Sunday, November 11, 2012

Migraine and 30 Days of Thanksgiving

Chronic Migraine makes it difficult to concentrate on the good things in life, yet at the same time makes it even easier to appreciate them.  I really have been very blessed in my life - I've had dreams I made come true, and I have a loving family and good friends to share those dreams with. 

When we're hurting, it seems the pain is about all we can think of, doesn't it?  Nothing else seems to get through unless we make a concerted effort to go beyond our pain.

I'm reminded daily of the things that my chronic Migraine and other illnesses have taken from me.  Stolen from me.  It's easy to become bitter.  Resentful.  Thinking positively is SO important when I'm hurting.

Then on those rare days when there is a break in the pain, something little happens and it feels like I've won a million bucks! You just can't squoosh me on those days.  Sometimes I know I can be horribly annoying because I just can't seem to stop smiling.  I am and have always been a glass half full kind of girl!

This fall has been especially difficult for some reason.  My pain levels have been higher.  My autoimmune flares have increased in frequency and severity.  Migraines have gotten worse, and I have added different headache problems on top of my normal Migraine stuff.  I knew I needed to pay special attention to those things that keep me going, because I don't want to wallow in negativity that can be so infectious.  So, I decided to participate in a challenge - 30 Days of Thanksgiving.

The idea is to write somewhere each day - Facebook, Twitter, this blog or any of the others in which I participate - and mention something I'm especially thankful for that day.

I'll admit it... the last two weeks have been difficult for me, so this task isn't always as easy as it should be.  When I'm feeling good, all I can do is think about the wonderful things in my life.  When I'm feeling lousy, well, I'm more likely to feel like grumbling or venting than counting my blessings.

30 Days of Thanksgiving has been good for me though.  It pushes me to remember how blessed I really am.  It challenges me to look beyond what I am experiencing in the moment and remember what it is like to feel good.  The big picture is more important than the small stuff.  I wake up in the morning wondering what is going to happen that day that I can write about the next day.  I find myself looking forward to the day and its possibilities, even when the pain is overwhelming me.

In a season where it's so easy to be reminded of all the things we can't do, how do you keep yourself on track and remember to be thankful for the blessings you have?   

This post is my response to the November 2012 Headache and Migraine Disease Blog Carnival.   

A blog carnival is a collection of links to a variety of blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with unique opportunities to share ideas on topics of particular interest and importance to us.  This month's challenge was:  Giving Thanks: What are you thankful for in your life despite living with a headache disorder or migraine disease? How do you stay focused on it when life gets hard? 

Live your best life,
Ellen Schnakenberg
~patient educator and advocate


Thursday, November 8, 2012

Migraine Myths: Opiates, Narcotics and Glutamate

Migraine factoid: 

One more reason opiates/narcotics can be dangerous for Migraineurs: they leave residual glutamate in the neuronal synapses, which may render other therapies ineffective.  

Glutamate is the working end of MSG and is an excitatory neurotransmitter which can be a potent Migraine trigger.  It has been placed at the top of a cascade that too often results in Migraine attacks.  Examples of these drugs include Tylenol 3, morphine, hydrocodone, oxycodone, Oxycontin, Dilaudid etc.

Here is a post I wrote some time ago re: glutamate and how it works in our brains, as well as a list of other names this nasty little neurotransmitter can hide under in our food, cosmetics and other products.  We need a balanced amount of glutamate to live, but keeping that balance is tricky indeed.

Anything that potentially renders our other therapies ineffective should be avoided if at all possible.  

It's sad, but many Migraineurs, especially those that are chronic, tend to think that their doctors refuse to prescribe opiates and narcotics for their Migraine pain because they don't believe how bad the pain is.  Please understand - this is untrue and those who perpetuate this lie are not helping patients get better!!  

   Silver Creek Falls, Oregon Photo copyright 2011 Ellen Schnakenberg

The truth is, having Migraine is bad enough, but can you imagine if it got worse?  That is what opiates/narcotics can do for us.  Yes, it helps the pain temporarily, but the damage it can cause can be long-lasting.  If it help an episodic Migraineur transform into a chronic situation, so much the worse. 

As an advocate, I do believe there are times when treatment with opiates and narcotics are appropriate.  This should be a last option however, not a first or second line drug to help with attacks.

If you suffer episodic Migraine or chronic Migraine, please talk to your doctor if you are still using opiates or narcotics.  These medicines are designed to help us feel better, but they do nothing to get to the root of the problem which is the Migraine process itself.  It's true, we want relief from the pain, but that's only the tip of the iceberg.  We don't need pain relief, we need something to abort the process or prevent it in the first place.  

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Wednesday, November 7, 2012

Migraine and The Importance of Friendship

Chronic Migraine can suck the life and breath right out of a person.  Living with it is exhausting... that's the only way I can describe it.

What makes living with chronic Migraine, lupus, Sjogren's syndrome, dystonia and all these other comorbidities easier?  People who love you.

Today I am so thankful for the friends I have, those who have stuck by me through the best times when I tend to be overly enthusiastic and polly-anna cheerful... and the worst times, when I tend to close myself off in favor of disappearing into a pit of selfishness and despair.  The ones who listen when I blabber on and on, and are there to lift me up when I need it.  These are the same people who kick me in the tushy when I need it too.  

Good friends are like that - we can count on them, and they can count on us.  

         Photo copyright 2011 Ellen Schnakenberg - Tyki the Havanese

I can only hope I have been a good friend to those I feel close to.  To you.  I do try very hard. My heart goes with you wherever you are. 

