Friday, September 27, 2013

Don't let your illness define you!

I keep seeing various meme's about how we shouldn't let our illnesses, struggles or tragedies define us. And while I understand the meaning behind that, every time I read one of those "uplifting" thoughts, it just hits me wrong. I've spent some time thinking about it, and I think I know what it is: While "Me" will never fit in a neat little box with just one definition, my disease by all means has become essential to defining who I am.

It appears the onset was approximately 17 years ago. More than half of my life has been spent living with this illness, and it became a part of me before I ever finished puberty or became an adult. I gained approximately 60lbs in one year despite not having changed my eating or exercise habits. My hair went from thick and straight to almost balding-thin and wiry. I developed bright red stretch marks from my elbows to me knees. I became bogged down by depression and anxiety for no apparent reason, and wen...t from being an early riser to being wide awake at night. Things have progressed slowly since then, and I am lucky (in some ways) that I do not have florid disease or I would not be alive, though it's toll increases the longer I am untreated.

This disease really does affect every process within my body and it affects every aspect of my life...My digestion, my energy, my bones and muscles, weight gain and distribution, my ability to sleep, my kidney function, my liver function, it literally shrinks your brain, my skin, my immune system, my veins and arteries, my heart, my ability to heal, my emotions, my pain tolerance, my teeth, my hair, my insulin (and thus blood sugar), my vitamins and minerals, my cravings, all other hormones in my body, my memory, and even my ability to communicate. And this is the simplified version!

I have Cushing's Disease. It has been so much a part of me for so long that I do not know what "normal" is, I don't know what is just "me" and what is the "cushings." I feel certain I will achieve a cure and at least come close to knowing, but I won't ever get back to the "me" I would have been without it. I will forever be a "Cushie" and that doesn't have to be a bad thing.

Monday, September 23, 2013

Dr. Oz Cushing's Surgery Video with Lori

I've asked on face book Cushing's groups for first-hand experiences, good and bad, with Dr. Prevedello, and I've heard NOTHING but good thus far!  One of the people that messaged me privately was this woman, who appeared on Dr. Oz as they followed her surgery with Dr. P. 

It was so touching, I thought I would share.  And now that this might be my surgeon and hospital, it hits home even more.  There are 3 parts:

Saturday, September 21, 2013


Here is about the best single slice I could copy that would show the whole mess that is my pituitary!  Some portions show better in other slices or other series, but this is a good middle ground.  There is a larger adenoma close to my left carotid (on the right side of my pituitary on the screen --it is backwards like an X-ray), and one near the right also (left side of screen).  The pituitary does NOT enhance uniformly (the whole thing should be about the same level of white, not graduating levels of grey/white).  It is VERY asymmetrical, and doesn't look at all like a little, fairly flat bridge.  In fact, it looks like it has a shark bite out of the right pituitary (much like a post-op MRI would), and it has a big blob on the left pituitary with "fuzz" at the bottom.  Dr. F says the adenomas we see may well be connected across my pituitary, and that my surgeon will really have to explore the whole gland.  He was also very clear in regards to my concern at losing pit function that "NOTHING is worse that Cushing's; hormones we can replace."  Without further ado, here is my new and far-from-improved pituitary!  ;)

Click on the picture to see a close-up.

Thursday, September 19, 2013

It is official! I am diagnosed with Cyclical Cushing's Disease, and cleared for surgery!
Dr. F and I talked about a couple of neurosurgeons, but it looks like the MD of choice will be Dr. Prevedello at OSU (in Ohio).  
I don't need further tests at this point, Dr. F sees tumors on both sides of my pit, everyone LOVED my Cushing's shirt (and wants the link for his website --His med student had to take a picture of it before I left), Dr. Z took 9 tubes of blood (7 red, 2 purple-tops -OY!), Dr. F gave me a supplement to help with the muscle wasting due to Cushing's (He's also a PharmD), I have all my post-op information, lab orders, and even prescriptions (for the hydrocortisone and solucortef, anyway) already. YEHAW!     
So now I'm waiting for the official referral to the surgeon, and then we'll be scheduling surgery!  We're hoping it'll be sooner than later, but will update again! 

The famous Dr. Friedman, otherwise known as the "Cushing's Wizard."
Yes, it IS all in your head...RIGHT HERE!  ;)