Wednesday, April 23, 2014

HELLO TEXAS!

Today I arrive in Texas, on my way to the MD Anderson Cancer Center for my appointments starting in the morning.  With a 3 hour time difference, let's pray that I don't sleep through any alarms tomorrow morning!  Mean thing to do to a Cushie, making them have morning appointments! 
 


This is the main campus of MD Anderson.  When we said it was a maze, we weren't joking!  Sky bridges from one building to the next, little carts to ferry people like they have in airports (Beep beep!), multiple cafeterias, office locations given coordinates (7th floor, G elevator), it's own beauty shop, and even it's own hotel attached via sky bridge.  What is more impressive in comparison to all of that, is how just plain NICE everyone is.  I mean, people are nice in KTN, but for the most part, MD Anderson was amazing.  Everyone smiles genuinely, everyone likes helping you.  I even watched a gentleman in a lab coat walking through the hall stop and pick up a patient's tablet before it hit the floor (he'd fallen asleep waiting outside of the surgical area and it was sliding slowly off his lap).  Something small, sure, but it is just an example of the full-blown hospitality that is common-place there.  I've not been to a hotel that treated me any better, though I am glad none of them tried to drill into my skull.  ;)

Tuesday, April 22, 2014

Trip Time!

Today I leave on a trip to Texas!  I will first have a post-op MRI of my pituitary gland and a follow-up appointment with my neurosurgeon at MD Anderson in Houston, and then I will be in San Antonio for the Magic Foundation's Cushing's Convention.  There will be much news this week/weekend, but since I cannot guarantee I will have the time, nor the energy, to post while travelling, I will schedule a post for each day of my trip just to be sure I don't slack off from completing the Cushing's Blogger Challenge for the full 30 days.  I'll post the programs for the days of the convention, and hopefully I can use what I learn while there for new posts after I return home.  I may not be posting these blog posts to facebook, but if you feel so inclined, feel free to do it yourself (but someone please tag me so I can share it too if I get on!).

Monday, April 21, 2014

BlogRoll!!! And some oldies but goodies.

Well, you learn something new every day!  I just recently found out that a Cushing's-Survivor friend, MaryO, keeps an ongoing "blogroll" on the right hand side of her blog.  It shows various posts others writing about Cushing's have added, and links you to their blogs as well.  Talk about a fabulous network of information at your finger-tips!  I'll be leaving tomorrow on my trip, and while there will still be posts, they won't be quite the same...So to satiate your Cushing's blogger's appetite, here's a list of others you can enjoy!

Here is a link to her blog: http://cushie-blogger.blogspot.com/  Check out the blog roll to the right and see what speaks to you today.

Also, I will take this opportunity to link you to a few of my older blog posts (from before this blogger's challenge) that I think just might hit home for you:

Positive and Negative...Lets talk about illness

The Hormone Storms of Cushing's

"Diagnosis seeking" and other comments

My Cushing's Story

Sunday, April 20, 2014

A thief named Cushing's


I was trying to think of another topic to blog today, and coming up blank.  So I decided to look at a list that was made a while back of suggested topics from last year: http://cushie-blogger.blogspot.com/2013/03/cushings-awareness-blogging-challenge.html

One of them DID jump out to me this time:  "What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals? What new goals did Cushing's bring to you?"

Here comes the introspection...

1.  My ability to think clearly and remember well.  I consider myself a "jack of all trades, master of none."  I've loved my ability to do whatever I set my mind to.  To be able to easily learn whatever interests me and quickly become proficient and knowledgeable in that area.  It used to be that I'd watch a tv show, see a performance, or learn of a profession and think to myself, "Huh...that's kind of fun.  I could do that!"  I still say that in my head, but I have to remind myself now that I no longer have those options.  I can barely read a book.  I can no longer sift through complicated medical studies and come out well informed.  I can't remember names or phone numbers long enough to switch from one screen to the next.  I can at one minute use a big, unusual word like crenellations and yet not be able to come up with the word "kitchen" the next.  I used to be able to just sit in a college lecture and get a good grade without doing homework or every opening the text book.  I used to be really good at remembering information.  I was even really good at imitation --able to learn skills with ease by closely watching someone else do it well.  In every new thing I tried (karate, violin, tap dance, acting, art, philosophy, counseling/clinical psychology, emergency medicine, new languages, home construction/design, interval running, teaching, religious studies, sewing, goat midwifery, cooking, writing, etc, etc) I would always be told "Wow, you've got natural ability!"  Or "Are you sure you've never done this before?"  And everyone always told me I was "meant" to do whatever it was I was trying out at that time.  It made it (makes it?) almost impossible to know what my true passions or true talents might be, but I could rest assured that I would be able to master whatever skill I found necessary.  I still wish I could do many things and try many things, but it is almost hurtful to read all the inspirational posters and memes that say things like "Follow your dreams," "Make 'someday' today," or "Tomorrow starts today."  No, my tomorrow has to start tomorrow...when, someday, I get a cure and will hopefully mostly-recover from this disease that enslaves my mind and body.  Today, all I can do is survive and try to do so in the best way I can.

