Here we go!! I have joined the ranks of the online bloggers... who knew? For those of you who know me well -- I have always been outgoing and am not shy about sharing.... but things going on in this season of my life have made me stubborn (more than usual), have taken all control out of my hands and have brought me to the realization that life really is a constant journey. Nothing seems to stay the same or be predictable..... and lately I struggle with this concept. I struggle with how to let everyone know what is going on without sounding like a 95 year old women constantly complaining about a hip replacement. I am here to deal with the day to day in a healthy (and positive) way -- and to share what is going on with all of you. Craig (my amazing husband) has offered to keep this up to date when I cannot after my surgery.
I hope that someone working through their diagnosis finds this blog useful -- like I have found comfort in the information all over the web that others took the time to share.
What is Cushing's Disease?
I was recently diagnosed with something called Cushing's disease. It is an extremely rare disease (or orphan disease - defined by the National Institute for Health's Office of Rare Disease Research as occurring in under 200,000 affected individuals in the United States). Leave it to me - I like to be unique) Simply: I have a small benign tumor on the left side of my pituitary gland that is causing the pituitary to constantly release an excessive amount of ACTH. The overabundant amount of ACTH then signals my adrenal glands to over produce Cortisol. This results in Hypercortisolism, basically the same reaction that your body has when you are in a sudden seriously stressful situation (skydiving, a car crash..) commonly known as "fight or flight." Blood sugar levels are increased, blood pressure is increased, and the body is signaled to suppress it's immune system. My body is in this condition 24/7. Great when your body needs to kick into gear to deal with that sudden seriously stressful situation. Not great when you are trying to sleep.
Broken down Barney-style: It is like I have been taking WAY TOO MUCH prednisone or steroid for a VERY long time (ten years is the doctors best guess) and my body is angry about it. If you or anyone you know has ever had to go on steroids to treat anything - you are aware of the short term symptoms: irritability, increased hunger, difficulty sleeping, weight gain, water retention, and it is pretty easy to get sick from a bacterial infection.
Normal doses of Cortisol - in the steroid family glucochorticoids - (or the chemical reproduction: hydrocortisone) do great things for your body: reduces inflammation, makes sure needed sodium that your body creates is not lost, helps the liver remove toxins. In high doses these "side effects" turn problematic, and eventually are fatal.
Cushing's Disease has several "hallmark" symptoms: unexplained weight gain in the upper body with increased fat around the neck and face (moon face); a hump at the nape of the neck (buffalo hump); facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoporosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, insulin resistance, infertility, hirsutism, male-patterned balding and steroid-induced acne.
Luckily I have gotten away with not having acne, facial hair and have plenty of hair on my head. In fact - I would like to know how I can donate some, ha! :) I don't believe I have depression of any kind and am generally free of anxiety (until lately).
My list of "symptoms" that can be traced back to Cushing's Disease are amazing. For starters - those of you that knew me in high school remember my pretty sudden weight gain at the end of senior year and into the first year of college. I have spent the last ten years of my life in and out of the doctors office dealing with stress fractures; chronic mono; sinus infections; strep; chest infections; serious dental issues (almost all of my teeth are root canalled); poison ivy that lasts forever; bug bites that fester and wont go away; skin problems that spread and scar; difficulty sleeping (a sleep test at Wash U concluded that I wake up between 17 and 70 times per hour -- leaving me with very little REM sleep); constant urination; insulin resistance; lack of periods; 2 instances of MRSA Staph infection; intolerance to heat or cold; seriously high blood pressure.... on and on.
For ten years doctors have been treating my symptoms. And saying that they are unrelated.
It is a relief to know that there is a CAUSE for all of this. And it is a huge relief to know that there is also a CURE for all of this.
I have an amazing team of specialists at Barnes Jewish Hospital here in St. Louis who have decided the course of treatment will be a form of brain surgery done through the nose. An ENT (ear, nose and throat) Surgeon will go in, drill through some bone and get to where the pituitary gland is located at the base of the brain. My Neurosurgeon will then take over, "bread slice" my pituitary gland so that he can visualize all areas, remove the tumor and any other cells that look problematic, plug the layer that protects the brain and keeps all of the CSF (brain/spinal fluid) in. More on all of this later -- but this surgery is happening April 27th. 60 - 80% of the time one surgery is a cure. If it doesn't work (and there are an uncomfortable number of variables) - a second surgery, gamma knife radiation, medication and finally removal of both adrenal glands occur. I have had the opportunity to speak with many women and one man who have been through treatment and results are all over the board..... the majority being "first times a charm."
I am sticking with surgery #1 being a cure and April 27th being the first day of the rest of my life.
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