Tuesday, April 26, 2011

Disease Spirit Animals: HAWMC #26

I once was told my own Spirit Animal was a horse.  That fits me more than many might guess.  It seems fitting then that I would grow to have such a profound kinship with this powerful, sensitive animal.

When presented with this HAWMC #26 blog challenge, it was really simple to decide which spirit animals would go with the diseases and disorders I personally fight each day.

Lupus - the very name 'Lupus' means wolf.  The disease hides like a wolf in sheep's clothing.  Various stories tell that the name was derived from the appearance of the red rash/mask on a patient's face which are said to look like wolf bites.

Sjogren's Syndrome - It seems clear to me that the totem animal for this disease should be the raccoon.  This animal lives its life without any salivary glands.  In order to eat and swallow it must dunk its food into water to replicate the wet quality of the saliva most normal animals possess.  Fortunate for this animal, the salivary glands are its only weakness.  Its eyes and other glands and organs work perfectly.

Migraine - I choose the spirit animal Woodpecker for Migraine.  This animal has strength of body that Migraineurs do not possess.  They are able to spend their days pounding their faces against solid wood in their search for food, without getting a headache.  This is due in part to their specially built skeletal structure that minimizes impact during pecking.  Migraineurs suffer as a Woodpecker might suffer should their skeletal structure malfunction.  The rhythmic pecking also sounds like the pounding we feel in our heads during an attack.

Dystonia - The Alligator or Crocodile is the spirit animal for this disorder.  These animals have the world's most powerful grip.  They clamp down on their prey with a grip that cannot be loosened.  Then they do a death roll, twisting and thrashing about with all their might in their attempt to kill their prey with the mere force of their thrashing.  A Dystonic storm can be similar to the attack of an alligator or croc.  Held mercilessly in the clenches of the brain's malfunctioning signals, spasming patients are rendered helpless against its hold on their bodies.  

What is your health concern?  What animal would you choose to represent it?  Why would you choose this spirit animal?  Does the spirit animal resemble your disease, or protect against it?

Comment by Janeen on April 27, 2011 at 7:09am
Very well done, Ellen and very fitting.  I could almost feel that woodpecker pecking in my head.  Some days it does feel like I'm repeatedly slamming my face against a piece of wood.
Your description of the Dystonia spirit animal is very vivid.  As someone who doesn't have the disease but has only learned about it here on WEGO Health, it has given me a better understanding of how it "feels".
Comment by Julia on April 28, 2011 at 12:01pm
Ellen - I did not know that a raccoon doesn't have saliva glands! Excellent comparison. Whaddyaknow?

Lupus List - Don't Miss These Blogs!

May is Lupus Awareness Month.  This means another great opportunity for some great list posts!  To start things out, let's create a great list of fabulous Lupus bloggers...

Angie Phillips blog Ardent Cerebrations: Musings of a Lupus Survivor is the first Lupus blogger I began following after I was re-diagnosed with the disease a few years ago.  She has an accompanying NING group where she interacts with patients, caregivers and family and friends of survivors.  I find that she is intelligent and very well spoken, and has organization down to an art form.  She's very interactive and a wealth of information.  She's been dealing with some of the most severe Lupus symptoms for many years and comes at this from the school of "Been There, Done That".  You can find Angie many places online including Facebook and Twitter.

Tiffany Marie 'Spanish' Batista is another great blogger I really enjoy.  Her blog is Living La Vida Lupus and she too is very interactive with her followers.  Tiffany is one 'glittery personality' so full of smiles and joy and education and practical daily support... I'd love to meet someday and give her a big sqooshey hug.  Tiffany too can be found on Facebook and on Twitter.  She also has a great Facebook group called Friends Against Lupus that is well worth clicking as well.

Paul Spencer's blog is a little bit different.  Yes He's Mad is a blog that lets you track Paul and keep up with him vicariously as he cycles for Lupus awareness and to raise funds for the disease.  Paul's sister has Lupus, and I got the opportunity to meet Paul, his sidekick Dean and his mom Miriam when they rode through our neck of the woods last year on his way to an incredible Guinness World Record for riding across the United States - North to South AND West to East! He is currently on the world's longest bike race across the entire continent of Africa.  He was placed second, then got Malaria and had to be hospitalized.  That didn't stop Paul though.  He wrote his mom, "My joints ached so badly every day.  All I could think of was (his sister) lives with this kind of joint pain every day.  I have to keep going."  Paul also keeps up with his  Twitter and Facebook page as well where you can read about each day's exploits.

Lupus, Humor, and Wellness is a fun blog I like to sit down and read when I have some time to kill.  Carla Ulbrich, the 'Singing Patient' writes and teaches with humor, sincerity and enthusiasm.  There's not much "poor me" stuff here, just useful information and a great perspective.  She includes plenty of photos and an up-tempo approach to blogging about her Lupus experience.   She's recorded an album called "Sick Humor" that I'd love to get a copy of eventually, as well as a book called "How Can You Not Laugh at a Time Like This?"  You can also find Carla on Facebook as well as Twitter.

Chroniclysilly is another fun blog I like to read when I have the time.  Again, a fun, upbeat place to go for good tips, information and a great serving of sincerity.  Chroniclysilly has a good sized following for a reason - it's a great read.  In addition to blogging, there is a Facebook and Twitter page, as well as a jewelry page that often features Lupus inspired creations.

