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sharon
04-29-2010, 01:48 PM
Hello everyone,
i have been dignosed with wegeners for 3 years now, it is so nice to know that i am not the only one going through this very stange and at times lonely disease. I have been nervous about the whole internet thing, but it is time i bit the bullet. Here goes, my story is very similiar to that of others, i had stange lessions and rashes all over body, pain in all my joints, i could hardly lift a cup up, and nosebleeds coupled with asthma & sinus all of which would not respond to treament of course, for over 6mths. I went to my GP very sick and in a lot of pain once again, he sent me for x-rays and thats when it all started, i was put into hospital that afternoon with suspected advanced lung cancer, only to find out approx 10days later that Wegners was the diagnosis, my life has not been the same since, i have new normal now, still trying to learn the lesson of not overdoing it though, yes, i am a bit stubborn and frustrated with this whole thing. i get fatigued easy and my lungs are still not clear.
But at least now I know i am not going crazy slowly with all the strange symptoms, that my drs have never heard off. One more thing, i was wondering did anyone else get a reaction to the new flu vax?
thanks

elephant
04-29-2010, 09:01 PM
Welcome Sharon, yea I hear you on the new normal, I take it one day at a time and see how I feel and then figure out what I can do that day ( exercise or just stay in and rest). I took both the flu shot and H1N1 and no reactions.

Sangye
04-29-2010, 11:58 PM
Hi Sharon, nice to meet you! Lisa (Coffeelover) is going to love your avatar. :D

How scary to be told you had advanced lung cancer! I was told several possibilities, but it was clear it wasn't cancer at least.

I don't get vaccines. I had tons in my early 20's (in addition to childhood) and feel that was a trigger for the Wegs, in combination with other toxic exposure. One new member (I'm forgetting the name-- maybe Nancy?) posted yesterday that her 12 yr limited Wegs turned into kidney involvement after the H1N1 shot. What was your vaccine reaction?

Col 23
04-30-2010, 02:40 AM
Hi Sharon
Glad you found this group.
I was told I had stage 4 breast cancer before diagnose Xmas 2009. So understand what you have been through there and a lot of the group here have similiar stories. Misdiagnose is a real and life threatening issue with Wegs. I also thought I was going crazy going back to the docs every week.
Im not having any vacinations until I get into remission.
I have never had any success with the pnuemonia vacs as I always got pnuemonia and I dont trust the flu vacs. But just my opion. I know we cant have he live ones. This was confirmed by another member of the group. What meds are you on after 3 years.
Col 23

Sangye
04-30-2010, 02:47 AM
When I asked my first doc how many people have Wegs, he said they don't really know because many are diagnosed at autopsy-- either they had Wegs for years and didn't know it, or they had sudden and severe onset and died before it was dx'ed.

sharon
04-30-2010, 09:59 AM
Hi Sangye,
thanks for your reply, the most scary thing about the lung cancerscare was that just 2-3 yrs before my diagnosis, we nursed my husbands father until he died of lung and brain cancer, i had 3 young children, so wegners was a relief, a lesser of two evils so to speak.
On the subject of the flu vax, i had the needle in the morning, was fine most of the day, tired, but that's normal, it was late in the afternoon, starting getting aching pain accros the back of my chest, continued cooking tea, within an hour, i had a lot pain that wrapped right around my chest, felt like i was being constricted, weird i now, what i imagine wearing a v tight corset would feel like. Had no temp though, i took some ds symbicort & Brufen, my thinking it must have triggered some inflamatory response, we are lucky enough to have one of those spa's in a bath, ran a hot one and tthe jets onto my back. It gave some relief. I rang my friend who is a nurse, kept her updated, and just rode it out. I also increased my pred. for a bit. The pain was pretty much gone by the next day, but it left my chest pretty tight and very tired. I ended spending the next few days in bed. That was almost 2 wks ago, chest still a bit more tight than usual, but otherwise ok, energy seems to be back to my normal levels. Sometimes a turtle others a sloth. Coffee and choc are best friends at the moment.
Keep smiling

sharon
04-30-2010, 10:12 AM
Hi Col 23,
With the vaccinations, this is the first time i had a bad reaction, but i would rather the reaction than swine flu. I have a few friends that are nurses and one a pathologist, they have looked after people that have had severe complications, life support etc. I still have lessions through both my lungs, the advice i got from my specialist was that the flu, especialy swine flu would be quite bad for me & high risk. So i followed their advice.
My meds at the moment are
5mg pred,
1.25gm bd cellcept
ds symbicort
calcium
& chocolate, i discovered pineapple centered freddo frogs, they call my name all the time.
In regards to remission, have your docs given you a time frame when they think you might get there? I have still not got there, initially they told me 6-9 mths, then 2yrs, but when i get there, i am having a party let me tell you.
have a great day, keep smiling

elephant
04-30-2010, 10:58 AM
Sharon, I love your attitude. Chocolate is so good. Dark chocolate is an antioxidant....so having some everyday is good. :)

julia
04-30-2010, 02:29 PM
nothing to add at the moment just want to see if I added the avitar correctly.

DEE
04-30-2010, 04:31 PM
Elephant i feel the need for one of those TRIPLE CHOCOCLATE MUFFINS DAYS again hubby shopping tomorrow :) DEE

Luce
04-30-2010, 08:25 PM
Hi Sharon

When I was first sent to A&E they took a chest x-ray and decided I either had tuberculosis or lung cancer, and put me in isolation in case it was TB. It was only after a couple of days and several consultants later they worked out I had huge nodules caused by WG. That chest x-ray was then used to educate a bunch of medical students who all told me how amazed they were that I was still breathing!

