Introducing myself - not newly diagnosed but new to the forum.

[shimi]

Hi,

My name is shimi and i was diagnosed in 3/3/2011, At first i was having the regular symptoms of numbness in the hands and legs,
I woke up to see that i can't move my left arm or leg and the next day it went to the other side leg or arm, But i didn't pay much attention the the symptoms as i was very active and it passed by itself after a few hours, After a while i finished my job in the army and started my civilian job, a few months later i was rushed to the hospital with sinusitis and flew like symptoms, i couldn't even walk from my bed to the shower, and was very very tired, high fever, when the doctor saw that the symptoms doesn't go away with
help of medications, i rushed to the hospital, after a breath taking 40 min i learned that i had acute kidney failure and my hemoglobin was 6.5 !! , i was hospitalized and 2 days later had kidney biopsy, the biopsy had one clear result , WG!

Since than , i started to put on some weight and to feel like a balloon.

Started with 80mg of prednisone and 150mg of cyclophosphamid along with drugs for lowering blood pressure and stomach burns,
which now (after about 7 months) is tapered to 15mg of prednisone and same amount of cyc, my legs a swollen normally but in general i am back to my normal body weight and feel much better (considering) , of course there are the side effects of the treatment but i learned to live and work with it, forgot to mention i had dialysis (5 times until kidneys started to work again) and Plasma Exchange (12 treatments) to get rid of the strong C-ANCA and P-ANCA results in my blood.

Overall i can say WG is certainly something that one can live with and i am very happy to finally belong to a community that will
understand me for sure better than anyone else as i hear the words "hey , you don't look sick" every day or two.

WOW , That was long but that's me :)
Happy to be here and to take part in helping new people with WG.

[mishb]

Welcome to this wonderful site Shimi.
It sure sounds like you had your full share of symptoms. Luckily things have started to look better for you.
I'm sorry you have to live and work with WG but glad you have been able too.

Everyone on here have a wealth of knowledge and/or experience that they can share with you, so don't be afraid to ask.

Take care and ........

[Psyborg]

Welcome to the site Shimi. Glad to have you join us, but sorry you need to.

[shimi]

Yes , i am very glad to be here , where people can understand me ...

All my life i wanted to do something special, i guess this is that special thing i got (WG) ,

i am 7 months after firstly diagnosed with WG and i am alive (that's good :))

but it was a very long road until i got there, and i am still fighting with symptoms and side effects that i have just learned to say

"Its WG ... don't pay attention to it" , even a simple headache, and all my life is around it...

I as so frustrated, i guess any one of you who got WG asks "Why me!?" well... that's the main question

Just trying to find a happy spot! :)

[Kami]

Welcome! Sorry you have had to go through all of this. It is hard for me too when people think I'm just fine because I look "fine" and they don't understand why I don't have the energy to do things or I can't keep up with things. Life sure has changed.

I think the question that I want answered so badly is what the heck causes WG??????????
Don't feel alone I think everyone that has WG must be frustrated, I know I am!

Nice to meet you, wishing you the best! Kami

[Al]

Welcome, Shimi. We all have asked the same question, "why me?" I lean toward the answer the the fates often get it wrong, those capricious little buggers. Yet, I think there is also something special in having to face a challenging situation and knowing it: it makes you think about life more fully, with, perhaps, more consideration for all fellow sufferers. By this, I mean, of course, everyone; it's just that not everyone realizes, yet, that they are in a challenging situation!

Al

[Chris G]

Welcome Shimi! You sure have had your fill of symptoms! Don't ya just love the "you don't look sick" comments, while feeling like you've been through the ringer!

Like Kami, I wanted to know what causes this darn disease!

As for the "why me?".......last month, my 12 year old son was diagnosed with type 1 diabetes. Until then I hid everything about this disease from my children. When he was diagnosed, and he felt so alone, I filled him in on everything I'd been hiding from him. I shared it (minus the scary stuff) because I wanted him to know he's not the alone in the world with a crappy disease. He asked me many questions, and I think it helped him. So by no means am I happy to have this disease, but my silver lining is that it may have helped my son in some small way.

[Al]

As for the "why me?".......last month, my 12 year old son was diagnosed with type 1 diabetes. Until then I hid everything about this disease from my children. When he was diagnosed, and he felt so alone, I filled him in on everything I'd been hiding from him. I shared it (minus the scary stuff) because I wanted him to know he's not the alone in the world with a crappy disease. He asked me many questions, and I think it helped him. So by no means am I happy to have this disease, but my silver lining is that it may have helped my son in some small way.

Chris--I'm glad you can communicate with your son this way. I'm proud of you! Type 1 DM has a different etiology that Wegener's, but there are definite similarities: They are both autoimmune diseases that impact important organs, and they both change lives and how we think about living. The question is how to remain useful in spite of everything. But I maintain that this is a question with an answer. It is horrible to have this happen at so young an age. Yet your son can have a bright future, even though it may not the one anyone would have foreseen.

Al

[Chris G]

Thanks Al. Yes, and the good news is unlike ours, the treatment for T1 Diabetes (insulin) has no nasty side effects - well..... as long as the dosage is correct.

He's handling it remarkably well! We're SO proud. Although he missed 3 days of school while we were in the hospital, and he missed many more hours while sitting in the school office, treating low blood sugars, he has still managed to get straight A's in school. All while just having moved up into middle school for the first time.

Oh geez, I've hijacked another thread! I'm sorry Shimi ! Go ahead..........give me the stink eye.....

[Dryhill]

Shimi welcome to this very, very select group. Most people want to be special and not just one of the pack ........ well now you are special and different, just a pity about the Wegeners.

As to your comment "why me?" well I think Al sums it up perfectly "the fates often get it wrong" . De to varoius incidents in my life I should have died at least twice and there I was just before my 62nd birthday thinking how well I was doing and how I was one up on fate. Oh well someone up there is having the last laugh ....... for now.

[Al]

Oh geez, I've hijacked another thread! I'm sorry Shimi ! Go ahead..........give me the stink eye.....

Sorry if I got you into trouble, Chris. If anyone is due flagellation, it is I. And yet it seems to me that threads evolve and weave. That is how, in fact, they make the whole cloth. Having said that, however, allow me recapitulate a motif of SHimi's: How can you be sick if you look so healthy? And how many times do you feel obliged to provide an answer? If I had a dollar for every paragraph of explanation, I might even be able to pay the outrageous costs of dealing with this outrageous disease!

Al

[Sangye]

Welcome to the group, Shimi. I'm glad you got diagnosed without it taking years. That was an interesting early symptom you had-- being unable to move your arms. I don't think I've seen that one before. Wegs is such a cornucopia of surprises. :rolleyes1:

[shimi]

Yes , that was my first symptom , and a long lasting one ... (had it for about 18 months on and off without paying much attention)...
Now its frustration all around , that's all that is left , don't get me wrong , i am a very happy person and i wish everything was effected only by my mental condition and not physical.

[Sangye]

I hear you. I'm also a very positive and upbeat person, but this disease and its complications can really get me down. Don't ever feel bad or apologize for expressing your frustration, anger, pain, sadness, etc... here. This is one place where no one will judge you for that.

[Dirty Don]

Welcome Shimi...this is a great and caring forum. Share what you feel, ask questions that you need answers to, and generally feel better that there are many of us out here who 'know' what you feel. Take care, and be persistent...that's what has kept me alive at this point!! Good luck!