Ahhh, where do I start? And how do people blog on a consistent basis? For the better part of the last year, I’d forgotten that I have a blog, and within the last week was viewing a friend’s blog on WordPress, and aha! remembered I have one too. Although, said friend is traveling in Japan right now, which is a bit more exciting than writing about Cushing’s.
A lot has happened in the last year, and it’s another year to celebrate being alive, not to sound overly dramatic. Today, April 8th, is a day devoted to raising awareness for Cushing’s Disease, a damn strange disease that affects people around the world. Characterized by hypercorisolemia, or increased cortisol levels in the body, Cushing’s can manifest itself by way of a pituitary tumor, adrenal gland tumor, no tumor at all, or ectopically, by way of a small tumor some place other than the pituitary or adrenals. It wreaks havoc on pretty much every system in your body: think endocrine, skeletal, muscular, immune, vascular, and so on and so forth.
It’s not a fun disease to live with, and there’s nothing known to man/doctor about how to prevent it. Research (the little that has been done, since this disease is rather rare) has not shown any genetic nor environmental indicators for this disease, so I know in my treatment for said disease, I was a patient guinea pig, and definitely a medical anomaly, as most medical professionals will never come across an actual patient living with Cushing’s.
I had 3 brain surgeries to try to remove my pituitary tumor – my surgeon accessed my brain by way of my left nostril. To this day, I have chronic sinus infections, which is better than living with Cushing’s. However, the first 3 surgeries were not as productive/helpful as we would have liked, so then I had a mega dose of radiation the following year, which also didn’t do much, and the year after had my adrenals taken out.
I recently celebrated year 5 since my last brain surgery, and am coming up on the anniversary of my radiation (mid April), and BLAnniversary (in early May). It’s been a wild and wonderful ride, and I try not to let my disease/lifelong medical condition consume my life. I pay attention to it daily, as I have to be very diligent in taking my roids and other meds, at 3 different times every.single.day, but it’s not in control of my life.
As the great Joe Dirt once said, “Life’s a garden – dig it” – and I’m trying to do just that. Highlights from the past year of living a life with a chronic disease include:
- Giving my dog a Woofle (dog waffle):
- Corn dogging in front of a ferris wheel:
- Moving and so nicely arranging my fridge magnet collection:
- Turning 30 and seeing Flight of the Conchords on my birthday (Hi, Jemaine’s lips):
- Swimming in beautiful Florida springs:
- Wearing a bandaid that matches what I’m going to eat with breakfast:
- Being gifted the world’s largest lemon:
- Surviving my first hurricane (mini dachshund for scale)
- Eating the BEST/freshest/saltiest raw oysters on the half shell (shucked right off the boat):
- Dressing up for Halloween:
- Loving on this pup:
- Seeing snow (ha!):
- Getting a letter from my main squeeze, Barack:
- Eating the curliest curly fry known to man:
- Making an animal cell model cake for book club, because SCIENCE IS REAL (and real tasty!):
- Winning a holiday door decorating contest at work because I am laughably crafty, and because FESTIVUS IS FOR THE REST OF US:
- Enjoying the Gulf and a Pub sub:
- Seeing magical manatees very close to home:
- Being hospitalized for 2 days because I don’t have adrenal glands and could not keep my important meds down:
- Going to Puerto Rico with my best friends for some necessary R&R:
Eating street foods in Puerto Rico:
- Having my annual brain scan come back CLEAN with no new tumor regrowth!!!!!
- Doing my best to stay present, positive, and gracious for this life:
Diagnosis for Cushing’s can be tricky, but I can’t stress enough that you know your body better than any physician/PA/ARNP/Specialist you’ll ever see in your life. If you know that something is off kilter, please pursue that and advocate for yourself, because this disease can kill if left untreated.
Life will, and does go on. I am in control of my thoughts and actions, and choose to live my life without the burden of disease trailing behind my every move. I am aware of what could happen to me on any given day, but have so many adventures to take and things to mark of my “To Do List”, that I don’t let many things get in my way.
My life was completely derailed when first diagnosed with Cushing’s but I’ve made it almost 6 years since that time, and all things considered, am doing quite well. I don’t know if this post actually raises awareness about Cushing’s, but I want to be a beacon of hope out there for those who are newly diagnosed, or maybe you’ve had your 2nd or 3rd failed pituitary surgery, and are feeling like total crap right now – hang in there, it WILL get better. This is not the life I had imagined, but it is the life I’m living, and I’m okay with that!
Bottom’s up to Harvey Cushing’s on this special day!