April 15th, 2018
My Cushing’s Story
I hate myself. I hate looking in the mirror, I hate my bumpy skin full of acne, I hate my fat face, this is the heaviest i’ve ever been. I hate the fact that nobody understands what I’m going through and seem to hate me. Most of all I hate the fact that I can’t even stand the person I’ve become. I’ve become anxious, depressed and unable to handle my emotions. Lately I can’t even sleep past four hours and I’m scared when I’ll get another panic attack. Why is this happening to me? I feel miserable, I can’t live this way anymore. I’d rather end this than suffer any longer. I’ll take a handful of painkillers and half a bottle of wine. I just wanted this pain to end…
I can remember it like it was yesterday. I was reliving the worst night of my life in 2013. The emotions, pain and suffering was real. I just wanted it to stop. How did I get to that point? How did it all start? From what I can remember, as a teen my periods started to get irregular by the age of 17. My skin became problematic with breakouts but still manageable. Towards the end of high school was when I noticed my emotions seemed unmanageable. I felt some sort of anger stem from inside me and would always let my negative thoughts control my life. I didn’t know how to be better nor did i care because i thought maybe that is just who I am.
By the time I was 21, I was gaining weight but a low carb diet and an hour at the gym took care of the weight gain. Even though my symptoms weren’t out of control, There was something i was feeling inside I could not shake. I felt broken. And if you are a cushing’s patient, you will know what I mean. I was starting to do some soul searching at that time but whether it was meditation, yoga, reading self help books, even joining a meditation cult.
Yes I almost joined a cult.. none of it seemed to help me feel better. The self hate was growing inside me to the point I would start blaming everything and everyone else for why I was so unhappy. It also didn’t help that during this time, my acne got worse where it became deeper painful pimples that grew frequently around my cheeks. My period became so irregular that I wasn’t sure how many months would past before I would get another one. Worried, I went to see a doctor who took some basic tests and told me I seemed to look fine and maybe I should get on birth control. Which I tried and only seemed to enhance my mood swings. I would try to visit the doctor again and still, they could not offer me a real solution, I felt let down that nobody was hearing me out and maybe it was just me. Maybe if I could somehow be a better person all my problems would go away. I decided to revamp my lifestyle. I downloaded a calorie counter and made sure I ate only 1100 calories a day mostly vegetables and lean protein. I worked out 3 hours at the gym and did fitness videos in the evening. I would lose weight for a short while but the pounds would creep up again so I cut my calories all the way down to 700 calories a day. strangely enough around that time I could not sleep at night anymore. That’s when the insomnia started. I was sleeping maybe 4 hours a night. I started to feel that Everytime I tried to socialize, I was anxious. Like everyone’s judging me about how i looked or the things I said. I felt like I didn’t’ know how to act in social situations anymore. I felt embarrassed to be in public and to let people see me in this state of confusion. Of course, I blamed my environment and decided to cut friends off because hanging out with them was not fun for me anymore. But I also felt I was not a fun person to be around either. It was a confusing time in my life. I didn’t know how to be at peace with myself. One minute I would blame people for why I feel so angry, sad, anxious, depressed.. The next minute I would blame myself and feel ashamed like God was punishing me for being a bad person and thinking negative of others.
At 23 was when I started to get panic attacks. I took a job and was going to school. I was still obsessed with my diet and fitness regime. But I did stop socializing and isolated myself from friends, family and co workers. I felt very isolated but at the same time my condition was so bad to the point I was drinking myself to sleep every night. At this point I hadn’t had a period in a whole year. My acne was full blown cystic where my face and eventually my neck was covered in these deep painful bumps and it would hurt to even smile because if i moved my face, the cysts would burst and pus would leak everywhere. I would count how many cysts, pimples and boils I had on my face everyday and i remember it would be 50+. I had a huge puffy face that felt so heavy. The hairs on my head were thinning and I was balding from my temples. My body ached in pain and I would cry myself to sleep every single night. Desperate I tried researching every problem I had and tried every herb, pill and potion to cure myself to no avail. I was too scared to go back to the doctor and be let down again so I tried to cure myself. At family holiday events my family would suggest for me to wash my face more and take supplements or try to be happy and stop stressing out and I would feel better. Everyone seemed to have an opinion on how I should cure my problems. Being alive felt like pure torture but I tried to keep my head up even though I knew I could shatter at any moment.
At 24 I was so unhappy with my life. I was getting panic attacks every other day that felt like I couldn’t breathe. It would come out of nowhere I would start to get tingles on my limbs that moved onto my entire face. I couldn’t move and felt paralyzed and had trouble breathing for 30 minutes to an hour. I could recall the worst panic attack I ever had was the night I thought would be a low key night of visiting my then boyfriends family. We came over for a short period for him to pick up something from his grandma. One of his siblings was there and she was somebody who was never nice to me. I guess she was going through a teenage phase but that night she came and sat in front of me and started giggling. She then looked me in the face and said “wow you’re so fat now” and laughed uncontrollably. I was so upset and walked off crying. I came home feeling like I was living a nightmare. I’m doing everything I can to be healthy I am borderline anorexic, I try so hard to be a better person but I am only getting worse. I’ve been doing so well isolating myself and the one time I go outside this horrible person makes fun of me. I felt weak, I felt defenseless, I had the worst panic attack yet and thought I can’t take another day of this pain. It was the night I took a handful of painkillers and drank the bottle of wine. I wanted so badly for my misery to end. I was ready to die than to live one more day in that condition. I pass out and the next day I woke up. I knew I needed this to end. Instead of letting that girl’s bullying get the best of me, I knew what I had to do. Deep down I knew I needed to seek help. Not the temporary kind of help. I wanted a cure to my problems. So I put my symptoms into webmd and lo behold, Cushing’s disease popped up. It said it affects 10 people out of a million so when I told my boyfriend at the time, he said no way that’s too rare. Deep down I knew it must be hormone related so i continued to research about hormones. I finally concluded that my best bet was to see an endocrinologist which was a doctor who is expertly trained in hormones. I looked into the best doctor i could find in my town and though he was pricey and had a waitlist plus I didnt have insurance, I knew I had to take the risk because I couldn’t fathom living this way any longer.
