Dignity and Adult Diapers

As a young, healthy person I always imagined that purchasing adult diapers would be the most mortifying thing. As someone living with chronic Lyme, I have learned that it is far worse to NEED adult diapers and not have them.

As you can imagine, travel is stressful which triggers Lyme flares. Somehow I remember to pack my emesis (barf) bags while traveling but always forget to consider “the other end.” Because of this I’ve purchased a variety of brands and styles out of desperation while away from home.

There is a wide variety on the level of dignity provided by different brands. Depends just feel humiliating to wear. I only wear them at night. There’s no way to comfortably wear them under clothing. They are baggy and horrible. On the other hand, Always are amazing. I’m currently wearing them under my jeans and they feel pretty much like regular underwear. I should say that I’ve never had a “full blow out” and it’s entirely possible that the Depends are more effective and that’s why they’re so baggy.

I’m sure I had a point when I began typing but I have Lyme disease and I forget shit…

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Brain Fog and Escalators

Many folks don’t understand that even the simplest activities can be too much when struggling with chronic pain, even going out to the movies. But I really wanted to see Atomic Blonde in the theater, so I put on my big girl panties and we went to the mall. My husband parked the car and we walked towards the escalators. I followed a young boy up the escalator. I kept walking but I wasn’t making progress. The young boy had made it to the top but I was still stuck at the bottom, continuing to walk wondering why I wasn’t also at the top. “Allegra,” my husband interrupted my struggling thoughts. “You’re on the down escalator.” Awoken from my fog, Jeff led me up the up escalator. We made it to the theater but I didn’t even remember the film and when it came out on HBO I thought I hadn’t seen it yet.

My working memory, short term memory, and general cognitive processing are frequently effected but never in a patterned, predicable manner. So I must figure out how to compensate on the fly. It’s often difficult to articulate thoughts or even find simple words at times, (“that thing, with the pages… that you… you know… read.” “You mean a book?” “Yes. That’s it. A book.”)

They call it Lyme brain fog (or cancer brain fog, etc.) and it feels like swimming through thick mud. If you’ve never experienced it, I’m sure it looks strange to a healthy person. But please, be gentle and compassionate with us. We’re doing the best we can.

Surviving Allergy Season

Omg. I’ve been dying this allergy season. If I’m outside for more than 5 minutes, my head starts thumping. I’m so desperate that I considered wearing a mask, but my glasses make over the ear masks difficult to wear. Exploring Amazon.Com I found an alternative! They go IN your nostrils. So far it’s comfortable but we’ll see how it works when I March for Science tomorrow.

Woody Knows Ultra Breathable Nasal Filters

TrUUmpism – Sermon – March 19, 2017

Melting-Pot Dharma

In the first few days after the November elections, the idea of wearing a safety pin made the rounds. A supply was distributed at the Friday night gathering we had at the church that week. The pins made a statement: Things may get rougher, and I hereby declare myself an ally of anyone being harassed or bullied. By wearing one, I intended to declare myself safe for women and minorities — immigrants, people of color, the LGBT and gender nonconforming community…and for Republicans and Trump supporters who felt they were unfairly being demonized.

But things were — and still are — so polarized I quickly feared that my safety pin would be seen as a symbol of only one of the poles, so I stopped wearing it. I mention that as a prelude to my sermon today. Unitarian Universalism’s first principle is to affirm and promote the inherent worth…

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Lyme be Weird – The Twilight Zone of Neurological Lyme

Will There be Cake?

The first week that I went from happy, functioning, not-sick Tara to holycowamIdying Tara, many bizarre and weird symptoms exploded, capsizing me in a downward death spiral into an abyss that I couldn’t even begin to explain to doctors. Yes, today, we explore the explainable Twilight Zone of Neurological Lyme.

Neurological Lyme, or Neuroborrelliosis, is when the nasty little bugs (borrelia spirochetes) that cause what we term “Lyme Disease”, infect the central nervous system (CNS). The CNS, in short, consists of the brain and spinal chord and assimilates information it receives from the body as well as directs and influences the activity of all parts of the body. There is also the peripheral nervous system (PNS) that consists of the network of nerves and nerve communication through the… not brain and spinal chord parts of the body. I’m real scientific guys so stay with me. Below is a diagram. There is…

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Hi! I’m still around… I promise.

Confession –  I have been terrible about keeping up with this blog (as if that isn’t completely obvious). For those of you that follow me on Facebook, you know that I’m able to share pithy, inspirational posts but I struggle to sit down at the computer and write meaningfully. There are all sorts of reasons for this (technology issues, graduate school PTSD, training) but they merely excuses.

I’ve had some great ideas for blog posts in the last several months, so my goal is to either write them or video them and share. Several are time contextual, so I’m thinking I’ll back date them (such as my “Training Like I’ve Received the Call” post) in an effort to avoid confusion. I’ve learned a lot on my journey to American Ninja Warrior and I want to share it with you all.

Mainly, I need to learn to put my butt in the chair and WRITE (a lesson many struggle with). Wish me luck! I hope see a lot more of y’all.

American Ninja Warrior, Here I Come!

Because I am ridiculously tenacious, I have applied to American Ninja Warrior again. I’m feeling so much more prepared this year than last. Last year I went in with the mindset that it would be a hoot and a good way to raise awareness for Lyme Disease. This year I am going in with the mindset of being a real competitor.

In addition to doing this for myself, I am also doing this for all my fellow warriors! When I want to give up, your support carries me through. It helps me dig down deep to find the strength to persevere. I know that I have to keep fighting because you all are out there, rooting for me and if I give up, you might give up too. We’ve created this beautiful feedback loop of support!

(Now that the taping of the show is in the can, I can share my application video with you)

Allegra’s ANW8 application video