I started 2014 thinking that it would be “The Year Of No Complaints” for me. So far, it’s pretty much panned out that way, but my only real complaint stems from this elephant in the room / on my stomach that is Cushing’s Disease. It just won’t seem to leave my life in a timely fashion.
To give you an update, the last time I wrote, I had just returned from a successful trip to Shands, wherein I was referred to Emory to see a “specialized specialist.” Turns out that Emory’s person of that description is not what they say she is on paper/their website, and it took her 5 weeks to determine that my case was “too complicated” for her. The office manager for Emory’s Neuroendocrine Pituitary Center told me that they “really wanted to help me,” but perhaps I should check out the Pituitary Network Association’s website to find a legit doctor. So that was disappointing, and it was also in December, so then I basically had to start over in finding a new specialist.
Over the last few years, I’ve had bizarre luck with endocrinologists and the technology that is the internet. In my mind, a doctor’s office should ensure that the patient receives care, and should never tell him/her to use the internet as a means of finding their own treatment. My first treating endo told me to google my surgery options, now Emory (Emory!) tells me to use the internet. It’s fine that they didn’t feel comfortable in handling my case, but you’d think they’d know of someone who could…am I that much of a medical anomaly?
With a little help from my newly reassigned case manager (thank some higher power for her!), I was able to get in as a new patient at the Cleveland Clinic of Florida, to see a great endocrinologist. He’s the head of the department at the Cleveland Clinic of Ohio, but travels to Weston, FL 1 day/month to see patients. I was on the books for January 20th, but got a call a few days before saying that the doctor was sick and wouldn’t be able to make it. And since I’m a new patient and need a longer appointment time, I couldn’t be rescheduled until March 17th. Just a little bit of a setback…
But then I got a call saying that the doctor will be spending an extra day to see patients during his monthly trip in February, so I’m scheduled for Tuesday, Feb. 18th. Cross your fingers that this appointment will actually happen, as the new doctor is “delighted” to take on my case! That’s reassuring and gladly welcomed after many months of doctors seemingly not giving a shit…it’s not a good feeling.
I’ve learned to be extremely patient in having this disease, as things rarely go as planned. When told in late October that I needed my adrenals out sooner rather than later, I went into panic mode. In theory, I should have already had my 5th surgery, but I haven’t even been in for a consultation yet. It’s only my life on the line here, no big deal. To make light of the situation, one of my good friends sent me this lovely little stuffed kidney with a homemade party hat on top. The party hat signifies an adrenal gland, as I often refer to the adrenals as “kidney party hats”:
So besides having Cushing’s, which I hopefully won’t have for too much longer, my year is off to a great start. I was able to spend the holidays with my wonderful friends and family from in and out of town, so that was truly special and a nice way to transition to 2014.
I came up with some 2k14 goals, and they are as follows (in no particular order):
Spend more time with loved ones:
Get up in time to watch the sunrise (on occasion):
Step up my crafting game:
Eat delicious/nutritious/meaningful meals:
Spend more time in the great outdoors:
Maintain my sense of humor:
Beat Cushing’s Disease:
As always, I thank everyone for their continued love and support. This will be my year to shine – oh yeah – I’ve already made it big time, as a feature on totalbeauty.com. Thanks to a talented writer I know from back in the day, my message about Cushing’s is making it’s way in the world:
Kicking Cushing’s To The Curb,