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Karen's Journal

Discussion in 'My Optimal Journal' started by karenr, Jul 30, 2017.

  1. karenr

    karenr Silver

    Hi folks,

    I'm Karen from upstate NY, excited to be in the company of such terrific critical thinkers, feeling very inspired.

    Apologies for the length of this first post - I didn't want to miss any pertinent info so tried to organize it a bit, expanding on what I posted in the Meet and Greet section. Due to my fatigue, I may be slow in responding but am committed to this process and will be as involved here as I possibly can.

    Basically I need to create a protocol that's practical for me to start with baby steps. Not to dumb down the material - maybe to simplify without being simplistic. (A teacher of mine used the term "simplex," something simple that holds a complexity of information).

    Some basic info:
    Age 64. Grew up on Long Island, NY, now way upstate, went to school for classical piano, my lifelong love. Taught for many years, haven't physically been able to play for many years but music is such an inner experience that I access all the time, my saving grace.

    Eastern European ancestry, Ashkenazy Jewish, mother's side from Austria, father's from Russia.
    Family health history is below.
    (Interestingly, I seem to take after my father much more than my mother)
    Currently I'm in an apartment bldg in outskirts of town, 2nd floor, NW exposure, in visual distance of a cell tower, yikes! My devices pick up a dozen wifi networks :(.

    Here's an overview, then more details below.

    I've been in a very debilitated condition with a multitude of health issues.. I rarely go out of the house, for the past 25 years, because it's an ordeal to push through overwhelming exhaustion and pain. So the challenges are huge on a lot of levels, even just to meet basic needs.

    The situation is unusual in that I haven't been able to change my diet.. for most of my adult life I've been unable to digest most foods, and only very small quantities, before feeling way too full. Docs have never been able to diagnose this - not anorexia nervosa, not even atypical anorexia, maybe gastroparesis but I suspect it's more about the hypothalamus and vagus nerve. A cranial osteopath said my pituitary was shut down. I'm in fight-or-flight chronically and can rarely relax.

    Last year I was down to 75 pounds and couldn't even tolerate gastric tube feeding. This means that I live on anything I can get down, which is mainly starches. Even tiny amounts of better quality foods sit heavily in my gut, and then I can't eat sometimes for many hours afterward, feeling very sick and weak. So I'm not even near being able to implement dietary hacks in the usual way, although I've been studying Weston Price and native diet for almost 20 years.. and I know that workarounds will evolve as I embark on this work in a new way..

    Also I'm of the quantum mindset, having been a homeopathic practitioner, having read Robert Becker back in the 80s, etc., and am very plugged in to nonduality spiritual teachings that see consciousness as primary...

    My frustration and fear of not being able to eat enough has gone on too long.. This is why I'm excited to learn about biohacks for EMF exposure, which is one thing I CAN leverage at this point, and hopefully improving things on that front could get at where I'm stuck with the diet/appetite issue. There has to be an elegant solution on another level than the level the problem appears. I gave 30 years to struggling with the problem on its own level, believing in all the gory details, and it's time to free myself from that.

    So what I'm looking for here will be some direct guidance, for my own n=1 which I have always been doing, as I have been crafting my own protocols based on research and intuitive understanding of my own body. I'm looking for guidance to facilitate my own experiments, not looking to be spoon fed, no pun intended!

    However, given my severe chronic exhaustion, (and financial limitations due to living on disability insurance), its often necessary to make practical compromises.. I see part of the work as learning to discern where compromises are necessary due to limitations, and where the perceived limits can be stretched more than expected. Because everything is a function of perception, and what is doable is never as fixed as it appears.

    So I want to look at what seems to be a ridiculously complicated situation, by seeing through to the essence of what needs to be shifted. Leaving no stone unturned, willing to look at dark and scary underpinnings of what may be holding me back, willing to do what must be done, although there probably needs to be a very gradual protocol starting from a severely decinditioned state, so I don't blow myself up in the process.

    More detail:

    After the infancy trauma, I was generally healthy as a child, but in grade school I started having stomachaches and eating issues. Always just a little more fatigued than I should have been.
    At 11, broke a front tooth, root canal, huge amount of dental work the rest of my life.

    At 22, full-blown anorexia-like lack of appetite and early satiety, but no body image distortion or deliberate fasting. I just couldn't eat, forcing only made it worse. Severe depression I think triggered by birth control pills (unbelievable - given for menstrual cramps!)

