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coffeelover
03-18-2009, 12:31 PM
Today I had the day off and I watched Oprah. She had on some celebs that have been diagnosed with chronic life threatening illnesses. Her main guest was Montel Williams who has been living with mutiple sclerosis for 10 years.
Anyway.........All these life threatening diseases such as WG have the same coping type symptoms and the same way to deal with the disease. Depression is a key factor in a chronic illness and all the celebs interviewed expressed a grieving period followed by a "new normal".
As I read through some of the posts from the last few days....The new Normal is what comes up over and over again. This was the best advice I got when I entered this forum. It certainly changed my outlook.
My WG has not hit as hard as others...but it is still a life changing event for a typically active person like myself. I tend to want to keep up my busy schedule and even make myself busier, maybe to prove this WG that I am the boss. Todays program and the posts from today have reminded me that even though I am in charge, I am not necesarily the boss.
I can, however, decide how to deal with what I have been given and move forward from there.
thanks for listening
coffeelover, Lisa

Doug
03-19-2009, 03:01 AM
Today I had the day off and I watched Oprah. She had on some celebs that have been diagnosed with chronic life threatening illnesses. Her main guest was Montel Williams who has been living with mutiple sclerosis for 10 years.
Anyway.........All these life threatening diseases such as WG have the same coping type symptoms and the same way to deal with the disease. Depression is a key factor in a chronic illness and all the celebs interviewed expressed a grieving period followed by a "new normal".
As I read through some of the posts from the last few days....The new Normal is what comes up over and over again. This was the best advice I got when I entered this forum. It certainly changed my outlook.
My WG has not hit as hard as others...but it is still a life changing event for a typically active person like myself. I tend to want to keep up my busy schedule and even make myself busier, maybe to prove this WG that I am the boss. Todays program and the posts from today have reminded me that even though I am in charge, I am not necesarily the boss.
I can, however, decide how to deal with what I have been given and move forward from there.
thanks for listening
coffeelover, Lisa
Now you are a fully initiated Weggie, I think! You are in charge of your WG, and the matter of who the boss comes down to your personal beliefs. As a Christian, I have had long "discussions" with God about the course of my disease and the treatment. It helped me immensely to find the inner peace that I feel now. Sangye speaks of our challenge as not one of fighting WG till we win but of floating to each "new normal" and finding inner peace there. I paraphrase her thought, but I think I got it right!

andrew
03-22-2009, 08:07 AM
Todays program and the posts from today have reminded me that even though I am in charge, I am not necesarily the boss.

Excellent way to put it. I like it. I guess it's all about responding positively to the changes that the WG brings. Oh so much easier said than done but it's your mental state that can be the best assistance in coping with your new normal when your body is up on blocks.

Terri
03-29-2009, 01:30 PM
I saw the show with Montel. I cried through the whole thing.
I could feel his emotion when he came out thanking Oprah for having him on the show and getting the word out about these disease's.
Like he said, people see us and we "look" as though nothing is wrong.
He inspired me so much that I'm working on starting a support group for people with autoimmune disease. I know how lonely I feel sometimes and although the internet is great for getting support and to see how others deal with ongoing problems, it still doesn't replace a hug!:):D

andrew
03-29-2009, 07:39 PM
I know how lonely I feel sometimes and although the internet is great for getting support and to see how others deal with ongoing problems, it still doesn't replace a hug!:):D

Absolutely agree. One day I'll meet another Weggie and we'll have a group hug :D

Let us know how you go with the support group and we can advertise it on here.

Terri
03-30-2009, 12:26 PM
Will do, Andrew
The closest support group in my area is two hrs away.
I've talked to several people that say they would welcome some support.
I don't know of any local weggies but several close friends with MS and some with thyroid disease.
I'll let you know how things go. Thanks

Doug
03-30-2009, 12:37 PM
That brings up a question: Has anyone on this support site ever met another Weggie? :confused: (I'm still waiting to meet one.)(15 seconds later: Yep, still waiting!

andrew
03-30-2009, 03:12 PM
That brings up a question: Has anyone on this support site ever met another Weggie? :confused: (I'm still waiting to meet one.)(15 seconds later: Yep, still waiting!

Nope, never ever. I've spoken to a couple on the phone but no in-person meetings.

jola57
03-30-2009, 04:21 PM
Same here, I know of someone in Maple Ridge from our site here but never met them, Germaine is in Nanaimo, so maybe we can all meet one weekend.

Luce
03-31-2009, 03:40 AM
Through Facebook I came across a girl who's only 2 years younger than me and went to the same school as my brothers and sisters, she still lives in the same town as my parents which is only half an hour away.
We're getting to know each other online at the moment but I wouldn't be surprised if I bumped into her shopping in town or at the hospital as we're both treated at the same place.

