Should Have Seen It...

Today in America, we honor our war dead and thank our living soldiers. Soldiers, sailors, policemen and firefighters know a taste of freedom others may not comprehend. Not because they don't understand what freedom is, but that they have never put the freedom of the many before themselves and at the risk of their very own lives. I believe that only in the service of others can we appreciate this great country.

Steve Owens
May 25th, 2009
Memorial Day Read more!

I never really had problems mentally with Cushing's, at first. I would read about this from people on here and would skim over it. It didn't pertain to me and actually, I wondered if it was Cushing's causing it at all. I never wanted to believe Cushing's caused all this "stuff". By stuff I mean the mental and physical manifestations of Cushing's Disease that aren't generally spelled out in the symptom's charts. It wasn't happening to me, so some of it was hard to believe, if I am being honest.

Here I sit years later after two surgeries and one that finally cured me 4 months ago next week. I went down hill in the later half of 2008. That is physically and mentally. The mental stuff got worse in June 2008 or there about. I think I barely held my sanity and finally told the doctor in November of 2008 some of what was going on. It was the first time the wife had heard of it. I am not so sure I haven't slipped over the edge sometimes.

Fast forward to January, 2009 and the BLA. I expected to feel better and I did. However, the mental side of things is really no better. It is something I hate to share but I feel people need to know these things happen. It is real because my mind thinks it is, even if I know in my heart it isn't. It is not how I expected my cure to go and it certainly isn't something I like to admit.

Life is better post Cushing's and I expect it to continue to improve. Better is a relative term. Just going one day at a time. I hope I can wake up one day and take my cortef and florinef and forget Cushing's is the reason why. You got to have goals, right? Read more!

The pain of steroid withdraw or the pain of living with no adrenals, I don't know. I am miserable but happy to be better. Better is a relative term. I don't think I am going to get better in months. I think my recovery is going to be years. It is sinking in and I am depressed that it could be a realistic view. Spirits are high along with the pain levels. Read more!

I started this BLA journey at 150mg of cortef. I am down to 25mg. I am doing ok. Ok is a relative term. if you call severe muscle and bone pain, joint pain, impaired memory, low stamina and no immune system ok, then I am doing super!

As bad as that all sounds, I do feel better than I did with Cushing's Disease. The weight is melting off in dribbles. My body is reshaping itself more than the weight loss should show. I think that is all part of recovery. From above the stomach up, I am starting to look more like my old self. The stomach still needs work.

What I am finding on 25 mg is slight signs of AI. It is subtle but it is there and I have to wonder if that is normal, at least till I adjust. I never thought I would get below 32.5mg, but here I am. I think as my body heals and the weight is coming off, I think I am able to lower them doses. Where I took four doses a day, I know take 2 and occasionally take a very small 2.5mg in the evening if it warrants.

It isn't all easy, but I am doing ok. I strain to do 15 minutes of house work without having to rest for hours. I think in time, this to will get better. The pain, I am not so sure. I will gladly live happy with all this and be thankful that the Cushing's Disease is gone. I am working hard to improve all those symptoms. Time will tell.

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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!