Hello

[Breezy]

Hi everyone,

I joined last year, when doctors suspected GPA and were investigating the cause of all my problems...well, now its official. I was diagnosed December 2nd 2015...a couple weeks before Christmas. Its been a whirlwind of doctor appointments, meds and just trying to deal with everything. The more I learn, the more I think, why me. I am trying to stay positive but it's hard when your looking at all the info that comes with the diagnosis. So far, I have been very lucky and haven't had kidney involvement and my lungs aren't too bad. I get a lot of bronchitis, virtigo (that leaves me bedridden and vomiting for days/weeks) eye issues, muscle and joint issues, ear problems ugh. But the fatigue, cognitive issues and malaise is what gets me the worst. This disease has taken ME away...and I am desperate to get some kind of normal back. Sorry for the long rant and woe is me...I just feel so alone at times...my close family (mom, dad, brother, sister inlaw) they are very supportive and have looked into what GPA is, but my other family havent, its like, Oh yeah, its that thing you have. :/

[mishb]

I'm sorry that you have a diagnosis of WG/GPA but at least they found the problem and you are not left hanging, without treatment, for years.

The plus side, (if there has to be one) is that you can now hang out with us :wink1:

There is no reason to feel so down on yourself, but you can rant and rave on here as much as you please. We are all here to listen and we have all been through it.
The is another thread going at the moment from Mark from OZ. In this thread you will see a post from me2 saying that he has had WG for 30 years.....and he is doing fine.

It is important to have family support, but not every one gets it, and that's okay too.

Keep your chin up, and ........

[Breezy]

Thanks Michelle :smile1: it took them a year to diagnose me, but I have read that others have waited longer and some are still waiting, so I am happy that I am getting the treatment I need now. I totally forgot a bunch of stuff...like my name and where I am from haaha. My name is Bre, I am 35 and live in South Australia haha. Dur me. I am thankful for this site and for the family that are supporting me right now...its just been a tough couple of months. Thanks so much for warm welcome and encouraging words :smile1: from what I have seen, this is a wonderful bunch of people, so its definitely a plus lol


Bre

[mishb]

Another Aussie :hug1: nice to meet you Bre.
I just presumed that you were from USA because you said 'mom' instead of 'mum'

Yes you are correct, it is a great bunch of people here.

If you are on facebook, we have an Aussie and Kiwi group, with 7 from SA, at last count. The link is below

https://www.facebook.com/groups/516643745050360/

[Debbie C]

Welcome Bre ( unfortunately ) but Michelle is right about everything. This is a great place to come for what ever reason and there are so many Aussis here that I am sure you will find friends near you. Now that you are on the meds you need ..what are you on by the way ? You will begin to start to feel better but it will take awhile to get to your "new normal " Take care and keep us posted.

[Birdie]

Welcome Breezy,


Sorry for the long rant and woe is me...I just feel so alone at times.... :/

Sorry I missed the long rant, or were you talking about this post? :) :) :)

Many people actually do a long rant on their first post:

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4932-wegener-s-sucks-case-someone-didn-t-already-know-5.html#post98791


my close family (mom, dad, brother, sister inlaw) they are very supportive and have looked into what GPA is, but my other family havent, its like, Oh yeah, its that thing you have. :/

Your "other family" need to read Spoon Theory:

But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

Stick around, ask many questions, learn as much as possible before your next doctors appointment, and hang in there...

[Middlesista]

Hi Bre - I so understand when you write that GPA has taken "You" away and wanting to get your normal back. Don't know why we all drew the short straw but "it is what it is" as much as it su**ks and going forward think it is important to do the best we can to strive to regain our health . I am fairly new to this also Bre and I am hopeful after reading info on this site. I just finished Rituxin a few weeks ago and am waiting for improvements.

[debra]

Breezy, hi. I too wanted to welcome you. I laughed because you used one of my favorite sayings, woe, is me! Yes, yes it is. Not you ,Breezy, referring to myself. I'm sure you will see improvements, fast. I mean hey, at least you have a diagnosis! Maybe not as good as hitting the lotto, but hey, it is what it is. Maybe those other things are coming. Sure they are... My stuck sister, hi! Sista, let the suck, just fly! Okay? Ha ha... Sista, hope things are improving for ya..... Deb.

