Have you ever been on steroids for anything? Do you remember the hunger you felt on them? That's all I remember feeling in my life prior to my bilateral adrenalectomy. I have always been hungry. Ok, let me clarify "always". Let's say 80% of my life I was hungry. Between the flu and what I now know were "lows*", I had periods of no hunger. But for the most part, I was somewhere between stomach-growling hungry to ravenous, bite-my-arm-off hungry.
Does that mean I had no willpower? No. I managed, with the help of my very nutritionally wise mother, to stay at a normal weight even through college. I did put on the freshman 15 in my sophomore year of college, but also managed to lose it by essentially living on caffeine and a diet of books. (Study, that is.) Labs are not good places to eat, and I basically lived in one.
Was that easy? NO! I confess to binge eating at times. I don't think I ever purged. I don't remember doing that. I was so absolutely hungry and nothing would sate my appetite. Nothing. I know my mother knew it, too. I remember slipping into the kitchen when I was small and "stealing" bread or crackers hoping she wouldn't notice. She never mentioned it, but she was sharp. She knew. I would panic at the thought of not being able to have food even at a young age.
Snacks were forbidden when I grew up unless we picked an apple off the tree or a tomato out of the garden. We ate three nutritional meals a day, drank skim milk, and lived outside. Yes, I exercised. Only we called it "play", then. Bicycles were star ships and swings were space stations. Lightening bugs were made by God to be chased. Dusk was a time for hide-and-seek. But I digress...
After college and graduate school, I got married. Had babies. Couldn't lose weight. You can read all about that in Metamorphosis. The thing is, I was hungry all the time. But I DID NOT EAT all the time. Sure, it absolutely possessed my every thought, my every action and my every plan. I had to know food was available even if I didn't eat it. And yes, sometimes I lost control and I overate. I wanted so much to be free of that obsession with food.
I managed to lose that obsession one time on phentermine. However, I started gaining weight even then. I was in a "low*", either induced by the phentermine or just coincidentally, prior to that gain. I vote for the latter.
My disease accelerated. I became "florid" or "classical" as my neurosurgeon coined it. I daily went from periods of nausea in the morning to periods of starvation by afternoon. Ok...it felt that way. I WANTED FOOD! I wanted to EAT! But did I? Most of the time, no. I counted calories, I measured food, I watched my carbs, I measured fat grams, I ate high fiber, I tried to exercise.
Let me emphasize: I TRIED to exercise. Have you ever walked through mud? How about walking in the waves in the ocean? That's how my legs felt when I tried to do anything. That started a long time ago, but I persisted in trying to build them up. Even when I was at my worst before my first surgery to remove my pituitary surgery, I did water aerobics and/or swam several times a week. I did that until the pain became unbearable. I even hired a trainer who eventually told me something was very wrong with me because I could not build muscle.
Did I lack willpower? I don't think so. Only a few people know the magnitude of the will it took to find someone to help me, understand me, diagnose me and get me on the road to recovery. I fought hard every day to lose weight. I fought hard to get well. I fought hard to live! To work! To be here for my daughters, my grandson, my brother, and my parents. I fought the "establishment" called medicine, too. And I still fight for all that. And I am not alone. Zebras do exist.
I am no longer hungry for food. Since my BLA in June 2010, I can exercise plus I am seldom starving. I often have to remind myself to eat. I am hungry for understanding, however. Not just for me, but for all who fight as I do for others to see beyond the obesity to the true problem of Cushing's Disease/Syndrome.
*"lows": periods in the cycle of cyclic/intermittent/episodic Cushing's where cortisol is low.
wow im so glad i found your website ive recently been diagnosed with cushings after many years of being told everything from youhave hypocondria to sever depression. wow its almost a relief although it truly is a ugly disease, ive been woundering does any one else have terrible night hunger as i wake up within a hour or so of falling asleep so starving its unberable hunger.
ReplyDeleteYes, night hunger is very common with Cushing's. That's when the cortisol is the highest. I so understand the progress to diagnosis and how long it can take. If you haven't emailed me, please do so. I can put you in contact with some awesome support groups.
ReplyDeletewhat is bla?
ReplyDeleteBilateral adrenalectomy, which is removal of the adrenal glands. :)
ReplyDelete