Tuesday, August 26, 2014

I am Intolerant.

I am intolerant of the use of the "N" Word. The "R" Word, or any derivative thereof. The "G" or "Q" or "H" or "D" or "F" Word. "S", "W", "C", "T-H", "J", "R", "M", XYZ OMG BBQ!!!11!

I grew up hearing some of these words, but not regularly. My grandma used the term "Darkies" from the pale, pale land of Northern Minnesota, and Grampa fought the"Japs" and saw them encroaching on his Pacific Northwest town. Even when I was young, I knew those were not words we used. There are words for those that speak Spanish, those that wear religious head-coverings, for immigrants, for those with ethnic features, and even for those born with a condition that makes then shorter than average.

"Mental Retardation" was a genuine diagnosis, but now variations are flung and meant to hurt. I know too many people with Autism or Down Syndrome or even learning disabilities that KNOW what these words mean to society and do not see them having anything to do with themselves.

My younger sister is a Lesbian. So when I hear "That's so gay", I am certain they aren't talking about one of the coolest people I know (after all, she did win "Rookie Teacher of the Year" at her school twice!) There are so many more descriptive words in the thesaurus, they just have to pick "odd", "weird", "unexpected", or...??? Any word that describes a person's sexuality or gender is not an appropriate epithet.  Calling a guy a "pussy" or a "girl" or telling them to "man up" conveys the whole female gender as a slur.

Rape is neither a joke nor a metaphor. Period. A friend recently had a tradesman in her house to quote a project. He was polite and funny and seemed to know his craft, but then said that he gave a discount, as he didn't want to rape her over the price. I asked how she dealt with it. Her response:
My approach is to say something like "oh man, please don't use that phrase, I don't like it." Then I continue talking about the job, or the price. I don't like confrontation, and this allows the guy to understand that he said something wrong, but he doesn't have to defend himself. Weak, I know, but it allows the conversation to continue. If he wants to go back and defend the rape comment, I'll be ready to give him plenty of reasons not to use it.
She did not award him the job. I respect her approach. Inform the offender that you do not like that word/phrase. If this is someone you hold authority over (child, student, employee) you can explain why this is not allowed. If it is a friend, you have a teachable moment. For a stranger, you let them know that what they said provoked a negative response. If they choose to pursue, have your reasons. If they do not, then it may be something they recall for the next time, especially if they start losing jobs!

Monday, July 14, 2014


Things I have found helpful for coping with my EDS 

Note, I said MY EDS. Because mine is not yours, or my mother’s or anybody else’s, but mayhaps it could be helpful to you or inspire you to find your own way 

Originally posted to STL Ehlers Danlos Support Group August 2013

Mobile Apps 

Apps for keeping track of pills, alerts for repeating plus “As Needed” 
  • Easy Pill for ios (iPhone, iPad, etc) I use every day to remind me to take my meds, and to keep track of my PRN meds for my pain management doctor 
  • Your Medicine 1-2-3 by Sombrero Mobile for Android I have not used, but found for a friend with chronic illness, and it appeared to have same functionality as Easy Pill 
Google Drive 
I keep a copy of my current medications, ICE contacts, diagnoses, surgeries, providers & insurance info on same doc. Separate doc with family history, and one with Advanced Directive. Easy to keep up to date once set up, and now have all that info at my fingertips on my phone. 


Wallet Card
I have a word template for printing wallet cards with critical info, in case I am incapacitated & info needed by first responders. No computer, phone or family member required to access. I polled friends that work in ER’s or as EMT’s, and services with online info or USB devices are not generally used in an urgent situation. So I print, fold, and then slide into a business-card sized lamination pouch. Since medications change frequently, I do not seal the pouch. I have plans with my sister-in-law to create some attractive jewelry with the medical alert symbols and text See Wallet ID, but could also add things 
like Latex Allergy or Penicillin Allergy, etc. - things critical in the first few minutes of treatment. Let me know if you would like me to send you the docx file. 
Medical Alert Bracelet
The emergency services' Star of Life features a rod of Asclepius

The one I currently wear came from the MedicAlert company, where I also paid for online EMR (Electronic Medical Record) with a number or website for a doctor. Since then, I have found that most doctors want to hear it from me, and first responders just don't have the time. I have plans to change to one simply with the Rod of Asclepius with the Star of Life as shown here, pointing to my wallet card.
More info about the symbol & history here: http://en.wikipedia.org/wiki/Rod_of_Asclepius

Pain Chart
Sooooo subjective. Are they asking about my worst pain EVER? Or my least and worst pain for this specific issue? I smile and joke even when I am at a 9+++. I found the blog Hyperbole and a Half and adapted her post about pain to this one page Pain Level Chart. I did take the liberty of toning down the language a wee bit. 

