Cushing’s: 6 Months into Recovery
I’m approaching nearly 6 months post-op from Cushing’s syndrome and have had so many ups & down’s with my recovery from Cushing’s that at times I don’t know if I’m making progress or regressing.
About 2 months ago, I went to my endo to get the results from my bi-monthly blood work to check my cortisol & ATCH levels. I still hadn’t lost much weight and was starting to feel bloated again & had swelling my feet and ankles. Turns out I have slight hypothyroidism and that was causing the swelling and the inability to lose weight. I was relieved to find out there was an answer for feeling like shit - and thought to myself ‘I’m destined to get every fat disease there is‘. I just had to laugh, I mean really laugh. All of this is out of my control and if I can’t laugh about this, then I might as well lock myself in my room and cry myself to death. And laughing is way better than death by tears.
So my thyroid is under control and I’m on very little steroids, but I still can’t seem to lose any f@#$%ing weigh. I started working out with a personal trainer and after 3 weeks of getting my butt kicked, I managed to loose a measly 3 lbs. Ok, now I’m starting to get pissed. I’m on less than 5 mg of prednisone, eating well, working out 3-4 days a week - WHY CAN’T I LOOSE WEIGHT?
A couple of weeks after I was diagnosed with hypothyroidism, I went back to my endo for results of my blood work (I have blood drawn so often that now I have a favorite arm). I told her I was feeling better - had more energy, the aches & pains have to started to lessen and my muscles are finally starting to get stronger - and asked her WHY CAN’T I LOOSE WEIGHT? Apparently, due to how sick I was prior to getting diagnosed, my body was refusing to let go of the fat suit until I’m completely off steroids. Since my body was getting stronger & I was having more energy, we devised a plan for me to ween myself off the prednisone. I had been waiting to hear this for months - I felt like I had just won the lottery - ‘Congratulations - Kristin Wall, you have just won $1 million dollars!‘
The weening would take 3 weeks. The first two went by with no real issues - slight aches, but nothing unmanageable. Then week 3 came - I stopped the predinisone. I think I told just about everyone I know. The first day went pretty Ok. Then day 2 came. Holy S@#$ - it felt like I was back in the beginning of my recovery. Horrible aches & pains, bones popping, no energy…The worst part was having absolutely NO appetite. I wasn’t nauseous, it was more like my stomach was in knots. I had anticipated feeling like this, so i just bared with it, knowing the end was near.
Two days later I woke up with a cracked rib - on the 4th of July no less. I wasn’t sure it was cracked, so I waited a couple of days before seeing a doctor. Unfortunately, there’s not much a doctor can do except prescribe something to help manage the pain (hey, Vacodin isn’t so bad).
The following week I had another appointment to see my endo to get the results of my blood work. I had a feeling they weren’t going to be good. I was feeling like hell and my feet were swollen to the point of looking like bricks rather than feet (during the peak of my feet swelling, I had to attend a wedding in Grass Valley - 105 degrees in heels - after the ceremony I ditched the heels and threw back a couple of cosmos to help ease the pain).
It was bad news, just as I thought. My cortisol levels were undetectable and I needed to got back on prednisone immediately. I wanted to cry. I wanted to have a full blown temper tantrum (and in my mind, I did - just for a few seconds).
So I’m back to 5 mg of predisone. I know that may not seem like a lot, but my body is ultra sensitive to the slightest change. And I do feel better - no more aches & pains and I can eat again. But I still had terrible swelling in my left foot (I nicknamed it the brick foot). My foot had been swollen for more than I week and I was starting to get nervous, plus I couldn’t wear anything but flip flops. I called my endo and she advised me to see a doctor immediately. Ugggg. I moved to Seattle about a month ago and hadn’t set up my primary doctor yet since I was still seeing my endo in Portland (it’s only a 2 1/2 - 3 hour drive). So I had no choice but to go the ER. Four hours later (6 x-rays & 4 viles of blood), everything came back normal - in fact I was perfectly healthy. Of course they couldn’t find anything wrong, I’ve come to accept that my health is an anomaly. So I’ve been ordered to keep my feet elevated for the next three days (good excuse to telecommute).
The swelling has gone down considerably and I hope to wear something other than flip flops to work next week.
No word on when I’ll start tapering back on the prednisone again. I feel like I’m a recovering alcoholic, living my life by the Serenity Prayer Grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to the know the difference.
And to be quite honest, the more I accept the things I can’t change, I learn to live for now - not yesterday, not tomorrow - just today.
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