So today, I am telling my friends "I LOVE YOU!"  If I could shout it from a rooftop I would.  This is my rooftop today.  

Do me a favor... place your right hand on your left shoulder and hold it there.  Place your left hand on your right shoulder.  Now close your eyes, take a slow cleansing breath, and squeeze gently.  This is a hug, from me to you.

I may not talk to you every day, or even every week or every month.  That's okay because I know that true friendships can endure the test of time and distance.  WE endure the test of time and distance... and chronic illness.


Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Tuesday, November 6, 2012

Desiderata - Peace for the Mind, Body and Soul

I ran across this video that includes the words of Desiderata by Max Ehrmann, spoken by Les Crane.  It made me smile today.

God created the universe, and His plans for our life are often hidden from us.  Those of us struggling with chronic illness tend to forget that our sight is limited.  However, I know that I am where I am supposed to be this day...

"...You are a child of the universe.  No less than the trees and the stars.  You have a right to be here.  And whether or not it is clear to you, no doubt the universe is unfolding as it should..."

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Thursday, November 1, 2012

Migraine and Overgrowth of Bad Bacteria Part 2

Migraines respond well when we maximize our health, and this includes the health of our digestive system.  Bacterial overgrowth may not directly affect your Migraine attacks, but it may have an indirect influence that shouldn't be ignored.  It can be so easy to fix - if you know you have the problem. 

In part one, we created an analogy of cows and deer, grass and weeds to describe how good and bad bacteria work in the digestive system.  Now we'll talk about why this is important to know...

Feeding the good, starving the bad

To have healthy cows, we must be sure that the grass in our pasture is healthy.  If all we have is weeds, then the only thing we have that can survive is deer, and we don't want deer.

In this analogy, we need to feed our good bacteria.  Good bacteria especially love to be fed fiber.  Yep, the same fiber found in bran muffins, apples, celery, oatmeal and lots of different good-for-you foods.  Healthy bacteria need 30 grams of fiber each day.  In those patients who have diets low in fiber, it is not unusual to see a multitude of bacterial overgrowth related problems including diarrhea, constipation, yeast infections and malabsorption to name but a few.

By keeping the pasture healthy, the cows will proliferate and our guts will be full of good bacteria, with few bad bacteria to complicate things. Bad bacteria cannot eat fiber.  They exist on sugar.  Sugar comes from carbohydrates.  Those whose diets tend to be low in fiber also tend to be high in carbohydrates, so is it any wonder that they are sick?!

The ideal diet for human beings is one that is low in carbs and high in fiber.  We need animal products to survive (vegans supplement the missing nutrients) but we subsist primarily on fruits and vegetables - this is how our bodies were designed.  The average American diet today is outrageously high in carbs and so low in fiber that the majority of people live in a constant state of digestive upset and low or errant immune function. 

You medicine could be making you sick

The number two reason for bacterial overgrowth is a direct result of medical treatment.  The medicines we are taking to help us can in reality make us very ill.

It's unfortunate that most doctors have begun to rely heavily on medicines to do the work that can be done without them.  The fact remains however, that Migraineurs depend on many medicines to get them through life with Migraine disease.  This means that it is really important that we learn how to optimize our good gut bacteria so we can stay as healthy as possible, hopefully minimizing the chance that episodic Migraine will transform into chronic Migraine.

The most common medicines to alter gut flora balance are antibiotics.  Since stress can also alter gut flora balance, it's possible that any treatment or disease can contribute to bacterial overgrowth, but antibiotics kill the very bacteria we need to survive.

Antibiotics are designed to kill bacteria and they are very good at their jobs.  However, they are very non-specific.  They kill everything.  All bacteria.  This means that they kill the bad bacteria in our digestive system and any infection we might have, but they also kill off all the necessary good bacteria as well.  We re-populate our gut flora after the antibiotics have been completed (you really do NOT want to ask me how) but because our diets are so poor in fiber and high in carbs, we tend to become riddled with bad bacteria that can be so harmful to us.

How harmful?  

E. Coli is very well known by most everyone.  Have you ever wondered about it?  How and why it gets into our food chain?

A long time ago, people realized that feeding cows a lot of sugar made their meat very sweet.  So, farmers "finish" feeder cattle off with enormous amounts of grain and sugar over a short period of time.  This results in a very sweet tasty steak, but because they have essentially eliminated all good bacteria from their digestive systems, they are now riddled with bad bacteria including E. Coli.  Their livers can get fatty and swollen and sick.  If a steer was forced to remain on this diet for long, it would actually die.  When the animal is butchered, the proliferation of bad bacteria is more likely to be accidentally spread to the meat, causing illness in those who eat it.  This is one of the causes of the immense resurgence in grain fed beef - the meat itself is healthier because the cow it came from was healthy and fed a healthy species appropriate diet.

E. Coli is in your digestive system right now.  It is one of the main *bad* bacterias we have in us all the time.  The trick is in learning to keep it under control so that it doesn't make us sick.  We do this by starving it, and by feeding our good bacteria.

So what do we do if we have had antibiotic therapy?

Thankfully the difference between good and bad bacteria was discovered a long time ago.  Good species necessary for our survival were cultivated and can be purchased as a supplement to re-populate the digestive system.  We call these healthy bacteria Probiotics.

