The beauty of chronic illness

The gifts (yes, I said gifts) of chronic illness are beautifully stated in this excerpt from Candice, a contributor to the SpiroChicks blog. (Link to the full article provided below.) I read this and the word initiation came to mind again.

<<snip>>

"Illness has a way of stripping life of glamor, glitz, and the nuances that blind us to what lays before us. Illness exposes weaknesses while unearthing strength, and reveals what is real and what was merely smoke and mirrors. It quakes a life until its cracks widen and what is feeble falls away, and leaves what is relentlessly real standing clearly in front of us. Living life with an illness has proven to be one of the truest ways to live and has blessed me with the opportunity to witness raw courage, true compassion, and authentic love. For that, I am grateful."

<<snip>>

Wow!

http://www.spirochicks.com/2011/10/hospital-tales.html 

  

Disturbing word of the day: Detritus

"The organic debris formed from the decay of organisms"

Yale University studies show that detritus persists in mice after the bacteria is killed (that is, if it is indeed killed, which is still a major debate!):

"...proteins from the bacteria persisted in the mice’s joints and near their cartilage. And the animals’ immune systems produced antigens to attack the dead stuff, causing inflammation and potentially arthritis.

This study provides the first direct evidence that spirochete proteins can remain long after the bacterium is gone, and in places where people can experience symptoms after treatment for Lyme disease,” Bockenstedt says in a Yale press release."

 

Check out Columbia University!

I'm so impressed by the ongoing studies by Columbia University and their very informative website!  I'm considering looking into being part of their study.  Since I don't live in NY, I think I'd be a one-shot visit but I am a textbook case for their studies on neurological Lyme.

http://www.columbia-lyme.org/index.html

They have a link to videos, games and powerpoint presentations for kids and although I have mixed feelings about this video, I am still laughing over "slime disease."

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=728:new-free-a-fun-lyme-prevention-video-game-for-kids&catid=12:lyme-in-the-schools-&Itemid=147 

Introducing some of the offspring from my marriage to the couch

Always look on the bright side of life. I'm grateful to be a Sagittarian with a sense of humor.

The mitts were a gift for my friend Sue who gave me the yarn (a friend of her's had spun and dyed the wool) and I made a pair of socks to match but forgot to take a picture.

The socks I made for myself are even cuter than the photos and the stretchy cotton is yummy!

The fireplace is my first interior paint job ever.  See the "before" picture underneath.  

 

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Sea-Bands!! I love them!

Safe and effective relief from nausea using acupressure.  These are amazing!  I'm bling-ing mine up with glittery nail polish over the ball and perhaps adding a bead and some fabric glitter.  No point in missing the opportunity to make a fun-ctional fashion statement!!

 

http://www.sea-band.com/

And as promised, here's a photo of my blinged bands.  I used some beautiful labradorite beads, re-worked from a pair of earrings made by my friend Passia, along with a couple of other beads and some fabric glitter.  Sadly, the awesome flashes of blue in the stones and the gorgeous glitter don't show up well in the photos, but just imagine...

Is the Intoxicated Penguin Walk a good thing, or a bad thing?

Every morning when I get out of bed, and often when I just get up from sitting, my hip joints are so inflexible with pain that I can only take tiny little steps until I loosen up.  My partner told me one morning that I looked like a penguin, he was right and his comedic timing priceless in lifting my spirits.  After all, penguins are adorable so what's not to love about looking like one?  

That's the penguin part.  The intoxicated bit is one of those on-going questions for me (doctors have lots of opinions both ways, so again I must be my own expert and figure out this mystery.)  I get very dizzy, come close to fainting sometimes, and can have head rushes, complete with stars, for several minutes.  Is it the bacteria dying off and creating a herxheimers reaction or is this a side effect of the medication (and if so, is that a bad thing or something that will resolve over time?) or is it something entirely unrelated like my historically low blood pressure?

Having had what's called "neuro Lyme" (the bacteria crossed the blood/brain barrier because I went untreated for almost 3 years, and trust me - a bacterial infection in your brain is not fun) this feels like the old herxing days.  But then again, its been 10 years and these are all new drugs.  What's a tick bit chick to do?

For now, I'll continue the Intoxicated Penguin Walk.  I'll give the protocol a few weeks and see what happens.  Wish me luck!

We are waking up, but oh-so-slowly

At last...

"The House Appropriations Committee acknowledges the need for continued research regarding Lyme and other tick-borne illnesses."

http://lymedisease.org/news/lyme_disease_views/gibson-amendment-passes-committee-2.html

"Under Our Skin" ~ an incredible documentary on chronic Lyme and the politics of medicine

This documentary is amazing, informative, powerful and free to view on Hulu (and I hear Netflix, too.)  It also exposes part of the underbelly of our health care marketplace, how big money is causing big suffering, why people are not getting treated and doctors are getting sued for treating patients.  Worth the watch!

