I am glad I am sick and not you...
Having something like Cushing's Disease is certainly easier being the patient. I don't mean in the sense that you feeling bad makes it easier. I am talking more in terms of emotional and all the baggage that comes with having it or having someone you love have a terrible illness or disease. I always told my wife that I was glad I was sick. I could never stand to see someone I love have this. I should have known fate was fickle.
My 10 year old daughter is showing signs of the same disease. Her symptoms are more pronounced. I don't mean the ones you can't see, although those seem to be getting worse. I am talking about the physical ones that can be. Other things, which if you have Cushing's you know, are starting as well. It is a terrible slide she is on and it is intimately familiar to our family.
You would have thought fate would give our door a pass when it comes to rare diseases for awhile. Fate came knocking several weeks ago when our doctor handed us 20 kits to test for Cushing's Disease in my daughter. Know I know what it feels like from the other side. It is much worse watching it happen than having it happen to you, in some ways. I watch the denial in my wife's voice, but I can look into her eyes and I know she knows.
We have one family we know (and love!) that has the same problem. Father, son and daughter all have Cushing's Disease. The mother fought hard to get the help they needed. We are inspired by their story and know we will make it through this once again.
Knowing how bad it can get, I would gladly take the Cushing's from her and live it again if I could. I don't know any parent who wouldn't It was much easier living it than looking at the terrible disease from the outside and wondering about the one you love. I have looked at it from both sides now.
This is the part where I could say it isn't fair. We, as a family, decided long ago fair has no part in it. We will spend our energy on keeping focused and getting well. Not on negative things we have no control over. If we save our energy, we can use it on the really bad days. Everything about this disease is awful. I can think of no other disease that takes months or years of testing to prove you have it and then to prove if it is a brain tumor, lung tumor, or some other tumor. The reality of Cushing's is that the patient sometimes has to get so sick before the tests start picking up the disease. Nothing is ever easy about Cushing's Disease. Read more!
My 10 year old daughter is showing signs of the same disease. Her symptoms are more pronounced. I don't mean the ones you can't see, although those seem to be getting worse. I am talking about the physical ones that can be. Other things, which if you have Cushing's you know, are starting as well. It is a terrible slide she is on and it is intimately familiar to our family.
You would have thought fate would give our door a pass when it comes to rare diseases for awhile. Fate came knocking several weeks ago when our doctor handed us 20 kits to test for Cushing's Disease in my daughter. Know I know what it feels like from the other side. It is much worse watching it happen than having it happen to you, in some ways. I watch the denial in my wife's voice, but I can look into her eyes and I know she knows.
We have one family we know (and love!) that has the same problem. Father, son and daughter all have Cushing's Disease. The mother fought hard to get the help they needed. We are inspired by their story and know we will make it through this once again.
Knowing how bad it can get, I would gladly take the Cushing's from her and live it again if I could. I don't know any parent who wouldn't It was much easier living it than looking at the terrible disease from the outside and wondering about the one you love. I have looked at it from both sides now.
This is the part where I could say it isn't fair. We, as a family, decided long ago fair has no part in it. We will spend our energy on keeping focused and getting well. Not on negative things we have no control over. If we save our energy, we can use it on the really bad days. Everything about this disease is awful. I can think of no other disease that takes months or years of testing to prove you have it and then to prove if it is a brain tumor, lung tumor, or some other tumor. The reality of Cushing's is that the patient sometimes has to get so sick before the tests start picking up the disease. Nothing is ever easy about Cushing's Disease. Read more!
