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 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:  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.

Wednesday, April 16, 2014

Fat bias and being the bigger person

I woke up this morning, earlier than I'd like to, and couldn't stop thinking while I lay there trying to get back to sleep.  What was on my mind first thing in the morning?  Something I've been avoiding thinking about for a while...Traveling alone on my upcoming trip, and doing so with the help of wheelchairs at airports.

You see, there is a fat bias in our society, even fat shaming.  If you are sick, it is because you are fat.  If you are fat, it is because you are lazy and overeat (uneducated, ignorant, gluttonous, eat unhealthy foods, won't exercise, "let yourself go", have no respect for yourself, are selfish --take your pick).  It couldn't be that your illness, which you couldn't have avoided, directly CAUSED your weight gain and energy loss!  Oh, no!  Granted, few know about this disease, but still the judgment hurts and really, should we be making these kinds of judgments about anyone?  How sad that it's the norm for us to think of and treat others that way, regardless of the cause.  I have a friend in a community that treats being overweight like it would leprosy --it's contagious, so openly shame and avoid those people!  Some of the most awesome and amazing people I know are fat.  Some of the most vile and despicable people I've met are skinny (and oft-times despite horrible diet and exercise habits).  Have we completely forgotten that it's what's on the inside that count's?

So, like I said, I'm travelling alone.  I have zero energy.  I also happen to be quite obese for my short size.  I cannot change either at the present, and I know because I've had the brain surgery to try to fix the cause, along with years of trying diets, lifestyle changes, exercise...everything that "they" say would work.  It doesn't.  I can't override a tumor sending hormones to EVERY cell in my body.  I can only hope to remove it and it's insidious signals that are destroying my life. 

As I ride through the airport in a wheelchair because I cannot walk for long distances or stand in a line for very long (like at the TSA check point), I am overly aware of the looks I get, some quite nasty, that even have come from the person driving the wheelchair.  They don't know that I have a tumor, or that I had brain surgery 2 months ago.  They don't know that my body has literally been eating it's own muscles and bones.  What's worse is that even if they knew, experience tells me they won't care. 

What if I want to get something from the food court before my flight leaves?  Will they wheel me there?  What if I want a pedicure at the airport while I wait?  Is that too petty to warrant a stop?  Will I have to walk the rest of the way then?  Honestly, I feel awful that I'd even have to ask.  Will people glare at me even more because I was wheeled to the gate entrance, but later walked to the restroom and back on my own without any outward sign of disability?  Yes, they do that too.  Heck, even the DAY I was released from the hospital after having my surgery, I rode in a little handicap cart because we needed to buy food (and Gatorade!) and I didn't want to sit in a hot car alone.  People gave me nasty looks then too (not all, obviously, but it's hard to ignore the ones that do).  If I'd had the energy, I'd have happily told them to shove it, I'd had brain surgery 3 days before, but again, they wouldn't have cared and I'd have just wasted more of my precious energy (that's not figurative!). 

And worse yet, I know that by saying all this it will still get put back on me...because that is what always happens.  I get told that *I* need to be the bigger person.  (Ha ha!  Is that a pun?  Ugh.)  That I need to stop caring what others think of me.  That I need to be happy and friendly despite people that don't even know me treating me so awfully, everywhere I go.  And that I need to expend the extra energy to prove them wrong.  Somehow fixing/changing it is all on me.  Well, you know what, I do NOT have the energy for any of that.  That is not an understatement or me being lazy.  I.DO.NOT.  So, for once judgmental people, YOU be the bigger person. 

Tuesday, April 15, 2014

Letters to family and friends explaining Cushing's

In this link there are examples of two letters that people have written to explain Cushing's to their families and friends, along with a news interview of someone with Cushing's.  We all know Cushing's is hard to understand, but hopefully spreading the word and educating can start to help with that:

Monday, April 14, 2014

What not to say to a Cushie:

What not to say to a Cushie:...Or anyone else, really, cause it's just rude!  Imagine saying this to someone with MS?  Or Cancer?  Just because our illness involves a loss of energy and massive weight gain, does not make it okay.
You think you're tired? OMG I have travelled so much during the last month, I can barely see straight!

You are lucky! I wish I could get that much time off work!

You could stand to gain a few pounds anyway...

I bet you'll feel a lot better if you just go for a little run. Just force yourself to get back out there.

My Dentist: "So what are the symptoms of Cushings anyway?" I explain weakness, tiredness, etc. The Dentist and hygienist laugh and both say maybe they have it too, then.

So do you think you got this because you are a workaholic?

Coworkers ask if I want to do Zumba. (I guess they really don't understand how I feel...I can barely walk upstairs).

"When are you due?" My answer is always three months.

Why don't you try Weight Watchers? That always works for me when I need to lose those extra 5 pounds after Christmas...

In a Christmas card this year: "If you have your health, you have everything!" Gee, thanks for letting me know I have nothing!

Just decide to be happy/healthy/stress-free.

You'd gain muscle strength if you'd do more.

Maybe you should start taking more Vitamin C, Zinc, etc....

If you exercised, you'd have MORE energy.

Have you tried a juice fast?

How often do you eat at McDonalds? It could be fatty liver disease.

Well, if I stopped exercising, I'd gain weight too!

How much of you doing nothing is necessary, and how much is you just trying to conserve energy?

You'd be able to sleep at night if you just learned to shut off your brain.

Well, that's a relief! The endocrinologist said there's nothing wrong with you!

