Life after Cushings syndrome…It’s been 5 weeks since I had my right adrenal gland removed laprascopically. Recovery has been rough, more difficult than having Cushings. I knew it wouldn’t be easy, but I had no idea I would be in for this. Honestly, I don’t think there’s anything to prepare you for this type of experience. You just have to experience it first hand and take it one day, one hour and one minute at a time.
I have experienced some really positive results due to surgery: blood pressure is normal (no more blood pressure medication!), severe bruising has dramatically reduced, the red checks are nearly gone, lost my jowels (haha:>), no more hot sweats & no more “zinging” (…because I had an insane amount of cortisol pumping thru me).
My other adrenal gland is taking awhile to “wake up” & isn’t producing enough hormones to sustain my body. Until that happens, I have to supplement with steroids.
For years, my muscles, joints & bones have been swimming in cortisol (normal levels are 6 to 23 micrograms per deciliter - mine were over 200). I had a constant rollercoaster of energy bursts and my body paid a high price. Now that I’m experiencing normal levels of cortisol, I can feel the damage. Arthritic aches throughout my entire body, low energy & muscles that have no strength (did I mention that I’m a fitness instructor???) to name a few.
As I approached my first week into recovery, my body started to freak out. I thought I was losing my mind - literally. I spent days in bed, barely able to walk from my bed to the bathroom (it’s 10 steps - I counted) because I could feel my bones grinding. I became an emotional train wreck. I’ve never been much of a crier, but now everything was setting me off. I started having serious lapses in my memory & would forget words mid-sentence. At this point I was asking myself why I ever had this surgery - I have never felt such pain in my life. On top of that, I wasn’t losing weight.
The first 3 weeks of recovery took me to some dark places, places no one should ever go. With each passing day, things have got a little easier & I’ve started to see some of my old self. The memory lapses have improved dramatically & the cry fests are gone (although I find I’m a bit more sensitive now?). The aching has lessened, but is still very much there.
I went to the gym yesterday - for the first time since the beginning of Dec. It felt good to move, to feel my muscles working. It was biter sweet. I nearly started crying as I walked down the stairs at the gym. My legs almost gave out on me because of weak muscles & shooting pain in my knees. I kept thinking to myself…I will not take the f*&%ing elevator. I would rather go tumbling down the stairs. I refuse to be physically crippled by this disease damn it! At that moment, something clicked, I knew I finally found my old self: fierce, unrelenting & determined - obstacles are just goals.
Patience is a virtue…oh my :>
I won’t see any weight loss until my steroids are significantly reduced. Each week, with new test results, I am hopeful. Baby steps, right?
This morning I received a comment from a woman who has experienced many of the Cushings symptoms. My heart went out to her. I so badly wanted to reply, but she didn’t leave an email. My goal in sharing this journey publically is to give others an insight to this horrible, horrible disease. There’s little awareness about Cushings & is often mis-diagnosed or not diagnosed at all.
I was lucky to have a doctor who understood the symptoms & took the appropriate steps to get a formal diagnosis. But in the end, you have to be your own advocate. I hope others find the information I sourced to be of value & help them in their journey.