Doug
03-31-2009, 04:12 AM
Great! I was beginning to think we were like unicorns or leprechauns: Myths; each others' fantasies, perhaps; singular unto ourselves, all other Weggies a Prednisone delusion we can't shake. :D

Luce
03-31-2009, 07:09 AM
This is so bizarre - although I don't think my Facebook friend is a member of this forum, I've just logged on and she has suggested meeting up some time soon! I'm sorting it out with her now and will let you know how we get on.

Doug, are you trying to tell me unicorns don't exist?!

Doug
03-31-2009, 12:44 PM
:rolleyes:Of course they do! :p:D:)

coffeelover
04-01-2009, 12:08 AM
Doug,

MN and Nebraskaare not that far from each other...maybe someday we will meet?
Lisa

Doug
04-01-2009, 12:49 AM
Lisa- From here, it's a good two day trip to the Twin Cities. By car. By plane, I'd fly to Denver, then to the Twin Cities, then... Sioux City, Iowa, is on neutral ground, and is about a good one day drive from where I live.
Theoretically, It could happen!

Whhoooee! Coffee brewer just signalled coffee's done! :p

Luce
04-01-2009, 03:01 AM
Doug, just noticed your bunny comment and yes my fellow WG friend does have a rabbit of the opposite sex called Dexter!
Also we both have 2 rats so it's a match made in heaven.

Doug
04-01-2009, 04:52 AM
Doug, just noticed your bunny comment and yes my fellow WG friend does have a rabbit of the opposite sex called Dexter!
Also we both have 2 rats so it's a match made in heaven.

OooooooowoooooooOOOO! That you two both have WG is unlikely, that you both have pet bunnies is improbable, that they are of the opposite sex is a bit more improbable, that you both have pet RATZ.....! Rats are nice, too, if not of the wild Norwegian variety. I remember one named Barney! (Notice demon rabbit has a bit of a rat trail....):eek::eek:

Luce
04-01-2009, 05:26 AM
Oh Doug the coincidences don't end there - my friend Dyllan's rabbit is called Dexter, I have a guinea pig of the very same name. She used to have a rat named Domino, the rabbit I lost just before being diagnosed with WG was called... Domino!

Rats, rabbits, guinea pigs, cats, dogs - I love all things furry! Rats are fantastic little things that are great to watch, however I don't handle mine very often now as there are few nasty things you can catch from them. Fine for someone with a robust immune system, not good for a weggie.

I am meeting Dyllan next Thursday in a local Starbucks of all places (yes they're all over England now too) for a hour's chat or so.

Doug
04-01-2009, 05:35 AM
I told you before unicorns, erm, exist merely to humo(u)r you! With this collection of improbabilities you and your friend Dyllan have run up, I'm starting to believe you just may run into one at Starbucks! Or, find out you are long-separated identical twins! And that your birth name is Nallyd!

coffeelover
04-01-2009, 12:57 PM
Ok Luce,

Now this is definately a coincidence! I had a rat (named Daisy) and raised guinea pigs for many years. I had too many to mention their names...but I remember my favorite one was Velveteen and I had an Amos with red eyes.
I like the furry creatures as well, but cats are out of the questions as they make me sneeze and cry alot.
Lisa

RCOSSIO
04-02-2009, 12:49 PM
The only other Weggie I met was my uncle who was diagnosed in 92...

Doug
04-02-2009, 02:57 PM
Gad! The odds of WG in one family at this degree of relationship must be in the billions to 1! I haven't heard or read of any uncle-nephew weggies since I became aware of the disease. Have you heard or been told how likely this is to happen in a family, Richard? How's your uncle doing?

pberggren1
04-02-2009, 05:40 PM
That is definitely rare Richard. I have never heard of any family members that close having WG.

Does anyone remember a group of people in Montana having WG? I think there was a study done about them because they were mostly from the same town or county or worked at the same place such as a mine, I think. Does this sound familiar to anyone?

I have met 2 Weggies. One Weggie, Sharon Bourassa, helped me get my current Rhuemy. She was very helpful, drove me around Saskatoon, took me out for lunch, etc. I first met her back in November of 2004.

The other Weggie is Dorothy Spence from Calgary, Alberta. I spent a couple of nights at her place when I had an appointment with her ENT, Dr. Borys Hoshowsky back in April of 2005. Very good ENT, very thurough.

Does anybody else here know of these Weggies?

Does anybody here receive the Vasculitis Foundation Newsletter?

Over and Out,
Phil of the north

Jack
04-02-2009, 05:59 PM
I seem to remember my Consultant telling me that there was only one known case of two people with Wegener's in the same immediate family. This was when we were discussing the possibility of it being hereditary.

