, and pain. So I am not assuming that I am out of the woods. But it seems so unfair that people who've had Wegs a lot longer than I are still feeling that pain on a daily basis when I'm not, and in fact, have never felt any pain in the sinus and nose area to speak of. But who ever said that Wegs was fair? Best wishes for improvement for you.

me2
12-17-2014, 02:59 PM
I have had sinus involvement since way back when and I believe I have even had slight septum involvement at times
( but no direct evidence of it, just a strange sensation) so I cannot say I have been through exactly what your are going through. It does make me wonder though (forgive me if you have talked about this elsewhere) if you are on a strong antibiotic rinse and the steroid rinse of budesonide?

I don't know that this treats what you have exactly but in my case this combination was helpful with controlling inflammation and infection in my sinuses. If I remember right sinus and septum problems seem to come and go independently of the rest of the disease- rather mysteriously. What I do know is there is correlation between staph in the sinuses and regular disease activity.

If it were me , I would think it would be worth a shot to keep up a strict regiment of these two things in the hopes it would help. I think the risks are very minimal.