Physicians do realize the benefit of probiotics, they just don't typically make it a habit of prescribing them, which is unfortunate. Patients who are forced to undergo prolonged antibiotic therapy are however, required to take massive doses of probiotics to keep the gut populated with helpful bacteria.  Remember, without it we would die of malnutrition.

There is much to discuss when we start down the path that connects the gut and the brain.  More posts will follow later on this vital connection.  The facts are fascinating and might help you in your journey toward better health :)

Live your best life,
Ellen Schnakenberg
~patient educator and advocate


Wednesday, October 31, 2012

Migraine and Overgrowth of Bad Bacteria Part 1

Migraine causes patients to take a lot of drugs.  We try many things to control our Migraine attacks and to stop them when they occur.  We change how we eat, sometimes not for the better.  We are stressed because we aren't functioning at capacity.  Our Migraines themselves cause us to crave things that cause digestive trouble. We overdo when Migraines aren't hitting us.  Like a vicious circle, singly and in combination these things can create problems in our digestive system that in turn can influence our Migraine attacks. 

So, let's explore how this happens so we can fix the problem and stop the vicious circle that may be contributing to our attacks.

It's all about cows and deer, grass and weeds.

Okay.  Not really.  But cows and deer, grass and weeds make a pretty good analogy of our digestive system and how bacteria overgrowth happens.  It also helps patients understand how to fix the problem.

Our gut (digestive system) contains more bacteria cells than the number of cells our entire body itself is made of!  Without good bacteria, we would eventually starve and die of malnutrition.  Good bacteria give us vitamins, helps our immune systems and are necessary to our survival as human beings. Bad bacteria makes us sick and stops our digestive systems from working correctly. 

We're going to explain this by dividing the bacteria up into groups:  Good bacteria and bad bacteria.

Good bacteria = cows.
Bad bacteria = deer.

Cows and deer both have a place in the world.  They both serve a purpose.  They are similar because their diets are similar.  They live in a similar environment.  However, in this analogy we like cows much better than deer because cows give us milk, meat, leather and all kinds of wonderful things we use every day.  We need cows.  Deer however are a bit of a pain.  They wreck cars, damage fences, eat crops and gardens.  In this story, the cow are the good guys, and the deer are the bad guys. 

So, our gut contains billions of cows and deer.  Check.

When we eat, our gut also contains the food we have consumed.  This is the food for cows and deer. So...

Gut = pasture

Cows and deer are both hungry.  They must eat to survive.  There is normally a balance of good and bad bacteria in the gut that keeps us healthy.  They share the same pasture equally and everybody is happy and healthy.

Pastures do not just grow however.  They must be maintained.  Farmers seed them, fertilize them, weed them and care for them.  If the farmer doesn't maintain his pasture properly, weeds begin to grow.  The grass is not healthy and it is eventually choked out by the weeds. In our analogy:

Cows eat grass.
Deer eat weeds.

If we don't eat the proper foods and maintain our gut/digestive systems properly, our pastures begin to suffer.  They become riddled with weeds, the grass won't grow properly.

Cows begin to die.
Deer begin to reproduce rapidly, taking over the farm.

When the deer outnumber the cows (the good bacteria are fewer than the bad bacteria) we have something called Bacteria Overgrowth.  Bacteria overgrowth hurts our immune system, contributes to leaky gut syndrome, gluten intolerance, diarrhea and other digestive issues which may contribute to Migraine.  Candidiasis, yeast overgrowth, diarrhea or constipation and frequent infections can signal that there is insufficient good bacteria in the gut.

Many things can contribute to bad pasture management and too many weeds taking over the grass.  The two most common contributors to bacterial overgrowth are:
  1. Bad diet
  2. Antibiotics and medicines
Tomorrow we'll talk about how bad diet and antibiotics and medicines can cause this difficult to diagnose problem, and how easily it can be solved. 

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Tuesday, October 30, 2012

The Year I was Dead - Migraine and Voting.

Voting when you suffer a chronic illness like lupus, Sjogren's Syndrome or Migraine is difficult at best.  Still, I always do my best to get to the polls, even if that means getting someone else to drive me there.  Today I received notice that my voting record had been audited.  I didn't even know just anybody could do that!  When I saw that they had recorded that I did not vote in 2004 I was a little miffed.  

Would it surprise you to learn that in 2004 I was told I couldn't vote because I was dead?

It sure surprised me at the time! 

I had finally made it to my polling place.  It was dark and there was a line.  When I got to the table where they asked my name, they looked and looked.  My hubs and son were there, but not me.  

Where was I?  The ladies helping with voting knew me, and they were as shocked as I was.

I insisted that I wanted to vote.  So phone calls were made, and eventually the mistake was found.

I was listed as having passed away nearly a year before!

Needless to say, the reports of my death were greatly exaggerated, so they provided me with a provisional ballot and I was "allowed" to cast my vote. 

In other years I have had difficulty voting.  Fluorescent lights in my polling place triggered a Migraine aura that made it nearly impossible.  I have had to wait out a Migraine so I could drive myself.  I have carried a barf-bag with me in the car because I was afraid I wouldn't make it the 6 miles to vote.  I have been stuck at home without a ride, and missed voting.

Voting isn't just a privilege, it is a responsibility.  As far as I'm concerned, if I don't vote, I have no right to complain about the results.  

This year I'll be voting.  Will you?

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Monday, October 29, 2012

Happy Migra-ween!

When I stepped into JibJab to begin creating a few Halloween e-cards and videos for friends and family, I saw this one and my tongue-in-cheek humor just couldn't resist.  It might not be perfect, but it comes about as close as anything I've seen lately to illustrate the fright, pain and helplessness of an attack.  I'll include the link to the video, so if you want to share it with your Migrainey friends, you can!

