Danielle's Story: Living With Cushing’s Disease

Danielle's Story: Living With Cushing’s Disease

I was a healthy, active and happy child and teenager. I suffered from migraine headaches, inherited from both sides of my family, but enjoyed sports and played for my University’s Varsity Soccer Team. 

During my last year of University, my period just stopped. An endocrinologist diagnosed me with PCOS (polycystic ovary syndrome) and referred me to an OBGYN who tried hormone replacement to kick start my period. It didn’t work, and over the next two years, I developed more symptoms, including: rapid weight gain (despite working out), breast lactation, severe acne and a bright red face, facial hair, wounds that didn’t heal, temperature issues, itchy skin, cognitive/mental problems (slight OCD/anxiety), unexplained bruising, lower body muscle atrophy, worsening migraines, kidney stones and insomnia. 
 
I could barely get 3 hours of sleep per night and woke up at 2 am. My face blew up like a balloon, to the point where people who I’ve known for years could not recognize me. Even my own parents would comment on how different I looked. I would look in the mirror and cry because the person staring back was not me. I think this is when depression set in. I thought maybe these changes were part of aging, but thank God I did not give up. For many of us who suffer from Cushing’s, you just know something is wrong. You really learn to know your own body.
 
At a follow-up with my endocrinologist, he wrote me off as “stressed and depressed.” He suggested anti-depressants or “talking to someone.” He blamed the weight gain on being inactive. The only positive result was a referral to a dermatologist for acne and facial hair. 
 
Eventually, I isolated myself. I went to work and would be around my immediate family, but didn’t socialize much. I was embarrassed of how I looked and what people were thinking. I still had no diagnosis, despite visiting numerous doctors and specialists. Some agreed that something was wrong, but didn’t know what. 
 
At the end of my teaching year, my Mom sent a text: “Hi dear, I don’t want you to get upset but when you have a second look at this link.” It was a Google search for Cushing’s Disease. I had never heard of Cushing’s. I read the symptoms word for word, and aside from diabetes, I had EVERY SINGLE ONE. I called my Mom and cried. I just knew I had Cushing’s.
 
I had an appointment with my urologist about kidney stones and mentioned Cushing’s. He had heard of it but said it was so rare that the chances I had it were slim to none. I was persistent, so he ordered a 24-hour urine test and told me to follow up with the endocrinologist.
 
My urine cortisol tests came back 5 times the normal amount, but my endocrinologist said it was too early to diagnose Cushing’s and additional tests were needed. He reiterated the slim likelihood of Cushing’s. I asked about an MRI but was told I was “jumping the gun.” 
 
I was NOT accepting this. I was very upset and started researching Cushing’s. Since my cortisol levels were off the chart, I knew I was closer to an answer. My Dad is a former NHL hockey player, and he called a doctor he used to see who scheduled an MRI. Because of the health care system in Canada, I might have waited months otherwise.
 
The MRI showed a pituitary macroadenoma. I had never been so happy. Many of you will understand that as bizarre as that sounds, I was so relieved to finally have an explanation as to why I felt and looked the way I did for almost 3 years.
 
The next month was a whirlwind. A family friend connected me with a top brain surgeon. He and his partner both personally emailed me and ordered more tests. In the meantime, I was still teaching and managing symptoms, including gaining 25 pounds in a month. 
 
I had transsphenoidal endoscopic surgery on August 6, 2015. Words cannot describe how amazing my team of doctors at the Toronto Western Hospital have been and continue to be. They saved my life. 
 
Initially, the anticipated post-surgery drop in cortisol didn’t happen. Instead, my numbers skyrocketed. An emergency CT scan was performed to look for other tumors in my body. We were devastated by the prospect of ectopic tumors. Thankfully, the CT revealed no tumors. 
 
Eventually, my blood cortisol levels normalized and my surgery was deemed a success. The CT was actually a blessing in disguise, as it showed a blood clot on the lung that was immediately treated.
 
The first month of recovery was horrible. This was the hardest thing I’ve ever experienced. Because of the terrible withdrawal in weaning my body off the medication, I lived with my parents for a while. My Mom was by my side 24/7. I barely left the house except for a short walk or to run an errand. Some days during the weaning process, every task was a chore. My body ached, my head pounded and my mind did crazy things.
 
I began to suffer from anxiety and panic attacks. My memory was foggy and I was forgetful. I was scared, upset, frustrated, and I felt like I was starting to fall apart. I eventually met with a therapist, who was very helpful. You can talk to family and friends, but professionals help in a different way. I now realize that having Cushing’s was not my fault. I could not prevent it. It was God’s way. Accepting this allowed me to let go of self-guilt. Things slowly but surely improved. I worked hard to stay positive and to become the person I wanted to be again.
 
I have learned that Cushing’s doesn’t happen overnight, so we will not get better overnight. My pathology report revealed that my tumor had likely been there and growing for 5-7 years. 
 
Doctors, patients and specialists continuously say that patience is key for recovery. At almost 9-months post-op, I can 100% attest to this. There are days you want to give up, and there are days you just want to stay in bed and cry. My doctor and therapists have told me it’s OK to have bad days. They remind me I have already gone through the hardest part.
 
Danielle, May 2015 and 2016Today, I still take Cortef daily and wear a medical alert bracelet to show I am steroid dependent in case of emergency. I alter my medications when I feel ill or I am coming down with a cold, but overall I feel good. I returned to work full-time. Staying busy has been a huge part of the mental recovery. I am down from 165 to 125 pounds, sleeping around 8 hours a night, my skin is acne-free, my mind is clearer, I am exercising and my period has returned! 
 
Cushing’s disease took over my life and robbed me of who I was. Not only did it affect me mentally, physically, and emotionally, but it also affected my family. For me, one of the hardest things to deal with besides the symptoms and recovery was watching my loved ones suffer and worry about me. I will forever be grateful for my family, friends, surgeons, specialists, therapist and those who supported me throughout this crazy journey. 
 
My family and I became very knowledgeable about this disease. At times we felt like we knew more than the doctors. I kept detailed notes of all my tests, procedures, medications and weaning process, in hopes to help anyone who feels “alone” through this process, as I often did.  I hope that I can help even one person find a quicker diagnosis, allow them to reach out if they need someone to talk to, or just to make a friend who has been a victim of this rare disease. 
 
Danielle at the Brain Tumour Walk in Toronto 2016Just this past weekend my family and I walked in the Toronto Brain Tumour Walk at Nathan Philips Square. I raised a total of $3,558.00 for the Brain Tumour Foundation of Canada and hope to continue to advocate both for myself and anyone affected by brain tumours. 
 
Even on your darkest days, I want you to remember; there is light at the end of the tunnel. It does take work, but I promise that it will get better!
Thank you Danielle, for sharing your story and for joining the movement to end brain tumours! The movement is stronger because of you!

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