Weight of Time

In an age where all we seem to battle are inconveniences, training by Master Time quickly fades, along with all the gems of human existence hidden in time. A friend shared the following with me, said it reminded her of me. Grateful for thoughtful friends.

“I saw this on my timeline and it reminded me of you. I know you have to be aware every day to take care of yourself, but you also put the glass down to accomplish so much:

A psychologist walked around a room while teaching stress management to an audience. As she raised a glass of water, everyone expected they’d be asked the “half empty or half full” question. Instead, with a smile on her face, she inquired: “How heavy is this glass of water?”

Answers called out ranged from 8 oz. to 20 oz.

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, it’s not a problem. If I hold it for an hour, I’ll have an ache in my arm. If I hold it for a day, my arm will feel numb and paralyzed. In each case, the weight of the glass doesn’t change, but the longer I hold it, the heavier it becomes.”

She continued, “The stresses and worries in life are like that glass of water. Think about them for a while and nothing happens. Think about them a bit longer and they begin to hurt. And if you think about them all day long, you will feel paralyzed – incapable of doing anything.”
Remember to put the glass down.
(Courtesy of Jimmy Harmon)”

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    How Society Crumbles. The Modern Version. Now Playing.

    I keep getting this ominous feeling that the fragile, butthurt psyche of this generation will swiftly bring about the self-destruction of Western civilization. We have all the knowledge from the whole of human existence yet wisdom is nearly extinct. Two of the key ingredients of wisdom are time (patience) and struggles, or at the very least, inconveniences, neither of which we can tolerate nowadays. Y’all know I’m not a pessimist. I’m a realistic optimist. If the car’s going over cliff, the pessimist gives up hope and goes over, the optimist holds up hope for a flying car and also goes over, the realist jumps.

    I believe the increase in social unrest, unhappiness, and even suicides are symptoms pointing to this problem.  But again, people are too fragile and butthurt, like 3 year old children, that they are unwilling to put themselves through the necessary changes to experience true happiness.

    Just calling it as I see it. There’s lots we need to be proactively doing instead of just going along over the edge. There’s no sideline. We’re all in this together.

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      Do You Get Upset/Angry at Doctors When Medications, Shots, or Treatments Make You Worse?

      Do you feel like the [treatment/medications/shots] you got triggered worse conditions? Are you upset at doctors for recommending that?

      Got this message from a fellow allergy sufferer.  They were referring to when I tried Xolair + Cellcept and was debilitated.

      I get this question A LOT, both from friends as well as others who are sick.  When I was a child, I used to get upset, but it was mostly frustration and disappointment, not anger.

      Now as an adult, I don’t get upset at doctors.  Doctors don’t know everything.  Your doctor probably never had the same disease you have! (or else they’d be too sick to be a doctor to help you!).  Each person is different.

      I see Doctors as advisors as part of MY team.  The final decision to try a treatment is up to ME,  which means I need to learn as much about it as possible as well to make the final decision.  It is MY body, I know it best.  It is MY life, so it is MY responsibility.  Directing anger or blame at doctors or anyone else doesn’t help a bit other than to serve your own ego. BUT, if you have the energy to be angry or upset, you’re not sick enough.  When I’m sick, all I can think of is to get better.  There’s no energy to spend on anything else, and I don’t want to think about my sickness any more than I have to, but that is exactly what you’d be doing if you’re blaming someone.  You’re still investing in your illness, your discomfort.

      Also, think of it this way.  Sure, you can blame or be angry at someone else.  But you should only care about the final result: YOU, ONLY YOU, suffer the consequences.  The doctor can be as sad and apologetic as they want to be, and be genuinely sorry, but that won’t help you actually FEEL better!  So it is up to YOU to make the decisions and learn from the successes and failures.  I only look at the REAL WORLD result, and that is if I something doesn’t work, blaming someone else won’t miraculously heal me or undo the misstep.

      Plus, to get well, you have to take risks…sometimes it works and sometimes it doesn’t.  You won’t know what works or what doesn’t until you’ve tried it.  Doctors can say 99% of the time a treatment will work, but you could always be that 1% that for which it doesn’t work.  That’s usually me: the 1% or the 0.000001% exception, so I always expect something to go wrong or not work perfectly.  Doesn’t mean they’re wrong.  Or, like some other medications I’ve tried, sometimes it didn’t work at first because I was too sick, so I used other medications to solve part of the problem, then came back to the medication that didn’t work before, and now it works.

