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MDJunction to me

Amanda78"MDJunction to me has been the helping friends of understanding that I have needed. I feel now as if someone else it the world understands the things that I am going through. I feel less alone and happier. Here I can let out all my emotions and get support from many people who have been in similar situations. It really has been a life saver for me!" (Amanda78)

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anniesunshine
anniesunshine
Rank Member
Online Status OFFLINE
Member Since 06/07/2009 04:50 PM
Last Online 10/24/2012 06:10 AM
Gender: Female
City: Lebanon
State: Indiana
A little about me: I am a 39 year old mother of two and was diagnosed with limited WG in 1997 and deal/have dealt with symptoms such as sinus infections, ear pain, hearing loss, mastoiditis, saddle nose, hypothyroidism,watery nose, watery eyes, tracheal involvement, and several small surgeries, but have been very lucky thus far to not have lung or kidney involvement.
After my initial diagnosis in 1997, I was able to achieve remission by 2001, but flared again in 2004-2005 with the pregnancy and birth of my second son. This flare-up brought new symptoms, the major one being tracheal involvement. I've had an estimated 13 laser bronchoscopies, but still deal. In March of 2008 I was put back on Prednisone (which i had sworn to never touch again) and my Rheumatologist switched me from Methotrexate, which i had been on since 97 and put me on Cytoxin. I tried that treatment for 6 months. HORRIBLE year!! (plus recovery time) I, of course gained 50 pounds and lost ALL of my hair. (and didn't get any better.)I had to post pics of myself on my bedroom mirror just to remind myself of what i REALLY looked like. Through all of that I also lost my job due to lack of performance. Now days, I have lost the prednisone weight and my natural hair is just past chin-length. (i wear hair extensions, though, cuz i prefer my hair long.) I am better than I was a year ago, but as I said above....still dealing. AND TIRED OF IT ALL!!! :)
My kids keep me going. I have a 16 year old son and a 5 year old son who are my world. I have also found the love of my life this past year, who has been my rock and fell in love with me-wig and all. lol
I am a stubborn person who is usually able to fight my way through what I want but THIS time it has been so difficult! CHIN UP though!! There IS sunlight at the end of this. I know there is!....I hope!
My Awareness Ribbons
  "I wear this ribbon for my five year old son who was born with Biliary Atresia, and now has Liver Disease."
Awareness Ribbons

My Hugs
MDJStaff gave me a Hug
01/01/2012 02:28 AM
a HugWishing you a healthy 2012 with lots of people, helping people!

tavybaby gave me a Hug
12/30/2011 03:56 PM
a HugHello all:
Long time no see just checking in with you guys. I know it's not safe but i've taken it upon myself to tapper myself off my meds so far so good the modeling is going well and I've started my own business so yeah, I do quite well for myself ...miss you guys love you all and I will never 4get the support I recieved HAPPY NEW YEAR !!!

jgkoch gave me a Hug
10/17/2011 09:05 AM
a HugAnne I been dealing with Wegner's for 10 mo. I'm on my second treatment with Rituxan. Cytoxin did not work. I feel rituxan will control the Wegners @some point. I have many side effects but I don't think they are related to the Rituxan. Wegner's attacks just about all organs. I know have a bump on my Trecha that will need to be removed. the surprises a many with Wegners. I think Rituxan is the best treatment and I hope you have successs soon. Hang in there. We can talk more should you care to respond. Wegner's is so rare a soo diffcult to deal with it is nice to talk with others dealing with this rare disease that comes from nowhere
Best wishes,
Jerry

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My Diary
Comings and Goings
I originally was not going to utilize this portion of the sight, but realize, it would be helpful to keep track of my symptoms' comings and goings, as well as a good venting place for my thoughts and emotions. Here goes...
TitleDateViewsComments
Annoyed! 08/10/2011  236 4
and again.... 10/29/2009  228 1
Here is Comes Again 10/19/2009  179 2
My Photos
My Recent Posts
Cholesteatoma09/13/2012
Just Started Rituxan...11/09/2011
Just Started Rituxan...10/13/2011
Just Started Rituxan...10/07/2011
Disability09/06/2011
My Rituxan treatment starts08/18/2011
Sinus/Allergies08/16/2011
Rituxan07/28/2011
Rituxan07/24/2011
Patulous Eustachian tubes07/24/2011
Rituxan05/14/2011
Imuran Question01/11/2010
Imuran Question01/09/2010
New to this group12/19/2009
Weigner's Disease12/19/2009
My Articles
No articles published

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