40 Days of Thankfulness: Day Twenty

Today is a very special day for me.  I am thankful to so many, named and unnamed.  This is the 23rd anniversary of my pituitary surgery at the NIH in Bethesda, Maryland.

I couldn't have gotten to surgery without a myriad of books from the public library, my parents who watched my son while I was at NIH for 6 weeks pre-op, an oncologist, the endo who got me there... So many, and so many years of sickness just trying to get diagnosed.

I won't bore anyone with my "story" but if anyone is interested, it's available here.

The short version is that I knew I was sick starting about 2003.  No doctors would offer any help.  A chance description of Cushing's convinced me that this was what I had.  Even when I presented Xerox copies of medical texts to doctors, they would all say that I couldn't have it.  It was "too rare".  I was fat.  I cheated on my diet.  I was depressed.  Go away.  Take drugs.

I finally got to an endo who got me into NIH in 2006.  During six weeks away from home as an in-patient, they diagnosed me with pituitary Cushing's.

For those who don't know, here's where the pituitary gland is:

I had a 7 year old son and I was sure I was going to die during surgery, if not before. I wrote letters "just in case".  I was terrified of what could happen and also what would happen if I never had surgery.  I knew I couldn't live with the Cushing's.

A college contempory of mine wasn't so lucky.  Luckily, I didn't read this in the Alumni magazine until after my surgery. She had the same operation. She came from my home town. We  had the same major at the same college, we were the same age. We had the same surgical and medical team. I recovered. The other woman died during surgery.

So, today, on my 23rd anniverary, I am thankful that I saw my son grow up, that my husband stuck with me, that I'm still alive, that I'm able to help others beat Cushing's...

Thanks to Dr Edward Oldfield, NIH, nurses, doctors, Fairfax County Public Library and how it all worked out in the end.

 

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40 Days of Thankfulness: Day Fifteen

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I hope I'm not jinxing myself but today I am thankful that I haven't had any migraines for a long time.

It's not "just" not having migraines, but the fact that, should I get one, there's nothing I can do about them anymore.

I used to get migraines quite often, a hormone thing probably.  I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

There was a long period of time that I had a migraine 6 days out of the week for several weeks.  By accident, a friend asked me on a Monday if I had one that day and that started me thinking - why do I have them every day except Mondays?  I figured out that it wasn't a migraine at all but an allergy headache - I was allergic to the bath oil I was using Monday-Saturday.  I gave that to my Mom and those headaches went away.

I still often get allergy headaches.  Since my Cushing's transsphenoidal pituitary surgery, I can't smell things very well and I often don't know if there's a scent that is going to trigger an allergic reaction.  In church and elsewhere, my Mom will be my "Royal Sniffer" and if someone is wearing perfume or something scented, she'll let me know and we'll move to a new location.

There's a double whammy here - since my kidney cancer surgery my doctor won't let me take NSAIDs, asperin, Tylenol, any of the meds that might help a headache go away.  My only hope would be that coffee from Day Fourteen. And that's definitely not usually enough to get rid of one of these monsters.

So, I am very thankful that, for the moment, I am headache/migraine free!

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