The day came to meet my endo. I wrote a list of all my symptoms down and read it all to him. He asked me if I ever heard about pcos and if i wanted to get on birthcontrol and immediately I told him that I am looking for a cure and requested that he tests me for everything under the sun. He was reluctant but agreed to all the testing. He took an extensive hormonal evaluation of me and a week later called me back because he thought my cortisol levels were high. I came back in to take a dexamethasone test and waited another week to get the results. Waiting was so hard because I just wanted answers. So the dexamethasone test came back and showed I was indeed high in cortisol. Still, my doctor felt like I didnt look sick enough so he decided to take more tests on me. The next few weeks we did a 24 hour urine colletion, saliva tests, and ultrasounds. He then was convinced it was Cushing’s disease but still did not tell me much but to go ahead and get a CT scan of my adrenals. A week later he read me my results that I had a tumor on my right adrenal glad producing cortisol and diagnosed me for Cushing’s Syndrome. I felt vindicated that finally I had the answer I have been looking for and all this suffering was not because I was crazy or because I was a bad person. He told me I would need surgery to get rid of the tumor and I was not afraid to proceed.
The process of looking for a surgeon to perform an adrenalectomy was daunting. I didn’t have insurance so I would need at least 10-15k to pay for the surgery. That’s when my endo suggest I get on a financial assistance health program in my county. I applied and 2 weeks later got approved. It would take care of 80% of my surgery. But first, I had to meet with the team of endocrinologists from the health program to get approved for surgery. Once I got approved, I was on the waiting list for a surgeon who specializes on cushing’s patients. Only problem was it was a 3 month wait. At that point I told myself at least It will happen and I will get better. I started to let go of the ocd and expectations I had on myself when it came to my appearance and my mental state. Family was supportive and I told them I needed space because I didn’t want to trigger a panic attack. I was patient.. Then one fateful Sunday I got a phone call from my surgeon. He told me he had a surgery cancellation the next day and if I wanted to take that spot. I agreed and ran out the streets of my neighborhood jumping for joy. The day of the surgery I was nervous. When I got to the hospital they explained to me they would make four incisions on my stomach almost like a stair case type of pattern and fully remove my right adrenal gland and tumor. They put me to sleep and when I woke up my stomach felt like it got punched 100 times but I was happy that it was gone. The surgery took less than 3 hours. They gave me a high dose of hydrocortisone during the surgery and after to make sure I didn’t go into adrenal crisis. I felt worse and wasn’t sure if I was cured but my surgeon assured me that I would feel better in the coming months. I was in the hospital for almost four days due to complications with the catheter. Once I got released, I was excited that I was on my way to healing and recovering.
The recovery process was no joke. Just when I thought my Cushing’s symptoms would be resolved, I realized that I would also be living with adrenal insufficiency until my remaining adrenal gland would produce its own supply of cortisol. So I was on hormone replacement in the mean time. Adrenal insuffiency is no joke. I was tired and sad most of the time. I slept for 10-12 hours a day. But to me it was a blessing to be able to go from having insomnia to the deepest sleep I ever had. I was pretty discouraged that the symptoms were not immediately resolving but In around 4-6 weeks I started to see my collar bones, cheek bones and face started to shrink. It took about 6 months for me to start losing weight and my acne to stop growing. When it came to the psychiatric symptoms, they resolved after I fully recovered which was 18 months. after I recovered I still got on accutane and slowly tapered off antidepressants. I also slowly weaned off the hydrocortisone which I urge a patient in recovery to wean slowly. Other than that things will start falling into place and I was able to take deep breath and exhale.
Today I have transformed into a stronger person. Looking in hindsight, I see that though having Cushing’s was the hardest thing I ever had to go through, it forced me to strip away everything I thought I had and has help me to love myself in ways I never knew how. I’ve become strong enough to deal with the challenges that life has thrown at me so far. I have to say I am lucky to have been an adrenal patient because I have a low chance of recurrence so my heart goes out to patients that may face more challenges. Cushing’s has taught me to be patient with myself. To let go of expectations. As an advocate I want to tell other Cushing’s patients that it’s okay to have bad days. Its okay to feel whatever you’re feeling. It’s okay to say no to people and take care of yourself. Its okay to be ashamed but just remember that you are sick and it is not you at all but the illness dictating your mental health. Most of all, you are not crazy and whatever you are going through is very real. I have been in that position of feeling hopeless. Just remember you still have the power to take care of your health. Turn that pain into power. Love yourself. you have to be your own doctor but you got to keep pushing through for a diagnosis. I truly believe that Cushing’s is more prevalant than we know but we just got to share our story to the world and make sure to be heard by the medical community. I have dedicated a blog and youtube to talk about my journey and to let those who are in the position I once was in that they are not alone. with that I am truly grateful of where my life was and is going now. Thank you so much for reading this.