    I had several remissions from the eating issue over the years, but spent most of my adult life frantically trying to fix this to save my life. Put myself through so many traumatic medical interventions.

    In my 30s I was working at Harvard Scool of Public Health, fun environment, but after 12 years in the Boston area I gradually developed severe chronic fatigue, back to NY, and haven't been out of the house much since then.

    In my 40s I went on TPN (IV feeding), which kept me alive for 10 years, but then had an episode of septic shock from a catheter infection, organ shutdown, pumped with massive antibiotics and fluids which got me through, but developed cardiomyopathy as a result. Lowered left ventricular function, ejection fraction was 25% and now only 30%.

    So I'm chronically short of breath and can't walk more than 10 yards without getting winded, and the general fatigue compounds the distress.

    I'm extremely sensitive to cold and all sensory input - can't even tolerate a gentle massage, and get overstimulated very easily. "Tired but wired."
    Always feels like I'm running on stress hormones, profoundly exhausted but can't relax.

    I never feel like I have even a drop of energy, just nervous, restless energy. (And some kind of spiritual grace that allows me to be grateful and hopeful!). But I power through physically in order to function at all, although that means lying on the couch much of the day and feeling lucky if I can manage a shower. Lemonade out of lots of lemons. The powering through is so stressful, and I'm sure adrenal fatigue is significant.

    The past 20 years I'm living alone with minimal physical support, no family support, and minimal finances. Now with a flareup of the eating deficit the past two years (improving a bit with medical cannabis), and fractures of T7 and T8, I'm dealing with high levels of chronic pain from that and chronic upper body nerve pain.

    EMF exposures:
    Due to my isolated lifestyle, I need to be on the computer, and mostly the iPad because it's easier to manage physically, so I'm working on putting together adapters to connect the iPad via ethernet.
    Modem-router in the bedroom, the only possible location.. At least now I have it on a timer so it's off all night, and am in the process of getting rid of wifi completely.
    Rarely use cell phone.
    Have cordless landline, old model not DECT.
    Cell phone tower I can see out my window!!

    Eyes: astigmatism. Very photosensitive, and can't tolerate much sun generally due to fatigue.

    My goal is to get to a remote environment, soak up the peaceful silence and healing energy fields. I would first need my energy switch turned back on, in order to make that happen. Seems impossible but I don't believe anything is impossible.
    FIRST goal is to take a walk without feeling horribly exhausted. To enjoy the outdoors, to enjoy life.

    Current diet - very small amounts, often.
    Anything I can get down and doesn't make me feel sick, highest quality versions of crappy foods like bread and crackers. Juices, honey, small amount of cheese, vegetables, fruits, grains.
    Have to nibble almost every hour or 2 because I need to keep refueling with such small portions.
    Multi-pure filtered water, fluoridated, working on getting a source of spring water.
    Even tiny amounts of high-fat/protein foods greatly upset my gut, feel too filling.

    Medical diagnoses:
    Failure to thrive in adult, cachexia (currently 90 lbs, 5 ft tall)
    Osteoporosis, thoracic kyphosis (waiting for MRI results)
    Chronic migraine
    Silent gallstones
    Dysautonomia
    Cardiomyopathy with lowered LV function
    CFS/fibromyalgia
    Insomnia

    Meds:
    Small doses of Ambien, Tylenol, microdoses of medical cannabis. Can't tolerate most meds (blessing and curse both!)

    Current treatments:
    Weekly acupuncture and LLLT with this device he uses: http://www.multiradiance.com/products/mr4activcordless
    IR lamp from Redlightman, 5-10 mins/day
    EMF hacks as described above
    Supplements: Standard Process, Transdermal Mg, Krill oil, some Chinese herbs from acupuncturist

    Other practices: nothing else to do but meditate. My apartment is my meditation "cave," a built-in retreat center. Now I need the retreat center to be in a beautiful natural environment!
    Buteyko breathing.

