Don’t Just Say “Buck Up!”

Allegra Knight:

Today’s service at UUCA. I hope it inspires you as much as it inspired me.

Originally posted on Soul Seeds:

From medical doctor Jeff Kane we hear this story, how “a university medical center surveyed its former patients about their experiences when hospitalized. One question was, ‘Of all personnel, which helped you most to feel better?’ Response categories included physicians, nurses, and technicians, but the runaway winner was a write-in: housekeepers. Who’s the housekeeper? She’s the lady with the aching back who wheels her mop bucket into your room in the quiet hours and asks, ‘How’re you doing?’ She probably hasn’t a notion of the condition of your intestines and coronaries. She’s there to clean the floor, but she needs to find a bit of rest first and would love a little company.” Dr. Kane concludes, “patients say they get their best emotional help from people who are interested in them, not particularly in their disease. When we feel recognized, witnessed, understood, we shine.”

I read this in Dr. Kane’s…

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ALS Ice Bucket Challenge with a Twist of Lyme

Doing the ice bucket challenge? Consider doing it with a Twist of Lyme! Give to LymeMD and ALS. http://www.lymemd.org http://www.alsa.org

I opted to do the ALS Ice Bucket Challenge and add in a Twist of Lyme. I did this because I suspect that, in at least some cases, that many autoimmune diseases (such as ALS, MS, Rheumatoid Arthritis, etc.) may be caused by the Lyme bacteria. Currently, Lyme research is underfunded. This NEEDS to change. There are so many unanswered questions when it comes to chronic Lyme. We need a formal research group at a major university investigating Lyme. I believe that Dr. John Aucott at LymeMD is best positioned to make this happen. There are so many great organizations that focus on Lyme awareness and I am grateful for the very important work they do. They have paved the way for us Lymies to be recognized and I am grateful but we need to fund research now.

So, I was terrified but I took the ice bucket challenge and gave it my own twist of Lyme. I gave $100 to ALS and $100 to LymeMD. Here is my video:

And, I started this movement with my family. My husband went first:

Then my niece:

Then my friend Stephanie joined in the movement:

My neice, Ashley braved the cold and so did her brother David. My friends Sarah and Nicole also joined in on the movement! I pray that the momentum continues to grow. If you are doing the ice bucket challenge, please consider adding in a twist of Lyme! Even just mentioning us helps build momentum and visibility.

And now my friend Michelle opted to do it with a Twist of Lyme!:

Jason also stepped up to the challenge:

My dear friend Ellie also accepted the challenge.

Possibly the funniest video came from Tosha:

The very brave Laurie, got out of bed and donned lyme green to tell her story and take the challenge:

What we really need is more Lymies to share their stories and explain why we need formal research into this very enigmatic disease. I know taking the ice bucket challenge is hard but this is an amazing opportunity to gain visibility and hopefully raise much need funds for Lyme research. Please consider rising to the task and sharing your story publically.

To understand the quality research being produced by LymeMD, here are two examples of peer reviewed articles they have published:

Characteristics of seroconversion and implications for diagnosis of post-treatment Lyme disease syndrome: acute and convalescent serology among a prospective cohort of early Lyme disease patients.

Serum Inflammatory Mediators as Markers of Human Lyme Disease Activity

Additionally, I found an entire website that claims there is a link between ALS and Lyme. Study: 9 in 10 ALS Patients infected with Lyme bacteria. However, I am not a scientist and cannot verify the degree of their scientific methodology. Caveat lector.

Thank you for taking the time to read this and hopefully you will share it widely! Bless you ALL!

Inspiration through Music

I’m seeing lots of posts of Lymies and Spoonies struggling. I too am in a lot of pain and am struggling with both addressing the pain and expressing it. A friend posted a status yesterday and I could tell she was getting to the end of her rope. For me, when I get to those moments of extreme trial and tribulation, I use little “tricks” to help me make it through… one more day, one more minute, one more breath. One of my favorite “tricks” is to sing this song to myself.