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        Featured Guest on The Kickass Guide to Life Radio Show – 3.30.15

        Will be the featured guest on The KICKASS Guide to Life Radio Show this MONDAY, MARCH 30th. 6PM. Tune in everyone!

        I met Chris through The Brightest Star, Inc. as a fellow speaker for foster kids and mental health advocates. The positivity he injects into people’s lives is priceless.https://www.facebook.com/TheKickassGuideToLife?fref=ts


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          True Wealth and Privilege: Kindness, smiles, caring, and not wasting away

          what true wealth and privilege is: something every human being has an unlimited supply of to give freely, that is invaluable to anyone who receives it.

          At my only “safe” buffet that I frequent, ran into a server our family has become close with over the years. This girl is the most positive, high spirited, welcoming, hardworking server we’ve ever seen. She’s just one of those people that make everyone around her feel better. Every restaurant would thrive if their servers ha half her work ethic and people skills. Yet when I asked her how she was doing with school and how her family was doing, for a moment the corner of her eyes swelled a bit as she told me the burdens of student loans and never able to pay for enough classes because she needed to help out at home. Even though she felt further and further behind in life, I encouraged her to just do things at her own pace and that she had all the ingredients of success…just waiting on the opportunity. As other tables called…she resumed her peppy self in an instant, but that’s not all I see anymore.

          Moral of the story? Lots!

          Moral #1: BE A FRIEND. Ask for someone’s name…and actually try to remember them as a person. If you forget it next time, ask again…instead if being offended they’ll more likely appreciate the “human” interaction instead of being used as a tool for whatever benefit you can get from them.

          Moral #2: Everyone is going through something. Just because they put on a smile (or standoffish attitude) doesn’t mean they don’t need a kind smile, an assuring look, or a simple “how was your day?”, and actually putting aside our egos for a second to really listen. These cost us nothing. We have an unlimited supply of these things. Every human being, regardless of social status or wealth, are wealthy in kindness if we decide to give it. We are beyond measure in wealth in smiles, kind words, and genuine friendship. We can give these freely and they can mean the world to someone else and, on certain days, change the whole course of their lives.

          Moral #3: Be grateful. How do you be grateful? Being grateful is an action, not just a passing thought. Be grateful by not squandering the PRIVILEGE of comfort, safety, family, friends, and time. What you take for granted could be someone else’s life goal and dreams. and IF the same privileges were placed in their hands, they’ll be able to do so much more with it than you are. Don’t squander privileges.

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            Some Antihistamines I’ve Taken Can Cause Dementia?

            Guess what? My doctor informed me today that new studies show certain antihistamines cause dementia in patients 65 and older. BUT, I’m advised to limit my use of these antihistamines as a precaution!

            Which antihistamines? Benedryl, Atarax, and Doxepin. The first two I used for years since birth. When I was 5, my doctor even told me the amount of Atarax I took could knock out a small horse! I’ve been using Doxepin the last 3 years. Interestingly enough, Doxepin is more commonly used as an antidepressant! I suppose if it can help the brain as an antidepressant it can mess with the brain in other ways.

            What’s dementia? From Wikipedia: Dementia is a broad category of brain diseases that cause a long term and often gradual decrease in the ability to think and remember such that a person’s daily functioning is affected. Other common symptoms include emotional problems, problems with language, and a decrease in motivation. A person’s consciousness is not affected. For the diagnosis to be present it must be a change from a person’s usual mental functioning and a greater decline than one would expect due to aging. These diseases also have a significant effect on a person’s caregivers.

            The most common type of dementia is Alzheimer’s disease which makes up 50% to 70% of cases. Other common types include vascular dementia (25%), Lewy body dementia (15%), and frontotemporal dementia. Less common causes include normal pressure hydrocephalus, Parkinson’s disease, syphilis, and Creutzfeldt–Jakob disease among others.

            People always see how horrible my skin is or how weak I appear, but they can’t see countless other internal struggles that I dominate on a daily basis.



            Harvard Medical School: Common anticholinergic drugs like Benadryl linked to increased dementia risk

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              Just Because It’s Legal Doesn’t Make it Right

              SAY NO TO DIRTY MONEY.

              Turn down a project, a lucrative business. Let me rephrase. Turn down money people want to give to you. Sounds crazy right? But the sword of justice (a.k.a. The Power of NO) has to be wielded from time to time, followed by a smackdown of WHY.

