Donate a Blog Post This Week For Mesothelioma Awareness Day

“When it comes to a preventable cancer like mesothelioma,

awareness truly does save lives.”

This video well captures the hope that radiates from the survivor that is my inspiration for helping with this effort.  I believe that her words will inspire you to participate far more than mine, so you can also read more of her story here.

I found her story more than compelling, but I also admire the idea and the purpose of this campaign. 

I plan to write multiple posts this week here and elsewhere, but first I wanted to share this information in time for others to participate, too. 

You’ll see some of this information again if you check back for following articles.  So if you can’t start today, it’s not too late. 

Mesolthelioma Awareness Day (MAD) is September 26, but the Mesothelioma Cancer Alliance is encouraging participants in this effort to post throughout the entire month.  My hope was to begin sooner, but many writers do their best work closing in on a deadline---so if you have a blog or want to help, jump in! 

Or, perhaps if you begin on or after Friday, you can compile your favorite MAD articles and blogs and include them in your post.

How you can help:

1. Pick an aspect of this disease that you find interesting
2. Offer unique information or a unique perspective (this could be your reasons for finding certain information interesting or how much you learned about the disease or an aspect of it that surprised you)
3. Post a blog, write an article, or perhaps share your thoughts on social media
4. Share your post and share other donated posts

If you are not a writer or need another option:

Check back later this week for links to MAD blogs and articles to read and share.

When "Hype Busting" Food Intolerences Helps vs. Hurts Those With Chronic Illnesses

Along the same lines of the last post, this is a link to another of the first few articles I'm writing to get my mind back in practice.

Would You Like Some Empathy With That? How Hype-Busting Food Intolarences Helps and Hurts the Chronically Ill

This one overlaps a bit with Waikiki travels covered here early on, partly because of foods I found there, but also through some of the photos.

Waikiki Trips Revisited (in a travel tips article)

My blogging bridged in varied directions after my Lyme disease diagnosis, during my recovery, and then during my recent relapse & leave of absence from work.

I'm trying to get my writing juices flowing and am strongly considering trying out some degree of freelance writing.

One of my first articles is this one, which overlaps with the topics that started me blogging (my Waikiki travels and experiences with sea turtles).

Planning Tips for Navigating Waikiki on Your Oahu Vactation & Adaptions for Kids, Time, or Health

Lyme Awareness Month 2014: Life after Lyme link (Check out Touched by Lyme)

I just googled this title as a search term.  I just finished a Girl Scout Night Trek in Canada with my troop and other local troops.  I'm recovering, of course, but I loved the moments when I felt like a fairly normal person.  Or at least what I think I remember of what that felt like.

It's lyme awareness month, so I wanted to start mine off with something uplifting.  With lyme, there's always some sad mixed in.  Here's one I enjoyed.

TOUCHED BY LYME: Coming back to life after Lyme disease

"It’s a universal feeling, wanting to cling to youth. For Lymies, the feeling is less about nostalgia and more about grief for lost time. At some point for people struggling with chronic tick-borne disease, one tick stopped the clock entirely. I sometimes joke that I feel like I went to sleep when I was 25 (when I first got diagnosed) and woke up when I was 33 (when I went into remission and moved to Boston). For all the laughs I get, the truth is, there’s nothing funny at all about losing eight years of your life."

Post on Lyme Disease Antibiotics Controversy from Out of the Lyme Light

This a different branch of Lyme disease controversies (of which there are many), but the same kind of logical disjunct exists with antibiotics use protocols for Lyme disease as with the diagnosis and regional distribution issues I've been dwelling on in my recent posts here. (Primarily focusing on the odd reasoning used by the CDC and State Health Departments in deciding where Lyme is or is not contractable and why we think we know the distribution of tick species we haven't been looking for).

The article linked to below is also very pertinent to Senate Bill 296 (Montana, tabled March 2013) and major issues with treatment paradigms it attempted to address.

As for antibiotics, one of the problems Lyme patients face is that IDSA guidelines specify 28 days of antibiotics and insurance companies don't have to pay beyond that time.  So, even if you have the great fortune of an early diagnosis, you may not have access to adequate treatment, as 28 days of an antibiotic is often not enough time, and does not address coinfections well enough on its own.

If you are diagnosed months or years after infection, I believe (based on substantial reading of peer reviewed studies and papers on the behavior of Lyme spyrochetes, cysts, and biofilms) a round of antibiotics this short could actually do more harm than good.  As a biologist, I feel that my tremendous progress to date is substantial enough to support that longer term antibiotics were needed for my progress so far.

As a biologist, I can't draw inference from my single experience to the enormous group of people suffering from lyme---but it would be better founded inference (that would be supported by available science and overwhelming evidence from patients) than the statements currently made by IDSA and CDC, which are not supported by or in keeping with best available science nor clear, logical reasoning or any type of discernable or transparent decision framework for their conclusions or protocols.

