This is a letter I sent to a human interest reporting trying to start awareness of how gm affected me and effects all of us here....
today I am writing to you the condensed version of my story and info regarding the forum and posts and what I am hoping to achieve.
I am 27, have a 2 1/2 year old daughter, and at the moment am a stay at home mom while I try to heal both mentally and physically.
Back in late 2009 I started having weird sensations and feeling in my left breast and having only had my daughter around a year at that point I considered what I was feeling to be my body going back to normal' as they say after u had a child. Around jan 2010 my husband found a lump in my left breast. I applied for medicaid ( mind you my guy wasn't working at the time- work was slow) and got denied, and spent the next cpl months looking for a program that handles free mammos and U/s to women of my position. I then found Komen for a cure and had my sister's surgical practice send down a referral from wva so that I could be taken care of. The results came back of a lump in my left breast and a cyst under my right one. The surgeon then sent a referral for me to see a specialist or well anyone really. I spent the next 7 months both re applying for medicaid, and walking into clinics from ruskin to tampa. From women's health groups, to walk ins, to community clinics, to charity financial clinics. I got turned away bc I either didn't meet their criteria, they didn't have a breast dr or specialist on hand, and one in particular turned me away bc I was below the nat'l poverty level at the time and didn't meet their charity regulations being so poor. I walked in to a er mid aug 2010 for intense crippling pain due to the lumps growth and a skin surface abcess that had formed on top of the lumps location. They aspirated the abscess and told me they could not treat or touch anything having to do with the lump bc it was underneath the skin. And when the abscess healed( it was nxt to my left nipple) my nipple started retracting and inverting.
I reapplied for medical assistance and continued to look for a dr.
By the end of oct I was in constant screaming pain and flew to wva to said surgical practice and had a cystal excision on my right and a biopsy removal with a titanium marker placed in my left. Where I finally found out the diagnosis of granulatomous mastitis.
Skip from nov to april and this is not filling you in on progression of symptoms or pain increase or how it affected my life.
After having nerve pain attacks that left me weak and shaking and the fact that I couldn't hold my daughter anymore- I knew something had to be done.
We drove back up to wva where I told the surgeon if he didn't do something I was either going to lose it or heaven forbid something worse-.....march 31st 2011 I had a dbl or bi lateral mastectomy and nipple removal where he removed a mass the size of a baseball attached to my left nipple, and when he went to do the excision of the nipple my left one busted. My right one was showing signs that the mastitis had spread and was starting to mimic the weird painful sensations that first started it all. He told me he was glad he had removed them both bc if not it only would have been a matter of time.
I had a jp drain on each side and 20 staples across each breast.
My guy of three years loves me so much that the day we had my drains removed we got married- chestless and nipple less- from dd's to nothing- he doesn't care.
Now as for networking and doing research there are no organizations, foundations, support groups, or anything out there. There is very little info to be found on any type of mastitis other than the type you get while breast feeding, and even that is lacking. The cancer groups aren't equipped to handle mastitis patients either emotionally physically or any supportive way.
The one website, one group, one forum I found consists of women all over the world and all at a loss as to why there is no help out there, period.
This is a mis diagnosed, mis treated, unrecognized disease that affects more and more women and doesn't age discriminate. People can't relate pain wise and how to treat pain management; insurances, health groups, medical facilities, and many other places don't recognize this as a diagnosis or know anything abt this.
From allergists, rhuematologists, wound care specialists, breast specialists, infectious disease specialists- no one knows how to handle or treat.
Please help me get this out there and let the area or nation know what I am trying to do by getting a non profit for mastitis and mastectomy patients set up and realized.
This is the link to my personal page where I have posts in the mastitis forum.
The one site that I found is medhelp.org
and it has 74 members in the mastitis forum from all over the world. This is the only site, only group. The stories of red- noelle04- kiki- and many others will break your heart by their struggles.
I am an artist and have been painting and my works will be donated for sales and 80 percent to be donated in a charity acct that I have set up- to help set this up. We are a income restricted family and this is the only means I have of raising awareness that I can financially contribute to start this.
Thank you for your time-