Sunday, September 14, 2014
Friday, July 4, 2014
Hug your Cushie: What is getting an MRI like?
I patiently watched that video. It all sounds pretty doable. Pleasant even! Well, why do I associate this machine with a torture chamber?
I have been getting MRIs every six months for seven years now. I used to convince myself that it was no big deal. It was, after all, just what had to happen as a patient with pituitary tumors.
Stoic. I'm always trying to be stoic.
The last time I went for my pituitary MRI with dynamic protocol, I asked my dear friend Melony to tag along as "moms play date." I promised her dinner afterwards, but one condition: she could not make me laugh in there. Melony held on to my leg the whole time. At the end, she asked, in tears, how I can stay so strong every time? I told her that I really am not! I hate that machine! I hate the noises! I hate the head contraption that keeps my neck from moving. I hate lying in a tube where my whole body is touching the bottom and sides of the tube, with only four inches of space between my chest and the top of the MRI tube. I hate MRIs. There. I said it.
Thursday, July 3, 2014
to review your test results.
Monday, June 30, 2014
Sunday, June 29, 2014
*~* Your Family Photo Facebook Album Could Help Doctors Diagnose if Your Child Has a Rare Genetic Disease *~*
Saturday, May 17, 2014
Thursday, April 24, 2014
ASSIGNMENT 13: The 'pain' of feeling caught in the middle
Monday, April 21, 2014
Why Doesn't My Endocrinologist
Know All of This?
Sunday, April 20, 2014
5 Things to Do When Symptoms Are Not 'All in Your Head'
Saturday, April 19, 2014
Dr. McCutcheon is a wonderful neurosurgeon. He performed my second pituitary surgery.
Dr. McCutcheon has helped many Cushing's patients by understanding the disease and listening to his patients.
Dr. McCutcheon is a professor at world-renowned MD Anderson Cancer Center located in Houston, TX.
Friday, April 18, 2014
Robin, blogger at http://survivethejourney.blogspot.com, wrote the post that is true today as it was all those years ago (sadly.)
Thursday, April 17, 2014
Wednesday, April 16, 2014
Female Patient found Unconscious with Syringe Nearby - Case of the Month
Robin, the Cushie survivor who blogs at http://survivethejourney.blogspot.com, created all the graphics for us to share during Cushing's Awareness Month. Thanks Robin!
Friday, April 11, 2014
I enjoy a good obstacle course game show. As a child, I fell in love watching Battle of the Network Stars. I DVRed Wipeout and giggle throughout. I am such a Ninja Warrior fan, I can't even tell you.
I didn't make the connection to that interest until I saw the cartoon below posted by my friend, the incomparable MaryO, founder of www.cushings-help.com.
I see this cartoon, and it is clear to me very quickly. That reality looks easy. That reality is doable. That is stuff people can get through. We all expect that. Life has ups and downs. We made it through childhood, we get that.
The reality looks like a cake walk compared to Cushing's diagnosis and treatment. That, I was never prepared for.
After fighting for seven years from first seeing the word CUSHING'S in March 2007, I have been on the long and circuitous path to diagnosis, pituitary surgery, rediagnosis, pituitary surgery 2, rediagnosis, medical therapy with ketoconazole, rediagnosis, bilateral adrenalectomy, and now bimonthly lab work.
I must determine the optimal balance of 20 to 25 hormones despite a damaged pituitary gland and zero adrenal glands. I have no functioning master gland, no hormone control center. I take pills, use patches, and slather gels multiple times a day. Lather. Rinse. Repeat.
So if I were handy or artsy in more than one cell, I would draw up a new cartoon to resemble my reality -- and many Cushies' shared reality -- to win good hormone health.
- Drops would fall back down to or below starting point
- Fewer ladders
- Ferocious beasts chasing us back to start or keeping us in the same spot for weeks and months, some hidden so we never see what we are fighting
- More creeks without paddles
- Hidden quick sand and tar pits
After every obstacle imaginable, take that course and duplicate five times. No. TEN TIMES. That is the life of a Cushie.
In my cartoon, the finish line flag has hearts in each square and a line of friends pinning blue/yellow medals of honor and bravery upon each other. I'd give each one the red badge of Moxie.
Wednesday, April 2, 2014
I logged onto my online Cushing's group tonight.
to another day of sickening thoughts and silent criesMy mind awakes once more to realizeI must face yet another day of struggling to surviveThe pain sets in and the unrealistic, realistic thoughts pour inI cannot concentrate, focus, just sit and wonder how to beginTo get back the life I once had, so normal and trueLoving family surrounding, yet none with a clueFilled with disease my body began to failTo disintegrate, fall apart and become frailAway from reality, family and friendsIts taken me to hell without any endI've lost my life, my friends are fewFamily doesn't understand, as white trash I am viewedI don't want to go on, each night I lay my headI pray I'll just sink into the ground because I feel I am already dead.
Tuesday, April 1, 2014
One of my favorite times of the year.
Although many celebrate one day of Cushing's awareness centered upon Harvey Cushing's birthday on April 8th, it is my goal to see April celebrated as Cushing's Awareness Month.
We need the chance to educate and advocate.
We need the support of those who surround us every day.
We need to reach all of the undiagnosed souls seeking answers in uncertain times.
We need the chance to stand up as survivors, hold hands, and say, Yes! We made it through another year.
April has become a very important time of the year for me, as a Cushing's survivor, and I hope you enjoy what's pops up this month. It will be a surprise to all of us, since even I don't know what I will say in 30 posts in April. ;)
Stick around. It will be fun for all of us.
PS Special thanks to Robin for designing the Cushing's Awareness logo. She blogs at http://survivethejourney.blogspot.com/
PS2 Look how honest I am. I'm
Not even gonna count this as my first real post. I'll do 31 posts in April, and I will like it! So will you. :)
Monday, March 31, 2014
How ca I get a job doing this full time? No need to write up a script. I'll just use my real-life experiences. Easy peasy.
Thursday, March 27, 2014
Monday, March 24, 2014
After a wonderful massage, my chiropractor told me that she didn't even recognize me sitting in the waiting room. I was truly surprised. I told her that I don't see much of a physical difference. She said it was there, and we often don't see it in ourselves because we see it every day. She said I look totally different. She could see it in my face and body shape.
I haven't seen her since my BLA surgery on 12/31/13 and showed her my six little scars on my back. I will continue with massage therapy once a month and restart acupuncture therapy every other week to help balance hormones and for overall well-being.
This isn't just a weight loss story, because I haven't lost any weight since BLA. My body shape has changed and my face is much slimmer. I still don't understand where everything has moved or shifted since my weight is the same. My stomach isn't distended anymore. Was that just filled with air? Really. Where did it go? Should I even bother to figure it out? Naaaaah.
For me, this story means cortisol no longer has me in a vice grip. That means I am getting better. That means I feel like this:
Wednesday, March 19, 2014
Thursday, March 13, 2014
Monday, March 10, 2014
I heard Dr Salvatori at the Johns Hopkins School of Medicine at the Magic conference in July 2012.