Thursday, June 28, 2018

Calories In, Calories Out

Last week someone was explaining to my son the “calories in, calories out” theory and I had to interject “Unless you have Cushing’s.”  They looked at me oddly and just moved on. I understand the theory, but I’m pretty sure we’ve disproven that one many times over.  And hidden in those words is a personal history of decades of blame and shame. Its a simple choice, right?  Eat less, eat better, and exercise more and you'll be healthy!  I wish. I don't want my children learning that those who are fat or sick made the choice to be that way.

Few who are obese are without some underlying condition -be it insulin resistance, depression/anxiety, eating disorders, autoimmune disease/treatment, neurological damage, or a myriad of things including my personal least-favorite, or a tumor. We are SO judgy and make so many assumptions when it comes to weight and it is not okay. What is worse is that the medical community does it just as often. 

It is NOT normal to gain 1.5-2lbs *A DAY* for two weeks straight, then lose .25-.5 lbs in a day for two weeks straight WHILE your activity and diet are stable, and then repeat that cycle month after month. It wasn’t poor diet, overeating, laziness, depression or low vitamin D. It was a tumor in my pituitary causing excess cortisol in roughly two-week spurts, causing a deadly and debilitating illness called Cushing’s Disease. I had brain surgery and am now in remission, but because of the damage done by the disease and it’s comorbidities, the 15+ year delay in diagnosis and treatment, and the complications of the treatment itself, I’m still not “well.”  I still have to make constant adjustments for my health, having to rethink my goals, plans and activities on a daily basis. 

The reality is that nobody feels good being fat. We all wish we were healthy, skinny, physically able, etc.  We ALL know the theories and practices behind weight loss. Few are too lazy to make that effort. Most of us have spent years, decades even, fighting against it and seeking health. Some of us do all we can towards the desired changes to no avail. Maybe it’s time we start assuming weight gain is a symptom instead of the disease, and respond with empathy and support.

Thursday, June 7, 2018

Cushing's recovery expectations

I was speaking with a friend yesterday about trying to balance maintaining a Cushing’s patient’s hope for the future, while at the same time giving them realistic expectations. Diagnosis is often such a long road that we hold on to treatment as our source of hope to get us through all of the losses, judgment, struggle and waiting it takes to get there. We naturally start to view surgery as the end, because it has been our goal for so long. We can imagine we will quickly go back to normal, lose the weight, gain energy, regain strength, feel well, return to our pre-Cushing’s emotional and mental states, be able to keep up with our age-peers, etc.

While that isn't a realistic expectation, n
one of us want to take away the hope that is keeping someone afloat. If you have Cushing’s, you need treatment. No ifs, ands, or buts. The longer you wait, the more permanent the damage becomes. But even for those who do get the most positive outcomes, they often have to go through months (or a year or four) of pain and recovery post-op to get there. It isn’t easy. You may not feel like you are improving. You’ll wonder if life will ever get better...But it does.Often it is so gradual that you only see it in hindsight, but still it does. You may not get 100% back to where you were, but you’re able to work, cook and clean, exercise, and enjoy recreational activities again.

That’s the best case scenario and many of us honestly don’t get that. 
Many require more surgery. Many are left with permanent damage from the Cushing’s, it’s treatment, or both. We have to come to terms with our new “normal”, which can be quite hard (still working on that). But even being on that short end of the recovery stick ourselves, we believe it was worth it. We will help fight for your future. Cushing’s will take and take until there is nothing left. If stopping it in its tracks is THE BEST we can hope for, it’s a hope worth fighting for. The harsh reality is that we’re all gonna die in the end either way, so you might as well try to get a better life in the meantime.  We know the costs because we’ve paid them, and we’re telling you, as hard as it is right now, as hard as it may get, your future is worth it. You are worth it. We are worth it.