Living with Cushing's Syndrome

By Maria, United States, January 7, 2015

Hello, My name is Maria, I am 32 years old , I have Cushing's Syndrome and this is my story.

I am from Bogota, Colombia, yep! The land of good coffee! But I have made of Portland, Oregon, my home.

I don’t even know where to start because I am not quite sure when this whole ordeal started. I was a ballerina in high school, it wasn't easy, you had to take really good care of your body as you can imagine, limit your calorie intake and rehearse like crazy, I was always that good student with great grades but no friends. I think this is were everything started, the stumbling self esteem, the screams of the teacher trying to reap perfection out of me at all times and the competition for whose prettiest and just better. how sad. I was only 13.

I studied biology at the Xavier University in Colombia, it was pretty much the same story than in high school, you study, you dress up for the day like is your own fashion show with a hint of finding your own style or you will blend in mediocrity and if you do, you don't click and you just don't belong, that's the society in which I grew up in. I was very lucky to have the chance to choose between some electives classes or an internship abroad that I fought for by tooth and nail, it's not easy for a Colombian to come to the US and find sponsorship but I did through The Oregon Zoo, working with the polar bears and the african elephants, it was the best time of my life because it led me to meet my husband Chris at school. By this time I pretty much remember buying clothes size 0 and having no issues at maintaining my weight.

I got married and as part of our hobbies we did everything outdoors, and especially for me everything that required a helmet; runs, triathlons and lots of swimming kept me in shape throughout my early married years; and then I started to gain weight like it was going out of style. I had no clue as to why; I was not eating more and I was not exercising less. I was also very good at keeping accountable of my calorie intake and output throughout activity so I really had no clue, where the equation was unbalanced but all my daily and normal life went to the toilet because one day suddenly I was overweight, well really, morbidly obese. You can ask me how long was it between being a size 0 and becoming officially a morbidly obese person and my answer will be I am not quite sure, I just remember an appointment with the Doctor, and she telling me that I needed to lose some weight, about 20 pounds and to better my posture cause I was getting a hump ( weird!!!!) and that was it, the rest is history, its like if somebody had just inflated me like a balloon.

My support system other than my husband was terrible, people close to me, family and friends, would comment to me how "much bigger" I was getting, to see if I was just depressed or to get to know what was going on, other made fun of me of course, they said the life in the US was becoming very prominent in my body and all kind of names I heard at the grocery store and on the street. I can only imagine if that is what they said, what is the amount of stuff that they don't have the guts to say or are just thinking it.

I would crying lonely in dressing rooms because nothing fit, I started to feel so bad with my acne, my figure, all my pretty clothes that seems like would fit just one of my legs, I started to cry on a daily basis, to hide from people, I became a home body, in sweats all the time, pajamas, no make up, no interest in fixing something that I considered forever broken. My husband was the only one that stood by my side, size 0, 4, 10 or size 18 he was always with me! I truly believe that without him I would have given up, my family was so ashamed of me, of my "unhealthy habits" of my weight, of my appearance, you see in Colombia you have to belong to a certain prototype of beauty or you are a cast out, there is no room for the unusual, it does not matter the reason behind it, you are ugly and you don't count, oh yeah and we make fun of you and kick you out. It's one of those cultures where if you're head is buried in the mud I will stomp on you even further so I just don't have to see you fighting to get out and exist. That's how I was treated by my family and friends. I tried to take my own life many times, but when is not the time of God for us, it just does not work, and that was the case.

I hid from them for many years, at least all those where I was obese, I would visit my immediate family in Colombia in secret of all others, and as if I was a celebrity I kept every time a low profile full of fear of seeing somebody that would recognize me and would find out all what was wrong with me, and go ahhhhh, uuuhhhh, wow, or even better: are you pregnant? because believe me I got all of those plenty of times. Sometimes my way of dealing with these comments, looks or judgements was just a drink and that quickly became a coping mechanism, very depressing.

At this point after failing to lose the weight with diet and exercise, I had some lab tests done and they found I had a fatty liver and that I qualified for gastric bypass. I had the surgery done and oops less than a month after that, I got pregnant! They told me to be careful and I was, but somehow my baby boy Eli, who is now 21 months, was a little human in our lives just a month post-surgery! And the weight? Well, it never had a chance to go away. I actually lost some weight during pregnancy. I was seen by maternal fetal medicine, and the baby grew just fine, thank God! It's sad that in our medical system, Cushing's patients are not filtered before being altered by pointless surgeries like a bypass when obviously if not the cause it was not going to be a solution for my problem.

