Doing OK! 1st 2-weeks Testing Imuran + Cyclosporine. Increasing dose tomorrow. Have a Sleep Cycle for the 1st Time

Doing OK! 1st 2-weeks Testing Imuran + Cyclosporine. Increasing dose tomorrow. Have a Sleep Cycle for the 1st Time…amazing how productive you can be when you’re not passing out at random times for 12 hrs at a time!

Skin is peeling more and looking more red, but it might be more blood being sent to damaged skin and repairing rather than healthy skin being damaged. Sometimes some redness and peeling is actually a healing process, so we’ll see. I suspect it could be healing because the skin feels ok from the inside even though it looks flakey on the outside.

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    Filmed @ World of Dance! Experience As Much as You can RIGHT NOW (So You’ll Be Open to More Opportunities ASAP)

    From World of Dance yesterday! The OTHER reason I say “Yes!” to opportunities and take risks whenever I can…NOT the usual reason of “living in the moment” or “live like there’s no tomorrow”.  The OTHER reason is continually gaining a BREADTH of reference experience from which you can launch your personal growth in endless directions.  You open yourself to the possibilities you never knew existed (because you haven’t experienced the events to think in ways that allows you to see a particular angle on life.)

    Pay attention to the life around you and how you process everything.  You can grow exponentially from every moment you’re alive.  What seems like it’ll take a miracle today may seem easy by tomorrow by drawing from the infinite knowledge and influences around us and our own intellectual capabilities.



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      I Just Interviewed Elite London’s Model Scout for My New Magazine


      I keep getting the opportunity to do things I’d never imagine doing, making friends with people in industries I’d never thought I’d even care about!  But I’m constantly proven wrong and my world opens that much more with each friend I make.

      I just interviewed ELITE LONDON​’s (a top international modeling agency) model scout Ryan Young.  Who’d thunk I’d know what a model scout even was?  We talked about behind the scene life with models, advice for modeling success, teen male sensation Lucky Blue Smith​’s fans, & Ryan’s viral Polaroid candid of Kim Kardashian​ & North West.

      My adventures, much of it done while sick at my desk or in bed, never ceases to amaze me.    The internet isn’t just my wheelchair but has given me access to the whole globe.  Can’t wait to see what’s next!

      Read the full interview:

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        Skipping 3rd Dose (3rd Week) of Methotrexate. Completely Debilitated After 2 Weeks.

        Sent this to my doctors tonight.  Decided to skip my weekly dose of Methotrexate after 2 weeks on this stuff.  However, my local doctor who’s been administering my treatments responded with an “Out of Office Until 7/16″ message. Hope my doctors in Utah respond with better ideas.



        Skipping tonight (sunday) 3rd weekly dose of Methotrexate. If you think I should continue or reduce cyclosporine, let me know.

        Have been feeling worse and worse for the past 2 weeks on Methotrexate. Started with head feeling “cloudy”, then head/brain area felt “heavy,” but not nauseous or pounding headaches. Just pressure, or maybe lack of pressure. During 2nd week, heart starting to feel awkward, weaker. Blood pressure is around 118/78 the 2nd week, which is lower than it’s been when I’ve been on only cyclosporine (BP had always been elevated with cyclosporine). Starting Tues/Wed of 2nd week, body feels extremely heavy such that having a pillow under my head still feels like my head is too high. Body feeling more sluggish and harder to control, so I’m walking hunched over at 70 or 80 degrees and can’t drive.  Though not quite as severe as when we tried Cellcept, it’s getting there.

        Please advise.”


        Also recorded a video tonight documenting this:

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          Help My Fashion Film “Tethys” Win at the Los Angeles CineFest Film Festival!

          Need everyone’s help! My 1st ever fashion film is up for 2 awards at the Los Angeles CineFest Film Festival!  As you all know, I don’t have many “good” days where I’m vertical and up and about.  However, I always push my own health limits and sometimes, miracles happens (with the help of an amazing cast and crew, who also happens to be some of my best friends).  This film “Tethys” is evidence of miracles, and that things don’t have to be perfect and you don’t have to feel perfect to make some magic!

          We’d love to win the “Audience Favorite” award WITH YOUR VOTE! If you have multiple emails, vote with each!

          Just copy & paste our title into this voting link:

          “EP.1: Tethys” Fashion Film



          By the way, “Tethys” was also accepted on IMDB!

          Tethys-GodsAmongUs-Poster_02-kalyn Tethys-GodsAmongUs-still01

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            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.


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

                    TODAY I LEARNED
                    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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