Your letter is so beautifully written, so reflective of what it is like for women with this disease. Reading it made me cry for you, and for us all.
As you have expressed so eloquently, the effects of GM can be profound and lifechanging. Things are not the same ever again. You have been assaulted with so much pain and loss. I don't think you can experience this disease at the level you and some of the ladies have, and come out unchanged. Unbattered.
It take a powerful courage to make this decision for yourself.
You are so determined to heal that I know you will. I think of the other women who have taken this step, as you are about to, and found healing and relief after so long.
I really admire you Noelle. Your strength and grace are incredible.
And sharing with us, so others can benefit, while you are so ill, - thank you.
You know we are all here for you.
One thing I have noticed, and it makes me hopeful, is that often after one of our members has posted for some time, and then chosen mastectomy, and underwent the surgery...they may post a bit after, (and almost 100% success stories with ridding themselves of the GM)...and then they go quiet. And I take that to mean they have healed and moved on with their life. I am hoping that for you.
Thank you for your kind words Jo. I can honestly say that while the physical scars will always be reminders of what GM has done to me, having this forum here is helping with the scars that can't be seen in my heart.
I will continue to update and post. It's important to me to continue to be involved because it's not fair that we have to suffer through this with no real answers. I will fight until GM is a widely recognized disease. Nobody should be pushed into a corner just because it's rare. I hate to see meds being thrown around just because they "might work" and because that's the only thing our insurances will cover. I KNOW in my heart there are other things out there that could work, but are not being used because of lack of knowledge by both doctors and insurance companies. So I will continue to post here and I will continue to fight until we get the attention and treatment we deserve.
My name is gabrielle. I'm a 27 year old mother of a 2 year old girl. I had my bilateral mastectomy and nipple removal april 1st 2011 after living with mastitis for 2 yrs.
I had no idea what it was up until the last 8 months and where it started in my left it spread to my right by the time is was done. I was in so much pain for the last 9 months I can't begin to explain it or what I did to relieve the pain when it got bad. I went from dd's to almost nothing. The surgeon removed a mass larger than a baseball from my left breast that was attached to the nipple and retracting the nipple in,and when he went to take the nipple it was so infected that it busted. He left me with enough tissue and skin to reconstruct but no plastic/ reconstructive surgeon worth his salt will work on a mastitis patient for at least a year afterward because most plastic surgeons consider mastitis still a bacteria instead of a inflammatory disease. The problem I'm now confronted with is as I heal my pain is coming back and my gut tells me I'm going to wind up with another surgery removing the remaining tissue and being scraped to the bone......there was nothing they could give me to treat the mastitis before and what I thought was done with- I'm not sure its really over at all. The flip side is no matter what your breasts do not define a woman- do not define you- and my guy and I got married 5 days post op' the day my drains were pulled- big breasted or flat chested-or in my case nippleless as well' it does not change who you are..... And my sympathy, tears, outrage,and thoughts are with you.....
I am praying that all goes smooth with your surgery tomm- god bless. -Gabrielle
I am thinking about you this evening. I pray you have a successful and safe surgery tomorrow and that you heal quickly.
I'm praying for you too. Just curious - Where do you live?
Thinking of you a lot today. We were in Castle Rock last week for a wedding. We drove around a lot. Would have loved to meet you. Not really an opportunity anyway...trips are like that. Anyway, I love that we have this connection. I will be praying for you all weekend...Thanking Him for the loving care he will show you thru this time.
Thank you everyone! I'm alive and well :)
I live in NM.
I am glad to hear that you are ok. I have been praying for you every day, and thinking about you often.
I live in Arizona...so, somewhat close to you.
I hope your recovery goes well. Please let me know if there's anything I can do.
Smiles, my hubby flew to Pheonix yesterday to speak to Accountants.
It's not the best time of year to visit...it is SO hot! Hopefully he can stay inside in the AC. It's beautiful here in the fall and winter, though. I live in Tucson...about 2 hours away from Phoenix.
Fellow Arizonian here. PM me and tell me what side of town you are in. We are close in age too.