Turtle Medicine: Stories of a CFIDS/Lyme Disease Mom

Lyme Awareness Month, Post One: Life after Lyme links

2013-05-06T13:49:00.000-06:00

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."

out of the lyme light: Antibiotics: The Controversy

2013-03-31T00:38:00.001-06:00

This a different branch of controversy (of the many), but the same kind of logical disjunct exists here as in the issues I've been dwelling on in my recent posts (mostly the odd reasoning 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).

This article is also very pertinent to Senate Bill 296 (Montana, recently tabled) and major issues wotj treatment paradigms it attempts to address.

Anyway, good blog and good article:

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 bac...

PLEASE HELP Montanans with Lyme disease: Senate Bill 296

2013-03-22T00:06:00.000-06:00

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).

Montana Momma post about SB 296

SB 296 video

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

2013-03-18T18:27:00.002-06:00

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

2013-03-17T22:07:00.001-06:00

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)

2013-02-08T15:23:00.000-07:00

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

2013-01-31T14:10:00.001-07:00

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

2013-01-05T22:38:00.001-07:00

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

2012-12-16T18:33:00.000-07:00

http://www.facebook.com/CfidsAngelBlogs

A smile

2012-12-15T18:30:00.000-07:00

Strength is Happiness

2012-12-06T22:47:00.001-07:00

Cute videos from Vegas (Roxy's Diner)

2012-11-20T00:28:00.001-07:00

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

2012-10-24T00:41:00.001-06:00

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

2012-08-29T19:51:00.002-06:00

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...."

2012-07-27T20:58:00.000-06:00

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 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

2012-07-19T21:33:00.003-06:00

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

2012-05-15T11:15:00.002-06:00

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."

3 days to my 'Bellaversary'

2012-04-13T08:28:00.001-06:00

Bell's palsy people note the anniversary of their onsets. Maybe more so when it doesn't go away. Mine did, but I realized the other day that it's almost been 2 years.

Bell's palsy folks have a tight community. Far more people look at the forums than post, but that is partly human nature and partly the adjustment period after onset. That sense of community and the time people took to post what they'd experienced helped me through in ways not other information source good. We take posts with a grain of salt knowing medical info and theories have to be verified before we adjust our medical care, but we learn through experience what works.

Each disease has a community now, with forums, blogs, advocacy groups, and in many cases actual resources available through major medical institutions. But if people didn't take the time, none of it would be there.

Blogging can seem a bit silly to people who don't do it. It can even be a bit risky, depending what types of peripheral issues your illness may bring (employment issues, disability issues, discrimination issues, etc). But I'm so glad people do it. My life as a sick person the past couple of years was so much better and easier for it (the term easy being very relative).

I've blogged much less about illness since returning to work. I also paired back my disability blog a lot, mostly for fear of legal ramifications, but also for a smoother transition back. My blogging didn't start during Bell's, as I couldn't have looked at a screen that long. I started a good ways in to my Chronic Fatigue Syndrome diagnosis. But I'm glad I started. It's a small role, but a way to build awareness and advocacy.

Social media is really something; I certainly didn't imagine it would play such an enormous role in my recovery (which I'll describe more tomorrow; for now it's time to work).

But the BEST resource for Bell's palsy was this forum: http://www.bellspalsy.net/forums.php

Freedom ~ Clark Little Photography

2012-03-19T22:11:00.002-06:00

Flame ~ Clark Little ~ click here

I was searching for Clark Little while looking at photos on facebook (Amazing Earth via Like Animals); I couldn't remember his name, but I'd been wanting to remember so I could show my kids his photos. I picked up a book in Waikiki in a shop and was mesmerized. I never got around to looking at anything else in the shop. What I recall reading that day was that his wife asked him to take a picture of a wave for their bedroom, which sparked his amazing art.

Tonight, picture by picture, I am finding solace and peace in these photos. His turtle photos are amazing, but some of the wave shots are just amazing (I want to highlight a few of those favorites, too, but will probably save those for another night). Since the turtles are spread out, I'm posting links to the turtle pictures I saw (I'm trying to keep the pictures big enough to see his watermarks), and its worth clicking on each because they are so much bigger and better in his gallery, plus his books contain even more. I plan to order a print for my wall at some point, but have to figure out which one and where it'll go, plus catch up on bills for a while.

