My Cushing’s Journey
I am not sure exactly when my Cushing’s journey began. It is difficult to pinpoint when the disease took hold of my body as it is the type of disease that creeps up. The early symptoms are so vague and mimic so many other conditions that it is difficult to diagnose. I do know that I transformed into a whole other person who I did not recognize within a few years.
Follow me on my picture time line and you will get a small glimpse of how incredibly devastating this disease called Cushing’s is to those it touches. What you will not see is the physical pain, high blood pressure, kidney stones, memory issues, depression, anxiety, lack of mobility, weakness due to muscle loss, hair loss, loss of period, skin conditions, constant stuggle with identity and the judgement of others that come with Cushing’s Disease.
This is me at 22 years old. Obviously this is long before Cushing’s Disease. I am holding my son on his first birthday. Yes, I had a baby and was still slim enough to wear that outfit and eat cake too! Dieting was the furthest thing from my mind. Weight was never an issue for me. I know, it’s not fair. (Can you believe that little baby is now taller than me? He’s turned out to be a great soccer star!).
This is me in May of 2000. It was my 27th birthday and also my Convocation from McMaster University. I still show no signs of Cushing’s Disease. I had only one chin and my face was a normal shape and colour. I could walk long distances and not feel a thing. Life was pretty good.
This is me in 2003 celebrating my daughter’s second birthday. You can see some early signs of Cushing’s Disease. I am heavier and my face is rounder and people think I am pregnant.
These two pictures are o
f me as a bridesmaid at my sister’s wedding. This was July, 2007. It is very obvious here that I have Cushing’s Disease. By this point my mobility was limited as it hurt to walk. I felt very uncomfortable in my skin, both literally and figuratively. I had many bruises and skin lesions. I had huge striae (red stretch marks) on my stomach and breasts. I no longer had a period. I was suffering from depression and anxiety. My blood pressure was through the roof. I had passed my first couple kidney stones. I felt embarrassed to see old friends and meet new people. I felt like a monster had come and swallowed me whole and had taken over my life. I just wanted to hide away but I kept living and working every day. Life had to continue. I found strength that I did not know I had with the help of family and friends who love me.
I was diagnosed with Cushing’s disease in September of 2007. My first surgery was in November of 2007. This surgery was not successful. My Neurosurgeon told me that I would have to have another surgery but that he wanted to wait to allow some of the swelling to go down. I was devastated. This was not out of fear of another surgery but because I thought that I would never be cured and that I would have to live the rest of my life in physical and emotional pain. I had my second surgery April 2, 2008. This time it worked. I began to lose weight immediately and quite rapidly. My Endocrinologist was concerned at that point that I may be adrenal insufficient. I thankfully never went into adrenal crisis but I was very sick for about two months.
These two pictures were taken today (January 21, 2011). You can see that I am now cured of Cushing’s Disease. Although I will always be a Cushie as this disease has changed me forever. Mostly, the changes are positive. I have learned that I am strong. I beat Cushing’s. I have recovered well and continue to recover. I am still overweight but not obese. My rapid weight loss has left some skin sagging (hate that) on my lower stomach and under my arms. My body may never be like it was before Cushing’s but I am healthy.
This is just a glimpse of my life with Cushing’s Disease. I will write more in time. Understand that this was a very difficult but theraputic thing for me to do. I feel that it is important to tell my story because I was always looking for other people’s stories when I began my journey. I needed to know that I might be okay some day and I know that other people are at that point in their journies. A great source of support and information for me was the amazing Cushing’s Help and Support site founded by Mary O. You can access it at http://www.cushings-help.com/ . Thank-you Mary and all of the other Cushies that share their stories in support of others who struggle with this life altering disease.
