Update 10-19-2013

I haven't updated in a while, so here's what is going on right now:

I'm still awaiting a surgery date.  Dr. P's endocrinologist has to go over my paperwork and decide if I'm ready for surgery.  He said I would hear back within 1-2 weeks, and Tuesday will be the end of week 2, so any day now, in theory.

Because of the feeling I got from him on that phone call (and all the negative reviews I've heard of this endocrinologist --even from his own mouth-- about his experience with and understanding of Cushing's Disease), I decided to come up with a "plan B", which then led to a "plan C" as well.  ;)

Dr. F (MY endocrinologist) sent a second surgery referral to a neurosurgeon in Texas at MD Anderson.  Dr. McC was my first pick, but surgery with him would have to wait until January 2014, when I have insurance coverage.  There are various reasons this might be the best scenario, but I'm not closing the door on Dr. P in Ohio yet.  Dr. F told me this week that Dr. McC accepted my referral and said he would be pleased to help me.  (Oh, and he has already fought and won the battle to be able to decide for himself whether he will preform surgery without outside oversight, so that means that I wouldn't have to play this waiting game).

Dr. F also had me schedule a phone appointment for this week to discuss going on medication while I wait for a surgery date.  I started 400mg daily (200mg at 8pm and 200mg at 10pm) of Ketoconazole on Tuesday evening, and so far so good.  It is taken at night to try to flip my diurnal rhythm back to where it should be (ie, low at night, high in the morning).  I have not needed a morning dose of hydrocortisone yet, but have them on-hand should I swing too low or my body not be "high" enough in the mornings.  I have noticed a few improvements so far, the earliest and most noticeable being my ability to sleep.  Many have said that it took a while for the medication to really kick in, and that they often felt worse for a while (with increased intensity of "low cortisol cycle" symptoms) until their body adjusted to the new levels.  I'm in a high cycle right now and hopeful yet more improvements will come, though I am a bit leery of the aches, pains, etc increasing.  I'm hoping it'll all go well and I can stay on this medication, getting my body in better health for my surgery and recovery.

Zebras

Zebras (and their stripes) have come to symbolize rare diseases.  There is a common phrase used among medical personnel that goes something like this:  "When you hear hoof beats, think horses, not zebras."  And it is meant to remind them that the most likely cause is the one they should test for first.  BUT, far too frequently this phrase is used as an excuse by medical professionals not to take our concerns or opinions seriously, and instead of working their way up to testing us for those "zebra" conditions, they tend to treat all symptoms separately and fail to look for a common cause.  This can lead to years of frustration, heartache, and worsening illness for those of us zebras that are trying to survive in a world full of horses. 

I used to think animal prints were somewhat tacky, but I must say, I now find zebra print full of meaning and plan to add it to my wardrobe.  Stripes are sexy! 

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.

Cushie Steph makes an AWESOME music video!

This is AWESOME! A Cushing's Disease music video:

http://www.youtube.com/watch?v=oTmJCzZHD58&feature=share&list=PLCBB337E85DCF0E3A

 

 

(Just be warned it has a little language.)

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:

http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-1
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-2
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-3

NEW MRI --a HOT MESS!

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.

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!  ;)