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.