" Not as alone as I thought"About a year & a half ago I wrote a story titled "Feel Alone" but I have since found that I'm really not. After joining EP I have realized that there are many women that are affected by this horrible condition known as "gigantomastia".
So many young women have reached out to me & some I have become close friends with & I feel truly blessed to have them in my life. Having that support is just so important when living with something so misunderstood & physically disfiguring & demanding, not to mention how humiliating & depressing that it is.
In the past year & a half a lot of things have changed in my life, mainly with my breasts. Just to refresh everyones memory, I was injured in a car accident in May of 2000 that left me a permanently paralyzed triple amputee & also being diagnosed with gigantomastia which has caused me to endure a lot of episodes of growth over the years that have actually left me being much more disabled than my actual physical disabilities caused by my paralysis & my amputations.
In May of 2011 I began a growth episode that was the worst I've ever had & it lasted until April of 2012, I gained several hundred pounds in each of my breasts & also below my waist. To make matters worse my breasts began to lactate which required me to have to be attached to an extraction pump to remove the seemingly never ending supply of milk that was being produced. Everything in our home has had to either be updated or replaced to accommodate my additional size & weight which has cost tens of thousands of dollars. I'm no longer able to be transferred to or from my mobile platform & am now forever confined to it 24/7, my husband struggles daily just to bathe & provide care for my breasts & body.
Because of my inability to be transferred now & my inability to move or have the position of my body changed because of the size & weight of my breasts, I've suffered several severe muscle spasms & I've also had several autonomic dysreflexia episodes which are very serious for people with paralysis. Unfortunately shortly after my breast growth stopped, I suffered a severe spasm that dislocated the C-4 vertebrae in my neck which put severe pressure on my spinal cord that has caused me to now have complete paralysis from my neck down leaving my only remaining arm & hand useless to me. I'm not dependent on a ventilator to breathe but I am now dependent for everything else. I'm using voice recognition software to dictate this story because I now have no use at all of my arm & hand.
In the beginning of losing the use of my arm & hand I held hope that I would regain function within it but it has been so long now & has atrophied so badly that it has the appearance of a long term quadriplegic or a person that has been afflicted with severe muscular dystrophy, I'm just hopeful that I don't have any blood circulation issues within it, my MD is very
concerned that it may need to be completely amputated. The thought of being a quadruple amputee quadriplegic in addition to the issues that I have with my breasts is a very overwhelming thought to me & I'm really upset & depressed about it. What little independence that I had seems to be forever gone now & I don't know what or how to feel, I'm very frightened about my future.
Being a part of the EP community & having the friendship of some very nice people here have really helped me to keep my sanity while trying to manage to cope with some very difficult circumstances. I'm very Thankful & feel very blessed that I've been able to become friends with some of you & showing me that I'm really not alone with my issues.