Anyway, good blog and good article (link and excerpt below):

out of the lyme light: Antibiotics: The Controversy: 

This post could take me into some pretty dangerous territory in the fight against Lyme - how to treat?

It really should be simple bacterial infection = antibiotics (abx).  For some reason, researchers have persisted in claiming that 30 days of abx will cure Lyme, and if you're still ill after that, then you don't have Lyme.  EVEN IF YOU STILL HAVE A POSITIVE BLOOD TEST.

Keeping it short and sweet: this causes lots of problems for people with late diagnoses.

PLEASE HELP Montanans with Lyme disease: Senate Bill 296

I don't feel well enough to be up this late, and I'm too tired to type a separate post, so follow the link below for the post I typed earlier tonight (links and info on the bill and contacting representatives).

Rather than cross post the entire thing, here's the link and a couple of excerpts.

Montana Momma post about SB 296

Montana Senate Bill 296 proposes to protect doctors who treat lyme with long term antibiotics.  Protocols currently call for 28 days of antibiotics early into onset.  But 28 days is not always enough even in the acute stage.  Chronic lyme is very difficult to get diagnosed in this state, as I've posted about before, so the odds of getting diagnosed and treated in the acute phase are pretty slim.  Once diagnosed, longer term cases of lyme cannot be treated as easily as acute cases.

In other parts of the country, even where lyme is known to occur and more commonly diagnosed and treated, doctors have lost their licenses and suffered serious financial consequences for treating patients with lyme.  The risk to doctors and the full complexities of the multiple debates surrounding lyme treatment and diagnosis are too much to dive into here, but a VERY good introduction to these issues is the movie Under Our Skin (it can be rented and is available on netflix and youtube in clips).  

My hope is that reducing the risk associated with treating patients will also reduce the resistance to adequate testing and diagnosis.

You can read the rest of the blog post, including a bit about my 3 years of misdiagnosis (and how better legislation might have helped) and more on Lyme in general on my Lyme blog, Invisibly Lyme Montana.  With the primer moving linked to above and with a little delving, it is clear to any educated reader that the IDSA/CDC diagnosis and treatment guidelines used nationwide are inadequate and dangerous.  What happened to me could happen to anyone.

LYME WARRIOR post: If we can change our thoughts...

This is pasted from a facebook lyme page I found yesterday.  It's timely and helpful and well-said.

The page is:

Lyme Warrior

The post is (with spacing added):

Attention: This page was set up to spread awareness of "lyme disease" (I refuse to capitalize this term anymore) and that I will continue to do. 

However, in order to SPREAD awareness, we must first discover it for ourselves. And as I explore my own awareness I find it necessary to keep in check what power I give this or any illness or DISease. I urge those struggling to stop struggling. 

Change the story in your mind.What if we see the blessing in things falling into place rather than falling apart. It hurts much worse when we try to hold on to something for dear life. Just imagine how exhausting it is. Your poor mind and body are tired and want to let go. What we WERE doing is no longer working or else we would not be in the spot we are in. Change is inevitable. Find surprise and excitement in the unknown. 

Say to yourself, "I wonder what miracle awaits for me tomorrow" instead of "oh God, another day of this hell!". After all, we are indeed a product of the thoughts we create. 

What if things do not have to be as difficult as we are making them. What if we STOP IDENTIFYING ourselves with these circumstances. What if the mind no longer contemplates illness. 

Well then wouldn't the body eventually have to follow? We need to change our thinking before we change our bodies and our cells. If we can change our thoughts we can change our world NO MATTER THE CIRCUMSTANCES AND THERE IS NO EXCEPTION TO THIS RULE! 

When we change the way we look at things, the things we look at change. I can easily say "i lost everything" But instead I am saying, "I am so lucky to be able to start all over"...So now I await the miracles that come tomorrow. I hope you can and do too.

Lyme in Montana: Great Falls Tribune article about a mom with lyme

A great article in the Great Falls Tribune mirrors several aspects of my experience so far (3 years sick, traveling to Seattle to get diagnosed, among other things).  This is a portion of my commentary after reading this article (the video at the link is great too).

Great Falls Tribune article:Lyme disease divides experts, Great Falls family's journey...

One of my favorite comments (from the video) was the woman who's friend was urging her to get tested, I think, and explained that lyme resides deep in tissue, especially the eyes and knees.  She said that resonated with her----one of my steadiest symptoms through all of this was the pain behind my eyes.  It defies explanation how constant the feeling is....it's gotten better during treatment, but my eye doctor found tissue damage at the back of my eye (Bell's palsy side).  My knees are worse, but either way, the statement resonates with me, too.

Biologists and agencies can't reliably say for sure where we do or don't have large forest carnivores, yet we trust medical doctors to reliably tell us where we do and don't have an organism too small to see (there's much more to this train of thought in my Montana Momma post on this article).