              After consulting for a web business I really believed in, whose products offered children positive, enriching activities, the client was really impressed. He was so impressed he wanted to involve me in another web business, this time the nature of the business is the filth of the internet, if you know what I mean. It was inconceivable to me that the same owners could be improving children’s lives on one side only to be ambushing the children with something else somewhere down the line!

              I politely turned it down. They politely counter-offered, citing how profitable this venture would be for me. I turned them down again. They came back again trying to point out how I wouldn’t be directly involved and I would only need to offer my expertise behind the scenes. Someone has to make that money, so why not us, right?!

              WRONG! Separating business from your conscience is how such filth begins and proliferates. YOU CANNOT COMPARTMENTALIZE MORALS, VALUES, SPIRITUALITY AND HUMANITY. These things have to be ACTIVELY utilized in EVERY ASPECT of our lives, otherwise we are no better than an animal or computer or rock. Compartmentalizing these things is as absurd as thinking cigarette smoke stays in the “smoking section.”

              I cannot stand by and be ok with people embracing their own regression to caveman status, and I definitely cannot stand by and allow them, let alone support them, in pulling down others of the human race.

              It seems today’s world is one of over-tolerance. Where everyone accepts everyone else, even if it’s things morally wrong, because they themselves want a free pass when they do something wrong. It seems if everyone accepts everyone else, there’s no wrong because we all accept it. Oh, how naive that is.

              A strong society is built on people’s ability to self-govern. Decoded, that means people must have their own morals and values that they will stick to (however illogical it seems because of the sums of money waiting for them.)

              I gave this client a 20 mins verbal smackdown. Haven’t heard from him since.


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                Superpowers are Growing! Smell Sensitivity & Reactivity Increased!

                My superpowers are growing! Can now smell cigaret residue on someone downstairs at the other end of the house…behind closed doors (and I have a really big house). MASK ON AT HOME. #underseige

                There really is no where to hide.  Good times are rare and shouldn’t be expected as the norm.  Relish in the battle and the strength to hold on through attacks, because that is reality.  Yes, being constantly under attack gets old and we inevitably get tired, but be proud of your strength.  That’s something to hang your hat on, as the saying goes.

                This night, and the coming days, just went south really fast.  Will be working off the effects of this for a few days.  “Working off” meaning fatigued in bed, probably with some brief neurological repercussions.

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                  Fuel Your Special. Joy & Purpose Your Personal Unique “Normal” Frame of Mind.

                  One of the most painful and frustrating things about being ill is not always the illness itself but the anguish of “missing out” on life.  But what are we actually missing out on?  After my recent medical improvements, I’ve had the chance to experience some things in life I’ve always wanted, or thought I wanted, because that’s how everyone else lived their lives and the lives I saw on TV.  If it’s on TV, it must be the right way to live, right?

                  While I’ve had many amazing experiences, the “normal” lifestyle hasn’t lived up to hype I’ve fantasized about all my life.  More importantly, it wasn’t worth all the pain and disappointment of not doing what everyone else was doing.  Even when I was involved in school or band, I did things differently as workarounds or illness exemptions and so saw my differences as a bad thing.

                  But I was comparing myself to other people’s definition of normal.  And just because more people, or at least we hear and see it more because it’s the life of those more vocal about it, we only see how we’re not living that way.  Oh, how much pain throughout human history has that caused people of all ages and health conditions and economic statuses to be subject to the illusion that they were lacking.

                  How wrong I was.

                  I’m writing these experiences to help those who are different as well as the family and friends around us.  It’s hardest when those closest to us desperately want us to be normal. It’s hardest when our joys and disappointments hang not so much on our own understanding but the happiness and sadness on our family’s faces of how we do according to their goals for us.

                  There’s a million “normal” things I can’t do or experience and I was frustrating until I stopped fighting it and say, how does my unique experiences help me think and do stuff no one else would? There were times I could barely see and walk and it actually made me more efficient because of the workarounds I figured out, and I got more in tune with my thoughts instead of distracted by visual noise. I have an amazing photographer friend who’s nearly deaf, but he’s so in tune with people’s body language he anticipates the perfect moment.  Another friend with childhood cancer, shriveled up like he’s a 5 yr old puppet even though he’s 22 now, sought humor in his dire circumstances.  He got so good at it he’s now a comedian in a wheelchair.

                  Only now at 32 yrs old have I really appreciated all the unique experiences and thoughts my illness has given me. It’s truly a gift.  The cost of that gift may, depending on your values, seem expensive, probably too expensive for what was earned in return.  But this illness and I are one.  The cost of this journey is inescapable, the only question is what was the fruit of that journey.  Funny enough, the celebrities that everyone looks up to and use to define “normal” are actually some of the weirdest, most unique individuals.  Some have weird personalities which makes them stand out, and almost all have insane work ethics rare in society.

