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?

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!!!

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...

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?

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

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?

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!!