Tick Prevention! Please read and share to protect yourself and loved ones during Tick season!

Allegra Knight:

See that itty-bitty speck? That’s what stole my life. Please protect yourself!

Originally posted on My Lyme Disease Blog:

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I’ve already received 4 messages from people just in this last week regarding Tick bites. PLEASE, PLEASE remember right now the nymph (babies) ticks are out!! So when you are outside whether you are hiking, playing in the yard, gardening, camping or even at a local park do a tick check when you come home. Here are some tips I would suggest too…these are cheap products that can help.

1. Wear some kind of hat
2. Wear light colored clothing so that you can see the ticks
3. Cover any or all exposed areas such as your ankles, arms, & legs. Ticks love the warmer spots like your Ears, armpits, groin, etc. I know it can be hot to wear long clothes in the spring/summer so if you prefer there are products that help protect from ticks such as…

A. Permethrin Spray, this is good through 6 washes of clothing-

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There are bad days too…

Today I woke up feeling terrible. I could barely make it down the stairs. I was scheduled to ride my horse but was going to cancel because I didn’t think I could do it. But, with the help of my friends, I was able to make it out to the barn and get some good horse therapy. Unfortunately, the heat got to me and now I’m not doing well.

Since I show you all what I look like when I’m strong, I feel that it is only appropriate that I show you my bad days too:

Thank you all for your continued support!! I promise I’ll be up and fighting again shortly.

Explaining to the lay person what chronic Lyme feels like

I have no doubt that my husband loves me but I know that it frustrates him when I try to explain that he will never be able to understand what I’m experiencing. After a great talk today I think I may have come up with a way that can help him at least wrap his brain around it. I thought I would share it with you all too.

Imagine the worst case of Mono that lasts for 3 months, leaving you unable to lift your head off of the bed or take care of your basic personal hygiene unassisted. Now add in excruciating joint pain, migraines, and constant nausea. On top of that your cognition is effected: you have lost your short term memory and your working memory is hampered (you can no longer manage complex reasoning and are unable to find the word your are looking for). You may or may not be able to read and write. Any allergic reaction sends you into a tail spin (because it makes sense that an immune response would trigger an autoimmune reaction) so you live in constant fear of mold/hay fever/etc. You may or may not suffer from chronic insomnia or you might sleep 23 hours a day (and don’t you dare say that you would love to sleep 23 hours a day!! That is arguably the cruelest thing you could say to someone with a chronic condition). Your life is stolen from you while you are in the prime of your life, leaving you broken and despondent. Many sink into deep depression. Your friends and family abandon you because you are no longer “fun to be around.” There are many other symptoms to add in but this gives you an idea…

Now multiply this by years.

Now you may have an inkling of an idea of what we go through and why we get upset when you say, “oh yeah. I get tired too.”

I hope this helps give a better picture of what it feels like to be trapped in the body of someone with Chronic Lyme. Was this helpful? Did I leave anything out? Tell me in the comments below.

The Starfish Story: one step towards changing the world

Allegra Knight:

I’ve always lived this parable. Sometimes our actions may seem futile, but I know that if I can help one person that I’ve made a difference. As Mother Teresa said, “Not all of us can do great things, but we can we do small things with great love.”

Originally posted on EventsForChange:

You may have heard this one, but I find that it doesn’t hurt to be reminded of it every once in a while.  First let me tell you the story, and then we can talk about it. 

Once upon a time, there was an old man who used to go to the ocean to do his writing. He had a habit of walking on the beach every morning before he began his work. Early one morning, he was walking along the shore after a big storm had passed and found the vast beach littered with starfish as far as the eye could see, stretching in both directions. 

Off in the distance, the old man noticed a small boy approaching.  As the boy walked, he paused every so often and as he grew closer, the man could see that he was occasionally bending down to pick up an object and throw it into the sea.  The boy came closer still and the man…

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Why American Ninja Warrior?

I was super sick when American Ninja Warrior resurged in the US. I got it into my head that I was going to fight back from Lyme and I was going to compete on this TV show. Forget the fact that even pre-Lyme I would have had no shot at a successful run of the course, I was bound and determined. For some reason this seemed like a perfectly reasonable goal for a woman who was bedridden and required assistance to complete the most minor of tasks, including making it to the restroom.

Yet once I completed graduate school, another task that should have been impossible for someone who had lost their short-term memory due to the Lyme bacteria burrowing into my brain (or whatever it does, I’m not a neuroscientist), American Ninja Warrior appeared on par to me. Add to it that my dear husband supported me in this outrageous goal.

Applying alone was a herculean task. There was a multipage written application with each page having 15-30 questions each. And then there was the video… I had absolutely no idea how to film and edit a video. But Jeff rose to the task and taught himself Adobe and put together an amazing video (which you can watch here).

Keeping up my physical strength is huge part of my attempt to regain some sense of normalcy in my post-Lyme life. I rock climb, ride my horse, do this amazing thing called RedCord… but what I learned is in order to be a viable candidate, I had to step up my game. I added in Crossover Martial Arts, Kettlebells and NinjaKour. I treated this as a full time job.

I’ve answered the how but I haven’t touched on the why…

I wanted to do this for so many reasons. My original reason was because everyone told me I couldn’t. I wanted to show them all that I may have stumbled temporarily but that I was not staying down. I also wanted to bring attention to the plight of the Chronic Lyme sufferer. Honestly, I originally treated it as a bit of a publicity stunt. But through this journey my motivation shifted- when I announced that I had actually submitted my application, I was flooded with messages of people telling me how I inspired them to keep going in their personal struggles. They said that seeing me fighting back helped them do the same- no matter what, even if it’s baby steps day to day, moment to moment. Then I realized that I wanted to get on the TV to show everyone that they too can keep fighting. Whether it’s Lyme, or depression, or cancer, or your spouse left you… all of these things are equally impactful and you too can keep going.

No matter what happens on this journey, I have no regrets!

Lyme Disease Challenge

I’m back!

I terribly sorry that I disappeared; as those of you with Lyme know- this journey is prone to pitfalls and peaks. Last year was a rough year for me. This year has been challenging but in the good type of challenging way. I promise to make all sorts of posts filling you in on my journey!

In the meantime I would like your opinion: which is a better/more convenient/easier way to communicate? Would you prefer written blog posts? Or vlogs (video blogs)? Or a mixture of the two?

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.”

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I read this in Dr. Kane’s…

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