I have an invisible illness. You look at me, and you see a fat, sweaty, red-faced girl who needs to sit down way too often. People think I’m lazy, that I eat too much, that I did this to myself. Even my mom, who I love with all my heart, constantly pushes me to “get outside.”  Don’t get me wrong, I love fresh air on a cool day. I love swimming, and going to concerts. But I have an illness that holds me back. I’ve spent the last 10 years being told that I just need to lose weight and I’ll feel better. Unfortunately, the whole time I’ve had this stupid tumor growing in my brain making ..read more

So, I went to the endocrinologist today, and got somewhere idea of what’s going to happen over the next few weeks.  1. I have to have a super weird, scary test. It’s called a Bilateral Inferior Petrosal Sinus Sampling, and essentially they are going to run a catheter through an artery in my neck and weave it up to my pituitary gland. Then they take a blood sample from each side of my pituitary gland (my tumor is on the right) to confirm that it is actually the tumor that is causing my high cortisol levels.  2. I most likely have to travel out of state for surgery. I live in Chicago w ..read more

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So, I was misdiagnosed with PCOS prior to finding my tumor. They told me that birth control would help some, and I’m horrible at taking the pill and Nuvaring interacted with my other medications. Despite the fact that I am in constant pain everywhere and I am in the process of finding out where I go next with my brain tumor, I decided to go through with the IUD insertion I scheduled about a month ago. I feel like a demon is scratching at my insides, but no babies for 5 years, and fewer periods sounds good.  Also, I finally got to talk to my doctor and the specialist she recommended. I see ..read more

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I don’t know how long I’ve had Cushing’s or my pituitary tumor, but I suspect it started somewhere around 2009, my senior year of high school. If I’m right about that it all started with muscle weakness. I’ve always been a little overweight, so I can’t track it based on that, but in late 2009 my kneecaps started dislocating because of weakness in my hips and quads. I spent my entire senior year in braces and on pain meds, and I in June and November I had major knee surgeries. From September of 2009 when I first hurt my knee to March of 2011, I gained 95 pounds. I blamed it on being less active ..read more

Here’s a major simplification of what’s happening in my stupid body. Cushing’s is a disease caused by an excess of the hormone cortisol within the body. It can occur naturally, often caused by a pituitary tumor (as it is in my case), or it can occur when a person takes too many corticosteroids, like prednisone.  When there is too much cortisol in your body, things basically go batshit insane.  Mentally, you can become incredibly anxious, depressed, and experience intense mood swings. Often Cushing’s is misdiagnosed as anxiety and/or bipolar disorder. Externally, you sweat like a beas ..read more

I have an invisible illness. You look at me, and you see a fat, sweaty, red-faced girl who needs to sit down way too often. People think I’m lazy, that I eat too much, that I did this to myself. Even my mom, who I love with all my heart, constantly pushes me to “get outside.”  Don’t get me wrong, I love fresh air on a cool day. I love swimming, and going to concerts. But I have an illness that holds me back. I’ve spent the last 10 years being told that I just need to lose weight and I’ll feel better. Unfortunately, the whole time I’ve had this stupid tumor growing in my brain making ..read more

So, I went to the endocrinologist today, and got somewhere idea of what’s going to happen over the next few weeks.  1. I have to have a super weird, scary test. It’s called a Bilateral Inferior Petrosal Sinus Sampling, and essentially they are going to run a catheter through an artery in my neck and weave it up to my pituitary gland. Then they take a blood sample from each side of my pituitary gland (my tumor is on the right) to confirm that it is actually the tumor that is causing my high cortisol levels.  2. I most likely have to travel out of state for surgery. I live in Chicago w ..read more

..read more