The Jodi McKee Autoimmune Portrait Project is a very interesting, different type of blog.  In it she includes portraits of autoimmune patients along with a brief interview that discusses everything from their disease to tips they offer to other patients who have just been diagnosed.  For those looking to see that they are not alone in their Lupus diagnosis, this is a great place to see the stories of others.

My Life Works Today  is an up front, sometimes humorous look at life with Lupus.  This is no high brow blog repleat with doctorspeak, just ordinary language, ordinary people and all too ordinary situations we all live through at one time or another.  Make sure and follow MLWT on Twitter too!

Lupus Awareness and Research is not really a blog, but it's updated daily and written as if it were a blog and so is included in this list.  If you're interested in the latest research and thoughts on Lupus, or just curious which celebrities are helping us create Lupus awareness... this is a site that will interest you.

LA Lupus Lady is a fabulous Lupus advocate.  Whether you follow her on her blog or her Twitter you'll find her posts very informative and to the point.  She has also done a couple of video projects that include photos of patients with Lupus.  This lady believes in advocacy and taking action, and she puts her money where her mouth is!

But You Don't Look Sick  was begun when the author, Christine Miserandino was struggling with Lupus and came up with an analogy to help her friends and family understand how she gets through each day in her life.  She called it "The Spoon Theory" and thus an entire movement was born.   BYDLS (But You Don't Look Sick) is on Facebook, as is Christine.  You can also find BYDLS on Twitter.  Oh - don't forget to read Christine's Spoon Theory too!

Butterfly Lessons is a place to go if you want to read about someone who is active in Lupus Awareness.  She seems quite active in helping others in Lupus walks etc and tells all about each experience she participates in.  This is great for those who are interested in becoming a Lupus Health Activist but yet is unsure exactly what to do about it.  Katina Rae Stapleton can also be found on Facebook and Twitter .

Of course there are many other bloggers out there that are also wonderful to read, and it was really difficult to choose some favs to place on this list.  Feel free to place your own blog in the reply box below, or let me know of others you think worthy of being included here!  You can also join in on the conversation here in the Autoimmune Diseases Group...

Tell us about your favorites!!!

Comment by Angie on May 2, 2011 at 11:33am
Thanks, Ellen, for including me in a list of such admirable bloggers! I actually remember your first comment on my personal page. Had no idea what a great source of encouragement you would become. Kudos to you for all the writng and work you do for health awareness. Thanks for being my friend!
Comment by Ellen S on May 2, 2011 at 6:03pm
Angie, it's always such a pleasure to work with you!  I truly admire all that you do for the Lupus community.  If there are any others you can think of that you think should be added here, I'd love it if you'd link them here so others can find them too.

All Hail Lupus Awareness Month!!

Saturday, April 23, 2011

Rick The Alzheimer's YouTube Guy... HAWMC #21

Every couple of days Rick Phelps of Memory People sits down and creates a video diary of his early onset Alzheimer's Disease from the patient's perspective.  He speaks candidly, openly and from the heart.  He lets his audience not only see him at his worst as well as his best in order to try to help the Alzheimer's community, but he does so in a completely transparent manner.

There are a lot of things to admire about Rick:

++ He maintains his video diary
++ He created the fabulous online Alzheimer's Community on Facebook called Memory People (MP)
++ He continues to manage and grow MP like a pro, yet he's only been doing this for a handful of months now!
++ He is available online to help other patients and caregivers as well as advocates in whatever way he can from information to support.
++ He's made himself available to speak in person about his disease including media interviews
++ He opens himself wide up so others can better understand this disease in a personal way.
++ He is an encouraging soul facing a devastating diagnosis of monumental proportions... with grace and bravery.

I only met Rick a few weeks ago when I joined the Alzheimer's community.  I'm lucky enough not to have a diagnosis of Alzheimer's, nor am I the caregiver or family member of a patient.  My life was changed when a beloved Aunt died from the disease, and I was never told of her diagnosis until she was gone and it was too late for me to be a good niece and offer any help.

One day I was looking for a great community to join, and fell across MP and Rick and the crew there.  Even though I'm not a patient or caregiver, I was nonetheless welcomed with open arms - a testament to the great people you'll find in that wonderful group. If you know anyone with Alzheimer's Disease, this is a wonderful spot to call Home.

I saw one of Rick's videos - one of his first - and was hooked.

The video I first saw was not a good day for Rick.  He was suffering terribly, yet let us all see what it was doing to him physically and emotionally.  It remains one of the most touching videos I've seen on the subject of Alzheimer's, because it's not professionally produced or full of fluffy writing or touchy-feely stuff.  It's just raw.  Honest.  Clear. When you watch Rick talk, you are witnessing this disease and the bravery of those who have it.

Want to know what an Alzheimer's patient thinks about living with the disease?  Rick will tell you.  So will the members of his community.

Want to know what it feels like to be a caregiver of someone you love who has Alzheimer's?  Go to Memory People.  The people there are standing with arms opened wide to any and all who want to know more about living with and surviving this disease.  

Here is Rick's first video.  He talks about himself, his beautiful family and the diagnosis of his Early Onset Alzheimer's Disease.  Be forewarned... he'll have you hooked and ready to watch them all from start to finish...
Comment by Alzheimer's Speaks on April 23, 2011 at 11:26pm
Great article!  Thanks for writing it.
Comment by Ellen S on April 24, 2011 at 5:24pm
I'm so glad you liked it :). We're working on something a little more to be published soon... Stay tuned!

