Coping Without Proactive Care

Posted: June 19, 2017 in Uncategorized

I don’t like the word. It has a broad definition. It can have positive or negative meaning, depending on your personal context. For me, “cope” is synonymous with “struggle.” It’s juuuust squeaking by. It definitely does NOT mean “thrive,” or that my current quality of life is/would be tolerable for any other reasonable human. 

I am writing this for a few purposes:

1. I simply cannot be the only one trapped in an area where medical care has become reactive and responsive only if you check all the boxes in the doctors’ recipe books. Whatever happened to “quality of life?” That catchphrase has become as passé as leg warmers. Most of the docs I have encountered in the past few years seem hell -bent on trying to prove there is nothing physically wrong with me despite truckloads of evidence and decades of issues. So, basically, my healthcare is left completely up to me. Thank goodness I have a very strong research background and enjoy digging for answers. With the next few posts,  I want to share with others what products and strategies I use to get through each day – to “cope,” or – “suck-it-up.” 

2. To address the “try yoga, acupuncture, tong ren, riding unicorns” contingency that never seems to grasp that I’m a 40 year veteran of “sucking it up,” and that when you suffer as much as I have, there literally isn’t many options left that I have not tried. 

As usual, don’t expect rainbows, bunnies, smiling pictures of me wearing lippy and posing for imaginary paparazzi. That is just not how I roll. 

If you have read my “about me” posts over the past several years, you already know that I have some odd medical issues, mostly connective tissue weirdness, some possibly related to Ehlers Danlos, and certain maladies of which I express symptoms are known comorbitities. I guess I should dance with glee knowing that I not alone in my struggle. But, thanks to undiagnosable (or more accurate: blatantly ignored by health care providers) nerve damage/weakness/pain/muscle atrophy from my 2015 hip replacement, there will be no dancing here. 😐

“This Zebra’s Guide to Sucking It Up” will cover: 

1. Corseting for medical reasons (Hey! No judging without learning about real corsets! They aren’t just for fantasy/cosplay/Ren Faires.)

2. Compression wear/wraps/tape

3. Activity and sleep trackers

4. Compensation, adaptation and the cascade of suck – creative ways to “suck-it-up” 

Thanks for reading! 

  1. Edward Morea says:

    Thanks for expressing it so honestly, bluntly, with no sugar coats, it is important to express yourself with no pretensions of fake optimism and living life king size. But you are marching on, despite the problems, that is most important.

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