I finally am ready to write my story. I so appreciate the Cushing’s Newsletter. It really was a blessing for me to read when I was first diagnosed with Cushing’s in November of 2008.
I always have been blessed with good health my whole life. Being the youngest of seven children, five boys and two girls , I grew up loving the outdoors and sports especially golf. I started golf when I was ten and have played ever since. My sister was healthy until the age of five when my parents noticed she was walking with a limp. She was diagnosed with Muscular Dystrophy. Over the years, she went from wearing braces on her legs to eventually in the year 2005, she ended up in a wheelchair. So when I was diagnosed with Cushing’s in the year 2008, I put things in perspective because I could still walk and carry on with my life. I never complained because I didn’t have it as bad as my sister.
Being athletic all my life and staying thin was very important to me. In the year 2003, I weighed a normal weight and felt fine. In 2002, I got a job with Blue Cross and Blue Shield working as an outside consultant for Medical Offices. Plus in the year 2004, I started a side business where I customized trips to Italy where I had lived. I was traveling back and forth to Italy during my vacation time. I didn’t think anything of it, working all day and then getting up at 2 am to email my Italian Tour Operators. Followed by getting up again at 6 am to start my other job. While, I didn’t even realize how high my cortisol levels were at that time. I thought, cool, I don’t need much sleep. This is great! I did see a Nephrologist beginning in the year 2001 for my high blood pressure which was never normal even with meds. I thought it was hereditary since my Father had high blood pressure.
As the years went on , I kept gaining more weight and I noticed how red my face always seemed. I thought it was all the good food in Italy. My stomach never felt right and I was always bloated. My curly hair was falling out and I started to look pregnant. In fact, I was at a wedding and this woman asked me if I was pregnant. I kept going to the Nephrologist and all he kept asking me what I was eating. He never even thought to test my cortisol levels etc. Well, I could tell my personality was changing too. I didn’t want to socialize like I did before. I always was patient and calm and loving . Even yoga didn’t calm me down. I just love yoga and it is a great stress reliever but I was so wired, it didn’t help me. I had no clue what was going on with my body. I thought because I was over 40. Well, I was so blessed to work for an insurance company. One day, I had assisted a female Chiropractor with her insurance issues and I said, “ Doctor , I am not feeling well. I am always bloated and I can’t enjoy any of my foods that I eat. “ She said, “Maybe your are allergic to certain foods. Let me do a saliva test on you.” Sure enough , my cortisol levels were very, very high. She pointed that out to me.
So I took those results to my Nephrologist at Northwestern in Chicago and he decided to do the 24 hr urine test along with other tests. He saw how high my levels were but still didn’t do anything about it. Well, thank God for my friend’s Father who was retired from the department and he said, “ You get her in for an MRI immediately.” So November of 2008, I was referred to an Endocronologist at Northwestern. She said let’s do the MRI. I got this email from her which stated, “ You have a tumor on your pituitary gland I think you have Cushing’s. “ I thought to myself, what the heck is Cushing’s? She really should have called me into her office to explain Cushing’s. She then said for me to visit Dr. Findling in Milwaukee because he specializes in Cushing’s. I was so pleased with Dr. Findling. He was a life saver. He had me do the test where they inject dyed into your groin. My levels of cortisol were sky high. There he sent me to Dr. Ciric, a neurosurgeon out of Evanston Hospital. He was so informative and showed my Mom and I the tumor and described the surgery. I did go for a second opinion but I didn’t feel comfortable with the female surgeon. Dr. Ciric was the best. Being in the healthcare field really was to my benefit. I asked many other offices in the area and they all knew who Dr. Ciric was and they raved about him. That eased my mind tremendously. I then schedule to have my surgery June 2009 because I had trips planned prior to June.
I read many of the Cushing’s Newsletters prior to my surgery. They were so informative and I was really blessed to have found out about the organization. Karen Campbell was so wonderful when I contacted the organization. She guided me on what my next steps should be. I even helped others such as a friend’s sister who also had a tumor and had surgery a month after mine with Dr. Ciric. Unfortunately, he retired this year. He will be missed by many because he is one in a million!
I had one Endocrinologist say, “You are going to feel terrible for a year after your surgery. “ I thought to myself. No I am not. Well, he was right. The surgery was tough but it was the post op that was a challenge. I went home after 4 days in the hospital. Taking the hydrocortisone really made me feel sick. I was in pain all the time. I literally had to take 3 baths a day and put China Gel, which is like Ben Gay, all over my body. My family, especially my Mom and my boyfriend, Anthony, helped me tremendously with the recovery. And most of all, my 2 Shitzu’s, Bogey and Bunker, were the best therapy ever! Animals just bring so much love to our lives especially when we are sick. I returned to work 3 weeks after the surgery. My boss let me work from home which saved me. I was on hydrocortisone for about 18 months . It is important to slowly taper the drug. It wasn’t until I was in Italy that I was able to free myself from hydrocortisone. It felt great.
I was never depressed. These are the things that can help one recover after surgery. The first is to stay positive because there is a light at the end of the tunnel. Second, I payed a personal trainer to work with me in the pool and continued yoga even if I layed down and listened to the music. Thirdly, try to at least do some light walking. I wasn’t able to golf that summer of 2008 or do spin class, but I continued to do some type of exercise. Lastly, be patient, it takes a good two years to fully recover. I am now back traveling, golfing, walking, spinning, practicing yoga and enjoying my life. The best part of my recovery is when everyone compliments me and says, “ Wow, you look great! You look younger and full of life again. How did you lose that weight? Your face looks so beautiful. What are your secrets.. “ Little do they know that I just went through a very difficult recovery from Cushing’s. I now spread the word to all the Doctors offices I visit so they can know what to look for in their patients.
I also attended the Education Day in February 2010. The presentations were fantastic and it was nice to talk to others about their experience with Cushing’s. It was really important to hear their stories. Everyone is different in how their body recovers from surgery. I was just grateful that I was put in the right hands.
It seems like a dream now after two years have passed by since my surgery . Cushing’s made me a stronger person. When I exercise I tell myself what a gift to have my health back. Now, my gift to others is sharing my story so maybe I can make a difference in someone’s life that might be suffering from this horrible disease. The best part of my recovery beside all the fabulous compliments is the fact my golf game is better than ever!!! Believe me, there is a pot of health and love at the end of your Cushing’s experience! So believe in yourself that you can overcome this horrible disease, I sure did!!!
Newsletter: Summer, 2011