Thursday, April 21, 2011

This Is Where The Magic Happens... HAWMC #20

Don't you ever stop to wonder where someone is when they write?  I do.  I imagine them sitting at a well-organized desk plucking away at the keys.  Sometimes I imagine patients sitting with their laptop propped up against raised knees plucking away in a peaceful bedroom.

Where do you think or imagine I usually sit composing posts and moderating websites?

You might be surprised...

For the last 2 of 3 weeks I have not even been home!  I have been out of state, in various places.  This means I sit down at the keyboard whenever and wherever I can when an idea hits or a lull in my schedule has allowed me the freedom to write.  I have written many of the HAWMC posts

++ In bed
++ On an airplane
++ sitting in line
++ waiting for food to arrive
++ in the car
++ at a friend's house
++ in my childhood bedroom
++ on my mom's computer
++ in various hotel rooms
++ on my kitchen table.

This isn't how I usually conduct business.  In fact, I usually conduct business in what I believe to be THE messiest, least organized office of anyone I know.  I can say this because several friends and I have laughingly compared our messy - albeit creative - workspaces, and yes... I have won every time, lol.  A dubious distinction at best.

My office is a small bedroom.  My desk is a wooden table circa 1950.  My chair is an old (but very nice) office chair absconded from the dump pile from my hubs' office downtown when they were remodeling.  I am surrounded by piles of paper in various stages of disarray, courtesy of the 2-3 dogs and cat that insist on being my never-ending entourage.  My walls are covered with papers push-pinned into the bulletin board and surrounding drywall so I don't forget something.

...and yes, I know where every piece of paper and work is in this mess!

This office has been used for bookkeeping for my stained glass business as well as designing some pretty neat pieces of artwork.  I managed my kennel and my horse breeding operation from here.  I've been a long-time 4H leader and that requires mountains of paperwork that all began its life right here.  I keep track of First Responder and CERT records here, and write newspaper and television articles from my little messy desk.  Of course there are also the personal records etc too.  Aaaahhh, I long so for a giant filing cabinet!  I have long been convinced that if my critters would manage to keep their paws off my piles I would be a much more organized person.

There's no doubt my Health Activism suffers as a result of my chaotic workspace.  Granted, the other places I work on my advocacy is much tidier and less stressful feeling.

How do you keep your workspace?  Do you set aside time each day or each week to tidy up your space?  Or are you like other "creative types" whose desks are in a perpetual state of disarray?  How do you deal with that?

I firmly believe that there are differences depending on how active we are in our advocacy efforts, as well as which health issues we deal with.  What do you think?

To answer your question.... "NO" I will not post a photo of my chaos ridden desk....

Will YOU?
Comment by Joyce Cline on April 22, 2011 at 1:08pm
i also have a messy den with my hubby`s desk , a desk for my church work,a desk for my music equipment,i am a gospel singer by the way.i know where everything is too.my husband can say have you seen so and so,and i just think in my mind and see and i go right to what he is needing,he says i don`t know how you do this,it amazes me and him too.but don`t you come into my area of the den because you just might get this,"get away from my side",we have a huge den.but we work together in the same room in harmony,as long as you don`t touch my stuff lol.
Comment by Ellen S on April 23, 2011 at 9:23am
LOL!  I know what you mean... my hubs is on the other half of our "computer room"/office too.  He knows better than to venture into the "bat cave" when I'm working and usually chooses to stay outside until I'm finished.  I only take up about 1/3rd of the room, but I am here working nearly all day every day as a Health Activist, so it certainly needs more attention than his side.  That's really because I'm just constantly here and constantly working though!  I always hate taking time out of my day to do something menial like organizing... not when there are so many things to write about and so many people to talk to :)

Tuesday, April 19, 2011

Swearing For Pain Relief? HAWMC #19

Recent research has revealed that there might be a very good reason we dust off the four-lettered words when something is especially painful...

The actual study found swearing was effective pain relief for those participants who usually do NOT swear in their day to day life.  The practice was much less effective for those who routinely use the especially colorful metaphors.

Researchers had participants dunk their hands in ice water and timed how long they were able to keep them submerged.  Some of the participants were encouraged to swear, while others were encouraged to use an innocent word instead of the four lettered variety. 

Those who swore were able to keep their hands submerged in the painfully cold water substantially longer than the other participants.  Moreover, the pain reducing effects were four times more potent if the subject did not normally swear in their daily life!

Researchers are guessing that the act of swearing activates the fight or flight response in our bodies.  Swearing is an act of aggression and our bodies respond to it accordingly, both mentally and physically.  Just as a good fright might make you immune to pain temporarily, so might swearing.

Most humans have a language center in the left side of their brains.  When a patient swears, the opposite side of their brain is activated - the emotional areas of our brains. 

The fact that swearing is a nearly universal language phenomenon is interesting.  As a child I always equated a person swearing as something akin to a dog barking.  It turns out I might not have been entirely wrong...

When a person swears their heart rate increases, their breathing changes, and their bodies often tense perceptably.  Blood vessels constrict and the body takes an aggressive stance.  Their voice raises, faces scowl in a threatening way and the staccato beat of brightly colored metaphors feels similar to the booming base of a heavy metal band, or gunshots... or the barking of your neighbor's dog when you get too close to the fence line.