But you truly can't think of bills when you open his site, and a slide show starts that'll stop you breath....you REALLY need to give yourself at least a minute or two on his site.

Dancing Honu

http://www.clarklittlephotography.com/gallery/detail/330.html

Freedom

http://www.clarklittlephotography.com/gallery/detail/438.html

Flying Honu

http://www.clarklittlephotography.com/gallery/detail/460.html

Cruiser

http://www.clarklittlephotography.com/gallery/detail/460.html

Heavenly Honu

http://www.clarklittlephotography.com/gallery/detail/385.html

Kame

http://www.clarklittlephotography.com/gallery/detail/468.html

15 Ways to Stop Obsessing ~ Article Link

2012-03-19T17:00:00.000-06:00

When you are grounded in the moment, you’re not thinking of what bad things can happen to you in the future, or dwelling on the mistakes of your past."

"Obsessions are almost always rooted in our attachments. So if we can think of them as borrowed from God—that God alone is the owner of this thing about which we are obsessing--we tend to become less greedy and possessive with our gifts, material and otherwise. In this way, we are mere stewards of whatever God has graciously given us."

Read more: http://www.beliefnet.com/Health/Emotional-Health/Bipolar/15-Ways-to-Stop-Obsessing.aspx?p=15#ixzz1pWrh3nmv

Beatles a capella covers (for this gray Montana day)

2012-03-18T18:12:00.002-06:00

I was talking to other fire-wife-moms last night, and the grayness of Montana winters came up a couple of times from people realizing how little we recognize how much we are impacted by the gray of our winters.

Things like Seasonal Affective Disorder are talked about quite a bit in places like Alaska during winter, with college campus health centers even providing multi-station uv light consoles the way a public library would provide computers. And in the Pacific Northwest, cities like Seattle are known for their depressingly rainy winters. But in Montana, we mostly talk about winter in fairly positive terms because so many of us spend our time outside when the snow falls.

When I lived in Alaska, my first winter was bliss; I even rode my bike to school through the winter and occasionally skied to campus. My second winter, though, when I was pregnant and unable to do the same high impact (and somewhat high risk) physical activities, winter was another story altogether, I has much more empathy for the many friends up there (especially people born and raised there) significantly impacted by winter blues.

On the medical side of things, UV light and travel can be very helpful during winter. But on a less-than-medical and less-than-long-term-solution-finding note, indoor fun is good where you can find it.

Which brings us back the Beatles. I swiped these youtube shares from facebook. Watch and enjoy.

"And that, Ladies and Gentlemen, is what PENE feels like to me."

2012-02-07T08:09:00.000-07:00

A great blog article on post exertional malaise, here refered to as Post-Exertional Neuroimmune Exhaustion

http://onelifeintheshadows.blogspot.com/

Blog post you should read: Internet mistakes to avoid (WEGO Health)

2012-01-27T08:04:00.000-07:00

New patients should read this, seasoned patients should add comments to it.....valuable points

Mistakes Patients Should Avoid When First Taking to the Web

"Yes, information is the very first step toward empowerment – but (and this is a significant but) – these searches and health info sites can easily overwhelm you. Before you know it you’re scaring yourself into thinking of the worst. You’re hearing about symptoms, outcomes, and other frightening things all at once. Instead of overwhelming yourself, pause, and consider asking someone you trust to look for you (or alongside you). And, instead of just looking for articles and hard facts – seek out patient communities. The narrative piece and community piece are going to give you solace and honesty along with the facts. Look for patient leaders and community members who can humanize the black and white and fill in where your care team may have left off."

Two interesting articles....

2012-01-26T07:45:00.002-07:00

Two recent interesting articles at a site called 'Disability Scoop'

State Special Education Rates Vary Widely

Workplace Discrimination Claims on the Rise

What are you doing new years eve?

2011-12-31T23:50:00.001-07:00