As soon as I had baby Eli, I got down to 180 pounds (from 240), but the gastric bypass failed, as I gained it all back and more in a year. I had horrible acne (saw a dermatologist), they found I have osteoporosis, my vitamin D and calcium were super low no matter what, my periods began to be very irregular, and I had nose bleeds. I saw an endocrinologist and an OBGYN. I had tons of hair everywhere, especially where you don’t want to have it, like a “mustache”, horrible bruises, and stretch marks. But hey, I just had a baby so everything must be normal right?….. Then I got bursitis in both hips, one after the other, and broke my foot doing nothing. My primary care sent me to a rheumatologist who found I had carpal tunnel and the strength of a 70 year old lady. I started walking with a cane at age 31!!!!! The podiatrist sent me to an orthopedist, which led me to physical therapy. By then, I was complaining of pain and feeling weird, which I described as “going 120 miles per hour in my brain” and was just plain depressed. I cannot tell you how much anxiety I was carrying with me everyday, I was becoming paranoid. I was sent to a psychiatrist, because apparently it was all or at least partially in my head according to my primary care physician!!!!! I saw uncountable specialists and no one looked at the big picture. It’s like everybody was touching and describing some part of the elephant but nobody knew IT WAS AN ELEPHANT CALLED CUSHING’S!!!!

Then one day my husband was with me at my physical therapy appointment, and he pointed out to her my hump, that presumably it was because of my bad posture, a “hump” had appeared in between my shoulders, my therapist said, “Do you know about Cushing’s? I had a friend with it, and her symptoms are so similar to yours. Why don’t you ask your endocrinologist to test you for it?” So I did. I considered this therapist my angel, my life savior, the average time to get diagnosed with Cushing's is about 8 years, is a terrible statistic isn't it? well, I think she saved me from many more years of suffering and I owe her big time.

Just to let you know about Cushing’s syndrome, so you're not lost in medical jargan, this is an endocrine or hormonal disorder. It occurs when the adrenal glands release too much of the hormone cortisol into the body for long periods of time. Cortisol is essential to many of the body’s cardiovascular and metabolic functions. But perhaps its most important job is to help the body respond to stress.

Normally the adrenal gland releases the exact amount necessary to meet our daily needs. However, sometimes the process goes wrong and an excess of cortisol is produced. The malfunction in my case was caused by a tumor of the adrenal gland (located above the kidney). It is a classified as a very rare disease, it is estimated that 1, only 1 in 1 million is affected each year. It is most common in adults, between the ages of 20 and 50 years old, although it can occur at any age. it affects women five times more frequently than men.
There is not much research being done today on treatments, but If left untreated, Cushing’s syndrome can be fatal.

At first my endocrinologist which was seeing me for my hypothyroidism said, “No, no, no. That is very rare, veeeeeeery rare. You don’t have that, because one, you don’t have high blood pressure and two, you don’t have diabetes.” But, I had done my homework and read about Cushing’s. I pretty much begged to be tested, so she agreed to test me. Since when does one have to beg to get quality service especially medical? Anyway the did many, and when I say many is an understatement, many tests: The dexamethasone overnight test is a test where they measure your amount of cortisol in the blood after you take a substance that tends to supress it, the result was so high that she, my endocrinologist asked me if I actually had taken the pill???!!!!!! the substance! Next came the 24 hour urine, saliva test, and another urine test, all of which were positive for Cushing’s. Then came an ACTH and cortisol in blood and everything indicated Cushing’s. My cortisol was sooooo high! She finally sent me to have a CT of my adrenal glands. The results showed a mass on my right adrenal gland.

At this point, I don’t know how to explain to somebody the relief I felt knowing that I had a mass. It is definitely very strange how you can be relieved with the news of a tumor, but for me it meant 1 illness with 15 symptoms and not 15 illnesses. It was like finally a true answer; palpable, physical and real!!!! And best of all FIXABLE!!! I felt like finally screaming and telling the world: I was NOT making it up!

I had a successful surgery in April 2014. They lacerated my liver a little, and my wound got infected, but in general terms it was OK. I was told that everything from then on, was a piece of cake and I would get better. How wrong and what a lie!!!! They forgot to give me steroids after my surgery, so the first day was heaven and the second day was awful. They figured out that I needed hormone replacement and gave me prednisone. Think about a body used to 50 popsicles a day and then suddenly nothing, believe my body was in shock, and I felt like dying all over again, wasn't I supposed to be feeling better? Given the history of mistakes, disbelief and the fact that I was this endocrinologist’s first Cushing’s patient, I changed endocrinologists. I was being treated by the best Cushing’s endocrinologist in the state of Oregon. Thank God! She changed the tapering plan, what it means is given the body the same amount of popsicles but fake ones(steroids), so the body is calm and quiet and then very slowly taking away some of them to get the body back to the normal amount of popsicles, I mean cortisol!!! hehehehe. She explained everything to me, made me aware that the fight is not over at all and created a plan and a team to go through this. I couldn’t be happier with her plan, she knew what she was talking about, she also told my husband what HE was going to endure, what was ahead of US, she made it a team effort and for the very first time, I was not alone, it made sense! Unfortunately I couldn't see her anymore due to insurance issues but I am seeing then anooooother endo with the hope of finally getting a break and good medical treatment.

