Am I Cured?

It is a question I receive daily from potential employers, friends, fellow Cushies, family and everyone in between. And not everyone wants to hear the answer - please don't ask if you don't want to know. I am no longer sorry for my answers and can not be held responsible for my disease or the toll it takes on my body, emotional status or if I feel like doing something. I have decided no matter what happens in my future, I will be "me" and not fake my life to make others feel better.

What I do know is this disease can come back at any moment. It is recurrent just like cancer and many other powerful illnesses. I have more background on this disease than most doctors and understand the pituitary-adrenal axis better than most. So, I do know my odds of it returning are high and the fact they can not tell a tumor in my head from surgical damage just tells me my odds.

Are there days I think it is back? Yes. Are there days where I feel like a million dollars and I can take on the world? Yes. Am I capable of being human and working and having a normal life - I think that is still up for debate, for the long-term. But, I do know that my brain works and I am able to sit here and write sentences that make sense and make phone calls and cook dinner (although sometimes it is not as good as it used to be). I can work now do things around my house.

Are there days when I feel very symptomatic? Yes. But I choose to believe that any strange occurrences that seem Cushie are my body readjusting to normal - or so I hope. I truly hope it is not the real thing. And yes, I have had recent blood tests come back high cortisol with abnormal hormone levels. However, no one can seem to answer the question as to whether this is my body adjusting back to normal or a recurrence.

It is a game where I wake up every day of my life and look in the mirror and ask the questions: Is this the day I recur? Will I have symptoms that don't allow me function today? Is this the day I could die from some leftover effects from surgery (as I do have problems because of surgery)? Or is this the day I could die because it is my time? I can't tell you which one of those is the scariest.

Everyone is scared this disease is going to render me useless, including me! Will I have surgery again and radiation (likely since this would be a recurrence) and suffer even more complications? I am not sure exactly. Part of me has found more help in alternative healing and applications than what Americans like to call traditional medicine. Do I think this is the cure? I do not know that either. What I do know is that some of the "alternatives" have allowed me to become more "Dulcie" than I was a couple of years ago. Do I believe I have the power to help myself? Yes, but the question remains about curing myself. The power a person has over their body and mind is amazing but learning how to use it is another story. It is something I am going to focus on though...you are now asking why...

Well if I do have a recurrence I do not know that I will go through the surgery and drama again. I want to be able to control my fate and if it ends up that eventually this disease takes my life than so be it. I feel my calling is to give it a voice regardless of what happens in my future - recurrence or a "Cushing's-free" life. I do have the power to choose and I have the knowledge to make a decision as well as accept the consequences. And will I have my days where I still cry and scream and kick about what this disease has done to my life? Yes. And, I expect you all to respect them as I do your little temper-tantrums.

We all have our issues and I will not be held responsible for this disease and what it has done and may do to me in the future. I will no longer hide my feelings and anger so I do not hurt your feelings - not that I have done a ton of that but I am told I am a "good pretender" and you would never know I had this disease. Well silence is what is killing others with Cushing's so my silence will not be their death sentence.

Recently I found out I will be on a new TLC show because of my illness and battle? They said I showed strength and am full of powerful emotion as well as the ability to communicate. While I dread going in front of the cameras there is a purpose - to give others like me a voice. People with rare diseases a voice so we can no longer be so misunderstood - I hope. After emailing my list of friends, I got a ton of support at a time when I thought I was about to quit being a voice (I was wondering if I had any effect on the world around me). I promise to do all of my Cushies and rare disease friends’ justice by telling how it really is and baring a body which is not mine for the world to see. My purpose - to yell, kick and scream to the world that people are not always what they seem and to help if you can!

NOTE: I will be posting the air date and everything at a later time but so far I shoot on July 27th and 27th. Millions of people will be seeing a body which is not mine but they will see my mind. This, I believe, is the biggest accomplishment of my career - and if you look at my background I have worked on many successful healthcare initiatives. But this is my biggest because of self-sacrifice (I hate photos and have very few of myself and it is even harder when you do not look like yourself – not a vanity issues as I have said before but an identity one) and the lengths I have had to go to get people to understand and "get it." To understand the Cushie story - one of millions.

I digress…

So the question remains...am I cured? Depends on of what you are asking? Am I cured of some of the barriers I put up so people would think I was ok so I would not hurt them? Yes. Am I cured of false realities? Yes. Do I believe that I will have my "bad days/Cushie episodes?" Yes. Am I sorry for getting sick? Yes because it changed my life both for the good and the bad but I would not be who I am. I am a voice for people with rare disease and I am proud of it. Does it hurt? Yes, but someone needs to help those who can not help themselves. I am fortunate enough to have enough background in healthcare to understand and a knack for communicating. Perhaps that is what makes me stand out from the others who have gone before - so my friends tell me. They tell me I no longer need to search for my calling that it has found me through this disease. I just hope it leads me to the path I want - to help others like me and to get others to care. I just want to help others. This is not a statement to get you to think I am some sort of "martyr!" I am just being me - a "Dulcie" changed by life and the question that remains - am I cured?

PS - Sorry for the long post but I had a lot to say...it's been far to long and I have been hiding from reality for a while.