well, not the exact beginning, but the beginning of Cushing's road.....

nearly two years ago I suddenly developed PPPB...pseudo perpetual pregnant belly.  I was volunteering with my daughter's  youth group on a local mission work week, painting in the heat of July and found i couldn't bend down to do the baseboard trim at all.  my PPPB was denying me this capability.  By the end of the week I was at my PCP's office, pointing in confusion to my distended abdomen.  This was followed by a couple weeks of blood tests, CTs, ultrasounds...nothing wrong.  I pursued with two specialist visits to an endocrinologist and rhuematologist, and I was just sure my family history of rheumatoid arthritis had caught up to me.  The endocrinologist evaluated me, judged me on what she perceived to be my lack of exercise...despite my insistance of the opposite having completed my 10th half-marathon earlier that spring.  Spoke the words to me that changed my life, 'we'll rule out any possibility of Cushing's syndrome' but coached me on the rareness of CS and ruling it out was more like a formality. 

The rheumatologist found no signs of arthritis, thankfully, but cheerfully handed me a presciption for Plaquenil, a powerful drug used to treat bouts of malaria and of course, lupus and RA.  She couldn't give me a reason to ingest this intense medication, other than...it may help.  I still have that written presciption to this day, it reminds me to believe in what I know to be true of my body and not let any doctor persuade me otherwise.

Then I got the call, an excited endo on the other line declaring that yes indeed!  I would be her first Cushing's patient!  hurrah!!  The medical person in me got excited, she was enthuastic about a diagnosis and eager to embark on this!  I failed to see the red flag that is probably very obvious to you.  Would being her first Cushings patient ensure me quality and efficient treatment?  No matter...we were excited!  She said I would need to do two more tests to confirm the diagnosis and then i'd be off for imaging to find the tumor causing my cortisol levels to soar well above normal.  Eagerly I picked up my lab slip and saliva kits and followed her instructions.  Days later, she undiagnosed me....in her words 'she was able to turn off my cortisol production' by my taking a steroid pill (i guess she crawled up in my head that night as i slept) therefore there was nothing wrong with me.  She didn't need to see me again...and my treatment plan was to diet and exercise....despite my complaints of low appetite do to queasiness and difficulting in exercising due to the insomnia that was now plagueing me

I guess in some ironic way I do have some gratitude from my first endiot....the days in between her diagnosis then undiagnosis I got busy on the internet and found a "Cushings Help" forum at http://cushings.invisionzone.com/index.php?act=idx.  The lightbulb turned on and I knew I had finally found the explaination to my suddent onset of symptoms that left me feeling like I had aged 15 years in 3 months

Living with Stripes

so, I have thought about from time to time, starting a blog to share with my friends and family my journey on this road called Cushing's disease...but normally i just figure life is busy and hectic and really, who wants to read a depressing blog on my chronic illness.  But today on a private facebook group page, an online Cushing's support group, somone posted and encouraged us fellow Cushies to keep blogging about our disease.  It has been an avenue for those undiagnosed, untreated, unfamiliar with this 'rare endocrine disorder' of education and awareness.  So, tonight i sit here buying time until I go to the lab for my midnight blood draw, and i'm inspired to do this.  If nothing else it will serve as therapy for me, and if you are reading I hope I can shed some light on Cushings to you

first off, you may be confused by the title I choose for my blog.  maybe this will help explain:

"Zebra is a medical slang term for a surprising diagnosis.  Although rare diseases are, in general, surprising when they are encountered, ..... "When you hear hoofbeats behind you, don't expect to see a zebra",... Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. ....
Three master diagnosticians have noted, however, that cautions against making surprising diagnoses (e.g. of a rare disease) are not valid in practitioners with greater knowledge and experience:

In making the diagnosis of the cause of illness in an individual case, calculations of probability have no meaning. The pertinent question is whether the disease is present or not. Whether it is rare or common does not change the odds in a single patient. ... If the diagnosis can be made on the basis of specific criteria, then these criteria are either fulfilled or not fulfilled. -- "

http://en.wikipedia.org/wiki/Zebra_(medicine)

Cushies have adopted the zebra as a mascot for just those reasons.

There is so much to share and I'm not sure where to start, I guess at the beginning.....