Does it bother anyone else

[annekat]

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]

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]

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 !!!


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[lag713]

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]

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]

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]

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]

Very very little support in Australia

You just hadn't found the right place yet Bek

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

[ozterry]

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]

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.