Doug
04-03-2009, 02:10 AM
Since WG is for life, I decided to become a life member of Vasculitis Foundation a couple years back when I had some spare cash. (Remember "spare cash"? Ahhhh!) I find the newsletter it a good source of current information on the disease, and it helps me to formulate questions for my doctors. It is just one such tool, however, as this website and what I find on the Internet also help.

The Vasculitis Foundation funded a study in two sites where the incidence of WG is in excess of random occurrence. Both are mining areas. One is in Pennsylvania, and is headed by a Dr. Albert, I think his name is. The other is in Montana, but I don't remember the doctor's name. That doctor is a woman associated with a different university as I recall. I tried locating results of these studies on the internet, and didn't have great luck. I did find a site that addressed issues of exposure to industrial solvents as a possible trigger for WG, and recognized, in a comment, the content of an e-mail I sent Dr. Albert years back when I heard of the study. He's associated with the University of Pennsylvania. I'll see if I can find the site again.

p.s.- a few minutes later: I entered "Wegener's granulomatosis & Dr. Albert" (both at same time), and quite a few things came up. You can try it and see what interests you.

Terri
04-03-2009, 11:42 AM
I too joined the Vasculitis Foundation after being diagnosed in Aug. 2007.
I read the newsletters from cover to cover.
This year vasculitis awareness week has been bumped up to May instead of September. The theme this year is "sticking together for a cure".
I usually try and put something in my local paper to raise awareness.
Some year I hope to be part of the symposium. That would be the chance to meet lots and lots of "weggies":cool:
Does anyone on this site suffer from granulomas on your legs?

Doug
04-03-2009, 12:05 PM
I always visualize me being in a parade of one. The note to the editor is a thought. Where there are so few with the disease where I live, the VF awareness activities seem limited in value. What do you think? If I count just the county where I live, that makes me approximately 1 in 13000 with the disease. Other diseases under the vasculitis umbrella might yield a handful more for the "parade". I put one of the little stickers on my bumper and a window on my front door. The one on the bumper wasn't a good idea- moisture wiped it out. The one on the door is a bit better. :o

pberggren1
04-03-2009, 01:15 PM
Thanks Doug and Terri. How much does it cost for a lifetime membership? Or even a yearly one?

Does anyone know when and where the next symposium will be?

Over and Out,
Phil of the north

Doug
04-03-2009, 02:22 PM
It's US$30 for international annual memberships and US$500 for lifetime memberships. I've misplaced my latest issue, so can't help on what's coming up. I imagine accessing their website would help there.

Sangye
04-04-2009, 12:56 AM
Terri--I've had granulomas on my leg non-stop for almost 3 years. The last one grew to the diameter and thickness of my palm and finally--after being open around 1.5 yrs-- closed about 3 weeks ago. Shhhhh! Don't wanna wake it up.

Doug--I think it's funny that the VF sticker didn't last on your car bumper. I mean, isn't that just like Wegs--it's just GOTTA be different from all the others. :D

coffeelover
04-04-2009, 01:05 AM
I checked out the VF website and am considering joining as well. The fee's on the internet are $25.00 for the year in the US, $30.00 international and lifetime is $500.00. The address is Vasculitis Foundation
PO BOX 28660
Kansas City, MO 64188-8660 USA

or you can copy the form off the internet and fax the form to 816-436-8211
I am taking my information directly from the form I took off the website.
lisa

Doug
04-04-2009, 01:25 AM
Sangye- On the other hand, the sticker is so pathetic, you just know WG is an orphan disease! Haw! :D

(p.s. Nice you are better! And getting back up to speed on your joking around!)

Terri
04-04-2009, 09:03 AM
I don't think it has been decided yet for the next symposium. check out the site Front Page | Vasculitis Foundation (http://www.vasculitisfoundation.org) . They are also doing surveys to find what works best for future symposiums. You can find that there also.

RCOSSIO
04-04-2009, 10:01 AM
Doug,

My uncle was diagnosed in 90 with limited WG...he was in remission till 2003 and then was aggressively treated for two years with Cyclophosphamide. Unfortunately..he developed leukemia apparently due to a drop in his cell counts. He passed away in 06...but keep in mind he had other health issues (heart attack, high cholesterol, a stroke (overweight) prior to WG which affected him greatly when he relapses...

My grandfather, uncle's father passed away of kidney failure and we believe he might have had WG...but because the diagnosis back in the early 60's was limited especially living in Cuba we could never ascertain if WG was the cause.

Just recently I found out that my first cousin from the same grandfather lineage just contracted some autoimmune disorder...which is affecting his skin and throat..not WG.

