So it goes... ‏

I've been doing 40 acts for Lent this year. Basically I try every day to go out of my way to give back to others or the community, to do something special for acquaintances, friends, loved ones or even complete strangers. I've done alot of good so far. I post sometimes on twitter different things that I've done. I was posting more often about it, but at some point it started to feel like bragging and that's not what its about. So now I don't post as often, but that doesn't mean I'm not actively trying to make the world a better place one small kindness at a time.

Just because I do these things doesn't excuse everything else I've done though. And I must have done some seriously bad fucking things. Now to my knowledge I have not killed anyone or even invoked the power of voodoo against anybody. I've lived a pretty average life. I've tried not to hurt people but as we sometimes do, we hurt others unintentionally and oftentimes without even knowing. But at some point in my short life I must have done quite the injustice to incur the karma-wrath that hit me last week.

Last week was simply dreadful! Like if our lives were orchestrated by some great being, this past week of my life was in the hands of this guy from Fantasia.

It was a hell of a week. I was seriously bone tired by Tuesday but had to keep going until the week’s end. Constant stress at work, pressing matters at home, lack of sleep, shifting schedules, sick parents, and the millions of other little things that come along, left me physically exhausted and possibly mentally too but I was too tired to really care about that. So instead of Jimmy Buffet's line "Come Monday it'll be alright.", my mantra was "Come Friday, it'll be alright" however I discovered that Friday didn't really solve it.

The thing that sucks, well I guess one of the things that suck about being a medical marvel with a chronic illness is that week long activities, that most people take for granted, do more damage than what I’d care to admit as the changes in schedule and lack of sleep weaken an already temperamental immune system. The constant going triggered a pain flare up and all of the stress caused the oh so delightful reoccurring mouth sores to appear. Totes didn’t miss those I’ll be honest. So waiting for Friday didn’t really do much for me. However it did provide me with that magical thing called "The Weekend". A 48-hour period for me rehab and relax and let me tell you readers, I sucked every last second out of it. So whether you are able to spend your weekend active, inside, outside or just relaxing, I hope you find some pure enjoyment out of it. For me I spend it doing what I can so that I can be ready to start the process all over again come Monday.

So it goes, so it goes...stupid circle of life.

-golden

Sometimes social media suprises ya

There are optimist and pessimist. I have been both at different times throughout my life but I seemed to have settled on being a realist. It may be due to me being a Gemini, or that may be just a Bullshit excuse and my feelings are just due to my upbringing and life experiences, but whatever the reason I am dualistic in nature. I have this desire for good to overcome evil, a desire for happiness to win out, a belief that right is...well, right. But because I live and breathe I know that deception gets ahead, bad is bolder, and negativity is suffocating.

In these modern times we live in, it seems that the majority of the human population exist on some form of social media. Social media can often times be a cruel hateful bitch. People can take your identity, find out your dark secrets, and even (what I consider the most heartbreaking) use it as a format for 'cyberbullying'. I recently closed my facebook account. It became depressing. I would see posts from people talking about how amazingly perfect their life was. Storybook, with the perfectly handsome spouse, perfectly behaved kids, perfectly designed home, perfectly expensive cars. But it was just surface perfection. Empty and sad. Then there were posts from those who seem to never have anything positive to say. Always complaining and putting people down based on their beliefs, life choices, politics, anything. Just hateful. Then there were people who were just nosy and wanted to keep in touch not out of true friendship, but just to keep tabs on your life progress. So I pulled the plug on that. I've been on Twitter forever and just find it to be more pleasant and fun so that's where I've stayed.

 

This week I was very pleasantly surprised. My mom now has a facebook page and as moms often do, talks too much about her children, of course that’s when she’s not talking about her grandchildren. Backstory time …. I have recently been battling insurance companies over my health care. Even though I have been repeatedly told to go on disability, I choose to continue working. There are many reasons for this, but I won't get into them now (that’s another post). But I do work and I work hard, harder than my doctors want me too and sometimes harder than my body allows. I pay for my insurance and am insured by a well known company. However, this well known company continues to make decisions on my medications, medical tests, and care not based on my diseases or my doctor’s medical knowledge much less on my well being but solely on cost efficiency -- But only for them not for me.