From this study it might be surmised that using foul language as a matter of everyday life may be doing one or more of several things to us including:

++ placing additional stress on our bodies thereby depleting adrenal and other stress related hormones necessary for everything from immune health and inflammation control to the ability to sleep at night.
++ creating an atmosphere of constant stress response that eventually we become immune to, possibly negating the positive response we need when real stressful events occur.

This study gives us many things to consider re: how we conduct ourselves during stressful or painful times.  It certainly goes a long way toward explaining why the human race - as a gut reaction - is prone to being foul-mouthed during times of stress or danger.  Somehow I can't imagine any other animal visualizing or thinking the foul things that actually are vocalized by our "civilized" and educated society.

Sources:  The Telegraph ,  TIME Newsfeed

Sunday, April 17, 2011

And Then I Looked Up... Mindfulness Post HAWMC #17

Today I wanted to scream.

I have already ruined one precious day with my hubs while on vacation.  Today I went and made it two.  Every time I eat, my body rebels.  So what did I do?  I ate.  It rebelled.  We had about a 2 mile walk to get back to the hotel and I wondered out loud how on earth that was going to be possible.

I tok my Gaviscon and said a few prayers.  My belly grew until I looked about 7 months pregnant and the pain was horrible.  Eventually the Gaviscon began to work.  I could move and we headed back for "home", praying we could get there before the nausea became more a promise than a feeling.

On the way I chided myself for my stupidity.  I should have known this would happen again.  But somewhere along the walk my abdomen began to quiet, and I slowly became my more cheerful self again.  I loved being with my husband.  I loved the feel of his skin against my hand as I held his arm.

And, then I looked up...

We were in a hotel - the Luxor - and we walked into the pyramid where it was comfortably dark, quiet and cool.  When I took a moment to take in the moment.

I imagined the pyramid completely empty but my hubs and me.  In my mind I lay down on the floor and looked up at the inside of the structure and marveled at the light streaming into the windows.  I took a picture in my mind's eye of the beauty of the massive structure.  I sensed the sounds around me and let them bounce off my skin.  I closed my eyes and imagined the molecules around me bouncing off my skin like the sound waves.

For that moment, nothing else existed.  There was no one else there.  There was no Sjogren's, no Lupus, no Dystonia, no Migraine or pain, no ruined afternoon.  For that moment, I wasn't a patient.  I was just Ellen - a woman like any other, breathing in the moment of freedom.

Sometimes I think that we as Health Activists forget that there is an outside world.  We are so caught up with being an advocate for our health passions, that the only time we aren't thinking about them is when we are thinking about our actual health or that of our family members.

It's vital for us to keep our batteries charged to take a moment or two out of each day to remember what it is like to be human beings.  Just people.  No health issues, no people depending on us.  No jobs to get to, no deadlines..... no blog posts to finish. 

I was born in 1964.  If I live to the age of 80, I will have experienced at least 42,076,800 minutes.

We are only allotted a certain number of moments in our lives.  Each minute is there only once, then gone.  Too often we lose track of them.  Sometimes we lose track of very important minutes.  Once lost, they are gone forever.

Each of these minutes are given to us for a purpose and a reason.  I may not know why that moment was given to me today, but I loved it, and I appreciate it.  It helped me by feeding my soul.  It reminded me that I am human. Tomorrow, I will be a better Health Activist because I lived that moment, literally and figuratively.

No, I don't want to waste a single one...

What moment did you lose today?

Comment by Joyce Cline on April 18, 2011 at 11:30am
i am glad that you were able to capture that moment of tranquility and enjoy the time together,me and my hubby went out to try out firehouse subs for his birthday and a baskin robbins later all free for join  ing the birthday clubs on the net.it`s nice to be able to eat out for free. lets all enjoy time with our spouses on a whim and unplanned.
Comment by luvzrozes on April 20, 2011 at 1:12pm
Beautifully written Ellen.  Thanks so much for sharing with us.  We had spring break last week. We brought my last 2 dogs up from where I used to live, and on almost the last day, we decided to foster a neighbor's dog for a while so they could build him a neighbor friendly yard. (He loves to visit their neighbor and play, but the neighbor recently had surgery and can't play like he used to) We worked as hard as I was able on a garden.  It is wonderful to have, but the getting it started is hard work, even if someone else is doing most of it.  I have lost the last 3 mornings sleeping in to recover from the extra activity.  But what we accomplished is worth resting a little more this week!!!
Comment by Ellen S on April 21, 2011 at 10:30pm
Thanks guys for your encouraging comments!  My goal is to be sure I take a few moments of each day and do this...
Comment by Joyce Cline on April 22, 2011 at 12:59pm
that as a very nice gesture for the animal,i have just adopted a wonderful dog off of the internet.i am an animal lover and wish i had a farm. i would take all unwanted animals and take care of there needs and give all of the love i have for these animals.  joyce
Comment by Ellen S on April 23, 2011 at 9:20am
Joyce, you know, research proves that living life with an animal we care for is actually physically helpful to our health.  Like you, I love my animals and animal rescue was a passion for a really long time.  It's been a couple years since we did our last rescue.  There's really nothing better than looking into the eyes of one that has been taken from a bad situation... they too know show such gratitude when they've been helped.  I hope someday you get your farm and have the opportunity to do this more often :)

Friday, April 15, 2011

Life With MS In Two Sentences - HAWMC #15

To those who don't understand:

The MS holes in her brain are hidden from sight, but the effect is glaring and clear as the light; the damage is undeniable, the pain indescribeable and the effects on her life, undefineable.

