This is a copy of the Facebook message I posted on Thursday, something that turned into more than I expected, so I decided to make it a blog entry as well. Although not quite the same thing, it’s somewhat my version of “coming out of the closet”, in the sense that it’s the first time I’ve opened up on FB, the first time I’ve made myself vulnerable about all thats happened in the last 16 years. It’s not fun to think of people looking at you differently simply because of things that you have, and are, going through. To talk about a common medical illness is one thing… or even an uncommon one… something heartbreaking for sure, but then you are diagnosed correctly and supported by the doctors through treatment, side effects and any complications or unknowns that may occur. It’s so different to go through something that can be compared to an abusive relationship, or that once felt like being found guilty for a crime you didn’t commit… only in this prison you also lose your body and health as you fight to prove your innocence.
Although the vulnerability does make me nervous, it’s such a RELIEF and so FREEING to feel like I’ll no longer be so alone :)!
Facebook Entry ~
“I’ve never wanted to tell anyone how bad the last seven years have been…I never wanted to tell anyone how bad the nine years prior to it had been, not so much the physical, but the pain of not being heard and being told it was literally “in my head”. The shock of discovering the false picture the Doctors were creating of me, a girl who may have looked a little like me but was different in every possible way. The pain was so heartbreaking, having to fight for my own character when already scared because I didn’t know why my body wasn’t working right!… or more important how to fix it! To stay in the positive and looking forward I don’t talk about it, how can you keep your mind on the good if dwelling or thinking about the bad. Problem is the longer it goes on the lonelier it gets when no one knows.
Yesterday I had an appt that shocked me, when I thought they couldn’t shock me anymore, and all I wanted to do was throw up… but I also wanted to make sure everyone knew the truth because the only reason I’m even fighting for my life today is because doctors refused to see me for who I am! …and now a BIG reason I may not live, no matter how hopeful I stay, will be because of the doctors, their lies, and not seeing the strength inside that has kept me alive or the true story that they have to recognize in order to make the correct diagnosis and therefore do the RIGHT THING! Of course, none of this probably makes any sense because I’ve never told everyone what has really happened.
I’m still concentrating daily on the things that are filling my heart and keeping me moving forward, actually creating visions to feel excited about doing when we fix the problem and finally give me a chance to heal. I can’t get there on my own and it makes me sick inside that doctors can do something so experimental on a person, leave them in a world of torture and hell, and then have the power to say they aren’t going to do anything to fix it because they don’t understand what they’ve done! Why am I trying so hard? Why am I working to set up a life that fills my heart, hoping that even though it isn’t anything like the dreams I’ve always had, I do let go of what’s lost and find new dreams that are possible and hold on to the hope that good will come and the life we are setting up will take off and thrive… but why do I stay so optimistic and work so hard if the surgeon we need doesn’t see the truth and doesn’t do what’s needed to make any of it possible? It’s more painful to have to fight and beg for help and open up with pure vulnerability only to be ignored and lied to, then it is to just let it go and choose to spend what time I have left with those who know who I am, believe in me and give kindness, love and support that helps me want to get up another day.
This may sound extreme, but the truth is I’ve sugar coated everything because I want to block out how bad things are… I don’t want to lose my spirit and who I am, I don’t want them to break me emotionally no matter how physically broken I become, but pain changes things in every way and it breaks my heart to know I can’t do anything about it!
I’ve always believed things happen for a reason… even if we may not like what those things are, but sometimes it is about a picture bigger than ourselves and the purpose doesn’t mean a happy ever after for me. I’m praying and hoping I live to see the good that will come from it all, but if I don’t make it, I want to make sure that sharing the truth can help make a difference for others. Seeing people for who they are, listening and believing in them, can mean the difference between life and death… if you don’t get the diagnosis right it doesn’t matter how brilliant a doctor/surgeon you are, and in this case they had all the answers from the very beginning but chose not to see them.
So as I do share my story, my nervousness has always been more people seeing me different than who I am, only being able to see and understand from their own experiences and emotions to compare too, and as bad as the story is I don’t want people to think I’m complaining or being negative…there’s no lack of optimism or believing that anything can happen to turn things around. It is heartbreaking beyond any possible words, but if you ran into me during the day you may not even know, as I live in the moment to survive and I want to smile and enjoy the few seconds with a friend so I can find as many feel good moments to fill my cup and escape the nightmare. I’ve started a blog so I can share it all… the story to let people know the truth, and all that I’m doing to survive it and live at the same time! I can know that it is a place that shares all that I am, as well as all the positive things so I can find strength and support while doing it. For those who are interested in following, I would love to see you there :)!”