Happy Hallow...errrrr....Migra-ween!

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Sunday, October 28, 2012

On Disappointment and FDA Comments from Migraineurs

The FDA hearings were this week, and fellow advocate Teri was there to represent all 37 million of us with Migraine disease, as well as those with other headache disorders.  I kept the home fires burning and spent the time networking, asking for patients to be proactive and comment to the FDA in an effort to get them to recognize Migraine and headache disorders.  

Unfortunately, not many patients seemed to see the importance of their voices, and were reluctant to comment to the FDA, despite the agency's solicitation for just such patient action.  

I became frustrated and disappointed.  I voiced that frustration in a couple online platforms.  Unfortunately, some patients did not understand my purpose in airing these frustrations, so I decided to talk a little about it here...

Patients wrote to me that their lives were busy and they didn't have time to comment. Their reasoning was that they have to triage their whole lives and that commenting wasn't as important as playing catch-up.  They felt that by saying I was disappointed, I was making patients feel even worse because we spend the majority of our lives disappointing everyone around us and adding to that wasn't a very positive thing.  They felt I was scolding them by stating my disappointment.

Here is my response:   

I do understand triage, very well.  As a first responder and a CERT instructor, I have even taught how to do it appropriately. 

Here is triage in a nutshell:  The most important, life threatening things come first, so long as there is something we can do about them (no lost causes).  Those who can do for themselves are left for later, and those things hopeless or near hopeless... last. 
I do understand our need to triage, as I find myself in that situation every day, as I am sure most patients do as well.  It really is a way of life for us, isn't it?  My disappointment was truly not meant to sound scolding in any way.  I am nobody's mom here.  We all deal with disappointment and because we are sick we let people down.  It was disappointment in the placement of this VITAL action in the life-triage of 99% of patients who were making choices that I was voicing.  It was an effort to get patients to stop and look at what they are doing.  HOW they triage.  We had all tried the much preferred "positive" approach, all over the web, and it is failing.  Even in a special positive and proactive group, it was failing.  Let me explain why...

My disappointment was genuine and tearful, and had to do with the fact that in a group designed specifically for positivity and acting proactively, at the time there was less than a handful who had even replied to the request for action, let alone actually had done anything.  Teri went to DC using her own funds and time - while Migraining I might add.  We're a team and I covered what I could as well as spent 12 hr days talking to people trying to get them to do what is so vitally important for all of us - getting the FDA to pay attention to these disorders so we can get some medicine or treatments that will be helpful... finally.  Even just removing the runaround for those treatments that are already waiting for approval would be amazing!  There is a short time limit on this and its importance truly cannot be overstated.  Not possible.  When I said vital, this is exactly what I meant.  It is life-saving. 

I honestly think that the majority of patients highly underestimate their power where this is concerned. That was my point.  This could be life saving for some and life changing for so many - myself included with those reading the post.  To me, this is of the utmost importance.  Little is more important than helping patients who are desperate.  Period.  There is little that takes precedence in my life for this one short week than getting everyone I know to place a comment.  We had premature sick triplets born last week, my MIL married 4 hrs away, a huge family disagreement, a trip to Des Moines for national boards, a dog diagnosed as dying, and I'm getting ready to leave for Scottsdale.  I do understand the meaning and importance of playing catch-up. 

This is what we as advocates have to consider... what do I tell the next person I talk to who has a handful of pills in their hand, or a razor blade or gun?  That there is no help for them because nobody would write a 2000 or less character note to the FDA last week?

That is the kind of pressure we are under as advocates, each and every day.  Lives literally hang in the balance.  Patients see their playing catch-up as important, and I'm not saying it isn't.  I'm saying these lives are more important, IMHO.

Can you imagine Teri's pressure, knowing that she was the only one there to speak for 37 million suffering people?  She was scared to death, afraid that if this didn't go thru, it would be her fault! 

When the next Migraineur commits suicide or dies, this is what we will be thinking.  That we didn't do enough.  That it could have been prevented.  That we could have done better. 

You can't imagine the frustration we feel as advocates.  We literally do everything in our power to help the masses despite our own health issues etc, yet the masses often do nothing but vent and complain and won't take 5 minutes out of their day to do something that could actually BE impactful.  I'm not saying that is everyone because that simply isn't true.  Raw statics say the majority turn their heads however.  Isn't that sad?  

It makes me weep.

Between you, me and the fencepost, we are on the computer talking with patients all day long, 7 days a week, sometimes into the early morning hours when they need help.  We do it because we love patients and can't stand to see them suffer.  We know that they will get the info from us they want or need, then disappear most of the time.  This is actually good, because it means they were usually helped.  We Migraine and lay in bed in agony, typing one word at a time trying to help others between running to the bathroom to vomit.  We let our houses become a mess so patients aren't neglected.  We miss family time and give up any semblence of a life... for patients.  We don't get paid for that, or even thanked - that's not the point.  We are just doing whatever we have to do to help people because we've been there.  We do it because it NEEDS to be done.  If we don't step forward, who will?  That is the triage of necessity. 

Lives trump everything else. 

We feel so completely defeated when we ask those we have helped, for 5 minutes of their time for something so truly important, and they refuse.  Really, that's what not doing it is - a choice - a refusal.  There may be a good reason why a patient can't get to something really long for a day or two, but a single sentence is sufficient here if a patient can do no more more - it doesn't have to be a long letter.  It's true, we feel very let down by those who don't have time for a sentence. 