2.  My ability to just push through and make things happen.  I was so used to this.  I'd just push myself if/when needed and it wasn't a big deal.  That's normal, right?  Need to stay up till 3am to finish those dresses I sewed for my daughters' baptisms?  No problem.  Need to lift a 90lb bale of hay?  I've got this!  Need to chase a 2 year old through the house bent on making a mess of anything she touches?  That's just motherhood!  Dip 10 pounds of strawberries in chocolate for a luncheon?  YES!  Homeschool children during the day, sing and tap dance in a musical at night all while 20 weeks pregnant?  Sounds like a blast!  No more.  I lost this ability gradually over many, many years of worsening illness, but I still miss it a lot.  It irks me to no end when people treat me like I'm just lazy.  They obviously haven't taken the time to get to know me now (or never knew me before I was ill).  I made myself horribly sick when my illness started to really, noticeably progress because I was used to being able to push myself.  And when I did, I could rest up and in a day or two be back to normal.  Suddenly that was no longer the case (It did gradually worsen, but I think my awareness of the drastic change was sudden).  I would often run the primary alone while one counselor was out of town and the president was away with her husband for months treating his cancer.  2-3 hours of steady work in charge of 60+ kids (and their teachers).  I'd just push through it, but that became literally all I could do for the entire week.  Cooking, cleaning, nope.  Everyone assumed that because I looked like the normal me (albeit increasingly heavier and balder) that I must be fine...even when I explained I wasn't and that Sunday's effort stole from the rest of the week.  I started to hit a point where if I overdid it when I was tired (in a cortisol low cycle, especially), I would hit a new baseline "low" energy level and never recover.  NEVER recover.  Doing more, pushing myself DOES NOT increased my energy or stamina.  I miss "doing" everything and anything.  Really, I do.  I am glad I have an outlet for my creativity and for connection to others with the internet, but I miss "real life" more than I can express.

3.  Cushing's has completely stolen my sense of self.  Honestly, I don't know that I had this to begin with, so maybe I haven't lost it...So perhaps it has kept me from knowing my "true" self.  This is something I've spoken of before.  I even asked on facebook for what people think constitutes them.  (Er, however you'd say it.)  If your emotions are mostly dictated by hormone fluctuations, it can't be that.  If your thoughts are greatly effected by them...your choices, your physical body and physical as well as mental ability...your relationships, etc.  What part of "you" is "you?"  Many people with Cushing's remember a time before their Cushing's hit.  I hear some form of "I miss my old self" or "I want to get back to being me" at least once a week, maybe once a day.  I do technically remember a time pre-Cushing's, but it was in my pre-teen and early teen years...my formative years.  I have no idea what I would be like as an adult without Cushing's.  None.  Will my preferences change?  My reactions to others?  My interests and abilities?  Will I have friends again?  It sounds weird, but it's true.  I don't know who I am.  I know I have worth, and I have good values, but what will change when I am in remission?  I have no idea.  Still, I have faith it'll be better than where I am now, and I yearn for it.  Heck, I'm willing to have multiple brain surgeries or remove some exceedingly vital organs and live life fully dependent on medications for the chance to find out.

Saturday, April 19, 2014

So, how do you respond to someone's suffering?

I think sometimes we just don't know how to respond when we see someone in pain, having a difficult time, or suffering.  Sometimes we say things that drive a wedge between us when we were trying to be supportive or understanding.  Sometimes we increase someone's load instead of lightening it.  I believe there are people who just avoid it (and others in this situation) completely because while they may care, they don't want to do the above.  Well, I've been introduced to some really neat videos that will help you know how to respond and how not to respond.  There is no set of phrases to follow that will always work, each person and situation is different, but it is certainly a lesson worth learning to all who wish to be a support to those around them.

So, first I'll share a short video about the differences between empathy and sympathy, the first forming closer bonds, the second driving people apart:
 
Makes sense, right?
 
Now a longer video (that includes the above) that discusses our need to place blame...and that it stems from a place of desire to control.  It is sometimes easier to blame ourselves or others than to allow that there is no one to blame --this suffering just is what it is:
 
 
And this one is actually my favorite.  If you cannot bring yourself to watch them all, pick this one!  Here she shares her story of how she as a researcher had a breakdown, and learned the power of vulnerability...and with a fair dose of humor, to boot.  This might be a bit off the topic of the post, but it is SO worth the time to listen:
 
 
 
Lastly, another article that will help give a clear boundary guideline for when it is okay to share our own hurts, struggles and hardships, and when it is better for us to simply be a support to help lift someone up.  It's actually an article called "How not to say the wrong thing" from the LA times, and it teaches a very simple principle.  It is also certainly worth a few minutes (below picture from the linked article).