Interesting factoids  

 When I was diagnosed a few years back, I waited for a while to read much about it. Perhaps some denial, or just overwhelmed, but I just didn't do much reading or finding forums. But I do remember one tidbit of info that I will have to look up & link to here. Kids with EDS are sometimes misdiagnosed with Asperger’s Syndrome, or high functioning autism, as it is now called. One of the big factors is the sensory issues, whether it be the touch of clothing, bedding or humans, reactions to sound or photosensitivity, a kid with EDS doesn't know how to express those intolerances and may be in pain, therefore may not be functioning as typical students. My 12 year old nephew has autism and is barely 
verbal, communicating on the level of a 2 year old, though he very obviously has the intellect of someone his age. Since he lives in CA and I live in STL, I volunteer for the Walk Now for Autism Speaks, sharing my enthusiasm and skills, though these days the actual walk is harder and harder.

Sunday, June 15, 2014

Caffeination or Caffeine Nation


I am enjoying this lazy Sunday morning with a glass of cold-brewed coffee, with just a bit of sweetener and no milk or creamer. The beauty of toddy coffee is the flavor is so good and the acidity so low (67% less than traditional brew!), that I do not need to add all the cream & sugar as I do with regular drip. I have IBS (Irritable Bowel Syndrome) and yes, it is as unpleasant as it sounds, so the lower acidity is a great help. I think the organic beans I use contribute, too.

The method to my madness

We now have a Kurig machine at the office, but it is only stocked with a breakfast blend, which I find too acidic. So I purchased a reusable K cup from Ekobrew and  bring in my own ground coffee. The metal mesh is not perfect, so I brew into a drinking glass, then pour over ice. Even in the winter I am drinking iced coffee!

I have not owned a drip machine for over 5 years, instead using Melitta pour over cone - either the single serving directly into my mug or thermal tumbler, or the 8-cup into a glass carafe, which then goes into a pre-warmed thermal carafe - or the Toddy Cold Brew system:

Why Toddy Cold Brew? 

During the cold-brew process, time replaces heat. Todd Simpson, a chemical engineering graduate of Cornell, and who developed the Toddy cold brew system, discovered that high temperature facilitates the release of undesirable flavor elements.
A roasted coffee bean contains many compounds that are extracted during the brewing process. Some of those compounds, including certain oils and fatty acids, are soluble only at a high temperature. During the cold brew process, coffee beans are never exposed to high temperature (this only occurs after a rich liquid coffee concentrate has been produced).
Deceptively simple, cold water brewing extracts the delicious flavor compounds (and some of the caffeine) from coffee beans, but leaves behind myriad bitter oils and biting fatty acids, including undesirable elements such as ketons, esters and amids.
These are the same bitter acids and fatty oils that surface to the top of your hot cup of coffee, and give hot-brewed coffee that familiar 'bite' (thus the reason that some 8 out of 10 people attempt to soften the acidic taste by adding milk or cream to their coffee).
The cold brew process creates a perfectly balanced and distinctively smooth cup of coffee - served steaming hot or iced cold. You're invited to taste the Toddy difference: the same taste that has delighted coffee drinkers for nearly 50 years.

Beans, Beans, the magical fruit

Hubby & I moved into our house almost 9 years ago, and just over 5 years ago, this little shop opened up on a corner nearby. I stopped in during the Grand Opening, and have been a loyal customer/evangelist ever since! Besides being a cornerstone of our nation's first "Green Dining District", FoGro has wonderful food, incredible customer service, and a great family of owners, workers, and customers.

Foundation Grounds uses only Goshen coffee to make their black gold, so I started buying my freshly-roasted beans and enjoy the flavor & supporting two local businesses.
Goshen Coffee organic, fair-trade, roasted right over the Mississippi in Edwardsville, IL

To hold the beans, I picked up the AirScape by Planetary Design from Foundation Grounds. At first I used it for the pre-ground beans I use at the office, but the vacuum seal is too good & would coat everything nearby with little black specks. So I took it home & use it for the whole beans - so much better!


I rarely use a ceramic coffee cup. I am waaay to clumsy for drinks without lids, so here is my lineup:
Contigo AutoSeal Travel Mugs - One handed operation, seals completely so I can throw in my purse or backpack.
Tervis Tumbler-Motherboard - Made in USA, lifetime guarantee, with excellent exchange if any issues (I know first hand!) and a full 24 ounces - perfect for the office.
CamelBak Insulated Water Bottle  Flip, Bite & Sip operation, so it completely seals, no condensation buildup on outside, and 20 oz. I have extra straws & bitevalves, so this is a staple for water, iced coffee, or icedtea. I attach it to my purse or backpack with a carabiner through the loop handle.

Coffea arabica: Caffeine - 1,3,7-Trimethyl-3,7-dihydro- purine-2,6-dione

Am I a coffee snob? Yeah, kinda. 
Am I a coffee geek? Yep, definitely!