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Jessica’s Story (Cushing’s Syndrome)

Jessica's Story (Cushing's Disease)I was always a physically fit girl in high school and well into my mid 20’s. I danced and played soccer since I could remember. In my teens I was a size 2 and never weighed more than 115 lbs. Diabetes runs in my family so it was not a surprise that I was diagnosed at the age of 18. I learned to live with it and adjusted. When I graduated from high school I began taking classes to become a registered nurse. I went part time completing the courses needed for the program, since I had a son when I was only 14 years old.

During the course I felt tired but that was expected for being a young, single mother, working two jobs, and going to college right? When I actually began the nursing program itself my blood pressure and blood sugars worsened and I began to gain some weight. Doctors diagnosed me with stress, anxiety, and just being a typical stressed out nursing student that was over eating due to stress (although I wasn’t). I was still active, exercising, and eating right but I still kept gaining.

Finally, I finished and graduated with my associate’s in nursing and began work as an ICU nurse. During this time my weight kept increasing. Over a span of 10 years I had gained over 140 lbs. I went from a size 2 to a size 20. My blood pressure and blood sugars were out of control. I had frequent anxiety and panic attacks, and my ankles swelled to the point where my doctor’s thought I had congestive heart failure because I could not see my ankle bones. I experienced several fractures just from stepping wrong or putting to much pressure on one foot, my hair thinned, my face became moon shaped and I got a hump on my back. I also was treated for and diagnosed with major depressive disorder for which I was on medications for three years. My body hurt everywhere, my muscles, my joints, and I had chronic fatigue and body aches to the point where they thought I had fibromyalgia!

I was confused and scared. In the ICU where I worked the nurses I worked with where great but some doctors where judgmental of my weight telling me I should have gastric bypass. I went home in tears and I had at one point had given up. On a fluke, my sister was being tested for what is called Cushing’s disease because she fit the appearance of someone that had it. I mentioned it to one of my physicians and he said, “well I don’t think you have it, but we can test you too.” Sure enough, I came back positive and my sister didn’t. Due to the lack of knowledge of my condition, I was left untreated for a few more years.

I kept gaining and gaining and becoming more depressed. MRI’s were ordered and they never found anything wrong! I had literally given up and wanted to die! I will not lie when I say that I did think about it! I had never been so hopeless! I took a chance and changed my doctor.  After explaining to her what I had been experiencing, she contacted a neurosurgeon that specializes in brain tumors. Sure enough he found it. I had brain surgery to remove it in January of 2007 and and was in remission. I began losing weight and felt better and more alive. After two years though, I noticed the symptoms returning and sure enough, my tumor had returned. I went for a second opinion and had another MRI showing another tumor deeper than originally seen and so I had a second brain surgery in January 2011 at UCLA Ronald Reagan Hospital. Again, I was in remission. Unfortunately, I just found out my tumor is returning but it’s to small to find on an MRI! So my only options right now are medications with side effects, a trial that may only be 25% effective, or radiation. If all is unsuccessful, than a bilateral adrenalectomy.

I was in shock when I was told it was returning that I didn’t cry for a day. I felt depressed, sad, hurt, angry, hopeless, and alone. I still have my moments, but I have chosen to keep fighting because I have never been one to given up. I am learning to let go of fear and trust God for my outcome. I just hope I can help shed light on Cushing’s disease and help someone whom may be experiencing what I have. Sadly, to start a diagnosis, it takes only one blood test, so don’t be afraid to ask if you experience any of the symptoms I have had to get it done. Keep fighting girls for whatever condition you have, because someone else out there has it too.

Jessica
California
Submitted 02/08/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

2 comments

  1. Jessica, a big hug and an ongoing infusion of strength and calm to you not only for the tremendous, often poorly understood challenge that Cushing’s represents (I’ve done some reading about it in the past – it challenges so MANY body functions, doesn’t it?), but for the brain surgeries you have needed to combat your disease…not to mention the possible bilateral adrenalectomy.

    People often don’t realize what terrible havoc Cushing’s wreaks on the emotions – what deep depression it often inflicts, coupled with that anxiety you know only too well. May you find all the support and medical help you need at this time, and may it all lead you closer to a resolution of all these Cushing’s related symptoms. Lots of hugs!

  2. Jessica, from the bottom of my heart, I wish that everything comes out okay post surgery. You ve been thru so much, and can tell you’re so strong and have such courage to keep living. I am sure that you are a symbol of inspiration for not just your child bit also to everyone around you. Your story is so inspiring, it makes me realize the true strength of human spirit. Blessings to you, and stay positive and hopeful. Thank you for sharing your story . Love!

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