Her future's unclear, her husband unsure, but she lives every day of her life with quiet passion undaunted...

...because she must.


- To my friend with MS.  You know who you are my dear.  Just know that your perseverance inspires those who know you.

This is my entry for HAWMC #15.  Keep the blog posts rolling!!
Comment by JordanB on April 15, 2011 at 11:12am
I really like the poetry angle you took this in, it gives the lines some real momentum.

Liar Liar, Pants On Fire - HAWMC #14

There is one thing that drives me insane where being a Health Activist is concerned...

In my day to day life, my family and friends know there are three things that I don't deal with well even on a good day... disrespect, whining and lying.

One of the toughest parts about being a Health Activist is addressing the lies that are so prevalent about certain health conditions, and health in general.  The biggest lie I want to talk about here is the CURE lie.

Sometimes there are no cures for a disease.  It is a fact of our life.  There may be treatments and there may be helpful things to do to live a good life despite a certain health condition, but that does NOT mean there is a cure.  Those people who prey on unsuspecting sick patients and their families by telling them they can cure their conditions should be ashamed of themselves...

Not everyone touting a cure knows that the information they're selling is complete hogwash - they really believe what they're saying is true, making the situation just that much more frustrating.

Sometimes they don't even know what the word cure actually means.   Here is a WEGO Health conversation that polls health leaders with the question, What does CURE mean to you?  What do you think of the word CURE?

So here is a quickie list of cures that don't exist:

++ There is no cure for Migraine disease.
++ There is no cure for cluster headaches
++ There is no cure for autoimmunity
++ There is no cure for Lupus
++ There is no cure for Sjogren's Syndrome
++ There is no cure for multiple sclerosis
++ There is no cure for Alzheimer's Disease
++ There is no cure for cancer
++ There is no cure for allergies
++ There is no cure for depression
++ There is no cure for ADHD
++ There is no cure for Dystonia
++ There is no cure for sickle cell disease
++ There is no cure for HIV
++ There is no cure for fibromyalgia
++ There is no cure for type 1 diabetes
++ There is no cure for restless leg syndrome
++ There is no cure for autism

Did you notice anything about my list?  All these health conditions are groups here at WEGO Health.  In fact this list makes up the majority of health groups here at the site.   For nearly everything listed here there is someone on this site or another that has declared they know how to cure these problems.  Wipe them from the planet entirely and forever.  There are entire site available online that will teach you how to "cure" every disease you see here.

Don't get me wrong.  I believe that we will eventually find cures for the majority of these diseases and conditions.  We just haven't done it yet, and to tell a desperate patient that a cure exists is unconscienable.  It's wrong, wrong, wrong.

It is in part these people and these sites that make our physicians think and assume that every site online is bogus.  These people and these sites make it nearly impossible in some cases for an educated patient to go to their doctor and have a frank discussion with them re: their health care, because the doctor immediately assumes the patient is a kook who has visited a bogus site and is filled with misinformation.

How do you deal with these charlatans?  Do you engage them in conversation?  Do you debunk their myths as fallacy from the get-go?  Do you let them bury themselves first?

I tend to try to engage them in conversation because I feel that any conversation we can generate will benefit those patients looking for answers.  If they see the conversation hopefully they will realize that they are being misled by these folks, and how.  That said, it does irk me every time it happens.  It's difficult for me to converse with someone that is there just to profess their skill at a cure that doesn't exist.

Believe me, if there is a cure discovered for any one of the conditions listed above, I will be one of the first and the loudest to declare it from the rooftops.  Until then, hang in there folks... we're just not there yet.

This is my HAWMC entry #14.  I veered from it a bit in that I went far past the 5-10 lines and it's not a poem.  But I'm SO not a poet, and this is a prompt right?  Something to use to get you started on something you make your own?  :)

Comment by Alicia C. Staley on April 15, 2011 at 10:57am
AWESOME!  You are so right.  If I had a dime for every site that pushed the cure for cancer... I'd be retired now!  I tend to avoid these kinds of sites.  I don't engage these sites or companies pushing magic cancer cures.  Maybe I should - I like your idea of engaging them in conversation to allow others to see these exchanges and make their own decisions!  GREAT POST!!

I really feel we need to move beyond the "cure mindset" and focus more on containment or isolation of a disease.  The general public has bought into the "cure mindset" hook, line, and sinker and it's very hard to change, let alone shape, the conversations that need to take place in order to discuss realistic outcomes for any disease.

Great work Ellen!
Comment by JordanB on April 15, 2011 at 11:11am
For as long as there is civilization, there will be snake oil salesmen.
Comment by delordson on April 15, 2011 at 5:31pm
Great post! I've given up fighting some of the claims you see on some sites. Really scary.
Comment by Ellen S on April 17, 2011 at 9:03pm
delordson, I know it can be so frustrating to see all these claims, but if we - the patients - don't say something, who will?  I pray that unsuspecting patients will see these things and put the brakes on, but I also know from the experiences I've had in desperation, that there comes a point in time where a patient is willing to do just about anything and everything to get better.  Even money only becomes an object when the "cure" doesn't work. 