    Recent labs:
    Spinal X-ray: anterior wedging of T7 and T8
    Thoracic kyphosis
    Bones diffusely demineralized
    BUN:creatinine ratio - 25
    ANA titer - 80, speckled
    CRP = 20
    Vit D = 33

    Family health history

    Mother: age 96, dementia began in late 80s, spinal stenosis, hypertension, miscarriage before me, took DES. Grew up in NYC but was generally healthy most of her life.
    Father: generally healthy until his 70s, pacemaker, died of CHF.
    Maternal grandmother: colon cancer, arthritis, died of stroke.
    Sister: age 69, thyroid cancer, osteoporosis, long time vegetarian

    Whew. Thanks for this support. Feeling hopeful.
     
    Last edited: Jul 30, 2017
    Joyfun and Annemarie Heise like this.
  2. Allin

    Allin New Member

    Questions:
    • I live in an apartment complex where they treat the grass heavily with chemicals - is it still better to walk on that than not at all? Walk or stand on it barefoot for about 20 minutes at sunrise, looking toward the sun.
    • Is there a way to ground in a 2nd floor apartment when I can't get outside? I have a balcony to get sun but not ground. Get as naked as you can on your balcony in the sun. I started with 10 minutes and now I can do 2 hours in the full summer sun at 34 latitude.
    • For indoor lighting, UVa only or some kind of high intensity light box in the morning? I'm at 43 latitude, about as much sun as Seattle! UVa light on inside during the day. Open the windows all or part of the way to get sun into the apartment.
    • Should candles be beeswax not paraffin? Beeswax last longer but costs more. My 99 cent candles are not beeswax. When I make my own candles I use crayons, old used up candles and some beeswax.
     
    Joyfun, Annemarie Heise and karenr like this.
  3. karenr

    karenr Silver

    Thanks Allin. What kind of UVa bulb and what kind of fixture?
    My fixtures are rated for 60w and I've been using incandescents but have no idea how to use UVa.
    My exposure is NW so I only get direct sun coming in during the late afternoon most of the year.
    I have an eastern exposure in the bedroom but the next building blocks the sun.
     
  4. Allin

    Allin New Member

    I think Walmart has the 13W CFL UV Blacklight Bulb by Vibe. The bulb screws into a regular socket. They are about $10. It is most important to get the sunrise sun for 20 minutes everyday. Late afternoon direct sun is better than no sun. The UVa bulb is kind of like a bandaid and will help condition your eyes and exposed skin but direct sun is #1 . Open your bedroom window during the day and some sun will make it inside.
     
    Joyfun and karenr like this.
  5. caroline

    caroline Moderator

    Welcome Karen to journal land. You have made a great start.

    Is there a park near you? ocean?

    This is just a thought .....would another room in your apartment be better to sleep in? Does your building have smart meters? if so - where are they? where is your electrical box?

    When you are feeling a little better - could you borrow some camping stuff and go camping? get out in the bush and become Mother Nature's best friend!

    please connect with a member .....lold2015 - that may not be right - I will check it. This is Doris - she is a classically trained pianist and has been spending a lot of time recently in the Yucatan.

    Yes - you do have a lot of work to do - but your energy is so limited right now - so ....keep listening to podcasts - keep them on rotation! especially the Vermont one.

    keep asking questions here ....and you can "ask Jack"
     
    Joyfun, Brent Patrick and karenr like this.
  6. karenr

    karenr Silver

    Thanks so much, Caroline. All the input helps me to prioritize things.. I now have a high priority to-do list and back burner to-do list!

    I just now bit the bullet and ordered the red Sperti which I can't afford but can't afford not to! I'm more physically limited than usual right now because of the recent thoracic fractures, so I see some of the less-than-optimal hacks as reasonable ways to finesse things to get me to the next level where I can do more.

    Things like camping, or even going to a park.. I've been much too sensitive to even consider things like this - it took a lot of work to get my mattress and pillow arrangements just right so I could be comfortable enough to sleep, not to mention that I need room temp to be 74 or more!..

    To think positively about this, there's still a couple months of great weather here to sit out on my balcony (NW) and start to ease into sun exposure. Plus the Sperti, and I'll be in a much better position to deal with the long winter.

    I don't know if the building has smart meters, but I'm in front and they would be in back, so I'm not too concerned.. what does concern me is the cell tower, but I guess not much I can do about that except to minimize my indoor exposure. My bed is as far away from the circuit breaker box as I can get, but otherwise I don't have too many options in a one-bedroom apt.

    Oh, I grew up very near the ocean on Long Island, really miss it..Now I'm near Lake Ontario but have never even been there! Nor been to parks and such, since the '90s. Sounds bizarre even to me, as I never think of myself as an invalid. I have to set sequential goals - first comes getting someone to drive me to one of these places to just sit and ground and take it all in.

