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Showing posts with the label Chronic Illness

Constant Vigilance

  I took some time off from blogging while I was a journalist. I've stepped away from that for health reasons, and am back to scratch my writing itches here.  Today's segment is a little pick-me-up for my fellow chronically ill peeps, or anyone who needs a gentle reminder to never give up, especially on yourself.     I’ve been lucky enough to work in many different industries throughout my life. One of the coolest jobs I’ve ever had was working as a Project Coordinator for a reality TV show that built classic American cars. It was my first time working professionally in Film & Television, but managed to land the gig because of all my prior experience working on classic Japanese cars, running a hot rod shop, and working in various parts positions. They needed someone who “spoke car” and was a proficient parts manager, while also being able to maintain smooth communication between the gearheads and production crew on-set.      It was a very dema...

Oscillation

My whole life, I’ve wanted to be someone else. I’ve always struggled with feeling like I’m too short or too fat or too hairy or too sickly or too insecure or too anxious or too dumb or too this or too that or not enough of anything to be worth loving as I am. This constant pursuit of trying to escape myself has translated into my career as well. I’ve always wanted to be one of the guys. Not in a gender identification sort of way, I actually have always been satisfied with and identified with being born female, despite all the woes and heartache and pain that comes with being born a natural woman -- something I am truly feeling as of late (oh the joys of the changes that come in the mid-thirties). No, when I say that I want to be one of the guys, it means that I have always enjoyed “guy” stuff more than “girl” stuff. Instead of playing house and dress-up, I climbed trees and played “Cowboys and Indians.” As I got older, I fell in love with cars , and found myself in automotive trade...

A few nature pics, notes about some things to come here on the blog, plus, "Flutterby" - A New Poem

Hello there! It's been longer than I prefer since I've last posted on here :/ Between the Neil Young concert my man and I were lucky enough to attend a few weeks ago upstate, being a heat sensitive person in the peak of New England summer (woah, humidity!), and the sudden drop in temps we've had over the last week (WTF, signs of Fall already? Winter is coming!  Ah, Rural Vermont Life), along with a few other health issues I won't get into, I have been pretty laid low. "Low on spoons" as they say ;) But, I'm back on my feet, caught up on a major freelance project I've been trying to hammer out for some time ( Shameless self-plug: Go get a subscription to Auto Restorer magazine! ), and am very excited about everything that is happening right now, including posts for this blog that I've been wanting to get out for some time. Driving Upstate Vermont in Late Summer is a glorious experience! :) A preview of what's to come: - A write-up about the Nei...

June 26th, 2015 – A Historical Day to Close Out an Epic Week - Presidents, Podcasts, Progress

(Started writing this on Friday, had to take lots of breaks to finish it to my standards and add hyperlinks/pics, so it's going up on Saturday afternoon, 7-27) The Supreme Court just ruled in favor of same sex marriage!!!! What a way to close out an epic week for progress! I learned rather belatedly that the feds cut off funding to the DEA for medical cannabis raids late last year, due to recent back lash from the Justice Department. Come on guys, just let it go already! Stop fucking with sick people and our right to choose our symptom management!  You'll come around eventually.  It was a close decision, 5-4, but history has been made on this day here in this country. My mind is totally blown . I had no idea this was going on, as I don't watch the news, and avoid it online (not on Facebook, my homepage is Google). Especially when the Fibromyalgia is kicking my ass like it has been for the last few weeks (boo). The decision was based upon the 14 th Amendment, and fro...

Staying Sane in the Midst of a Flare - Keep Pain/Suffering In Context

Been in a pretty rough spot the last few weeks or so due to a flare in my Fibro . Been having major problems with my arms . Had issues with them in the past, but not to this degree. The muscles, tendons, and joints hurt, ache, burn and my whole arms are very weak and shaky.  To the point where I can barely lift my can of seltzer water (*note to self - get straws*). It's terrifying and frustrating when you've been doing better for a while and then you get debilitated again. And having to manage the pain is the hardest part, not so much the physical side of it, yes that is a huge challenge, but the drugs sure help (" I don't like the drugs, but the drugs like me.") . Although they don't really make me very functional, just take away the urge to have my arms cut off in hopes of alleviating the pain. The harder part, for me anyway, is the mental side of pain. Of waking up in Level 10 pain for weeks straight, being too debilitated to do even little things like va...

Staying Positive While Living With a Chronic Illness - Comedy & Humor

Journal Entry from earlier this morning: "Rough start so far, but determined to turn things around. Emo and in pain from ovulation. Didn't sleep as long/deeply as needed and am exhausted and ready to go back to bed even though I just got up. Also stiff, sore, nauseous. Woke up sad/angry about my life circumstances - about feeling rejected/misunderstood by both sides of my family, about money, independence, my health and stamina and sun sensitivity, disability. My brain started going down fast. Started crying, feeling overwhelmed, wanted to break down and start destroying furniture and shit. But this energy does nothing positive or constructive for me at all, and I know everything I'm feeling is valid, but I must channel the river of my emotions accordingly so as not to get swept away in a path of irreversible destruction.  This day is mine , I claim it, to do with it as I please. I will focus on my blessings, all that I do have, and I will work my ass off to the best...