Yup, very scary...

Wednesday, April 13, 2011

All that I am comes from those mountains where I was born and raised. HAWMC #13

Those who know me even a little bit know how much being outdoors means to me.  How much I am a part of God's green earth.  I thought all of that came to an end when I became Bat Cave Girl...

The Bat Cave Girl is just an ordinary girl who woke up one day to find that she has super-powers.  Sometimes, her eyes become ultra sensitive to light and she can see the faintest pinprick of light and tell you where it's coming from.  Her nose can smell the faintest odor and identify it with deadly precision.  She can hear the pitter pat of kitten feet on the carpet and identify which cat is walking toward her. She feels the tiniest of breezes as if they were hurricanes, and mystifies others by predicting the weather with incredible accuracy.

These powers were given to her by a creature that dropped onto her face in the dead of night.  It crawled its way to her ear where it entered her head and changed her world.

The creature is an angry beast.  When she exposes it to its kryptonite it goes into a frenzy, tearing at her eyes and ears and her brain... from the inside out.   

She tries to hide her superpowers.  She wears dark glasses and pretends that the light doesn't hurt her.  She lives in a cave in the mountains where the lights and the smells and the sounds of the city won't hurt her.  She loves the mountains with all their splendor.  They are her hiding place.  Her sanctuary.  But some days the angry beast becomes too much for her and she becomes desperate.  She uses potions made by magicians who try to help her take away the pain.  Sometimes the potions work.  Sometimes they don't.

Bat Cave Girl finds that there are others like her, carrying the beasts within their bodies.  She forms an alliance with them and they call themselves the Migraine Justice League, and they battle for the freedom of all from...

The Migraine Beasts.


Life in the Bat Cave  is a new blog I've been working on the last few months.  It is a sometimes serious, sometimes tongue-in-cheek look at living with a super-sensitive body ... away from light and noise and the smells that drive my health problems to flare.   I'm not quite ready to reveal it yet, but stay tuned... it won't be long now!

The title to this post is courtesy of a magazine - not a book.  My books are all packed away due to our home renovation, but I came home from Oregon with a Guideposts that I opened - August 2009.

Monday, April 11, 2011

Sjogren's secret - the dryness we don't talk about... HAWMC #10

Sjogren's Syndrome is an autoimmune disease in which the immune system mistakenly attacks the exocrine glands of the body.  Exocrine glands are those tiny little glands we don't usually think of, but miss very badly when they stop working, because they keep our moist areas moist - our eyes, mouths, sinuses, lungs, skin, digestive and reproductive systems... everywhere there are mucus membranes or moisture glands.

The secret problem Sjogren's patients all know about but don't like to talk about is personal dryness.

I'm a very open person.  I've been so profoundly affected by my health issues that I actually figure I don't really have anything to lose any more by talking about them.  There's not much I won't discuss if there's a good reason to talk about it.

I've had people contact me about this when I've mentioned it on boards, but rarely will anyone talk about it in public.  So, I'm going to break the barrier and talk about it here, because I'm hoping other Sjogren's and autoimmune Health Activists will take the information from this post to their groups and get some discussions going.

I don't want anybody blushing while they read this, so I'm just going to come out and say that most of us are either male or female.  If you don't have one body part, you have the other, so we should all be used to talking about these things. So fair warning - I'm going into some detail here...

Mucus - it's an icky word that conjures up visions of slimy green stuff in a tissue.  *Gak*  But mucus is vitally important to our bodies.  Mucus keeps delicate tissue hydrated.  It acts as a lubricant and as a protectant.  Without moisture in our mucus membranes, our eyelids would stick to our eyeballs, our tongue would grow hard like cardboard and our teeth would fall out. We wouldn't be able to digest our food, and malabsorption would eventually result in disease or our death.

For women, these membranes play a vital role in our lives in other ways. When our mucus membranes are well hydrated and working properly, we can walk without pain because tissues that move with our bodies are lubricated.  We don't notice this during the day because our body is working correctly and we don't feel pain.  When we become sexually active, these membranes make it physically possible to have sex - without this lubrication the tissues are very thin and tear easily.  What was designed to be a pleasing experience can be excruciating.  These hydrated and lubricated tissues keep the vaginal and vulvar environment properly balanced.  Bacteria is kept in check as are yeasts and other normal flora present in every person reading this article - male and female.

When these tissues dry up, they become even thinner and more sensitive.  They move against each other as we innocently go about our day, and with nothing to eliminate the friction, painful sores can develop.  The chemical balance is broken and the environment becomes a very pleasant place for bacteria and flora to prosper and grow.  This causes even more pain.  Our body's cleaning system that would normally flush out these harmful bacteria and flora stops working.  The bacteria and flora are not eliminated and begin to happily populate  wherever the slightest moisture remains.  With nothing to flush them away, we may not even be aware there is a problem.

The vagina, which is a normally very happy place, becomes very unhappy.  The vulva, normally a slightly moist, healthy pink becomes inflamed and red and angry.  Wearing clothes can be difficult.  Simply walking can become a test in willpower.  Urinary tract infections can become a normal way of life.

