And It's About Time There Was Some Support For Cushing's!
I was diagnosed at age 29 with Cushing's Syndrome. In 2004 I started rapidly gaining weight regardless of my healthy lifestyle and constant excercise. My hair thinned, my nails were brittle, and I took on a very masculine shape. I also would catch every sick bug going around. I would get extremely sick with the slightest cold.
In 2006 it was discovered I had high blood pressure during a routine doctor appointment. I ignored the doctors advice to have it further considered. Six months went by before I scheduled an appointment to address my blood pressure.
In January 2007 I had an episode at work where I began vomitting and having diarreah while sweating and my vision was blurry.
In March of 2007 I was hospitalized with what turned out to be Pancreatitis. The hospital wanted to remove my gall bladder thinking it was the culprit. There wasn't enough evidence to operate. I was released five days later.
In April of 2007 I was referred to a gastroenterologist surgeon. Through extensive scans and x-rays it was discovered that I had an adrenal adenoma on my right side. The adenoma was producing hormones in excess of my adrenal gland. This in addition to high blood pressure could have resulted in a stroke if surgery had been performed on my gall bladder. I definitely realized the seriousness of my condition. Immediately an appointment was made for me to see an endocrinologist. My first visit was unlike any doctor visit I had ever experienced. This doctor was thorough to the point that I was was second guessing if he was in his right mind. He poked me, pinched me (hard). pushed on me, flickered the lights, he had me stand, sit, lay down, stand back up. I felt like a circus act. The doctor was making notes the entire hour and forty five minute visit. He sent me downstairs to the lab for blood work. I was instructed to complete a 24 hour urine test. In the meantime I began researching everything I could find about adrenal glands. That is when I came across Cushing's Syndrome. The symptons were everything I was experiencing. I emailed my doctor immediately. The next day I discovered an email from my doctor suggesting I had Cushing's. It felt good to know we were on the same page and that we knew what to treat. My condition finally had a name. This was just the beginning.
I continued to go in for blood work, scans, ultra sounds, and x-rays. I felt like the cross between a pin cushion and a lab rat. The weight kept packing on. I had insomnia and felt like my mind was spinning out of control. My friends and family felt like I treated them indifferent. I was experiencing hot flashes. I was also becoming depressed from drinking nightly to deal with the insomnia and madness going on in my head.
Then on May 9, 2007 I met with the surgeon to schedule my surgery to remove the adenoma and right adrenal gland. The surgery took place May 23, 2007. The surgery lasted a little over 4 hours. I had four incisions about 1 to 1 1/2 inches each. I woke up in the recovery room with a lot of pain. My lower right abdomen felt like it was on fire inside. I was relieved with medication and taken to my room. The next morning I started taking Prednisone. My dosage was 6mg in the morning and 5mg in the afternoon. I went home the next evening. I was able to get around in my house but required a scheduled dose of pain medication. I started back to work 5 days later. I remained very sore and had to be careful to move slowly and not lift anything. I felt I was on the road to recovery.
On June 6, 2007 I was at work when I began to sweat profusely and my ears started ringing. It hit me with no prior symptoms. I began to vomit and have diarreah at the same time. I felt like I was dying. I was lathargic to the point I pulled my shirt up and lay on the bathroom floor tiles to cool off. It was almost an hour before I was able to get up and get help. My boss drove me to the ER. My husband met me there. I was left in the waiting room for over an hour with my symptoms continuing. We left and went home. I had experienced this in January but not as severe, but I thought it would pass. That night my husband drove me to another ER. I was diagnosed with a tummy flu and sent home. I got worse through the night. I began vomitting blood and had blood in my stool. My husband took me to yet another ER. I was admitted to the hospital with post surgey colitis. The antibiotic I was given for surgery had wiped out my good bacteria in my colon allowing colitis to progress.
This happens but is as rare as Cushing's. It was more painful than pancreatitis. Both are worse than child delivery by far. I was treated with antibiotics and had to hold down liquid before going home on June 9th. I returned to the ER on June 14th with the same symptoms and I had not been able to keep down liquids for three days causing severe dehydration. I was again admitted. The digestive disease specialtists treated me with heavy antibiotics, again, and a morphine drip. I had two scopes to determine the severity of the colitis. It was diagnosed as non specific colitis. That means it could go away or it could flare up again without any known reason. I was released on June 18th.
I am still going in for regular check ups for the colitis and for my Cushing's recovery. I did not realize the recovery of Cushing's is another battle. I have had terrible pain in my joints and muscles. I am always exhausted. My skin and hair remain thin and brittle. I have experienced vertigo issues to the point of not being able to walk. I have tremors. I can't seem to control my emotions. I experience panic attacks triggered by daily activities like driving or hearing sirens. Any change in environment causes nervousness. I will cry for no known reason. My body will react differently than my mind. It is a daily struggle to compose myself. I am down to 2mg of Predinsone in the morning. I am on an anti anxiety medication twice a day. My body is producing 1.25mm if cortisol. My goal is 15mm. I started walking every day. This has been therapeutic as well as great excersise. I usually have one day each weekend that I sleep all day and night.
Although my recovery is not over I realize how blessed I am to have been diagnosed early enough to survive and continue a fullfilling life. My doctors have been amazing. They made the difference. They are my angels. Believe in your instincts and listen to your body. Self diagnosis and educating yourself is very important in your treatment. Know what to expect and what questions to ask. You are the key player in this game!
March 21, 2008 I went in for a check up by my endocrinologist. My cortisol level is now 6mcg. That is an increase of 4.1mcg since December. Once my body produces 10mcg I will be taken off of Prednisone.
My doctor said something so true. He told me the doctor patient relationship is similar to the teacher student relationship. Some patients do their homework and some do not. This plays a big part in your treatment and recovery.
I have continued to educate myself and those in my life. I have wonderful support from my friends and family. But there is no way for them to understand what I have been through and continue to go through. The most important part my family and friends have played is providing a real part of myself that I had lost going through the mental trauma of Cushing's Disease.
There was a time I didn't want to shower because I didn't want to acknowledge what my body had become. It physically represented illness. I hated picking out clothing. I avoided people that knew what I was like before Cushing's Disease. This sounds vain but it isn't. I had always felt as one-mind, body, and spirit.
While going through Cushing's, I had separated and become trapped inside a shell that wasn't me. Can you imagine wearing another's body and being expected to care for that body while being unfamiliar with it? That was my experience. To be touched in an affectionate way magnified this feeling. I cringed when touched. I was unconnected with myself therefore, I wasn't able to connect with others. It is important to express your feelings and emotions, good and bad. My husband couldn't relate or comprehend what I was trying to communicate in words but he at least he felt the emotion and that was enough. Cushing's Disease is mentally debilitating. You need a network of people who really know you and your heart to keep your spirit alive. Those people in my life treated me as they always had in the past and encouraged me to continue the life that defined the true me.
Thank you for allowing me share my story.
