Finding Love for My Ugly Disease
Welcome to Vanessa Nguyen’s “My Pretty Ugly Disease,” a new Cushing’s Disease News column.
If you look at me today, you would not know I was once a Cushing’s disease patient. The happy-go-lucky person I am now was once anxious and depressed, had acne and panic attacks, and wore a swollen body full of joint pain.
I was bullied for my weight in elementary school, so I was always self-conscious and suffered from low self-esteem. Through the years, I tried in every way to look my best, so you can imagine how having Cushing’s for years turned my world upside down.
Prior to my diagnosis, I got to the point where I hated myself for how I felt and looked. I was gaining weight rapidly and losing handfuls of hair from my head, my cheeks were swollen, and I had cystic acne all over my face.
The chemistry in my brain had changed due to hypercortisolism. The high levels of cortisol my adrenal tumor produced — more than triple the amount a normal person would have in their system — had wreaked havoc on my brain and body.
To this day, I look in the mirror and see the damage Cushing’s has done to me.
Some damage is visible: There are scars on my body and my cheeks are still a little puffy. Other scars are deeper than the eye can see — they are imprinted on my psyche. If you have Cushing’s disease, you know how deep the depression and anxiety can go.
I think the worst part was being misdiagnosed for years and feeling like I had gone crazy. I wondered whether I was imagining all of these symptoms. Nobody believed how stressed I felt. My body was in constant fight-or-flight mode.
This went on for years. I got to the point where I wanted to end my misery before it became clear that I needed to regain control of my life. I pushed to be heard by doctors and had to be my own advocate to get diagnosed and treated.
Before and after diagnosis and treatment. (Courtesy of Vanessa Nguyen)
It has been six years since I was sick. Some days, I look in the mirror and remember. On my stomach, there is a large scar near my rib cage and bellybutton from my adrenalectomy. Scar tissue formed on my inner arms from multiple blood draws. My cystic acne left scars on my face.
These scars are not pleasant to look at, but they have gotten better, and they are a reminder that I am a survivor of Cushing’s. They signify the strength I had to find within myself.
During my illness, I had to dig deep and love the sick girl who needed to heal. If not for Cushing’s, I don’t think I would have overcome my low self-esteem. In time, I also learned to separate myself from my disease. Still, a part of me wonders how I would look and feel had I not gotten sick.
I am grateful for everything that had to transpire for me to see that the little girl who was once bullied had grown up to be a warrior. I love her now.
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Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Cushing’s disease.
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Bum
Good job yummy I’m so proud of you. ❤️Bummy
Revenna Mason
Thank you for your story. I have been recently diagnosed with cushings after having the symptoms for 2 years at least. It is very ironic because I am a nurse.
I am unable to work due to pain and weakness and the mental debilities. I am very scared. I am still going through testing. Don’t know where my tumor is but my endocrinologist seems to think it is on my pituitary. I hope to get my MRI this week. But as you know currently we are going through the corona virus scare so I am afraid it will slow my recovery process.
I get online constantly looking for answers on those sleepless nights.
The anxious feeling is overwhelming it’s like I’m excited all the time without the happy side.
I need someone to talk to that can help me understand
Thanks again
Lara Demuth
Hello,
i don't really know If I have the Cushing Syndrom, but I can relate to some of your symptoms. A few years ago my face got rounder and rounder and I have cystic acne, which doesn't go away even with medication. I feel that my mood has changed, I was also a very happy and positiv person and now I'm feeling different.The only thing that is different I hat I didn't gain any weight, except for my face but my arms and legs got way more skinnier.
I was by so many doctors but they never knew what to do or doesn't take me seriously. I am definitely going to take a test and I hope that I can have results and then know why I have all of this symptoms. How long does it take to see results from the treatments?
Thank you!
Sadia
I am a Cushing's survivor too and have done the adrenalectomy 3 weeks ago. I have been suffering from the symptoms for the last 5 years! I know only a sufferer can imagine how difficult it is to pass through the time. I have been struggling with weak bones, big belly, empty scalp, screed skin ....--- just turned into an ugly witch from a beautiful princess. At one point, I started to believe that I have turned into a witch because of the curse of someone very close to me. I hardly take pictures: all the beautiful moments with the kids and family is captured without me. , this ugly witch. I lost my career, my capability and my esteem above all. Finally, doctors could identify it was my adrenal gland tumor and they removed it 3 weeks ago. I cant see the improvement in my symptoms yet. Doctors said it will take time and to be patient. ..Yes.. I have been patient and being patient... Waiting to turn into at least a human being from an ugly witch..:-)
Jan
My chiropractor thought that I should be tested for Cushings, my symptoms, fatty bumps on both sides of my neck, a lipoma, fat in my spinal chord (causing alot of other issues), my face is looking distorted to me, the "moon face" the call it. The endocrinologist I saw, simply has me take a saliva test for two nights to see if my cortisol levels were increased, it came back normal, so she said no Cushings. My PCP see all these symptoms including a 40 lb wight gain, mostly in my stomach and it is isn't from over eating. I am in so much pain and so frustrated and so overwhelmed with Dr. appts. I would love to hear from other people experiencing the same symptoms, and could it still be some form of Cushings, or something similar? Any information would be appreciated. I am going to do the blood and urine tests as well just to be certain. Thank you.
Jonas
I do not know if I have cushings. I took a dexamethasone test, but I did not sleep that night so I do not know if that blurs the result? That test said I do not have it. But I have the little humph in my neck (after bee sting), I have streach marks and gain weight easily.