Unsuspecting doctors tell us to simply go and buy a bottle of lubricant and use it if the areas become painful.  They don't understand that no water based lubricant can replace the missing natural lubricant that was made for our bodies.  Some women are faced with pain so severe that sex is almost impossible.  Relationships suffer, even break apart completely when the partner is unable to understand the problem, or is unwilling to work around it.  Patients themselves can become so afraid of pain during sex that they end relationships in order to avoid it.

Some lucky Sjogren's patients don't suffer severe personal dryness, and OTC lubricants are sufficient.  Applying them externally once or twice daily and before sex may be enough to maintain comfort.

Some lucky Sjogren's patients do suffer severe personal dryness for which OTC lubricants are essentially worthless.  If these women are old enough to have become menopausal too, the problem is compounded.  Many of them can find relief with vitamin E oil applied when needed and before sex, but unfortunately most doctors don't think or know to tell them this option! There are other non-water based lubricants that can be helpful, but because they can clog the few moisture producing glands that are left, these should be left for times when extra lubrication - like during sex - is needed.

Certain techniques are also valuable to learn.  Not washing away what little natural lubrication is present just before engaging in sex is important.  An extended 'warm-up period' just before sex may also be helpful, but may be lost on the patient's partner, so maintaining open conversation about what works and what doesn't arouse the patient is really vital.  Warming the core temperature of the body enough to create sweat is also sometimes helpful - even placing a heating pad on the abdomen for an hour or two before activity can be advantageous.  

Some women find that using a female condom during sex will cut down on the friction that causes pain and tearing, but lubrication is necessary for their use as well.

I have a few of my own favorite products that I don't mind sharing here, in hopes it might help someone else who doesn't have a great doctor to give them their best options.  My top three are:

Vitamin E Oil- the cheapest and can be purchased by the bottle.  Use as much as is necessary for comfort. Some days you may need just a little, some days may require a whole lot.  This is also useful in combination with other products and techniques.

K-Y LiquiBeads - these can be inserted an hour or a day before sex, or used daily for comfort.  The lubricant is different from their regular product.  They are not necessarily widely available (I get mine at Walgreens when they carry them).  If you are extremely dry, they will not dissolve and release the lubricant, but rinsing them liberally with water before insertion or coating them with regular lubricant can be helpful.  Beware, they are messy (you'll want to have a pad handy), but very effective even in extreme cases. These may be discontinued, I'm looking for additional information at this writing.  All I can find right now are at exhorbitant prices, so I will contact the company soon and keep this page updated.  I'll be treating my last 6 like gold.

Very Private intimate moisture - I got this from Hyster Sisters and tried it with many doubts.  It is the best OTC product I've found other than the K-Y moisture beads product.  I use it alone and in combination when necessary.  It is the most expensive of the three products.

Comment by Nancy on April 11, 2011 at 8:28am
OMG! Thank you...
Comment by JordanB on April 11, 2011 at 1:05pm
I appreciate you going there. You did so in an open and direct manner that I think people will appreciate. I only smirked once ("The vagina, which is a normally very happy place, becomes very unhappy."). There's a lack of frank discussion like this, even in the sexual health section of WEGO Health. Every little bit helps, great post!
Comment by Ellen S on April 11, 2011 at 3:56pm
Jordan, lol - yes that's a joke in our house - "Just call me Frank!"  speaking openly can be off-putting at times, but if someone benefits from it, then it served a purpose.  I'm all about purpose :)
Comment by Alicia C. Staley on April 11, 2011 at 8:16pm
Ellen, Thanks for sharing.  This is an important issue in the breast cancer community as well.  Many women suffer from early on-set menopause,  immediate menopause (due to surgery) and a host of other issues related to changes in estrogen levels.  I will certainly share this post.  Alicia
Comment by Ellen S on April 12, 2011 at 3:52pm
Thank you Alicia!!  <3
Comment by Martha Wallace on April 13, 2011 at 10:58am
Thanks, Ellen. I have tried discussing the issue with 2 different nurse practitioners with little help from them. Thanks so much for your helpful post. Your purpose has been served. :)
Comment by Martha Wallace on April 13, 2011 at 11:10am
Also: my dermatologist prescribed acidpholus and while it does not help the dryness it does seem to help cut down on the secondary infections.
Comment by Ellen S on April 13, 2011 at 8:26pm
Martha, While I don't use acidophilus per-se, I do both use probiotics as well as tell others about using them too.  I wish I could say their use has cut down on the number of infections - especially the chronic bronchitis I've had now the last few years - but research says that it does.  Who knows - maybe my probiotics are keeping me from being flat out in bed with pneumonia.  I'm grateful for whatever they can offer me :)
Comment by Kim on April 15, 2011 at 1:25pm
Thank you Ellen!!! I have talked to several doctors and get very little understanding.  I have been married for over 37 years and had enjoyed a very full sexual life with my husband.  The last 3 years have been so difficult but my hubby is empathic.  Sjogrens disease has taken away that part of my life.  I have used vitamin E for quite awhile but not helpful for actual intercourse.  My doctor also started me ( I'm way pass menapause) on estrogen lotion in vaginal.  I find it doesn't help much either.  I will try the third product you advised.  Thank you for bringing up such a sensitive topic to all of us silent sufferers.  May God Bless YOU!!
Comment by lostbcgal on April 15, 2011 at 1:29pm
way to go Ellen! You said what needed to be said and written down once again!! Good girl! So many people are so uneducated on sjogrens. Including some of us who have it.In fact it seems every ER trip I'm always educating the nurses&Dr's about it!Very sad,but at least at my local ER they see me coming and many more now know "oh,the lady with sjogrens,lupus&fibro"is here.Awareness is definitely the key.

