I’m 16, going on 17… and I think I’m close to being diagnosed with Cushings. Quite frankly its scaring me so I’ll just do my best to get my story out there.
I’ve always kind of been on the heavier side compared to other people my age, even when I was really little. However, my weight has shot up from 60 kg to about 110 kg in 2-4 years, and my already awful confidence is basically shattered.
When I got my growth spurt I got severe stretch marks, but I thought it was nothing, and my parents attributed it to me growing so quickly or something along those lines.
I’m in constant pain, I’ve barely been to school since September 2016. I can barely move half the time due to severe exhaustion and pain, I fear for my future.
We originally thought all the pain was from gluten intolerance, which I was diagnosed with, late 2015. We completely cut gluten out of my diet, but instead of getting better, my symptoms got worse. The exhaustion lead to a diagnosis of chronic fatigue in mid 2016.
On a whim I’m guessing, my doctor ordered tests for ACTH when he got told of my worsening symptoms. It was much higher than it should’ve been, and I got forwarded to an endocrinologist, more tests, ect… I need to go back in a few days for the results, I’m becoming more and more nervous the more I wait.
My already bad mental health has taken a hit, as well. I was never really mentally okay due to a horrible string of things happening to me in my childhood, but when this popped up my illnesses got 10x worse, to the point I’ve harmed myself and attempted suicide. Even when I feel okay enough physically, I can’t go outside without being scared something will happen to me or that everyone is judging me for how I look. I was on medication for depression, but I was able to function even less when I was on it, so I was taken off of it. I have depression, anxiety, PTSD, and other disorders which have been diagnosed and they’ve all worsened in some way.
My schooling has taken an even bigger hit, I can’t think right due to disturbed sleep, general tiredness and headaches. I used to be a fairly good student and before I left, my grades had dropped significantly, my teachers and peers were looking down on me for how far I had fallen.
I used to constantly blame myself for my weight, I’ve hated it since I was very little, so at least this gives me a small bit of relief that its not completely my fault.
I just want to get my life back, I have my whole life ahead of me, but my teenage years are basically being stolen from me like I had my childhood stolen. While everyone else my age worries about tests I worry on if I can ever move out of my house or even walk to the shops again. It feels wrong and cruel. My symptoms have suddenly gotten much worse and I’ve developed new ones, and I honestly get more scared by the day.
Everyone else’s posts give me a tiny bit of hope for the future, I just hope I can one day live like everyone else does and not be weighed down completely by illnesses. It will be a slow road, but I just hope I can get there in the end.
Thank you for reading this to the end if you have, sorry if its just a jumble of words. ^^;
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Feb 21, 2018 @ 15:58:55
Thank you 🙏🏼 First off let me share a fact and the truth: you are not to blame and you are stronger than you realize to admit on a public forum your fears, history, and candidly open up wholeheartedly & I applaud your courage and honesty. Every case is different and given the extreme rarity among the approximate 8-10 diagnosis of Cushing’s across the globe annually I must admit I don’t know exactly how you feel but I am sincerely sorry that you have been forced to endure this and that it is not an easy journey that will simultaneously end happily ever after with a diagnosis or even after your medical treatment; which I do hope you get the answers you’re seeking as if it is Cushing’s you will be headed towards progress but as every Endo and surgeon will tell you if you wind up having Cushing’s and surgery or another form of medical treatment the road is long, it is hardly recognized, it’s paved with good intentions but seemingly too often you will find that the hardest part after all you already have been enduring is the waiting.. the patient learning to be patient as I have a rare form of subclinical Cushing’s. First time I heard of it is similar to your experience only I spent all my life underweight but crippled with a weak immune system, spinal damage, TBI/head trauma and pain as I imagine you have been left to suffer feeling you’re alone but I want you to know you’re not alone. You’re post gave me the courage and empowered me to admit I’ve been putting my life on pause waiting for some magical moment when im cured.. that’s not how it works and sadly the medical community isn’t sure about much in respect to Cushing’s. Alas, I read your post and I realized I feel just like you described. I’ve tried ending it & ive never had the guts or courage to openly admit this until now bc of you. I thank you for being so open and I want you to feel safe and whatever the diagnosis you’re not alone & you ought to join the Cushing’s or rare disease groups on social networks & I personally want to be there if only to share this forced excruciatingly painful journey as doing it alone is a horrible pathway to take & you need not further punish yourself and let us help carry the burdens and adversity of this journey especially for those who have gone thru the testing, diagnosis, imaging, surgery, and are living examples for you to see for yourself as there’s just too little intel on this disease & syndrome to continue it on your own as many I’ve met thru the groups have stated to me their experiences and that’s the best intel or timeline I’ve had since my posterior adrenalectomy of my cortical adrenal Tumor and removal of the organ. Many of the Cushing’s patients like myself have had to become medical experts and our own advocates to ensure the best plan of care occurs and even then as I type this i’m saddened bc I know some of yourbpain as everyone experiences tragedy and horrible inexplicable experiences that cannot be compared albeit i pray and hope whatever happens next for you that you immerse yourself into being a cushie Warrior and don’t be afraid bc there’s an army of us beside you. Ps: last April for my bday I wished I would have my diagnosis and then poof- I got it and suddenly I did and didn’t want Cushing’s but knowing I had it terrified me as you shared it causes you fear- yet knowing is the first step on this journey. It will not be easy but the best things in life never are, you don’t deserve any of this, but you will have to deal one way or another with your diagnosis outcome so if it’s Cushing’s I do promise it gets better.. but it takes time& tests your will, breaks your spirit and body and yes the pain will not instantly vanish but once you have your diagnosis you will start your plan of attack and then it’s the recovery period of time that even the best medical minds can’t put a time or date on when you will be healthy again. In the meanwhile please continue to post, document and journal your experiences- life is a miracle and even for some who have lost the battle or given up at times for too many rational reasons to try listing, I know I may never be who I was before but one day in the next year I will be a new version of me & it will be my 2nd chance at living. And I’ll never take that for granted but getting to that point is hard as hell. Ultimately fighting this is a war with many battles along the way & it’s taught me that whatever challenges come I will be strong enough to overcome bc I beat this & you will too! Crush cushungs !! Lastly, please believe that this roller coaster of emotions disrupts and wrecks every part of you but there’s one piece I’ve learned Cushings cannot touch- my soul. Bc deep down i’m still here & I want all of us to make it to the other side of this horrible disease to find we are not defined by our disease and while it will dictate your actions, emotions, and quality of life- your resolve to win the war and not just the battles along the way will lead you to a whole new life you deserve to love living everyday. God bless you & thank goodness for your character and honesty as you unwittingly have inspired and empowered me to keep fighting for a cure and for a better healthy life bc I want that more than anything for all of us, you included. Praying for you