Friday, April 18, 2014

Community support systems and a lack of endo's

An article from May 2011's Endocrine Today explains that there is an endocrinologist shortage that only looks to be worsening.  It explains that this shortage is causing higher patient numbers per doctor, longer waits, shorter appointment times, a drop in the number of endocrine researchers, and an overall drop in the quality of patient care due to those and other related factors. 

In my previous post, Quack, quack, quack!  Pretendo's and Endiot's , I wrote:

"According to Corcept Pharmaceuticals (a company that produces one of the few medications used as a treatment for Cushing's Syndrome, and has set up informational resources for Cushing's patients): there are approximately 5,000 endocrinologists in the Unites States, and of that number, only roughly 600 of them have seen a patient with Cushing's.  And let me tell you, one patient (or even 10 or 20) does not an expert make!  Chances are good that FAR more endocrinologists have seen a patient suffering form Cushing's, but they likely didn't recognize the disease and thus the patient went undiagnosed or misdiagnosed.  Studies are coming out suggesting that this disease isn't as rare as it is reported to be, but is more likely rarely-diagnosed."

When the statistics from the above article from Endocrine Today, are applied to Corcept Pharmaceutical's number break down for Cushing's, things actually are even worse because the majority of those 5,000-6,000 endocrinologists work for the FDA, pharmaceutical companies, in research, and roughly 1/3rd are in academics.  Those may be worthwhile placements, but it leaves very few that see patients in a clinical setting.  By Andrew F. Stewart, M.D.’s estimates, there really are only about 1,000 board-certified endocrinologists serving roughly 6,000 US hospitals.  That is one endo for every 6 hospitals!  And considering that larger hospitals generally have multiple endocrinologists in their department, I would imagine that leaves a great many hospitals without any endocrinologists at all.  If we assume the 600 that have seen a Cushing's patient are spread evenly over the full 6,000 endocrinologists that also work for the FDA, pharmaceutical companies, in research and in academics (I personally know of some in each of those setting, so while it isn't a perfect estimate, it could be close enough), that only leaves roughly 60 endocrinologists in the clinical setting that have seen (and recognized) a Cushing's patient.  60!?  That's one per state!  Anyone else shocked that most of us travel cross-country to see a tiny handful of experts?  If we were to specify cyclical cushing's, the numbers would be abysmal, and the current "handful of experts" would be limited to one.

He goes on to explain some reasons why the shortage exists and some suggested ways to make improvements.  In among the suggestions was the statement that "Community-based support systems must play a larger role."  I would like to publicly thank my online Cushing's community, along with the Addison's community.  I would not have seen my endocrinologist without the help of the Addison's community.  I had eventually recognized my lows for what they were, an adrenal imbalance, and they sent me to the best doctor they could have...an expert in pituitary disorders and the hard-to-diagnose.  The ONE cyclic expert (No, he isn't a quack, he's crazy-qualified with a CV of Gold!) who figured out my "lows" were actually a by-product of my "highs."  They helped me in a time of need and got me where I needed to be.   

At that point I went all-in with the Cushing's community, and they've helped me in ways that words just cannot do justice to, but I'll give it a try anyway...They've helped me learn the ins and outs of this disease, the myriad of confusing and changing symptoms, the long and repetitive road of testing, diagnosis, long-term recovery (and life after Cushing's), post-op, surgery, helped me find the best doctors, etc., etc. And just as importantly, they've helped me to know I'm not alone and supported me every step of the way.  They've cried with me on my bad days, helped me trouble shoot when I've run into road blocks, and they've rejoiced with me on good days.  They've even helped me to laugh at my awful situation and symptoms (If it weren't so funny, it would be sad!).  I swear they often are more upset than I am when I have hardships and are also more excited than I am when things go well!  Britton was amazed at the number of Cushing's friends texting, calling, emailing, posting and PMing from all over the world when I had my pituitary surgery.  But what he was most touched by was the genuine concern, interest and love he felt coming from them.  In many ways I owe my life to this online community as much or more than I do the doctors who are diagnosing and treating me.  I hope that in my efforts to reciprocate, I can pay it forward and bring this same level of help, education and support to others who are suffering and those who follow in my footsteps. 

Thank you!

Thursday, April 17, 2014

Dr. Ludlam Video

A video presentation by Dr. Ludlam (then head of the Swedish Pituitary Center) in 2009 full of lots of great information:  http://videomedia2.swedish.org/mediasite/Viewer/?peid=39242af8fe64424085947b98913661f1  It is DEFINITELY worth watching, especially if you don't yet know much about Cushing's, symptoms, testing, types, surgery and recurrence.

This is not my endocrinologist, but they are similar in their diagnosis strategies and philosophies from what I can tell.  No wonder so many were saddened by his loss when Big Pharma stole him away!  Luckily, I will be able to hear him speak in-person while at the Magic Foundation's Annual Cushing's/AGHD/hypo-pit Convention in just a few more days.