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Cushing's Awareness Challenge - Day 11

There are a lot of expectations when you are finally treated or cured from Cushing's.  It can be harder than having Cushing's, or it might be a breeze.  Here's what I experienced after my BLA.

At first, I didn't feel well, slept a lot, and lost a little weight.

I experienced some heart problems within a few weeks of my BLA, and had to go back to the hospital twice.  This was pretty scary, but luckily it ended up being nothing serious.

I expected an overnight change, but I didn't really see or feel a positive change for about a year.  I even got a few comments from people saying "I'm so sorry the surgery didn't work!"  This was heartbreaking for me.  I really wanted to prove, more to myself, but definitely to my friends and family, that I wasn't crazy.  I felt that weight loss would finally prove that I was telling the truth, that I was sick.

Finally, a year after my BLA, I started losing weight rapidly.  I took myself off steroids (yes, I know, not a good idea) for almost a year.  

I never felt "better" or "normal".  Still don't, probably never will.  I think I was expecting a new life, but unfortunately for me, that wasn't a reality. 

The hardest part of recovery wasn't anything physical, it was grieving the kind of life I thought I would have.  No one ever imagines as a teenager that you are going to be sick for most of your life.  No one ever dreams of lifelong chronic illness.  You don't hope for that.  I planned my life out, high school, college, medical school, husband, kids, vacations, buying homes.  When that didn't happen the way I expected, and it maybe is happening to my peers, it is a very hard pill to swallow.  

Of course, all of this might still happen, just not on the timeline I thought, and not in the same way.  

I also never expected to be as open and honest about my personal health.  It became more of a necessity to talk about it.  I think that's mostly how I am able to get through the hardest times, by talking and writing.  I have had resistance, from coworkers, from friends, from family.  I think they would be more comfortable if I wouldn't talk about it.  But I also understand that for most of my friends and family, it is not something they can relate to.  



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