When I first read the article, I couldn't help but post a couple of comments.  I wonder what the Tribune disliked about them enough to take them down.  They use a facebook interface for comments on their stories.  I posted as my facebook illness page (Invisibly ~ Ill) but if that were the reason, I wonder why they would allow comments from page.  These are the comments they appear to have taken down:

First comment:

Wow. Very few differences between this and my story. Differences: Hers started one month before mine, I did have a tick, my bullseye rash was on my scalp and my doctor didn't see it, and she got diagnosed after two years instead of three, and I had Bells palsy early on. Otherwise...years of symptoms, sick for three years so far, and trip to Seattle to finally get diagnosed. Doesn't it seem worth considering patterns, such as the clustering of patients in western Montana? And worth answering inconsistencies, like the facts presented by the renowned scientist who discovered the disease (this is a slow growing infection that burrows into tissue--hard to detect and hard to treat)? Why a month of antibiotics would be expected to be sufficient, biologically speaking? Why there are vectors north, south, and east of Montana, but not in Montana? Why, given the characteristics of this infection and the MANY ways it can be missed, it is still argued that badly timed and consistently inaccurate tests are relied upon? I don't want to think about conspiracies, I want to think about treatment, but with lyme, one has to face both and figure out how the two are ultimately related.

2nd comment:

I've found four people in my small town that contracted lyme in Montana. Without looking for them. I can't help but wonder how many I'd find if I really searched. Louisiana discovered that they did have lyme in their state (another state thought to not have it) through a study from ticks on bears. Having worked (sometimes hands on) with large mammals (alive and dead), migratory birds and bats, it's hard to accept that it just can't make it into Montana.

At least 26 cases of lyme in Montana through 2011 (per CDC)

Help educate your fellow Montanans about lyme....I hear often and have repeated myself that there is only one confirmed case in Montana (until a few nights ago when two nurses set me straight) . That was outdated by at least 2007----even the CDC acknowledges AT LEAST 26 CASES FROM 2006 TO 2011. Your chances of getting diagnosed if you live in Montana won't improve until doctors admit that its here (and that residing here does not somehow make you immune to it here or anywhere you travel).

http://www.cdc.gov/lyme/stats/chartstables/reportedcases_statelocality.html

Please sign a petition to help lyme sufferers get diagnosed and treated

Follow this link to sign the petition:

Reform the Infectious Disease Society of America Treatment Guidelines for Lyme Disease

"Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary."

For further information on the politics of lyme, also watch the movie "Under Our Skin"

Yoga for Lyme

A facebook post from the author of a Lyme disease support page (Lyme Thriving) mentioned a yoga class in NYC designed specifically for people with lyme and chronic lyme.  It was a light bulb moment.  Not a new thought, exactly, but at least a more complete formation of an existing thought.

So I googled yoga for lyme and it was an even more fruitful query than I expected.  This blog post is just the first I read, buy worth reading (for other chronic illness, too).  The first pose in his list for lyme is one of the best poses for me and has been through out my illness, so I plan to try the others and look up the one he recommends for clarity.

I should probably start posting about my lyme explorations and testing so far.  You'd think after almost three years as a sick person, new tests and medications wouldn't clam me up all of a sudden.  But I guess I've been on a bit of computer hiatus anyway, so it also just fits with that trend that I haven't blogged about it.

Social media certainly draws me in more than I ever intend it to (for example, I've typed this whole post with one contact, even thought I intended to go switch to glasses quite a while ago) and time and energy are to limited to spend in unintended ways.

When I could do the things I intended (pre-illness life, we're talking here now) Yoga was one of them.  The yoga photos below are on the shore of a remote backcountry lake in Glacier National Park during a backpacking trip with friends.

Life teaches, Love reveals

http://www.facebook.com/CfidsAngelBlogs

A smile

Strength is Happiness

Cute videos from Vegas (Roxy's Diner)

Last week, at the start of a new treatment regime (intense antibiotics, among other things).  I took a trip with a friend.  I did well with the meds but was not as spunky as I've been for other recent travels (the week before that I flew out of state to see a lyme doctor). About a week and a half before that we took our family vacation (the sea lion photos a couple of posts ago).

Anyhow, these singers (at Roxy's Diner at the Stratosphere) were so great I had to film them.

Stand by me

Oh Darlin (duet)

Tremendous timing! Serendipitous seal sighting on Kauai

As Katie and I came back to our beach and snorkeling spot, having treked to bathrooms on the developed portion of the beach, a monk seal was settling in on shore.  Katie stayed to watch and I ran up to the car for my camera.  I got back as other tourists were heading over to see, but not all that many gathered and virtually all kept a respectful distance.  The boys came and joined us for a bit, too.