Also, for parents, if your child is suddenly showing signs of ADHD or ADD and has never done so before, think back to a cold or flu that might have kick-started it and ask your doctor about Lyme.

Here's a link to the trailer and website:

http://www.underourskin.com/ 

SpiroChicks - a fun blog...

A friend of mine (also a "Lymie" as we often call ourselves) turned me onto this blog.  I love the artwork, the title and the overall vibe.

http://www.spirochicks.com/ 

Drugs, drugs, drugs. Oh my goodness, all the drugs.

The first time around, I was prescribed all kinds of antibiotics along with other symptom-management drugs, but things have changed in the research and treatment of Lyme and its co-infections (which is a whole new chapter in the nightmare series on tick-borne illness.)  

So today, my current regime is antibiotics, anti-parasitics, anti-malarial drugs, Vitamin D (a hormone, not a vitamin) teasel root tincture, and other symptom management drugs.  It's a bit staggering and my deep hope is that I'm making the right choices for this time in my healing process. 

I continue to research alternative therapies and am consulting lots of people about my options.  There is no consensus out there and what works for one person, doesn't always work for another.  It's a big guessing game.

A couple of noteworthy items have come my way in the last couple of days: RIFE machines and this very weird article about a special tick-borne disease in central Virginia causing beef allergies. (Yes, those new chapters in the nightmare series are rolling in at an alarming rate!)

About RIFE machines - I don't know anything about healing with frequencies, but it sure makes sense to me and lots of chronic Lyme sufferers are finding relief.  I'll do more investigation and see where to find a good machine for a reasonable price.  Here's a link about this groovy technology (and seems to be real good news for cancer patients, too.)  

 http://info.lymebook.com/listings.htm

About beef allergies!  Yes, a rise in beef allergies in central Virginia have been connected to the bite of a Lone Star Tick!  This is just weird!  I am primarily a vegetarian.  I eat fish and chicken from time to time, and usually about twice a year, I crave beef and will eat it. Both of the times in 2008 that I had beef, I broke out in hives.  The first time was a mild-ish case that a couple of benedryl knocked out. (I attributed the hives to stress because I was in transit to Diana's Grove for a 4-month internship and was embarking on a huge adventure.) The second time, we almost made a trip to the ER (in hindsight, I really should have gone to the hospital.  My eyes were swollen shut and I had a hard time breathing.)  I remember hearing of at least 2 other local people that had the same thing happen: never had a food allergy and suddenly allergic to beef. I assumed it was something being done to the cattle, or meat processing, or an allergy to the antibiotics given to the cows, etc.  Well, mystery solved!!  I came across this yesterday.  What a trip.  ABC has more articles on their website.  

http://www.huffingtonpost.com/2012/06/20/lone-star-tick-meat-allergy-bites_n_1613258.html

Days later, an update...

I spoke to someone in my doctor's office yesterday. I had left a message regarding the effects of the drugs and asking if I should continue to take them and push through it or stop some of them. She talked with the doctor and he said that my intense reaction to the anti-malarial drugs was quite common (I'm still not clear if it was causing a herx, but she implied this was the case) - and - to stop taking it. Let me tell you, I felt GREAT yesterday (of course, I mean that comparatively.) The couch and I hardly saw each other. That makes me smile. I've never enjoyed house work so much! It's a joyous feeling to have the energy and freedom from debilitating pain. Oh, the things that can change my perspective...

Past to Present - a Timeline

July 1997 - Infected, sick and no diagnosis
Summer 1999 - IV ozone therapy and blood irradiation (positive effect but inaccessible)
January 2000 - Disabled
March 2000 - Diagnosed with Lyme (Positive test) and began oral anti-biotics
March 2003 - PICC line to administer IV antibiotics directly into my heart for 21 days
April 2003 to August 2011 - Minor symptoms pursue but overall health is pretty good
November 2011 - Steroid shot for hip pain, original symptoms begin to creep back in
March 2012 - Going through the drill of finding a doctor that will treat me
May 2012 to Present - Seeing a Lyme specialist in Maryland, consulting an herbalist, and researching the latest cures and symptom relief protocol. 

Welcome to my blog!

I started this blog for many reasons.  My life with Lyme Disease has been an amazing, rewarding, heartbreaking, frustrating, funny, and wildly weird experience.  I  share my stories, struggles and triumphs

• to exchange hope, insight, information, and wisdom
• to open to and receive relentless support  
• to be a voice for change in the health care system 
• to process my own stuff 
• to network 
• to help find a cure 
• to laugh, inspire and be inspired

Welcome to my blog!