If there was something wrong, it would have showed up on a test or MRI by now....

It's not good for you to stay stuck in the house all the time. You need to try and keep up your regular routine. (This from an endocrinologist)

Well, at least it's not cancer! (Or ebola/ flesh eating disease/ what I had 10 years ago)

When you hear hoof beats...think horses, not zebras.

It's just low Vitamin D.

You must be depressed.
"Don't you get bored sitting at home all day, not working or going anywhere?"  As if I'm actually sitting at home all day doing nothing...

Oh trust me, I know all about hormone problems. Last week I had THE WORST PMS!!!

After I explained to a coworker about Cushings, she said to me: "My niece has weight problems so she went to an endocrinologist and after she did some tests to see if it was a hormone problem, which it wasn't, she did some diet and exercise and it worked! You should do the same." I just turned my back to her.

Have you tried walking?

When explaining why surgery didn't bring a cure: "Doctor's just tell you the worst-case scenario.  Stop being so negative!"

(These posts are shared with permission of the original poster's, from a Cushing's support group, edited by me for typos and clarity.)

Sunday, April 13, 2014

How many spoons do YOU have?

I know I've linked to the spoon theory before, but it is such a good analogy and so fitting, I think it is worth another look.  This time I was brave enough to go through my day's routine and come up with a basic idea of how many spoons certain tasks require, and come up with an idea of how many spoons I actually have right now.  Every time my number of spoons drops significantly as my disease progresses, it is shocking and unbelievable.  Sometimes it is gradual (because I do have more spoons in a high than I do in a low) and less noticeable, but there have been a handful of times when my spoons just disappeared and I hit a new "baseline" and had to re-adjust my days to what I am capable of.  I'm leery to post this because of the attacks and lack of help we have received in the past, but I think people who are learning and suffering need to know they are not alone, and also, be spurred on to action now.  You need to fight now for that diagnosis and treatment that you need, or you will start to lose your ability to do so.

I'd say this week I've had roughly 20-30 spoons per day. Hard to know exactly since every day is different both in the number of spoons I have and the number of spoons I need.  I generally don't know upon waking that I have more or less, I just find out when I run out.  It doesn't hit you gradually, either you have the spoons required or you don't, and when you don't, you're done.  Resting doesn't bring more, and using more today does not equate to building up stamina giving me more tomorrow.  That is something few understand.  That system in my body is broken right now.  Every system is, really.  Overdoing it can lead to the need for strong medications, hospitalization, or injury and illness.  Actually, it will.

I can count spoons really easily now that I have so few!  So here goes:
1 spoon to get out of bed
1 spoon to pick out my clothes
1 spoon to use the restroom and put on deodorant in the morning.
1 spoon to brush my teeth and comb my hair.
1 spoon to weigh myself and note my symptoms (I track them) for the last day/this morning.
2 spoons to actually dress
1 spoon for each time I go to the bathroom (and then back to my chair) throughout the day
2 spoons for each time I have to correct, reprimand (yell at! lol) a kid
5 spoons to add wood to the wood stove

2 spoons for every time someone complains to me about their life and stressors
10 spoons if someone is confrontational or rude to me
5 spoons extra if it is a hot day, drawn right off the bat, and probably 5 more for every 2 hours I sweat after that
10-15 spoons to shower or bathe, and another 10-15 spoons to dry off/get dressed afterwards
5 spoons to get myself a snack (without cooking/prep involved)
15 spoons to make food that involves cooking at all or prep time (ie, preheating the oven, boiling water, etc. not "cooking from scratch") 
5 spoons to help a kid get dressed, with shoes and coat (I have 6, but not all need help)
5 spoons to walk to the car
5 spoons to pick up some extra garbage or dirty clothes as I walk to the bathroom (added to the 5 spoons for going to the loo)
5 spoons to undress and get ready for bed

5 spoons to socialize with others (it takes energy!)
10 spoons to play a video game that is timed (So I just can't/don't)
10 spoons for looking at bills (for the stress/anxiety it brings, along with the confusion of hospital billing and insurance) 
2 spoons for answering the phone each time it rings (I don't know who is calling and I am not a phone talker. Britton and mom have their own ring tones on my cell, which helps)
5-20 spoons for someone coming over to visit my house

10 spoons if I let myself think about how we will manage another surgery recovery (if surgery actually works this time)

So, now start to count up your day (and healthy people do FAR more than this because I did far more than this) and when you hit 25 spoons, stop.  See how far you've made it today.  What happens for the rest of the day?  I am not able to nap or just "do nothing" for the rest of the day.  Did you notice I don't have any "fun" activities on there?  I don't usually get to do those either, despite having many interests and abilities, because the choice has already been made that family come first and I do not have the energy for extra.  I wish I did, but you do what you have to do to survive.  Right now my creative outlet is in the form of online posts and energy conservation.  lol  And my method of serving and interacting with others is also on the internet.  I have a continual stream of new "friends" on facebook, Cushies, who are looking for support and information.  And I LOVE to help and teach others.  In real life, I only see two adults: my husband and my mother, with the exception of when I leave the home (almost exclusively for church, about 2-3/4 Sundays a month --but getting to church and being there costs me about 50 spoons, so you do THAT math).  I don't really get visitors, and that is just as well, because I don't have the energy for that either even though I miss having friends and doing fun things.  Heck, I miss cooking and cleaning! 

I know it is hard to understand, and people really cannot fathom it because it is so foreign to what they know and their norm, but I hope this has helped explain some of what it is like on a daily basis.