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Showing posts from December, 2013

Less Than? Or Enough?

For the past few weeks, I have felt on the edge of tears, almost always.  I'm not sure why, but cried it out today in the shower.  It felt good, to be relieved of all the tears, but they didn't go away like I thought they would.  I'm definitely a crier.  I cry reading books, watching movies, seeing "mushy" commercials.  But this was different.  I'm with my favorite people on vacation, I don't have to work, I feel OK physically, I've been sleeping pretty well, I can't figure it out. 
I assumed hormone fluctuation, as always, but usually that comes and goes pretty quickly.  This has been at least 2 weeks, probably more.  Of course there are more stressors over the holidays, but we've settled into a routine.  Maybe I have Cushing's again.  Maybe my questionable rest tissue is working and giving me cortisol highs.  Maybe I'm feeling the lows after the highs.  Who knows.
The past few days, on vacation, as everyone is re-introducing themselv…

Vacation, all I've ever wanted!

The week I've been waiting for all year is finally HERE!  After 5 months, finally another vacation.  It seems like I'm off from work a lot, but most of the time it's medical leaves, or surgery recovery days. I rarely have enough sick time or money to take actual vacations.  New Year's in NH is another story. I haven't missed this trip for 5 years.  A few of those years, this week fell in the middle of a medical leave, other years I've managed to save a few days of vacation for this.  It's hard when my sick time rarely covers my sick days, but for some reason, I manage to get this week off almost every year.

I'm planning on reading a lot, I'm almost done with "The Fault In Our Stars" by John Greene, and have cried my way through it.  So far, I'm loving it.   I would like to go through "How To Be a Friend to a Friend Who's Sick" and finish my book reviews also.

I'm excited to relax, have fun with friends, and get some…

GuacaMOLE

I have a TON of moles, and have since I was a kid.  I have kind of neglected my dermatologist over the last few years, mostly because I have been busy at MGH with Cushing's and parathyroid tumors and MEN-1 stuff.

I finally made an appointment, and got in fast due to a cancellation.  A few spots that I had concerns about were no worry to here, but I did have a few small spots that were pretty dark, so she decided to biopsy a newer one.  It came back with abnormal cells so the area around it will have to be removed.  My dermatologist had to reschedule so I'll have that done in January.  I have about 10 other spots like this one, that will all have to go at some point.  My endocrinologist thinks that these new ones might be due to high ACTH, but they wouldn't be abnormal if that was the case.  I am definitely noticing more and more moles/freckles in the last year or two, and I am generally careful about my sun exposure, but absolutely let it slip this past summer, and was in …

Cushing's Surgery FAQs

I get a lot of questions about my surgeries, some general questions, some come from Cushing's patients themselves.  I don't think I've ever gone into a ton of details before, so here it comes.  
Cushing's Specific Questions:
Pituitary Surgery
Q:  Did they find the tumor easily?  Why did you have 2 surgeries?
A:  I had a clearly marked tumor on my pituitary MRI (see below), but no, they did not find a tumor at all.  I had a second surgery to remove the half of my pituitary gland where the tumor was.


Q:  Did you feel any different after pituitary surgery? 
A:  After my first surgery, I felt immediately like I didn't have Cushing's Disease anymore.  I felt less swollen, and generally deflated.  After the second surgery, I felt the same going in as I did coming out. 
Q:  What medications did you have to take post-surgery?
A:  The only medication I had to take was dexamethasone.  It's a high dose steroid, that I took for a few weeks after surgery to make sure I …

4 Years of Cushie Life

So, I sort of missed the actual day, November 9th, but it's been 4 years since my diagnosis, and almost 4 years since my first surgery.  After years of doctor's appointments, testing, a lot of weight gained, many tears, and breakdowns, I finally was diagnosed with Cushing's Disease.  I remember almost canceling the appointment before, because I had chickened out during my MRI, but when I called, the secretary said no way, keep the appointment.  I had seen the MD, not the fellow the appointment before, and had done more testing than ever, and was on a strict diet.  My mom was with me, and I finally heard the words "You have Cushing's Disease".  You can read about that moment here.

It's a hard thing to explain to most people, most people are devastated when they are diagnosed with such a serious, life threatening disease.  For most people with Cushing's, the diagnosis is a long time coming.  Most of us have seen many doctors, tested for years, and alrea…