anniesunshine
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| 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
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"I wear this ribbon for my five year old son who was born with Biliary Atresia, and now has Liver Disease." |
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My Hugs
 | Wishing you a healthy 2012 with lots of people, helping people! |
| Hello 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 !!! |
| Anne 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...
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...
| Title | Date | Views | Comments |
| Annoyed! | 08/10/2011 | 186 | 4 |
| and again.... | 10/29/2009 | 180 | 1 |
| Here is Comes Again | 10/19/2009 | 161 | 2 |
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My Recent Posts
| Cholesteatoma | 09/13/2012 | ||
| Just Started Rituxan... | 11/09/2011 | ||
| Just Started Rituxan... | 10/13/2011 | ||
| Just Started Rituxan... | 10/07/2011 | ||
| Disability | 09/06/2011 | ||
| My Rituxan treatment starts | 08/18/2011 | ||
| Sinus/Allergies | 08/16/2011 | ||
| Rituxan | 07/28/2011 | ||
| Rituxan | 07/24/2011 | ||
| Patulous Eustachian tubes | 07/24/2011 | ||
| Rituxan | 05/14/2011 | ||
| Imuran Question | 01/11/2010 | ||
| Imuran Question | 01/09/2010 | ||
| New to this group | 12/19/2009 | ||
| Weigner's Disease | 12/19/2009 | ||
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