 

So this week I've had my well known insurance company refuse to cover medical testing that my doctors say I need, only to suggest I go thru testing that I don't need, but is cheaper for them but far less effective in providing me any kind of relief. Also they are charging me hundreds of dollars on a single medication because it's new to the market and they think I can go without it, because I have been until now … going without it. Keep in mind this medication wasn’t available before for me and my doctor to decide it didn’t work and I didn’t need it, however this well known insurance company was able to determine that without any research at all.   

All of this is not new, I’m used to it … but mom …. Well she’s frustrated so, as people do on Social Media, she opened the page and posted the “Saga of Golden” to her friends albeit against my wishes, or knowledge really. Before I knew it, people from all over were gathering to help. Some are people I knew as a child that grew into medical professionals who were able to call in favors and donate med samples. Some are people that knew my mom when she was a child that have never even met me, trying to donate money to cover the cost of my medicine when my own well known insurance company woudln’t. I am literally in awe! We asked for nothing, we expected nothing. My mom was just venting the frustrations a mother, who has a chronically sick kid, has to get them off her chest and mind so that she might be able to sleep a little bit that night. Yet, we received so much kindness and support from that one post it was kinda overwhelming.

So while it seems that while I have let life beat me into a position of a realist, I have seen the beauty in humanity's optimistic displays, and I am truly grateful. Not for the favors but for the thoughts, the kindness and the hope that it all brings. So I just want to say thank you all for the kindness you have put out into the universe. I can't find a way to express how much it means to me. It has shown me that often times humanity isn't as dark as what I imagine it to be. That sometimes, when you least expect it, mankind's nature can truly shine.

-golden (@theonlygolden)

Controling the universe .... with my mind

I love the phrase "Ain't nobody got time for that!" It perfectly describes my feelings of how absurd a task is and how I am far too busy to be bothered by said task. Unfortunately, right now all I have is time. I am currently propped up trying to control the universe with my mind powers!

 

Well, ok it's nothing so dramatic as all that. But I am trying to will my body to behave as any other body does. Most people go about with their bodies on autopilot. There isn’t a lot of conscious brain power that goes into making sure your body behaves normally. It just breathes, blinks, bends, beats and heals without your consent. But I have the "body stupids" and my body forgets how to body. That's where I find myself now, in a flare up of the stupids. So maybe "body stupids" isn't an official term but its much easier to get across than my real diagnosis. Plus I'm super mature and get all pouty when I don't feel good.

My official diagnosis is an unclassified variant strain autoimmune disease. Which is doctor speak for "Holy shit this bitch's body be straight Cray!" As much as can be determined is that it's like Lupus's bastard cousin, it's like Lupus but I have additional symptoms. So like Super Lupus! (cape not included). Instead of my body’s immune system doing what it should, it gets the dumbs and attacks my organs, joints and skin, like Lupus. But something about the chemistry is different from my Lupus brethren. Since I have had this going on since I was about 19/20 I have a rather high pain tolerance, but today it's failing me. So I am trying to manage my pain today while forcing my legs to be legs. Which leaves me all the time in the world to contemplate the complexity of human nature....and also watch the My Little Pony marathon (Don't judge me!).

 

The one positive outcome of all of this, is that hopefully one day this disease will be named after me and people throughout the world will cuss me randomly "Damn it my Golden is flared up like a mother fucker today!" That is what keeps a smile on my face while I battle my body stupids. Well that and these pain meds. So until we meet again have fun for me and whenever you stump your toe or accidentally knock your funny bone, do me a favor. Just call out a good rousing "Damn it Golden!" for me. I do so enjoy being randomly cussed!