I'm Not Alone

Sadly I'm not alone with all these feelings and this tumor in my head that is causing all sorts of emotional and physical issues for me. Today I woke up feeling more "Cushy" than I have in a while. Perhaps it's because the drugs have finally left my system or maybe it's because I'm stressed waiting for tests. I’m waiting for someone to “cure” me and give me my life back. I try everyday to keep parts of me alive and have a positive attitude but waiting on others to determine your fate sucks! But I’ll keep waiting and hoping that it comes soon. That’s all I have, unless I become a surgeon and fix myself. How scary is that…

Anyway, did you know that Cushing's patients no longer can deal with normal stresses like everyone else. Why you ask? Well, apparently our adrenal system has been on overload so long causing all these problems that we no longer have the chemical and physical tools to combat stress like you. The adrenal cortex (adrenal glands and pituitary that rules them) was designed to help you deal with stress and increase secretions of various hormones at times of stress helping people "deal." Well since we are already maxed out and living at that level we have no additional tools to help us deal with the disease and the havoc it makes of our lives.

I’ve been getting involved with the Cushing’s Support and Research Foundation and have met some nice people. One of the ideas was to help put faces and names to a disease which no one understands. They were kind enough to send me an entire book (100 pages) of stories of people just like me. And that’s how I really began to realize that I’m not alone going through this. I know my family and friends have tried to understand but there is no way that they really can. I mean it’s hard enough for me to deal with and try to understand a total lose of control over my body and mind much less have others understand it.

So I started reading all these stories and could see so many pieces of myself and my story in theirs that I began to cry. I cried partly out of relief and partly because I can understand their suffering and feel the pain. There are things I can’t even explain and couldn’t understand that they were happening to me until I read these stories. I wish I could share them all with you so you could see that this is our “normal.” We all have lost friends and family members due to our disease and our struggles because they can’t understand and think we are crazy. We have little choice in our actions and feelings because they are all being controlled by this disease. I know that sounds like a “copout” but the cortisol and other hormones really do have a strong effect on us.

In reading these stories I’ve found out that I’m not alone in my depression, frustration and anger. We all have it and it’s all caused by this horrible disease. Yes, we may have issues with some people around us but they tend to be exacerbated by the cortisol running through our bodies. They say 90 percent of people with Cushing’s suffer from depression! And guess what, after surgery it usually all goes away except maybe some of our anger against the medical system for letting us suffer for so long. And sadly, some of us will never get our “minds” back to the way we used to be and need to choose alternate lifestyles. I don’t plan on losing mine! And happily some people make changes in their life and are happier than before!

I wish I could share all theirs stories with you so that you could see that I’m not alone in this and that there are millions of others like me. Maybe then you could understand that what I’m telling you is really happening – I mean come on, we all can’t be delusional and sharing the exact same experience.

I’ve found several articles lately about what is the best way for us to cope and deal with all these feelings and the best medicine is support from people you love and trust. I recently started eliminating people who can’t offer that since it’s not my job to make you feel better about me. I’ve also consulted other medical experts (like my doc and others)…and trust me psycho therapy would fail for a number of reasons…maybe later when I have time and need to get over what has happened but not now. Not now because I have too many other fish to fry and a body and mind that I have a hard time controlling. Trying to remember a doctor’s appointment is hard much less trying to find out why I think I did something to get this and why bad things happen. And the bad thing that doesn’t allow me to feel better and get better right now is CORTISOL! The verdict…I’m not allowed any drugs and the ones out there could actually push me over the top and lead to death by my own hands. So I guess counseling and drugs are out for now.

Anyway, the best thing right now is just to gather around friends and family and strangers who can offer their support without judgment. Please, we spend all day judging ourselves and trying to figure out what we did to get this disease and decide if we really are crazy – we don’t need any help here. All you have to do is listen, try to entertain us with stories or take us to do the things we still can…let us take the lead on talking about our frustration of waiting for answers and having to be retested and everything else…

So for now, I’ll take comfort in reading these stories that sound so much like me and know that I’m not alone. And I’ll get hope from those who have gone before me and survived the various tortures…