A very nice girl asked if I could help her with her camera, which had firmly decided to remain on a timer setting no matter what she tried.  Our cameras were just similar enough that I was able to fix it for her and felt quite proud and knowledgeable for a moment.  We chatted about sea turtles and states we'd both lived in and she hollared helpfully at the folks who stepped right over the seal.  One in particular was a complete turd, stopping right next to the seal to glare at her with an intimidating and arrogant sneer.  Another looked at her and went right up to it to take pictures.   People stink but seals are neat and if we'd tried to find one we'd have failed, so the timing was great.

Attack of the fries

As for many chronic illness sufferers, there are plenty of foods I can't have.  Clinically speaking, CFS added dairy and casein intolerances to my life.  I've learned of other things to avoid through experience.

This makes eating anywhere a challenge, as you can ask all the questions you please; you never know which answers are right, or which questions you're forgetting to ask.

Fast food is pretty risky.  Not as bad as it probably was a few years ago, but pretty risky.  Some places, you can order quite a bit with certainty (Burger King is fairly good and I was blown away by how knowledgeable the staff at Arby's was).  But the same things (fries) aren't safe everywhere.

I remember reading early on in my dairy-intolerant life (less than two years long so far) about a McDonalds dairy conspiracy, whereby they insisted for years that there was no dairy in their fries.  It wasn't until enough ER visits among patients stacked up that someone decided to prove that there was dairy present in the fries. From what I recall, McDonalds admitted to the dairy after that.  What I may have projected into the story was that they stopped using it.

Tonight, after previously eating fries from McDonalds but not blaming my resulting nausea on them, I decided to ask when I ordered if there was dairy in them.

The teenager's voice in her answer was too funny (incredulous and baffled) to be offensive.  "Dairy?  In the FRIES?  Uh, no!"  After my, "OK, thanks.  Are you absolutely sure?"  her "Yes definitely," was not as solid as the first round.

When I pulled up to pay, I inquired about toys (boy toys and girl toys are not equal in my car when my kids get to actually have mcdonalds).  When the second teenager came back with her toy answer, she said, "Oh and also, there's dairy in our french fries."  She had to get a manager to get my money back, but I was very grateful that teenager number one had started asking around after taking my order until she found someone better informed.  My stomach thanks her, too.

They gave me five of my six dollars back (I kept my drink) and then also gave me the burger.  I just looked it up and found I can have that, but I'm a tad nauseous after the first few bites, so not sure what my body isn't liking.

All the same, this site was very helpful.  

http://www.godairyfree.org/dining-out/fast-food-restaurants/mcdonalds

I need to memorize a couple safe options from each fast food chain's menu, if for no other reason that eating safely in airports.

River Medicine: "There's a River with my name on it...."

I realized I need to post river pictures after reading the following in an article:

"There’s a river with my name on it…I don’t care if I have to stuff my I’ve-earned-this-ass into a bathing suit…the immediate relief on all things joint/muscle related is immeasurable!"

The article is Badass Gone Wild…uh…Camping on a blog called Lupus Interrupted.  This indicates to me that moms and sick people everywhere should do what she and I do at least once year, though my reprieve of this nature is 3 days and hers is ten.  

Ours is a group of moms on a float trip each July.  Our "Goddess" trip.  There really aren't words (though Kim puts it to verse each year).  So I'll put some picture up instead.  Enjoy, as these are enjoyable.  Can you even tell which women in these pictures are sick and which are not?  I didn't think so.

Travel medicine June 2012

My doctor hypothesized early in my illness that warm weather would help me if I felt good enough to travel.  My husband had his summer airline second job by then, so we tested it with a trip to Hawaii and though I spent a lot of time in the room resting, she was absolutely right.  My turtle trips started last year, and I slipped in a very brief one this year (a couple of weeks ago.  My friend Jenny, in some of my turtle pictures last year, happened to be on Oahu the same days as us.  This first photo is the kids waiting in the ocean while I talked with Greg about flight options for getting back.

Year of the Turtle 2012

I saw the emblem as the profile picture for Sea Turtle Oversight Protection on facebook today:

And I think 2012 is definitely the year of the turtle.  If I didn't start a turtle conservation page on this blog yet, I will.  And if I did, I'll update it.

Yesterday was a bit of a turtle day.  Christopher and I were at a local lake getting my last couple of lakes covered for our annual western Montana spring loon census, and there were no loons visible in the bright, bright, sun, but a painted turtle was sunning nearby and (surprisingly) chose to hang around (these duplicate some of the loon day photos in my Montana Momma blog).  

The S.T.O.P. post on facebook today that caught my attention was:

The Earth Oath. (say it & share it)

"To recognize in beings their capacity for love & their need for love. To befriend all Earth's creatures of the land, the sea and the air. To defend them against the ravages by humankind, & to inspire in humans, compassion for all."