                  By “normal” worldly standards, I may have been shortchanged, and for much of my life I thought so and strove to be a fictitious version of normal I’ve found out doesn’t exist.  No one is exactly normal.

                  The more abnormal one is, such as I, the more unique perspectives we can provide the world.  I may not be smarter, stronger, or faster than anyone.  There are many things I do that, if I didn’t do them, the world wouldn’t miss me as someone else would step in and do it just as well or better.  That’s the fear for so many people.

                  But we would be missed, if we showed our unique ideas and techniques no one else can even imagine.  The world has enough blacks and whites, but its’ incomplete without our shades of reds, blues, yellows, cyans, magentas, and greens.  And that’s the truth.  My thought process, my creativity, is all born from how my illness makes me different.  I have shortcuts of thinking that makes me seem smarter, or work faster, but only because I my illness forced me to do things differently and faster.  I tire so easily and never know when I would be well enough to work again, so I must seize the moment and work as fast as I can.

                  In that aspect, I’ve also learned to take every opportunity for I don’t know when I would even be awake during the day to have lunch with a friend or say sorry to someone.  An indirect consequence of that is the amazing friendships I’ve built because my immediacy makes friends feel appreciated and relationships feel genuine.

                  I’ve now found peace within myself that I’m who I’m supposed to be.  I dig deeper into my differences and that fills unique gaps in humanity only I can fill.  The opportunities have come easier than when I fought my own existence.  For example, in 2015 I’m signed on as a speaker with The Brightest Star organization  that helps build dreams and self-esteem in abused and abandoned children and adults.  I’ll also shoot some photos for Vogue Italia as well as video projects I can’t discuss yet, and take our Stock Sessions investing 101 workshops to university campuses.

                  There are so much we can learn from each other if we embraced the differences.  If, instead of saying “oh this is how it’s done, you’re missing out”, have the curiosity and the humility to ask, “why do you do it that way?”

                  It is not in the similarities that we help each other grow but incorporating the differences, completing the color spectrum rainbow or filling in the periodic table.


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                    Abusive Disease Makes Me Jealous of People in Wheelchairs and People with Cancer

                    I used to be jealous of people in wheelchairs and people with cancer.   The most cruelest part of my impossible disease has been the complete unpredictability of every moment of my life.  With that comes instability.  Chaos.  Inability to have some consistency, even if it be trapped in a wheelchair or a routine of cancer treatments and expected pain.   At least for those people, I used to think, there’s some ground to build your life on, even if it’s swamp mud, it’s at least you know enough of what will happen in the next minute, next hour to plan your day.

                    I don’t think I’ve ever touched the ground.  I’ve never really known what gravity in one’s life is like.  To know which way is up, which way is down.  You need gravity to have a foundation and go anywhere.

                    Complete unpredictability is a most effective psychological torture technique to break a person’s will and make someone go crazy.

                    I’ve often looked at people in wheelchairs with envy.  Some news reporter would say, such and such “lost the ability to walk and her life as she knew it was over.”  Yet, that person has a new life, predictable, that they can eventually get used to.  Yes, its a tragedy that they couldn’t go on living as they once did, but they had a new life waiting for them, only with a different set of rules.  I can’t commit to anything in my life, build any part of my life, and expect it to stand instead of vanishing randomly.  Not all, but many with handicaps can do rehab and build other skills with their now “modified” bodies, but still bodies that follow some rules so rehab centers can help these handicap people grow step by step.

                    There’s apparently no correlation with the work i put in myself and the results. Without ever knowing you can get a certain result by putting in certain work, and have that result be constructive, progressive, encouraging, it’s nearly impossible to have motivation to do anything.  What i mean is, whether I try to get stronger or not, i have the same chance of getting punched in the face, hit by a hammer, washed in acid, or getting a tiny treat, it’s hard to find the motivation to try.  Doing the work has no effect on my life’s outcome.  I’ve often felt helpless and hopeless.

                    i wish I could know what would happen next. Even if it’s something terrible, at least I can mentally and emotionally prepare for it instead of the whole of my soul exposed. How do you cope with that? If I am to die, it’d bring some comfort to know when and how, so I can say my goodbyes instead of constantly in fear of the unknown. At least allow my heart be settled!

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