    A big step will be to go somewhere other than a necessary doctor appointment - to go somewhere for enjoyment, what a concept! :)

    Okay, so my Level 1 To-Do list for August:

    Be outside before 9 every morning, get feet on ground.
    Get rid of wifi - rig up Ethernet connection for iPad
    Figure out indoor lighting - in summer I don't need much, but this will be important in a couple months.
    Get bedroom unplugged
    Start using Sperti

    Fixes already in place:
    Uvex glasses
    Sleep mask
    Sitting on balcony in the morning with as much skin exposure as possible, and any other time I can.

    And of course reading and listening to podcasts throughout the day!

    I have more questions, including what would be important to do in terms of labs and such..
    But for right now, I'm focusing on these relatively simple practical fixes and trying not to get too bogged down in details.
    But I'm always open to suggestions or feedback if I'm off base!
     
    Joyfun likes this.
  7. JanSz

    JanSz Gold

    I think of you, that you are will have to rely a lot on indoor lighting.
    Your location and immobility.
    Other than RED Sperti
    you will need:

    Two Solar Glow 160W
    One 850nm

    nice to have
    2 of RubyLux ALL RED
    1 RubyLux Infrared Bulb NIR-A
    all at 2-3 feet away from the place where you spend most time (naked).

    Timing of your (synthetic) day/night as I described in my post or close to that.

    =====
    The other (major tasks)
    Investigate and supplement (at minimum) all your hormones that are responsible for bone strength.
    parathyroid and steroid hormones.

    and
    investigate (with a help of right neurosurgeon) if you are candidate for khypoplasty of some of your compressed vertebrae.

    You have been beaten severely when young girl.
    I do not underestimate but believe less in long lasting mental scars,
    but
    you may have under functioning pituitary gland.
    Blow to the head could have done it easily.

    It could be highly profitable to you if you could (with the help of endocrinologist) or (natural oriented doctor) investigate most or all of your pituitary hormones.
    If they are sluggish
    there are ways of correcting.
    This may be your real problem all your life since that beating event.

    wish you success.

    ..........
     
    karenr likes this.
  8. karenr

    karenr Silver

    Thanks so much Jan! I am taking notes from your posts for my to-do lists.

    About the Sperti - I ordered the Fiji Sun Tanning lamp because it's red on the outside - I didn't know if RED Sperti meant red light! It has UVA and UVB, whereas the Sperti D has mostly UVB and not so much UVA. (Did I get that right?)

    Did I order the right one? I asked them to put my order on hold until I got this clarified. Somewhere I saw where you said the Fiji is the wrong one, so I'm confused and not sure which is the RED one.. ?

    I see the Solar Glo comes in 125 and 160w. Considering I'm so sensitive, does it make sense to start with the 125w?
    It says "mercury vapor" - I trust that's safe?

    Thanks again for the info on hormones, that's on my list.
     
    Last edited: Jul 31, 2017
  9. JanSz

    JanSz Gold

    Two of this at 2-3 feet away from you (naked).
    You get up 6AM
    look directly at them or close to directly for few minutes.
    (if you cant go out and look at the actual sun)
    That should tell your pineal gland that day started.
    That lamp is designed to be a full sun replacement for a lizzard.
    It does have the blue frequencies that pineal gland recognizes
    it does have UV-A and UV-B (in small amounts)
    hopefully enough to give you the UV-A ration during the day.
    =========
    [​IMG]
    View attachment upload_2017-7-31_9-27-24.png
     
    Last edited: Jul 31, 2017
    Sheddie and karenr like this.
  10. JanSz

    JanSz Gold

    The Red Sperti

    You could use any time of the day.
    You want slowly
    slowly
    slowly
    over a month or two
    without any skin burns
    develop ability to be exposed to it over two timer sessions of 16min each
    for a total of 32 min/day

    If you want to be precise (not really need)
    use that lamp within solar noon (between two hours before and two hous after solar noon).

    View attachment upload_2017-7-31_9-32-27.png

    [​IMG]
     
    karenr likes this.
  11. karenr

    karenr Silver

    Got it, thanks again.
    I did figure out that the Fiji is the Sperti lamp I should get. ( I must have misunderstood a post where I thought you said it wasn't the one you wanted.)
     