Most patients are under the delusion that someone else will write in, that their voice isn't important.  The opposite is true.  When we beg tens of thousands of people for action and get 50 - 100 comments, that is truly sad.  It has happened before!  We've been here before. 

The fact of the matter is, the government and the FDA are literally laughing at us right now.  Laughing.  Most people don't realize that. If the patients who are hurting don't care enough to write, why should those in charge pay any attention to us at all?  So, they don't.  The squeaky wheel gets the grease.  And we go to DC, walk until our feet blister, and beg and plead each year for action, and each year we are turned down.  Not because our arguments aren't good enough - because they all agree that what we say needs to be heard - but because the patients won't do anything themselves.   It's all about numbers.  And we have none. 

I need to know that there is a future for my Migraines to be treated.  This keeps me going. Without that, I would be dead.  Plain and simple.  When no one writes, it feels personal.  It means no one cares enough to make it a priority in their triage.  That cleaning their toilet, unpacking a suitcase or sweeping their floor is more important.  When no one writes, I know that there is no hope.  WE NEED that hope.  

So, my post was not intended to be negative.  Actually, the opposite was its intent. 

It was intended to get people out of bed and to their computer for something that collectively could change our world.  It was intended to help them realize the importance of being proactive and taking action.  I hope that the only thing members got from my post was not just thinking they were being scolded.  I hope they got that this is important.  Vital.  Worth your 5 minutes.  I hope that it made them feel powerful.  Needed.  Important.  Because that is where the truth lies.  Leave sweeping your floor until tomorrow so the comment can go in today.  

Without you, and others like you, I might as well give up.  We can't let that happen.  We have to keep the ball rolling.  All of us.  Collectively.  The dirty floor will still be there tomorrow. 

So I realize now this could sound like a scolding again.  Please don't take it that way.  This is my way to help patients understand the scope of the issue, the best way I know how.  To understand where I was coming from in writing what I wrote.  To understand what drove the post - making members feel that they are important enough, powerful enough to matter where commenting is concerned. 

I'm doing my best.  I really, truly am. 

I encourage patients and friends to let me know if you think I overstep the line at any time.  That is important - you are important!  I am far from a perfect person.  I will make mistakes just like everyone else.  In this case, the post wasn't necessarily intended to be a feel good post as one might think of as positive, but a proactive post, and positive in a different light.  

As always, I welcome any feedback patients might have.  :)  It's good to get a conversation like this going sometimes...     

Friday, August 10, 2012

Cleaning, De-cluttering And Organizing With Chronic Migraine and Illness

Make absolutely no mistake.  My name is Ellen Schnakenberg, NOT Betty Crocker.

When it comes to keeping my house in order while suffering near daily Migraines as well as chronic pain and exhaustion from autoimmune attacks on my body, I have a long way to go.  Learning how to do it has been a process however.  One that I'd like to take a few moments and share.


When my kids were little, life was all about them.  Whether or not the house was cleaned each day seemed fairly unimportant when Migraine was already stealing so much of the good stuff of their childhoods.  The important stuff got done, when it needed to be, but not usually much before that.  In our restored turn of the century home I had the option of a living room and foyer that was kept spotless so visitors could enter and I wouldn't be completely horrified.  Those two rooms with my formal Dining Room made life doable, because I could relax with the other personal rooms.  Daily damp mopping took moments, yet kept the wood floors spotless and ready for company at a moment's notice.  Keeping the clutter to a bare minimum made for easy dusting.  Remembering that we were in the process of restoring the home and therefore living in perpetual construction was also important.  It's hard to have a "perfect" house when you're dodging ladders and paint cans all day.

At one point I had the spare cash to hire a team to come in and help me clean once a week.  When we moved, they helped me pack.  I had no one else to help me - sad, but true.  If it weren't for these fabulous ladies, I think my house and my family would have completely fallen apart.  If there is a way to find even enough cash for 2 hrs by a pro once a week or even once a month, I think it's worth every penny and more.


When the kids were adolescents, life was still about them.  Their activities still took top billing, because making those experiences family oriented were key to keeping our family together in the face of chronic illness.  You've gotta have priorities, and sometimes something has to give. 

However, the kids were also bigger and much messier.  Hubs and I disagreed frequently about how much responsibility they should have, and unfortunately, I often didn't have the strength to push my point too far.  Things suffered much more without help and this caused a lot of stress for me personally.  It felt like I was failing, and all around me were the reminders that I wasn't getting it all done.  In the end, I knew it was a temporary situation.  I closed my eyes and got the important stuff done and ignored the rest. 

At one point I tried the Flylady method of cleaning.  I learned a lot, much of which I actually apply in my work as a patient advocate.  I highly recommend it for those who can't seem to find the time to do the basics and feel overwhelmed that things have gotten away from them to the point they don't know where to begin fixing the problem.  I learned that 15 minutes a day is all it takes to keep things basically clean, and that one month spent on a single room, multiplied by 12 a year is enough to keep the rest of the house pretty close to spit spot.  In my exhaustion and pain, having someone to remind me of my tasks for the day was helpful, although also sad.  It wasn't that I didn't take pride in my home, it's that I took more pride in being a mom.  Like a knick-knack, I had to put my expectations on a shelf for later.  Much of getting through this period of time was about closing my eyes and reminding myself that this is a phase... a temporary situation that will eventually, someday be better. 