[annekat]

Bre, I'm glad you came back to us after getting an actual diagnosis. Although I'm sorry you ended up having WG. This is indeed the greatest group of people I could ever have imagined it to be, and I won't miss a day of checking in here, usually at least 3 times. It has helped me through this immensely. For me, it's almost 5 years since start of treatment, and I did go 2.5 years without a dx, so some significant damage was already underway. But I am pretty well stabilized, though still on the treatment meds, at lower doses and milder meds than I started with. We'd be interested to know what meds you are on. It has only been less than a month of treatment, and no doubt, a lot of the negatives in how you feel physically and mentally can be attributed to those. It takes awhile to get used to the meds. As for the rest, the disease will be slowed down and hopefully stopped in its progress, and you will feel better. Right now, it is normal to want to sleep all the time, etc., and you should. Little by little, you can start functioning somewhat normally again. It took me a month and a half to be able to be functioning out in public, except for quick trips to the grocery store and doc's appts., and that was pushing it a bit. Sounds like you have enough family support to help you through this time, and the ones who think it's just "that thing you have" may come around in time. Best of luck, ask any questions, post longer rants if you want, and keep us informed on how things are going.

[Debbie C]

I am just checking my comp. ( sorry to hijack this thread) I wrote a message on Dales thread and it won't let me enter it. Just the blue circle keeps going around so I wanted to see if it works here.
Hi again Bre !!!!

[Breezy]

Thanks everyone!! Sorry I havent been on, its school holidays here in oz so the little monsters are keeping me pretty busy *whew*...I'm on 15mg methotrexate, 75mg pred, 300mg lyrica, some anti-depressant and an antibiotic, not sure which cause I cant remember the names lol...I had a follow up Rheumy app a few days ago and hes added another disease, I also have Rheumatoid Arthritis. Good thing is the treatment is basically the same so thats a plus :D. It is what it is! BTW thats one of my fav sayings these days hah... I really appreciate all the warm welcomes and advice and the links for the spoon theory (Birdie) thank you...its just nice to have somewhere to come where people know what you are going through and understand how it is all affecting you. I'm sorry we all have to be here but I'm glad at the same time lol

[mishb]

Hi Bri,

Your meds soind very familiar. I also have RA and Lupus and a bundle of others.
.......and yes, the treatment is the same.

Are they sure it's RA and not just WG causing the joint pains? The joint pains are very common with WG.

As you say, it is what it is

I hope the inflammation and pain levels start to get better quickly so that you can start reducing that pred to a much nicer level.

[Birdie]

and the links for the spoon theory (Birdie) thank you

Spoon theory rocks! Wake up the friends and relatives, get em in your corner even if you don't look sick.

Hold on for the ride Breezy, it's wild at 75 mg of pred. Just make sure you don't reduce too fast or too soon, let the Wegener's make that decision. You want it under control or you'll be right back for more.

[Alysia]

Welcome bre. I think you are in good hands. If my impression is correct, then the weggies from Australia are in the best shape and doing much better, compared to weggies in other countries.

And I think that I know the aussies's secret.

They have Michelle.

[annekat]

And I think that I know the aussies's secret.

They have Michelle. Double-like on that one! I'm glad you are back posting and hanging in there.... 75mg. pred is a lot... I hope Michelle could be right and you are feeling joint pains from WG and possibly not from RA? But then, listen to your docs as long as you feel they are competent. Best of luck with it all.

[BookNut]

Hi Breezy! Welcome to the best medical forum ever. I hope you are feeling better. Prednisone at high levels is the pits. It messes with my disposition. And I have to go over and over important things like sorting my medicine, because it is so easy to get distracted when the brain is on a prednisone buzz. You will find tons of helpful advice here from some very awesome folks. Hopefully you will find a med regimen that works well for you!

[mishb]

Welcome bre. I think you are in good hands. If my impression is correct, then the weggies from Australia are in the best shape and doing much better, compared to weggies in other countries.

And I think that I know the aussies's secret.

They have Michelle.


Thank you lovely lady, but I don't believe that I can take the credit for this one :blushing:

It is true that we do appear to be fairing better than others, but there are some that are still in a bad way.
I believe that if you find the right specialists, that most of the time things will be on your side.

I'm sure it also has a lot to do with this fantastic forum, and also our Aussie leader Andrew, and I can't go past the fantastic members of our Aussie and New Zealand facebook group.
A special mention also goes to Dr. Phil and Batman, and Jack and Al and Lightwarrior and all others that are watching over us.

[mishb]

Andrew puts it down to the high quality beer :thumbsup::lol::lol::lol::ohmy:

[Alysia]

Thank you for remembering dr. Phil. He is taking care of weggies all over the globe and when they die he is the first to welcome them to heaven and to show them around.

Your credit is still valid. And I guess your docs are more decent and serious.