Ok, before I start this rant, I want to thank the DFW Smart Car Club for their generosity. My friends in the club showed how much they appreciate what I do for the club and gave a substantial donation to help Mrs. Zebra and I up to Seattle. Thank you all!But something else has really started to bother me and I had only really heard of this. I had never experienced it, at least in my face before. I had a co-worker ask me, and later my boss did too, why I need so much time off after surgery. "Its not like its cancer or anything." WTH? (I mean I know they just dont understand, and they are really awesome people but I need to blow off some steam so just bear with me). Then my aunt tells me that Cushing's doesn't have the "torture and death" that cancer has. EXCUSE ME? Oh, so Im not SICK ENOUGH for anyone, am I?
Look, I don't want to down play down cancer. It can be a very horrible condition. But I know more people that have had cancer and have told me "you know, they caught it early and treated it, and Im fine. Kemo was bad, but now its like it never happened." I have YET to meet or talk to ANYONE with Cushing's that said ANYTHING like that! First is the fact that there is a SIGNIFICANT number of people who have Cushing's and don't know it. MY MOTHER WAS ONE, at least as far as I can tell. We will never know for sure. I say WAS because one of the symptoms of untreated Cushing's is an early heart attack and early death! Aside from that, Cushing's is hard enough to get diagnosed. Some people wait years, or die waiting because the treatment for their weight gain, diabetes, high blood pressure, constant agonizing pain all over, insomnia, depression, constant diarrhea, mood swings, hair loss, hirsutism, blindness, nasal issues, ADD/HD, infections, thin skin, constant feeling of heat or cold, body wide acne, cysts, bone and joint problems, thats all I can think of off the top of my head. THATS NOT BAD ENOUGH FOR YOU PEOPLE? THATS NOT SICK ENOUGH? AND Cushing's can LEAD to cancer!
THEN, there is the treatments! Its not as simple as cancer in many cases. Best case scenario, you get your pituitary tumor taken out and try to ween yourself off the overdose of cortisol your body is used to. I've had tastes of this time and I want to die. No, not "Im emo, and I want to die", no I mean "Please kill me so the pain goes away." But thats not sick enough.
So, that surgery fails. You can go back in, or they can try radiation. I have a good friend that tried that. So much, her pituitary is shot and has the texture of an eraser because of it. In that case, you get the lovely decision of living the way you are, or trading your disease for Addison's by having your adrenals taken out! Ok, so you choose that and take meds the rest of your life... Except that THIS procedure might make you grow tumors all over your brain that they cannot operate on. Thats called Nelson's disease. And this is SOOOO much better than Cancer! SURE! Look, just because YOU don't understand what I am going through, doesn't give you the RIGHT to tell ME Im not sick enough. You have NOT FREAKING IDEA WHAT I HAVE BEEN GOING THROUGH FOR 18 YEARS! Either ask me questions and talk to people who have this for STFU!!!! "My invisible disease is MORE REAL than YOUR medical degree!" SO STEP OFF!!! If you Cushies have anything to add, comment so the ignorant people who read this can get a better idea of what we go through. The Weary AND ANGRY Zebra