Sunday, April 10, 2011

Dear Ellen, With Love...HAWMC #9

Thanks to HAWMC I'm doing this exercise in self-love that every chronically ill person should do.  Write a love letter to yourself.  Tell yourself how wonderful you are.  Remind yourself of the things you have accomplished despite health obstacles.  Sometimes we need to remind ourselves of the good things others see in us that we might miss.  This helps us to be better at our jobs as health activists and advocates.  What would you say?

Dear Ellen,

Stand in front of the mirror, and instead of walking away because you don't like what you see, take a moment and look at the face staring back at you, and consider the journey the girl in the mirror has been on...

Each mark on your body, every line on your face is there for a purpose:

++ The scar that crosses your left cheek courtesy of Duke the cat when you were 2 is now almost hidden with age, but you learned to hide it and even modeled with it.

++ The crinkles around your eyes from smiling too much while playing with children and their horses in the sun.

++ The scar on your left leg from the tumor removed when you were only 13 yrs old, and alone.

++ The scarred fingers and hands from creating works of art now all over the world.

++ The stretch marks from carrying the babies the doctors said you'd never have.

++ The varicose veins on your legs mark the genes you and your grandfather shared.

++ The hands you think of as ugly are the same hands of your mother and grandmother, who held you, prayed with you, fed you and disciplined you.  Those hands of yours made works of art, wrote long letters, and reached inside of untamed horses to help them create life.

++ Your arms were once strong and are now weak, but their weakness taught you the healing importance of accepting help from others.  The weakness in your arms helped you develop empathy.

++ Your eyes have seen birth and creation, death, secrets and disasters - and wonder.  Because of them you saw your babies first smiles and first steps and will soon see them walk down the aisle to be married to their loves.

++ The fat on your tummy and thighs represent rainy days - they are your reserve when your body is weak and sick.  The imperfect texture of your body fat is your protection from harm, like a warm blanket in the cold.

++ The worry lines across your forehead that were never there until you started advocating for other patients.  They show how deeply you care.

These are the illustrations of your story.  You have wondered about the bodies of your family and friends who have gone on before you - when they were prepared for burial did anyone look at them and wonder about their story?  their journey?  Did anyone take the time to 'read' their story?  Were they moved by what they saw?

Stand in front of the mirror, and really look at the girl who looks back at you...

The marks you see are the battle scars of a survivor.  You endured accidents and abuse and nearly died due to a medical mistake.  Many of the scars you carry are marks of love so great that you put your body in the way to protect another.  Some of the scars are there because you chose to continue loving despite the danger to do so.  You were not sorry when you were wounded, so don't be angry or sorry now!  The imperfections you see and try so desperately to hide are the signs of your greatest assets.  Those who love you see these for what they are - the outward signs of a person who has refused to give up or change due to the challenges thrown at you. You see childish weakness, but they tell you they see strength...

Because of your weaknesses, you are mighty!

Now stand up straight and be proud of who you are... lines and scars and imperfections and all.  Raise your hands and your face to the sky and live each moment with awareness of every molecule that surrounds you.  Use your strengths and your weaknesses to help those in your path, and make your path wide, and long.

Go to your grave because you used this body up.  Leave nothing left for disease to take from you, and give those you love gifts of memories that make them laugh, and smile and stories of chasing dreams that they'll re-tell to the shocked faces of others!


So now you've read my letter... what will you say in your letter?

Comment by Fabulousandsick on April 11, 2011 at 1:08am
Great Job. I love the idea of writing yourself a letter to remind yourself of who you are and the journey you have taken.
Comment by Ellen S on April 11, 2011 at 1:59am
Fabulousandsick, I think it's a great exercise to look at one's self from the outside - from another perspective.  Why don't you give it a try?!
Comment by JordanB on April 11, 2011 at 1:11pm
I'll admit, when I saw this as an option I immediately panicked and started looking for something else to post. I'm not one hundred percent sure why, but I worried about writing a post singing my own praises. You've allayed what fears I had. Emotional and empowering, you proved the worth of the exercise to me.
Comment by Ellen S on April 11, 2011 at 3:53pm
Jordan, I did too!  I had to go 'outside' of myself to do this one.  I had to think of how I look at others and their lives, not myself, because I think it's ingrained in most of us that looking at ourselves in a favorable manner is not okay.  As my friend Pam said on Facebook, there is a difference between pride and self esteem.  It's a very, very hard thing to do, for me anyway...I'd much rather look away.  I can't wait to read your letter :)
Comment by Amy K on April 15, 2011 at 1:07pm
Beautiful post Ellen... you are most certainly a survivor and woman of beauty!
Comment by Tiffany Peterson on April 20, 2011 at 12:19am
absolutely wonderful!!! Definitely one of the toughest posts I've been challenged to write!
Comment by Joyce Cline on April 22, 2011 at 1:24pm
absolutely the best way to describe ourselves.it couldn`t have been said any better ellen,i love the way you can explain things to help us all understand,keep up the good work.  joyce
Comment by Ellen S on April 23, 2011 at 9:24am
Thank you guys for all of the encouragement - it means so much!