6 years!

On this day six years ago, I was given my life back. As you can imagine, for some of us, this is the greatest gift that we can ever receive.

My parents flew to Seattle with me. It was their first time there so we tooo a bit of time to sight see, and then settled into our triple room at The Inn at Swedish, that would be our home for the next couple of weeks.

The evening before my surgery, we went out for Vietnamese food at my favorite place in Seattle, Lemongrass. My parents were unsure but ended up loving it. It was nice that we made time to stop and smell the roses and enjoy a couple of days in Seattle before my surgery because recovery was anything but fun.

I woke up the morning of my surgery, bummed to find out that I had my period. Just what I needed. I was most concerned about managing it when, with any luck, I’d be too weak to handle anything more than lifting my head. Why would I consider that lucky? Let me explain.

After the source of the high cortisol is removed, the body goes into withdrawal, and it can be brutal. The doctors look for these withdrawal symptoms as a sign of the success of the surgery. If the patient doesn’t “crash,” it tells them they didn’t get all of the tumor or bad cells and have to consider going back in.

Crashing was the goal. It’s what we all hoped and prayed for.

When I woke up in recovery, I was so sick to my stomach. Anesthesia has never been a good friend of mine, and despite the anesthesiologist’s best efforts to help me not get sick from it, it didn’t work. I woke up from surgery puking, and when I got to my room I continued to puke. It was awful.

After an hour or so of being sick (and crying – I’m a horrible sick person), Dr. Mayberg’s neurosurgery team came running in with great news.

I was crashing.

My cortisol levels were 0.89. Anything less than 2 after surgery is considered successful. I can’t remember what my starting number was, but I know it was a significant drop that happened very quick. So quick that it shocked the doctors. They’d never seen a patient crash so fast.

Low cortisol is no joke, though, and this was my first taste of my “new” life as an adrenally insufficient person. I’d notice that I was like an energizer bunny. I’d take my dose and by the time it was ready for my next dose, I’d be shutting down, falling asleep standing, completely spent from a full day of laying around or rolling around the hospital in my wheelchair. I also woke up without my period. Exciting, right?

My dad left to go home and mom and I stayed behind for a few more days. It was as fun as staying in a hospital can be. We went grocery shopping and bought a fan, as my new music hormone-deficient self was battling hot flashes that soaked both me and my bed every night. We ordered Chinese food and ate it in the cafeteria and watched a lot of TV. Mom is a great nurse and I’m glad she was able to take off work and stay with me.

The flight home was miserable, and I was feeling awful by the time I landed. My surgery was a week before my 30th birthday, and let’s suffice it to say that I wasn’t in a celebratory mood for my 30th. In fact, I spent the entire day in the hospital due to a staph infection in my abdomen. As part of the surgery, they patched the opening in my head with fat from my abdomen, but after I got home the wound opened and was already infected. Since it hadn’t healed at all during the week since surgery, I ended up having to hire home health nurses to come and pack the wound for me as I was too weak to do it myself and it hurt way too much.

I also battled a horrible CSF leak after my surgery, and that alone almost drove me insane. It tasted awful, made me so sick to my stomach, and made my head hurt. The doctors at Vanderbilt did everything they could and were preparing to go back in and prepare the leak when it stopped.

Tapering down on my steroid dosages were also not fun. I started at a high dose and had to get to a normal replacement dose on my own within a matter of weeks. It was terrible. Try taking crack away from a crack addict and see how happy they are. Not very, right? My body was addicted to cortisol and the withdrawal symptoms were one of the most brutal things I have ever experienced.

But eventually, I got through all of this, enough to stand on my own without help, enough to go and be social, a little but at a time. Enough energy to walk to the mailbox, or cook dinner. I even managed to go to a concert out of town, in a wheelchair and surrounded by friends who knew how to help me if I needed it. I met new people that became great friends and started out on this new journey.

I know everything that happened during my recovery sounds crazy, but I wouldn’t change a thing. Life adrenally insufficient is so much better than life with Cushing’s. As long as I take my meds, I can pretty much do anything old Rachel would have done.

Sometimes things like UTIs can send me into a tailspin but my family and friends know how to treat this with emergency injections and know to get me to the hospital. I’ve had a couple of scary adrenal crises since my surgery in 2011. Little things like UTIs or viruses can send someone like me reeling without a moment’s notice.

But overall, I manage just fine. It’s required removing stress and toxicity from my life, and moving on when something no longer serves me or my health. I left a job that was so stressful it caused both of my adrenal crises I’ve had since 2011. I haven’t had one since I’ve been at my current job, and there’s a reason for that.

My friends list is a little smaller, but the ones still there are important. It is definitely quality over quantity these days and it suits me just fine. I’ve become a yogi, to further help myself de-stress, and I meditate, too. Anything at all that I can do to remove stress, I do it.

Stress is an adrenally insufficient person’s worst nightmare, and sometimes it is avoidable but most of the time you can find ways to work around it.

But still, despite everything I’m glad every day of my life to be on this side of the spectrum. Every day I fear a return of Cushing’s; I’m not sure I will ever stop being scared of a recurrence. But for six years now it’s been stopped in its tracks.

Here’s to six more years.

Rachel