"The Cosmic Dance" - Poetry

Well good morning, beautiful piece of poetry I don't remember writing last night :) I'm diggin' the word play and theme of this one. Enjoy!  feeling sick but unbroken these words are spoken by a warrior with Yaqui provokin' the fight in my veins yeah you thought you killed us all off well, guess again we're too damned stubborn and strong to ever be kept down for long you see we've still got the Earth Mother connection Father Sky looking down, sending us lessons so easily missed by those all amiss lost and confused, like you're in a deep mist but with my Yoeme eyes I can see the inner workings and harmonies of this world, this universe, how ever many may be my culture claims Five but could be indefinitely ongoing, ever flowing outward and in like a fractal eternal, infinite look deep within and you'll find you're part of it too the entire universe is also in you and out at the same time reality is a mindfuck but it's fine, more than fine it's ...

Fibromyalgia/M.E./CFS/Invisible Illness Awareness Week

When you picture a disabled person, you're probably like I used to be. For me, the term "disabled" used to conjure images of quadriplegics, like Stephen Hawking, or the blind, or deaf. I had no clue there is a whole spectrum of disabilities out there, many of which aren't visible to the uneducated/inexperienced, nor that they can vary in severity from moment to moment and day to day. After the onset of what turned out to be Fibromyalgia in 2011, I have learned differently. Even though I'm half Mexican and used to sunbathe all day, one of the most debilitating symptoms I struggle with is a light sensitivity (UV rays). In fact, that is the primary reason my boyfriend and I left Boulder County, Colorado. At over a mile high and with more than 300 days of sunshine annually, I was literally stuck inside our apartment most of the day with the blinds drawn and tapestries over them because even then it was still too bright. I remember struggling to walk maybe a hundred fe...

Staying Positive While Living With A Chronic Illness - How I Use Philosophy & Psychology to Manage My Perspective

Oh  so  very flared up today and the last several days. Have been battling vertigo and brain fog pretty bad. Please pardon any typos or poorly constructed sentences as a result :) Spring is rough on my Fibromyalgia due to fluctuations in barometric pressure. Just gotta ride out a few more weeks. Then the weather should stop fluctuating from Winter to Summer, and finally settle into the warm glories of Summer in Vermont. Besides the ticks, mosquitoes, and poison oak, this place is heaven during the warmer months. Heaven all year really, if you're into the four seasons thing. Which I totally am. But I digress. I'm not here to talk to you about nature or the seasons or Vermont. Not  today,  anyhow. Today I want to share something very important to me, and maybe it will help someone else too. Living with a disabling chronic illness can be a total mindfuck .  There's a reason medical professionals tend to automatically dole out anti-depressants when a patient is dia...

"Warrior Cry" - Strength in Poetry

Been facing some personal challenges over the last week, from both flares in my Fibromyalgia and family issues. I try to maintain an ever positive outlook on life no matter what obstacles I'm facing, but often I find I must push through the darkness to find the light in these difficult situations. I must allow myself time to feel what I need to feel, to process my grief and other feelings. With release comes healing, and then the strength to move on. This morning was particularly challenging, and so I put on my headphones, blasted 10,000 Days by Tool at high volume, and this poem came out. It made me feel strong again. My hope in sharing it is that maybe it could help someone else.  I'm facing the abyss  once again I thought I'd left you for good old friend Things are amiss  when they should be golden Trying to be strong  without folding  But I fear this time I may actually break  I may have been given  more than I can take But I must make  m...

"Spoonie Rock" - Poetry

Breaking the poetry back out. This is a recent one, just wrote it last week. For my fellow "Spoonies", "Chronic Badasses", or anyone on the struggle...Keep up, stay strong! We all have moments of weakness in our battles - this was one of mine that I managed to turn around in the end.  For me, freewriting is one of the best forms of therapy. Hope you enjoy!  Please tell me that I'm strong enough for this When you look at me do you see my pain or strength? I'm trying to bend like a willow in the wind but I feel I might crack I fear I may break If I did a good thing then why  Why do I  why do I feel so sad? Why do I feel so bad?  why do I cry?  Why am I so beat down it's just a hurricane blowing everything around Flipping my world upside-down Heavy is the head that wears the crown These thorns in my flesh are spread all around Heart and Mind pound Feeling heavier than gravity Wanna crawl into a deep, underground cavity and rest  Say I did my best as I bre...

WTF Is Fibromyalgia?

Hello everyone! Thanks for checking out my latest blog post. My apologies that I haven’t been writing more, it’s been a great struggle for me. But I do plan on being here more often, sharing information from my journey that I hope will help others in similar situations. Hope you had a great Holiday and New Year surrounded by loved ones and delicious foods!  I’ve realized that I’ve not yet discussed my chronic illness in detail, so I would like to take some time to talk about that today.  Should you find anything useful on this here blog, please consider donating to my PayPay account (I’m working on adding Bitcoin here too!). I am unable to work at this time, but have not yet qualified for Disability, so no amount is too small.  Most of all I’m just flattered you’re here. Thanks for stopping by! WTF is Fibromyalgia?  Before the decline in my health in 2011, I’d never even heard of Fibromyalgia , nonetheless knew anything about this debilitating chronic illness. I didn...