I just receive a kit from Mt. Sinai hospital for a genetic study...let's see!

Sangye
04-04-2009, 11:21 AM
I did that kit, too! No one in my family has had anything like Wegs, or any AI disease, but I hope it helps researchers.

Doug
04-04-2009, 11:25 AM
Doug,

My uncle was diagnosed in 90 with limited WG...he was in remission till 2003 and then was aggressively treated for two years with Cyclophosphamide. Unfortunately..he developed leukemia apparently due to a drop in his cell counts. He passed away in 06...but keep in mind he had other health issues (heart attack, high cholesterol, a stroke (overweight) prior to WG which affected him greatly when he relapses...

My grandfather, uncle's father passed away of kidney failure and we believe he might have had WG...but because the diagnosis back in the early 60's was limited especially living in Cuba we could never ascertain if WG was the cause.

Just recently I found out that my first cousin from the same grandfather lineage just contracted some autoimmune disorder...which is affecting his skin and throat..not WG.

I just receive a kit from Mt. Sinai hospital for a genetic study...let's see!

Fantastic, Richard! You are fortunate to be able to participate in the genetics study. I believe, strongly, that what you are doing is one way we Weggies can make significant contributions to knowledge and issues of our disease.

I had the same response to Cytoxin- both my red and white counts were down to alarming levels. I had a few blood transfusions over the course of the first two years dealing with the disease. I had weekly Procrit shoots (10000 units, I believe it was) two years until my bone marrow (finally) produced enough of both types cells to allow me to go off it. The last half year I was moved on to CellCept, if my chronology is on track. My doctor wanted me to try CellCept because I had been on Cytoxin too long because of my high blood and urine test values. After a long duration pattern of being free of symtoms and still having high but consistently stabile test values, my doctor and the Rheumatologists at University Hospital in Denver decided to try me on the CellCept.

This brings up another thing. I started a written diary of my treatment, but that effort was wiped out by Prednisone side effects: I couldn't concentrate long enough to write a coherent sentence, let alone a narrative! Were I to have a flare, I believe I would try an audio version of a diary. :confused: It is diffucult keeping the chronology of the disease straight.

Further...The Montana study is summarized in the Vasculitis Foundation web site. There's quite a lot to go through, more so than when I first found it in 2004, and it is much improved and enriched in content.

Yet more... YouTube has a few Weggie videos. I haven't had time to go through them all, this being tax season and all! One was a Weggie describing the disease and how it affected him. Another had a doctor describing the same things from a doctor's perspective. There were some Vasculitis Foundation videos of past conferences (edited- not the whole thing).

Incidentally, I'm a fan of Cuban music. Just the tonic for a cold Winter's night! Cuban Baroque is phenomenal, too, with Salas being my personal favorite. :)

Jack
04-04-2009, 05:36 PM
treated for two years with Cyclophosphamide. Unfortunately..he developed leukemia apparently due to a drop in his cell counts.
Two years on Cyclophosphamide seems like a very long time! My own Consultant is very cautious about its use and I think I have only ever been on it for around six months. I believe its effects are also cumulative and he is very reluctant to use it on me in the future.

It is a highly toxic drug - I remember when I was taking it I.V. it came in a bag with orange and black stripes with "Danger" written on it!

coffeelover
04-06-2009, 01:13 PM
April 5, 2009 Free Press syndicate article by Dr. Gott was an article about the vasculitis foundation and some of the symptoms of WG. Were any of my Weggie friends on this site responsible for getting that information to Dr. Gott?
LIsa the coffeelover (needing one now)

Doug
04-06-2009, 02:33 PM
Interesting article!

RCOSSIO
04-07-2009, 10:24 PM
I have been on Cyto for 10 months and my Rheumy is looking to switch me to Cellcept next month. Hopefully the switch is not problematic.

Sangye
04-07-2009, 11:07 PM
I hope you do well on Cellcept, Richard. I don't have many side effects on it at all-- nothing like Cytoxan! It's pricey (about $900 a month) so I hope you have good insurance. I'm even able to stay off pred because it works so well. I still have a lot of Wegs symptoms that keep me pretty miserable, but my doc says they're not amounting to anything (ie, a flare).

Doug
04-08-2009, 12:35 AM
Richard-

That's a good sign! CellCept was a lot easier to tolerate than Cytoxan for me. I don't think most people have problems with it, and your doctor must be satisfied you are at or near remission to consider it.

RCOSSIO
04-10-2009, 04:30 AM
I will let both of you know by May which is when I should be able to switch. ...it would be great when one day...it will have to be NONE:):):)

Doug
04-10-2009, 03:30 PM
:) for sure!