I wish I could say it got easier when my kids moved out.  The problem is, their bodies moved, but a lot of their stuff is still here.  For instance, I currently have a huge living room, but 1/3rd of it is taken up by an enormous massage table being stored here until the day it has another more permanent home in my daughter's clinic.  The same goes for a piano given to her, and a bed and dresser, and boxes and boxes of stuff. 

Not helping the situation is the fact that we have been in the middle of an enormous home renovation that began over 6 years ago.  We're literally living out of boxes, and until the contractor comes back to finish the job, it's not likely to change a whole lot for a while.

Honestly, painting a room or hanging curtains or artwork is a great way to get me enthusiastic about keeping it in order.  I still have virtually no help, but if I can walk into a room and it makes me smile, for whatever reason, I'm much more likely to take care of it when I'm hurting.  My desire for a beautiful space has GOT to overcome the pain and exhaustion I feel.

My current mantra is "When in doubt, throw it out."  Okay, that's been my mantra since I saw a hoarder's home years ago.  Still, it applies.  De-cluttering is key to keeping things in order.  The trick is letting go of the stuff.  One box for *things I love* to be stored - one box per room ideally.  One box for *give away*.  One box for *throw away*.  If it hasn't been used in 2 years, I don't really need it.  The exceptions are for those things packed away due to our renovation that can't possibly be used.  When all else fails, clear a room out by taking everything out of it, putting it onto the lawn and then dividing it.  Only put back into the room those things you're willing to clean.  The rest goes into one of the three boxes.

Sound too hard?  I plan for those days when I clean big like that.  It takes about a week ahead of time to be sure I'm avoiding ALL possible triggers, taking all meds, and then the day I feel good, I get out of bed, take all the pain meds I need to get me thru the day, then go for it the best that I can.  When done, I go to bed and sleep, planning on being super sore for at least a week following.  While I'm sore, I still get up and move about, taking time to enjoy my *new* room, reminding myself that there is a reason I put myself through such an ordeal while reminding myself that "less is more" and it doesn't ever have to get that way again!

An option many patients have that I don't here in the middle of God's nowhere, is a group of friends to help them.  What a joy it would be to get together once a week and clean one house, then the next week go to another.  Many hands make light work as the old saying goes.

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Wednesday, August 1, 2012

My Beginning in the End - "Stronger"

Dear Migraine, Lupus, Sjogren's and Dystonia: 

There are times I let you get to me.  Days when I feel that I can't even breathe.  The pain of my cries are only surpassed by the agony of choking back the sobs.  You didn't think that I'd come back swinging.  You try to break me, but you see...

I remember:

"You think you got the best of me. Think you've had the last laugh. Betcha think that everything that's good is gone. Think ya left me broken down. Baby you don't know me cuz you're DEAD WRONG.  

You know I dream in color, and do the things I want. What doesn't kill you makes you stronger. Stand a little taller, just me myself and I. Doesn't mean I'm lonely when I'm alone! What doesn't kill you makes a fighter. Footsteps even lighter. Doesn't mean I'm over cuz you're" here. 

"Thanks to you I got a new thing started.  Thanks to you I'm not the broken-hearted. Thanks to you I'm finally thinking about me. 

You know in the end the day you" came "was just my beginning in the end... "

Music video and lyrics by Kelly Clarkson performing Stronger (What Doesn't Kill You). (C) 2011 RCA Records, a division of Sony Music Entertainment

Tuesday, July 31, 2012

Online Patient Onions - the Advocate Sounds Off

Are you an onion as an online patient?  Let's find out...

Facebook, Linked in, Twitter, Pinterest, Learnist... all these are social media platforms in which health advocates frequently participate.  As advocates, we are often asked to *friend* someone we have never met before because of our advocacy activities.  We're considered patient *experts* by patients and physicians, and when patients want to talk to other patients who can help them, we're the ones they're looking for.

What is your personal policy on these requests?

Most advocates will do a cursory check to see if the person requesting the add is someone that appears to have something in common with us, or just another spammer.  Provided the person requesting the add seems sincere, most advocates will happily add them in hopes they will bring something useful to the community and the conversation, or that there is something we can help them with.  My policy is that I don't *unfriend* people unless they are spammers.

Most of us are advocates/educators because we've been through the mill ourselves and want to try to help other patients to avoid the pitfalls we have already encountered.  We open ourselves up very personally to people we've never met in hopes that they might find something useful in our stories that will be helpful to them.

However, although we as advocates are members and even sometimes leaders of online communities, that doesn't mean that WE are communities.  Our personal pages on these online platforms are not communities nor are they democracies... they are personal. 

As advocates we spend most of our lives helping others with their questions etc.  But have you ever wondered - where do advocates go when they need support or information?  That's where our own pages can be so really important to us.  It is the one little place we have that we get to express ourselves as ourselves.  It's our little place to open up and be a little crazy or hopeful, weeping or joyful, or just tell our friends about our day or our passions.  It's our safe haven.

I admit I do tend to take it a little too personally when someone asks for an add and then shortly thereafter leaves without an explanation to me, even though it's likely they just didn't find a *friendship* to be a good match, or the information I provided those days didn't match up with what they were looking for. 

The Importance of Tolerance and Respect

On one hand, I would really like to know why someone feels the need to secretly drop me instead of simply remaining *friends* and unsubscribing to me so I don't pop up in their feed five times a day - something I forewarn most new *friends* about.  This is usually the result of not knowing how to use the tools of the platform.  If you don't take the time to get to know someone, how can you hope to well... get to know them?  I appreciate those who take the time to give me some sensitive feedback about why they are unhappy or leaving.  Fortunately some do, often just to let me know they found what they were looking for education/information wise and are moving on.

