In an effort to raise awareness about our illnesses it was hard to know where to start. It is personal. It is uncomfortable. It is misunderstood. It is however also important so this is what I came up with, an answer to the question what will happen if I am not cured?

So when trying to figure out where to start this blog about the fight of my life writing about what will happen if I am not cured seems like the best choice. It is a question that I can answer quickly off the top of my head even when my concentration isn’t so good. It is also a question that when analyzed results in some gruesome details of misery, disfigurement and it isn’t very different in many ways from other serious degenerative diseases that lead to death when not “cured” except that this is the one I HAVE.

I HAVE CUSHING’S (hypercortisolism)

So let me tell you about what else I have. I have a soul mate. I have husband that I am completely in love with. A man, whom I cannot get enough of in so many ways. He loves me passionately in return. My husband has talked about us growing old together since we started dating. He is interesting and well rounded, active, musical, philosophical and tries so hard to make me happy…no matter what.

I have three sons. The smallest is still a toddler. He has spent every day of his entire life with me except for the time I have spent in hospitals since his birth for various procedures and surgeries. He loves to go outside, read stories (he can read already I am proud to say) and loves cars like no other little boy I have seen. I have a tween that I share with my ex-husband who is moral, bright, outgoing, honest and fun loving and just beginning to dream of what he wants to do with the rest of his life. I have a step-son that plays baseball, has interest in drawing and while he isn’t with us all of the time is missed and thought about every day. We speak to him several times a week by phone and follow him on facebook. J

I have a family made up of blood and non-blood relatives. People that I would not trade for anything (even if they don’t understand what is going on with me…most of them try…most of the time). Friends that say hello for no reason and family members who are not blood relation who happen to live miles away and still feel as close as the next room. Those that would change their lives to be a part of mine just to be near us (that is family isn’t it).

So what will happen if I’m not cured? All of those whom love me, and I love in return will get to watch me if I am lucky slowly die. If I am unlucky...pass in the next few years or months perhaps. Who can say? Not the doctors at this time. As a mother I think of my poor youngest who if I pass away in the near future will have no memory of me at all. No mother wants that. To create a child out of love with a man you are madly in love with and then not be able to raise him, let alone have him remember you or know anything about you first hand.

Then again if he remembers me and I am never cured he will only remember me being sick and unable to be a real part of his life. A mother should be able to participate; I don’t think any child would say they don’t want that. No matter how much I love him, if it is from the sidelines it is not the same as being a part of the day to day. It makes me feel guilty (even though I had no way of knowing or preventing this illness, Cushing’s isn’t like smoking). I feel guilty because I want him to know and remember me even if I am sick. My tween aged son already feels “robbed” because I am not the mother I once was and he misses me even though I am still here. The effects of Cushing’s and how it prevents you from doing “normal” things “everyday” things leaves you feeling like a prisoner.

I so very often trapped in this body. So to answer the question of "what will happen if I’m not cured"? I will likely die, my family and friends will have to watch and the hearts of no one will be spared. I know this is hard to hear and seems all worst case scenarios but it’s true. The death of a fellow member of my support group just last month (Bless them) is proof of just that.

Cushing’s syndrome and/or Cushing’s disease may be rarely diagnosed but it is (in my opinion) more common than it is realized. The effects of hypercortisolism on the body are that it destroys all of the bodies systems (cardiovascular, nervous, gastrointestinal…all of them). It is painful, debilitating, misunderstood, often disregarded due to its complexity and a lack of knowledge about its existence let alone what it means. This post today isn’t about what Cushing’s has done to me or is doing to me along the way (that cannot be covered in one day) but about what having Cushing’s will do to me (the final result) if I am not cured.

One more thing…can you please help us raise awareness of this disease. Many people I know are shocked when I tell them what is going on with me...that I have been diagnosed with this terrible rare disease. I understand it is not the type of thing you hear every day and it’s kind of unbelievable (but let me tell you one day in my body and you would get it, hell one hour on a bad day would have you begging for mercy) but it is real. I also understand that you don’t know what to say or what to ask but not saying anything or turning away from us is not the right thing. Fastest way to clear a room isn’t to yell fire it’s to say I have Cushing’s (or a brain tumor) within 3 seconds all you hear is crickets. Those of you who stick around don’t feel sorry for us just be our friends, family and neighbors we need you. If we (all of us/everyone) can’t make this as easy to talk about as say “chicken pox” then we can’t raise awareness. We are the few who have it...and you as the many without it must understand that we need your help in the fight of our lives.