The Horrible, Hideous Monster
By Tricia Godt Borchardt
It attacked me. It gradually took over my body and changed my appearance and I thought there was nothing I could do about it. I thought it was normal. I thought I just needed to work harder on my diet and exercise. It weakened me physically and mentally. It came in disguises; many, many disguises, anemia, weight gain, thyroid imbalance, sleep apnea, rosacea, elevated cholesterol, blood pressure and blood sugar, unexplained aches and pains. It tricked doctors and made me look bad. It was evil and nasty and stole my life away from me and I didn’t even realize it. Who is this horrible monster? Its name is Cushing’s disease. It’ came in the form of a tumor on my pituitary gland. Extremely rare, most doctors will not ever come across a case of it in their careers, I was told. Unusually high levels of the hormone cortisol, in my case 22 times normal, were coursing through my body for many, many years causing all kinds of problems.
If you think this monster may have its claws in you, don’t give up until you find a doctor who will listen to you! Ask for a referral to an endocrinologist, have them test your cortisol levels, there are several different tests to go through, don’t stop after just one or two “normal” tests if you think you may have this! You know your body and if you think something just isn’t right, it probably isn’t.
In 2004 I was probably the healthiest I had ever been. I had recently lost a little weight after being referred to a neurologist for burning in my hands and feet. I was told I was prediabetic and had a B-12 deficiency. I was asked about steroid usage then and, as I was asthmatic, that seemed to explain my weird cortisol levels (if only that doctor had done some further testing then!). After I lost the weight, I felt great and wanted to continue to lose a little more, but try as I might, I was not able to, then I suddenly gained about 50 pounds. I had also been having severe problems with my menstrual cycle. I was told I had adenomyosis and was severely anemic. My body did not seem to know how to use vitamins from food. I also had trouble with my thyroid, my cholesterol did not seem to respond to the medications I was on. I started snoring (really loud) and was found to have sleep apnea, developed rosacea, and then eventually high blood pressure and diabetes. My hands shook, I was almost always hot and sweaty, and I bruised and bled easily. I was tired all the time, hardly slept at night and was weak and achy. I had a hard time bending over. I just continued to push myself thinking exercise was the best thing to help me sleep and keep the weight off. I’m really convinced that if I hadn’t worked so hard, I would have gained at least 20-40 pounds more than I did. I actually lost weight the last couple of years, about 20 pounds in total and I know now that it was muscle and bone loss associated with this monstrosity. I believe that the exercise helped burn off some of the cortisol. I now know that the systems in the body that normally process food into energy weren’t working properly. Some of the food that would have been converted to energy was instead converted to fat which was stored in the upper torso, back and stomach. The cortisol also causes inflammation, hence the swollen neck, face, hands and feet. Whenever I walked by a mirror, I was surprised by my appearance. I did not recognize myself. The big, rounded, puffy face, neck and belly are common symptoms of this disease.
Getting thismonster diagnosed may be hard, but in my experience, that is just the beginning of the battle. You will be warned the recovery is not pretty, but you are virtually guaranteed a full recovery. That’s the good news. The bad news is that it may take much longer than you anticipate. In my experience, the recovery is not progressive. I felt good for the first week after surgery. The only real complaint was a headache and a fear of what was to come. The next three to four weeks brought severe flu like symptoms as promised. When I finally got through those (and I had to have the help of IV fluids and extra IV steroids), I started feeling better and thought I was on the road to health. I tried to get back to my life as I had known it, pushing myself a little harder each day. About six months post-op I realized I was not feeling better. The more I pushed myself, the worse, it seemed, I felt. I decided to just give myself time to heal. The garden went weedy, the housework went undone and I just did the bare minimum to get by. I was able to do my half time job because I have extremely understanding coworkers and it isn’t physically demanding.
Finally at about the one year mark I started seeing improvement, but I still have SEVERE joint pain and tiredness. I’ve been told by my “cushie” mentors that it will eventually improve. I am convinced that being persistent and stubborn against this thing does help. Don’t let it get you down. This thing attacks the mind as well as the body. It causes you to doubt yourself and that is probably the most hideous thing about it. It is a battle and some days it may seem like it will never end, but you cannot let the monster win!
If you’re reading this and haven’t been diagnosed, I wish you luck on your journey. If you are in the midst of your journey, I pray for your full recovery and a bright and beautiful future. If you are a caregiver, friend or family member, I hope you will stay positive, strong and supportive throughout this long battle. If you’ve survived it and told your story, started a blog, hosted a webpage or created a Facebook group, I thank you from the bottom of my heart for being there for me in my time of need. I have “met” many wonderful, caring and compassionate people I am privileged to call “cushie” friends!
Since I updated my story in May of 2012, I have found out that I am adrenally insufficient. I must now wear a medical ID bracelet that states “steroid dependent” and take hydrocortisone daily.