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.