Should Have Seen It...

It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power.

So I have cut to 32.5mg cortef. I am sleeping much better now. Things are feeling much smoother. I am no where near 100% recovered, but I have come a long way. While we never know when the grim reaper is coming for us, I also do not feel like I have one foot in the grave. Is the damage Cushing's disease did to my mind and spirit repairing itself? I think so.

I get lots of emails and calls wondering how I am. I get them from people who knew I was sick before but never called. I think they just didn't know what to say before. Maybe my extended family and friends have grown with me in my journey. Maybe we have all learned a little more about ourselves. I refuse to believe that this was all for nothing. I have found purpose for my illness. It is a new day in my life and the life of my family.

There are lots of other people I know going to surgery these past and next few weeks. I hope they all realize the courage to face this is already inside of them. With Cushing's, they dare to struggle. With their surgery, they dare to win. If that isn't courage, I don't know what is.
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I have to do something in my life that is honorable and not cowardly if I am to live in peace with myself, and for me it is helping others. I can't think of a better legacy than serving my fellow man.

I feel an overwhelming urge to write. I just wish I could figure out what it is I am being urged to write about. It feels like it is something more than this blog. I am not even sure I am helping anyone by writing here. I mean, how many people really have Cushing's and a BLA? Are they finding me and more importantly, who really cares what I think.

Anyway, recovery is going ok. I am down to 35 mg but up 1/2 a florinef pill. It feels like I need to have a salt lick in the house, I am craving it that much. Hopefully the added 1/2 pill helps. Primary Adrenal Insufficiency isn't as bad as I thought. I know it can and might get worse with illness or trauma. I am confident that it can be held off if we are attentive with my medication.

Cortef and florinef keep it at bay. I am having a hard time remembering to take it. Got to get better about that. Read more!

Recovery from Cushing's Disease has its ebbs and flows. Some days you feel great, and some other days, awful. Some days you feel you will make it, the next day, like you won't. As long as you keep a positive attitude (focusing not on the distance from your established goals, but on the progress you have made), overcome your impatience and are not ashamed of seeking specialized help, if needed, you will make it.

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4 more lbs lost...
Physical Therapy started...
Down from 150mg to 37.5mg Hydro...

...hope is alive. Read more!

Here is my instructions from a Doctor on stress dosing. Your doctor should be able to help you find the right dose for you for illness/healthy living. The key is working with your doctors. ;p

Minor Stress:

Low Grade Fever (less than 101)
Viral Illness such as upper respiratory/bronchitis
Diarrhea
Dental Extraction
Minor Trauma

Double your current dose for 3 days

Major Stress:

Fever over 101
Serious Infection (ie: Pneumonia)

Triple your current dose for 3 days

The letter goes on about other emergency things. MD Anderson Endo's reinforced the same method into us after Pituitary Surgery. Dr Chiang did the same after the BLA. I keep seeing people talking or recommending super low doses of cortef both as a daily dose and stress dosing. It frankly scares me. The whole idea is to stay out of an adrenal insufficiency event before it can happen. I think I would rather be safe and take the extra for the days it is needed than play around. That AI can sneak up on you before you realize it.

I think it is important to work with your doctors on dosing. The fact is everyone is different on the amounts they need. If your doctors don't seem smart about it, I don't really know what to say. Read more!

Screw it, I cut again. I am on 20mg-12.5mg-10mg of steroids now. Got to get down even more! I am going slow because of the symptoms from cutting. The last week or so was ruff trying to stay ahead of the withdraws. At least I think it was withdraw stuff going on. So hard to tell sometimes. You think you got a handle on it sometimes and you really don't.

Learned I don't have Addison's. What I have is Primary Adrenal Insufficiency. Just a name I guess. They both have the exact same effect on the body, one is caused by an auto immune disease. I just got my adrenal's ripped out...so no Addison's Disease for me. Like I said, just a name... Read more!