Tuesday, July 18, 2017

Looking back at the path you chose

In case you haven't noticed, helping other Cushing's patients wade through the cortisol quagmire is kinda a big deal for me. I choose to spend my free time doing it. Why?

I don't like seeing others struggle. 

I don't like that Cushing's is ruining Cushies' lives. 

I don't like how poorly doctors treat us. 

I detest inefficiency.

So I do my best to take time and answer questions from blog readers and facebook friends.  Tonight, the post was about ketoconazole. The Cushie had gone to the emergency room twice for adrenal insufficiency and adrenal crisis while taking ketoconazole. 

I remembered that I too took ketoconazole. My memory isn't what it used to be, and as such, I set out to search for the word keto on this blog, for so much time has elapsed that my Cushie brain can't hold the details any longer. Fair enough. 

I found the link I wanted (Keto: It Was Fun While It Lasted), but I found the post that proceeded that one by just three days called New Chapter of my Life dated November 3, 2013.  I shared the link for you to review if you are so inclined.

I read through this lost post wondering what was the new chapter of my life. I don't remember any new chapter of my life?! I was floored with emotion as I read my own words recounting the story of my decision to proceed with a bilateral adrenalectomy, which doctors often dissuade us from considering because BLA is the last resort treatment for Cushing's. 

The phrase, "I did everything the medical community asked of me" really hit home. Because don't we all? Aren't Cushies pushed beyond the point we can handle emotionally, mentally, and physically every single day and somehow manage to fight on until the day we reach remission? Does anyone remember my explanation for how statistically rare it is to have Cushing's and yet, we do? Cushies have hit the unlucky jackpot? for Cushing's.

BLA is not easy. It has taken many, many days to get to know my body and what it needs. I do stand tall in the explanation that I made to myself at that time, as it is still one that stands up to reason and emotion. It stands the test of time. 


I will post one day soon about the improvements I've experienced since BLA. I will foreshadow that it is difficult to parse out what long term effects are from Cushing's and high cortisol and what I can blame on rheumatoid arthritis. That's for another day.

See you soon, Cushies.