As for the swine flu vaccination, I had the two shots just before Christmas and then had a flare. I can't be sure that it caused the flare but it seems pretty likely so I don't think I'll bother with them next time. I think I'd rather run the risk of possibly contracting swine flu then putting something inside me which will probably make the WG flare.

Oh, and I really want to try pineapple Freddos! We only get the solid chocolate and caramel filled ones here.

elephant
04-30-2010, 08:38 PM
Dee, I made some chocolate chip muffins with my four year old last weak, I even made with with whole wheat flour. My kids gobbled them up and they are picky. They were delicious! I thought of you when I ate them. :) So get yourself those triple chocolate muffins and enjoy!

DEE
04-30-2010, 09:55 PM
putting on shopping list as we speak after the week ive had could do with a truck load just be to chemist to get next months drugs as i missed collecting last week
fifteen different items which had to be put in large carrier bag not least to say the size of the queue that built up while they were getting mine ready but if i had wanted them on my dicharge from hos[pital i would have had to stay in another night . funny u saying about muffins when i was in hospital all i wanted was a bacon sandwich with brown sauce because BARON came to visit one night and he had one :) DEE x

Sangye
04-30-2010, 10:57 PM
LOL-- in true Weggie fashion, no matter what we discuss it always comes back to food. :D :D :D

Julia-- I love your avatar! Very cheery. :)

DEE
05-01-2010, 12:24 AM
Sangye having withdraweral syptoms in the food department after a week of hospital food DEEx :)

Doug
05-01-2010, 05:11 AM
Nicely done! Love the avatar, Julia!

sharon
05-01-2010, 11:22 AM
hi luce
My husband a few years ago had some tb growth on the back of his neck, so when i went was admitted to hospital, they put me in isolation too, not a lot fun hey.
On the other hand, those pineapple freddos are the best, they come in the fundraising boxes, we can't get them in shops here either. My x-rays we pretty specky too.
have a great day

Sangye
05-01-2010, 12:57 PM
When I lived in Arizona, the hospital always gave me a private room because of being immune-compromised. But JHU only does that if you're WBC's are extremely low. I liked the private room because I can sleep better at night and I don't have to worry about someone (or their visitors) bringing me germs. So my plan is to just get healthy and never have to be hospitalized again. :D

DEE
05-01-2010, 05:14 PM
dont know if this is right place to post this but that was my dr problem last week he did not want me admitted through the admissions ward because of been immuine-compromised he had sevral conversation before he could get me into a single room
once he did they treated with all the care that i needed :) DEE x

sharon
05-01-2010, 05:30 PM
Hello elephant, that's what i keep telling myself!! unfortunately i particularly like pineapple centered freddo frogs & m&M's more than the dark!
Have you tried toblerone choc with a good cappacino? it's Particulary good

elephant
05-01-2010, 08:00 PM
I will definitely try to find it and drink it. Thanks

Luce
05-01-2010, 08:36 PM
Sharon you're killing me with all this talk of chocolate! I love Toblerone, especially the mahoosive bars you can buy usually at the airport in Duty Free. Never tried it with Cappuccino though...

Sangye
05-02-2010, 12:06 AM
Oh, we are TOTALLY incorrigible. :D

sharon
05-02-2010, 06:59 AM
Luce, the best method of consumption i found is to dip the choc into the coffee, then eat/suck choc off. Is not always socially acceptable, but sometimes a girl has to do what a girl has to do! LOL
I have found with this method, you never have to share either, with 3 kids it's just an added bonus - all that double dipping is too much for the kids!

jola57
05-02-2010, 10:19 AM
Oh chocolate, i am in Whistler, BC for a week and my hubby bought this Whistler organic chocolate but it was dark so I didn't taste it, he did and was very nauseous, next day he tried again and was naseous again so what could it be? Anyone, nothing in the ingredients that's out of whack just that it is organic. I didn't try it at all and don't want to. I did however buy a chocolate called Truffle Pig (kidd you not) and it was heavenly. There goes another pound up, but it was worth it.

Sangye
05-02-2010, 10:26 AM
Chocolate is very strong in the fire element (Pitta in Ayurvedic medicine). Dark chocolate is the "hottest" and certain types are higher in cocoa content, therefore even hotter. Many people get heartburn from chocolate.

About 2 years ago my soles were covered with a horribly itchy rash that no one could diagnose or treat. It went along with a huge Wegs ulcer on my shin that got blisters around it and defied treatment. An Ayurvedic practitioner treated me by cooling off the Fire and said to avoid chocolate. It was going great, rash was almost gone. One day a friend offered me a TINY piece of organic dark chocolate-- about half the length of my pinky. Within 5 minutes of eating it, my feet erupted in the rash. It was itchy beyond anything I'd ever experienced-- like torture. I'm not allergic to chocolate, it just raised my fire element instantly.

jola57
05-02-2010, 10:32 AM
Interesting, but Richard has been eating dark and very dark chocolate for years, he takes it along into back country trekking and skiing. So this was a totaly unexpected event. I will feed him another chocolate and see, maybe its just someting in this particular one that doesn't agree with him.

Sangye
05-02-2010, 10:38 AM
LOL-- you're experimenting on him like a guinea pig! :D

jola57
05-02-2010, 10:52 AM
Yep, that's the scientist in me

sharon
05-03-2010, 04:59 PM
Hi Jolanta
I have heard that eating choc is like having a hug (chemically speaking), but your poor husband, that is just not right, it's like being betrayed by your best friend! Glad you found those Truffle Pigs, was your hubby game to try them?

Doug
05-05-2010, 11:41 PM
A hug or a chocolate: If they produce equivalent results, give me the hugs any time! (You can try the chocolate/hug experiement with your husband, then report back, Jolanta!)