On the other hand, I am just a human being.  There's nothing special or different about me other than my willingness to share my vast and very personal experience.  This means I also have feelings.

Because I am an advocate and work with an incredibly diverse group of individuals, I try to refrain from things that can cause division between my online pals.  I'm not here to push anything but wellness.  My goal is to discuss ways of coping with chronic illness. 

Politics is avoided in particular, not because I am not politically active ( I put my money where my mouth is and even write and go to Congress and state legislators to be heard each year) but because I respect the views of all my friends and am very sensitive to their passions.  I love raging liberals and some raging conservatives and tea partiers.  I don't care about your political alignments, your sexual orientation, your religion (or lack thereof), socio-economic position or if you've been to jail or drink too much.  We're all people.  We laugh, we cry, we feel pain and we all goof up sometimes.  None of us is perfect.  All are cared and prayed for on my page, and disrespect or fighting is not tolerated.  Tolerance and respect is something very high on my list of priorities and expectations of others.

That said, when it comes to my personal pages/walls etc, it is my right to put there whatever I want within the scope of the site's rules.  My wall is not a democracy. 

It's My Wall

My profile on Facebook is open to others to read and interact with, but it is my wall.  This is my blog.  When others go either place, they need to be ready to accept or dismiss whatever they find there, like it or not.  I am a unique individual (in oh, so many ways!) so it is the rare person who won't someday find something that raises an eyebrow.  All I ask of others there is to please, be constructive and be kind to one another.

Tolerance, Tolerance, Tolerance

This week I was disappointed to have received a nastygram from someone who recently asked me to add them to my Facebook page.  After being there a short time, they removed themselves from my page and sent me a lengthy private message explaining that they didn't like a quote by a famous person that I had *liked* on a relative's wall which had been shared and reshared multiple times all over the internet.  The post related to the Aurora, Colorado shootings and was taken and shared on some great places as well as some unsavory ones.  This quote never appeared on my wall or any personal page, nor will it.  The *like* was a sign of support for someone living in Aurora when the event occurred.  Although I make it a point not only not to disclose any political affiliations or personal feelings on my personal wall, but also do not put anything political on my wall.  However, Jill went on to explain that she was "shocked" at all the political posts I put on my wall.  (Say what?)  As a liberal, she stated she was "offended", although followed that by stating she doesn't judge people by their political affiliations. (???)  She went on further to say,

"I felt like this was my place to come and be with others who are in pain as I am. I have ignored several posts already, but they are making me feel like I do not belong here so I will be leaving."

No hon, this is not your place, it is mine.  My wall.  My profile.  My space.  It's your job to ignore those things you don't like (whatever they might be).  If I had actually created these posts (which I did not) this is what the scroll bar and delete buttons are for, as well as private messages to clear up misunderstandings or miscommunications.  Learn about the platform/tool before you use it.  I feel sad that you are so lonely, but that is likely to be a problem for you so long as you continue to show outward intolerance and disrespect for others and their feelings and personal spaces. 

I have an active prayer chain, maybe that is what she was offended by?  Who knows.

She ended her note by stating,

"I ... hope that you will reconsider others feeling in the future. I know, I am being a typical liberal. Poor people generally are liberals I guess."

She seems here to make the assumption that I am "rich" and a selfish conservative, but worse, that I am callous to the feelings of others.  *OUCH*

Good people don't let disagreements get in the way of good friendships and I try very, very hard, so this was just too much for me. 

I'm not even going to start the stories of growing up poor in Oregon, or living nearly 6 years now in a house that is only half finished on a farm where I had to sell my beloved horses/business because my health forced me to quit working my 3 jobs and made me virtually housebound.  Those who follow me have heard some of them. 

She obviously didn't take the time to get to know me or she would know better than to make these ridiculous insulting assumptions.  Although my family's finances are the business of no one else, I will share that today we live paycheck to paycheck, have no retirement or savings, and I buy necessities like clothes once every year to 18 months.  I am just a normal person trying to make the best of a very bad situation.  The majority of our finances goes to pay for our home and my medical needs.  I work for pay only a couple hours a week.  The rest of my time - around 13 hrs a day- is spent diligently helping people online in a voluntary capacity: 

I volunteer as a medical first responder, answering the radio whenever it calls and I am physically able to respond.  I volunteer as a CERT (Community Emergency Response Team) trainer, coordinator and member.  I volunteer on our local Search and Rescue team.  I volunteer with youth and families on a personal level.  I rescue animals, and people. I go to church and openly pray for everyone who asks.  I am a devoted friend and family member, not only to those related to me by blood, but by love and friendship alone.  What's mine is also yours, if you're my friend.

So, if you see something you don't appreciate, then send me a private message and let me know so I can be more careful next time.  I am always ready and open to learning new things and improving myself.  I am faaar from perfect.  Nastygrams aren't helpful to anyone. 

If this makes me a bad person, then, so be it.  "I yam what I yam".

Onions are a Migraine trigger for me... the sweet edible food, and the sharp distasteful people like this one.

Jill A. T. D. you made my personal Onion list for intolerance and disrespect as well as making poor assumptions followed by quick actions based on those silly assumptions.  I hope you're able to find someone else to help you who meets your lofty expectations. Maybe getting involved in a real community instead of a person's private page would be a good start.  Chronic pain is a terrible thing to have to endure all alone.