What songs inspire you? Share links in the comments!

“We are going, heaven knows where we are going,
We’ll know we’re there.
We will get there, heaven knows how we will get there,
We know we will.

It will be hard we know
And the road will be muddy and rough,
But we’ll get there, heaven knows how we will get there,
We know we will.

We are going, heaven knows where we are going,
We’ll know we’re there.”

Cognitive Miserliness and Spoons

Over Labor Day Weekend I attended Dragon*Con. I sat in on a panel discussion “Why Mensa Will Never Solve World Hunger”, which was about rationality in contrast to intelligence. The speaker, Barbara Drescher, spoke about cognitive miserliness: the idea that we use the minimum amount of energy to meet our cognitive needs.

Many Lymies and Spoonies talk about how they feel stupid due to Lyme Brain Fog, which has many potential causes including neurologic Lyme or because of the pain. If we build off of Christine’s spoon theory, then this makes sense that we use our limited energy to survive the pain, which does not leave us resources to use our cognition.

“The cognitive miser idea is fundamental in the information-processing model of social cognition because it would be enormously taxing on individuals’ to attend to all information in the world scientifically (basically, with a high degree of analysis), with individuals becoming overwhelmed by the confusion and complexity of the social stimuli that they are attending to.” [1]

I know that this is a significant point but, ironically, I struggle to articulate it. I promise to continue to mull it over and hopefully arrive at something poignant. If someone wants to help me develop this more fully, please let me know!

I miss the woman I used to be

It’s been quite a while since I’ve posted. I had a torturous sinus migraine for five days last week. As soon as I recovered, I had to play catch up on life. I have a hard time figuring out how to prioritize. Which comes first? School? Blogging? HOA Board of Directors work? Life? Me? I just move them around like a game of Three Card Monte never sure of what goes where. In the meantime, here is a blog post I wrote a few years ago. I hope it will suffice in the meantime.

I miss the woman I used to be. <– click here to read my old post.

“I Have a Dream” and Mantras

I have a confession: I don’t have a mantra*. This is not to say that I haven’t meditated with a mantra but many spiritually inclined people have a personal mantra that is theirs.  I have “tried on” many of the traditional mantras, but none felt quite right for me.

Today is the 50^th anniversary of Dr Martin Luther King, Jr.’s “I have a Dream” speech. In my Art of Teaching class today we watched his speech and the mantra “I have a dream” truly resonated for me. I plan on trying it out for a few weeks and see how it fits.

(channeling my best Rev King)

• I have a dream that I will regain my life.
• I have a dream that I will be able to support myself.
• I have a dream that awareness about Lyme Disease and its long term effects will become recognized.
• I have a dream that we will all return to health and wellness; that we all will over come the suffering that this unseen illness bears down upon us.
• I have a dream that I will be able think clearly, unburdened by Lyme brain fog.
• I have a dream that I will be strong again.

I will report back and let you know how it goes- if it still speaks to my heart or if I will continue to search for my mantra.

*Mantra: a word or sound repeated to aid in concentration during meditation or times of stress. I will discuss mantras more in future posts.

The Seven Principonies of Unitarian Universalism

Allegra Knight:

a clever take on an important aspect of my faith: Unitarian Universalism.

Originally posted on Lack Of A Clever Title:

Confound these ponies, they have found a way into my spirituality.

I’m a religious brony, I’m not afraid to admit it. I work a lot in my church with the teens and I have had to explain to a few of them what a brony is and had to defend why I am a brony to others. What I tell them is this: “The ponies have a lot to teach”

Every Saturday, I sit and watch the ponies with my 8 year old daughter and my 4 year old son. We laugh for a half hour and when the show is down, we turn off the television and talk for a few minutes about what we saw. I like to take the episodes lesson and see if they can apply it to their life. Often I find that it boils down to the Seven Principles of Unitarian Universalism, which got…

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