The fist couple of months were such a struggle. I was so fatigued, I was not losing any weight, rather I was gaining more, which was just so depressing, I was told the reason was that the steroids they were give to me where higher than what the tumor was giving my body. It made me extremely hungry and I despite the fact that I was trying to eat very healthy, it is was so disheartening to see the scale go up even after surgery. I was very weak, had terrible insomnia, and I felt like sleeping all day, so basically I was like a zombie, but remember I had a baby just learning to walk, so resting during the day was a joke! I was in so much pain everywhere, and my mental status was all over the place.

Every single time they adjusted my dosage of steroids , I go through a process of withdrawals, they are extremely painful, it reverse to adrenal insufficiency and its kind of like a chemotherapy, you feel like dying, you throw up, you are so nauseous, you can't get out of bed, the pain can not be controlled even with very strong narcotics but opposite to people with other diseases or illnesses where they "look" sick, because I still look "obese", society, family and friends still give you a cold shoulder of unspoken blame and the feel of no compassion for you, at least that has been my case.

I had a job which I had to reduce to a minimum because of this disease, so I feel sometimes useless because I can't provide, as a mom I can't carry my baby for very long or chase him around, so I feel like a terrible mom, sometimes next to my husband I still feel ashamed that he is with me and I look so awful, my family does not understand that on my sick days I really, really want to live life to the fullest but my body does not cooperate at all, its not just that I am a lazy person like they look at me like, just until recently I decided to change that image that I had of myself, I realized that nobody is going to change it , so I might as well love myself the way I am and then maybe others will accept me the way I am, honestly I am so glad I live in the nonjudgmental city where I live and not where I was born because there, I am more than sure than after being outcasted I would be dead.

In my recent trips to Colombia I saw how the image of the woman has been materialized into that! just that! an image!, one that has to conform to the current parameters that the society impose, and the girls are so happy and content to work to achieve that with all their heart and is like they don't see that they are just being mentally manipulated to become just a replica of a being with no moral value or at least one that does not seek for it first, its not about what you know, your inside, your thoughts, your achievements, what inspires you, what really counts! no! is about the looks,the figure, the outside, how others perceive you, the shapes, the money to be pretentious enough, what you have and where you belong, and IF you belong, that is the sad situation that I was put to confront with a disease that is just about how much are you going to judge me for something it looks like I did, but I am totally innocent????

The result has never being good at all, then I found a Cushing's website where I saw the amazing stories of other patients with Cushing's that have made it alive and happy! I was sooo motivated, especially by the pictures, They lost the weight at some point, they were able to reverse some of the symptoms and consequences of the disease and I just got hope again. I started to swim, like a very slow turtle, but I was there at 4 am in the pool, every morning, including weekends, why so early? well, again, I did not want to be judged in the so shallow gym environment so 4 am provides me with the less amount of people to deal with! just like a vampire! hehehehe… after swimming for a couple of months I started to see results, I am down to 184 lbs, don't get me wrong, every day is a challenge, every day brings its own fight, but after more months, the more strength I am gaining, I started working out with a personal trainer and the results kept showing. I was so excited and happy , I had goals again but this time not because of how I look, it does not matter to me anymore, yes I want to lose weight because its the healthy thing to do, and I want to live longer for my family, but oh my if this whole process has changed me. I am believing in a light at the end of the tunnel, I don't believe anymore in images, profiles, scales, and sizes, beauty is in the eye of the beholder, beauty comes from within inside, beauty comes in all shapes and sizes and that is what I am going to be making my life about, helping others to not be blind anymore, to find their beauty in their abilities and spirits without spell checking in the mirror!!!! Recently I made a video trying to really briefly tell my story and the outpour of support was immense, that is inspiring and encourages me to keep going, help others, inspire others, even if it is only one person to understand where truly beauty is and how to measure it! in happiness!

Yes I wake up every day and I am thankful for all I can do, when I feel like walking on needles, I have the picture of a rhino running on a treadmill looking at a picture of a unicorn that says "never give up on your dreams" and it gets me going!!!! don't get me wrong I still have osteoporosis, obesity, blurry vision, acne, water retention, horrible striae, cognitive difficulties, especially when trying to concentrate my little attention span is very short, same with my memory, I still have severe outbursts of emotional instabilities, insomnia, and terrible fatigue, but I believe also that I am a warrior, I know I can do it. I have been through horrible things in life and I made it alive! I am looking for support in creating a better world that promotes healthy self esteem and values for women. I want to create awareness of this horrible syndrome but most of all I want to give hope and a hug to all those who believe like I did that we are doomed because society outcast us as soon as we don't fit in their standards, and no! well, I am fighting that, and If I can get some support or even just share my story and help just one other person, then all of this is worth it! It’s tough, this illness is ugly, unfair, and just plain sad, but I want you to know that we can do it, and that the suffering, pain and bad life experiences of my life will not be in vane, It can be rainy but I choose to go and have fun, lets make lemonade out of lemons, thank you for reading all this and just please remember that we are stronger as a unity that believes simply in what is right, the value of women based on her intellect and her inner beauty, the outside? will just show up once you fill the glass with joy. Thanks again.

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