Monday, July 23, 2012

A Migraine T-shirt

Saw a T-shirt about autoimmunity that I liked, so I turned it on it's *a-hem* head.  This is what I want my T-shirt to say:

My brain can create a wave of spreading cortical depression that makes me see, smell and hear things that aren't there, takes away my ability to speak, creates invisible lightning across my face, inside my ear and down my throat.  Then while I lay alone, it pretends it's being attacked by a sword swinging, eyeball stabbing, sledgehammer wielding, vomit triggering pissed off monster for days on end, resulting in the loss of friends, family, jobs and... sometimes lives.  It does all this, invisibly.

What does your brain do?

Wednesday, July 11, 2012

Too Much Information or Too Little Education?

Today I read the excerpt from a book that, as a patient educator and advocate, really set me off.  The title of the Scientific American article is: "Can Too Much Information Harm Patients?" and it is essentially an excerpt of the book The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care (Basic Books, 2012), by Eric Topol, a professor of innovative medicine and the director of the Scripps Translational Science Institute.

I began reading with an open mind, thinking to myself  "Okay, this guy could go in either direction with this.  Let's hope it goes right."  I am all about the digital revolution creating better health care, and I foresee a lot of really amazing things in the future of medicine as a result of the changes that are becoming necessary for both physicians and patients in this new world where information is so easy to get hold of.  

But things went terribly wrong... 

The way I read the article/excerpt (you can read it yourself and tell me if I went wrong) the author feels that patients need to be kept in the dark about "extra information" for their own good.  Are we, after all, simply paranoid ignorant people without the capability to understand our own bodies nor our physicians?  Should information be withheld from patients as a result?  

My take on the author's statements lean toward this explanation:  Because we are incapable of understanding what is best for us, we simply should not be told the truth for fear we will make irrational decisions based upon that fear and our ignorance.  We will be taken advantage of because of that fear.

The word *sheep* comes immediately to mind.

This reminds me of an altercation I witnessed in a restaurant during a headache symposium which involved two folks which will remain nameless here.  The advocate was confronting a doctor of psychology who felt it was necessary and prudent to lie to patients because they couldn't mentally handle the truth.  After much discussion the two colleagues had to agree to disagree. 

I wrote about this topic several years ago, a blog entry for WEGO Health which may be found here.  I have not changed my opinion nor my disdain for physicians who are not forthcoming to their patients.  In the immortal words of e-Patient Dave (who incidentally found out by accident he had cancer, then used social media to find a cure for it) - "Gimme my damned data!"

The test's job isn't just to diagnose, but to educate - both the physician and the patient.There is no such thing as "extra" information because it is all important.  It just may not be applicable today.

The physician's job is not just to diagnose and treat, it is also to educate and support the patient so that appropriate and smart decisions are made by that patient.

While I do understand the story the author Eric Topol mentions in the excerpt, I can't help but feel this patient was cheated.  Not because he paid for a test he probably didn't need that day, but because nobody felt the need to educate him about what the test and the results might mean for him.  When he received news that there were abnormal findings, nobody took the time to educate him what those findings meant for him.  He was offered a procedure, but wasn't educated about his options.  Once he underwent the procedure he likely didn't really need, his mistake was not really discussed with him in a way that he became an educated patient more likely to make better decisions in the future. 

This patient was failed by many.

This man wasn't failed because he was told about his "extra information".  He was failed because he was not appropriately educated by people who should have known better. 

This is a country that focuses entirely too much of our efforts on fixing the problem, when we should be looking at the cause and fixing that instead!  Let's prevent disease, not wait until there is a life altering problem to do something about it.

I do advocate for testing.  However, I do that in the context of education.  Let's teach patients how to be good patients.  

Let's talk...
  1. About their condition/disease/disorder.  A well educated patient makes smart choices about their care, not decisions based on fear.
  2. About the test itself.  Are we looking for something, or ruling something out?  Why it is being done and what we hope to learn from it.  Are there other options to get the same or similar results?
  3. About their results.  What this means to the patient's specific circumstances and future.
  4. About their treatment options. What are they? What are the potential outcomes? What will likely happen to the patient if they treat, or choose not to treat?
  5. About the importance of second opinions. Life changing therapies shouldn't be initiated without at least one of these.
Give patients their data.
The fact that so many patients are taken advantage of by a system that sees them as an ATM, only serves to prove my point that the wise patient takes the bull by the horns and makes sure they are adequately educated.  There is a need for online places to go to get the education patients are being denied.  The least that a harried-doctor-without-enough-time-to-talk-to-a-patient-to-educate-them could do is prescribe a good health community to do his/her job for him.  Thankfully, this is happening more and more frequently.

Consider for a moment the impact that this "extra information" could have had when the patient in the excerpt eventually did begin to have symptoms of his condition. Think of the time he could have had to educate himself about his options.  Hmmmm.

In the end of the excerpt, the author seems to at least in part agree with me, saying that the consumer needs to be able to understand the information they're given or trouble will likely ensue.  I am just of the opinion that all information is important, because you can't use a crystal ball to see into the future and tell the patient that it isn't ever going to be important.

I would love to read the rest of his book to see if the author produces a balanced discussion, but that will have to wait for another time.

In the meantime, if you're a patient, get and keep paper copies of all lab reports and imaging reports.  Don't depend on anyone, doctor or nurse, to tell you your results.  Get them for yourself and start asking questions.