  12. karenr

    karenr Silver

    Question about the Red (Fiji) Sperti:
    The instructions say to use protective eyewear - is that just nonsense, or could there be a problem with looking at a UV source as closely as this is being used?
    Seems like I want to expose my eyes as well as skin :)
     
    Alex97232 likes this.
  13. JanSz

    JanSz Gold

    We are creatures that developed under influence of sunlight.
    Sunlight is our #1
    energy provider
    and
    holds us to strict Circadian Rhythm
    no sun=night
    people (unfortunately) found a way around it to their detriment.

    42% of sunlight energy is within red and infrared light.
    so
    we must tend not only to
    UV-a & UV-b on one side of the spectrum
    but also
    we must tend to a red side
    Highlighted on red side are
    660nm
    850nm
    heat

    https://www.amazon.com/gp/product/B01544PUJ2/ref=oh_aui_detailpage_o00_s01?ie=UTF8&psc=1

    2 of RubyLux ALL RED High Intensity LED Bulb 640 to 660nm

    [​IMG]

    ==============================

    https://www.amazon.com/CMVision-IR130-Outdoor-300-400ft-Illuminator/dp/B004F9LF7E/ref=sr_1_fkmr3_1?ie=UTF8&qid=1488125922&sr=8-1-fkmr3&keywords=infrared flood light built

    [​IMG]

    ==============================

    https://www.amazon.com/gp/product/B00N4JE9U6/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1

    RubyLux Infrared Bulb NIR-A Near Infrared

    [​IMG]
     

    Attached Files:

    karenr likes this.
  14. JanSz

    JanSz Gold

    I am not 100% sure.
    I think some would say this or that.
    I use googles, but also am not that much afraid glancing over that light, sometimes.
     
    karenr likes this.
  15. JanSz

    JanSz Gold

    karenr

    Think of your self as a radio or TV or a car.
    They have a knobs, wheels, pedals or buttons so one can operate them.

    Think of different light frequencies
    their different timing
    over the day
    over seasons
    as a tools that operate those buttons
    we are made to respond properly to them, as designed, and live long and prosper

    on the other hand
    we are not made to be operated by something else.
    We are not made to be operated by
    artificial light in mid night
    radio or radar or cellular phone waves or microwaves

    ........................
     
    Alex97232 likes this.
  16. karenr

    karenr Silver

    JanSz, that was so well expressed. It's really something to contemplate profoundly.
    I also thank you for making such an effort to educate me! It's been so valuable already.
     
    Alex97232 likes this.
  17. JanSz

    JanSz Gold

    To get the 850nm light to work all the time
    you will have to take of (and discard) a cover frame and glass.
    Then you have to put a dark tape over the sensor.

    .....
     
  18. JanSz

    JanSz Gold

  19. karenr

    karenr Silver

    Thanks, I looked at that butyrate supplement, very interesting, but I can't swallow large capsules. I use transdermal Magnesium oil, but I doubt it has the same beneficial effect on the gut flora.

    I've had a dilemma about using probiotic foods/supplements since reading about FODMAPS and wondering if probiotics at this stage are making things worse. I love sauerkraut and fermented veggies.. maybe it's a matter of using very small amounts and going very slowly..?

    Re. the lights, I will have to wait until my energy is a little better, to figure out how to use these bulbs that can't go in my 60w rated fixtures.

    I feel like many of the things I need to do right now are compromises, and I've heard Jack say that when you're very sick you do need to use supplements.. so I'm trying to forge ahead with confidence that I'm on the right track even though it feels like a circuitous route!
     
  20. JanSz

    JanSz Gold

    Those butyrate pills are stinky.
    Not really big deal, after a few you will get used to them.
    You do not have to swallow the whole pill, open it up, eat the powder inside the gelcap.

    This is how farmers cheese or butter smelled 200 years ago when it get spoiled.
    Now thanks to technology it almost newer get spoiled.
    But we are paying for that "privilege" with our health.
    -------------------
    You cannot screw 160W or 250W bulb into 60W lamp.
    Get the warehouse lamps, they are not pretty but strong electrically and can withstand heat.

    Red Sperti just plug into wall outlet.

    The 850nm lamp comes with AC/DC converter.
    Lamp actually works on 12V DC power.

    ///

    ..
     
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