Life After Cushing’s Syndrome
Life after Cushing’s syndrome…It’s been 5 weeks since I had my right adrenal gland removed laprascopically. Recovery has been rough, more difficult than having Cushing’s. 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 roller coaster 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 Cushing’s 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 publicly is to give others an insight to this horrible, horrible disease. There’s little awareness about Cushing’s & 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 patient advocate. I hope others find the information I sourced to be of value & help them in their journey.
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19 comments
My thoughts and good vibes are with you, dear friend! Hang in there, and know that you’ll be through this challenge before you know it! xo Erin
Kristin, thank you for sharing and letting us know how you are doing. My heart goes out to you, and I wish you a more speedy recovery!
-china
You are a warrior! Things are going to look up soon sweetie. Stay strong and when this starts to get better we wil celebrate with that bkie ride and gellato day!
Andrea
Kristen, I’m excited for you
I am praying for your Kristen. Thanks for sharing your journey. My Doctor is currently testing me for cushings so I decided to read a little about it and found your site. You are very brave, I can’t wait to hear more about how your life and body gets better and better.
Jen,
Thank you for your prayers and kind words. Reading your comment, along with the others, gives me the strength I need in those darks moments. My hope is sharing my journey publicly is that it will help others, like yourself, in their own journey. The most frustrating part in my recovery has been the lack of reference or expectations. Yes, there’s quite a bit of medical information out there. But few people have shared their personal experience with Cushings.
I’ll be sure to continue writing about my recovery. I wish you the best of luck!
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Great to hear u have a fighter attitude. It takes every ounce of oneself to defeat this disease. I can totally relate to everyone here. I’m so glad others like myself are defiant against this horrific disease called Cushings. I had a pituitary tumor remover Nov 16 2006. It was successful a recent MRI showed all is well up there. I’m currently seeing a Naturopathic Dr who is absolutely wonderful. Please contact me if u would like to share some more.
Hi i just stumbled across your page and i agree 100% there is not enough awareness about cushings. I have been going to my family doc for over 6 years now (Im only 19 btw) and all he ever did was treat the symptoms and never listen to me nor look for any cause. I have fianlly been diagnosed with cushings and it will be a few months before I get any appoinment for it but I felt relieved when someone believed me when I said something wasnt right and they werent ‘phantom pains’ when I would sit down or just walk anywhere. Thank you for posting your recovery process here because its hard to find anything about recovery from cushings online, all I find are decriptions of cushings. I hope all goes well for you and your fighter attitude stays strong.
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