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Thread: Primal Feet First: In Search of Lost Time or Remembrance of Things Past page 13

  1. #121
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    (It's about time I got around to this.)
    Primal Feet First: Part I... Some Background.

    Ages ago I was young and healthy, active and fit.
    The last time can remember really being any/all of these things was 1997. I was 24, I had sustained a simple injury as part of my duties in the USAF, and instead of healing it became progressively worse, and worse, and worse. For almost a year none of the doctors knew what was wrong. I was sent to therapy after therapy that later turned out to be exactly the opposite of what should have been done. Finally a doctor had an idea, he thought he might know what was wrong with me... when I asked him to explain it to me he gave me a disdainful look and said "Well, you're going to make me get out my text books for this aren't you". I then found out that enlisted service members are really not supposed to throw angry cursing fits in the presence of/at Officers.

    But, once we got past that, at least I had a clue. A diagnosis that fit. I was told that I had RSD, Reflex Sympathetic Dystrophy (now known as CRPS, Chronic Regional Pain Syndrome). The internet was young though and it was not yet in every home. I had to go to the library to find a few small references. Perhaps that was a good thing, because what I did find was scary rather than reassuring. New therapies, drugs, and drug combinations were thrown at me like I was a velcro wall. I was not. They did not work. Some of them caused me to drool and have random black outs. Fun.
    My disease had been mismanaged and exacerbated for too long. I was then sent for stellate-ganglion nerve blocks in hopes that it would give me relief. Instead these blocks set off the spread of the RSD which moved north steadily from my right foot and ankle, to my right shin and knee, to my thigh, to my hip, to my ribs, finally to encompass my arm, shoulder, and neck... clear into the right side of my head. As if someone drew a line down the center of my body, everything on the right was affected. I had advanced CRPS. I was summarily discharged from active duty due to medical reasons with a chronic degenerative medical condition and told to seek any further relief from the VA.
    (Years later I found out that if RSD is treated correctly in the first few months that remission is very possible. If I had only known.)

    To explain RSD best to anyone reading this, so you don't have to go google things if you don't want to, I'll just say that CRPS is a much better acronym, with emphasis on the P for pain. Because that's what RSD is, it's a disease of pain. Constant intense pain. Basically the brain gets ganked and rewires itself to create pain signals all on it's own with no inputs in a constant loop. It can cause other things, swelling of joints, problems with muscle control, contractures, symptoms as if the body thinks it has an actual physical injury, but mostly pain. I actually asked the doctors to remove my leg at one point, begged even. That was when the RSD was still below my knee. I thought it would be a grand solution (who needs a leg anyway!), and they have those spiffy titanium and carbon replacements, until the doctor explained that even if he cut my leg off I would still feel the same pain since it doesn't come from the leg at all. Stupid brain.

    Husband and I were dating when I was diagnosed (we started talking as we were both gimp in our squadron at the same time), and as hard as I tried to run him off (and I did TRY), he stuck with me and knew exactly the kind of useless cow he was buying when he signed the marriage license Jan 1st of 99, right after my discharge. At least he thought he knew. Neither of us really did. To his credit he has always been true no matter how dark things have gotten for me.

    So all these years, 1997 to now, I've been on and off of narcotics, I've had around 10 surgeries to implant and revise my Spinal Cord Stimulator and it's wiring including a complete refit about 6 years ago. I prefer that to control the pain over those cruddy narcotics. I've had good years, and bad years. Some years I've been on morphine and barely able to leave the house, others I have just had fresh wiring installed and been in good enough shape to ride my motorcycle on a 2000mile vacation to the mountains of TN/NC or kayak fish all day. It always came and went in cycles. Even in the good times I have bad days when the pain breaks through the Stim coverage and is overwhelming. I try to mostly ignore it, and accommodate it as necessary (like by not riding my motorcycle). It's really best that way.
    “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
    ~Friedrich Nietzsche
    And that's why I'm here eating HFLC Primal/Paleo.


  2. #122
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    Primal Feet First: Part II... the Feet.

    Having RSD/CRPS for all of these years has provided some challenges. Well, lots of challenges. But a one of the major challenges has always been shoes.

    RSD makes ones nerves extremely sensitive to irritation, and any perceived irritation is immediately magnified x1000 and turned into a state of crisis and panic by the faulty wiring within my head, and then carried on for much longer than believable by the looping nature of the wiring difficulty.

    I came to hate shoes. Truly loathe them. I spent ridiculous amounts of money on 'properly fit' supportive athletic walking shoes in top end shops. Then spent even more money to add custom orthotic inserts to them to further support my poor aching agitated foot. I was assured that these steps would help to alleviate my pain. It did not. Sometimes I tried to participate in the 'cute shoe' world of women. These attempts failed as miserably as the athletic shoes. I had a closet full of shoes that could be worn from the door, to the car, kicked off the right foot in the car, put back on at destination, worn at social/public area to be civilized, to car, kicked off in car with gasps of relief... slipped on to get back into the house only if it was rainy. Inside my home, or if not absolutely necessary I would wear NO shoes.

    Gradually I came to realize that the less support a shoe had, the less it tended to irritate me. I became the queen of the FLAT shoe. Chuck Taylor-ish mary jane styles, and Gravis slip-on skate shoes were my friends. Still, they were not perfect, but at least they were less evil. Wearing them I wasn't irritated to madness, but it did grate at my nerves enough that I had constant foot pain, a pronounced limp even on my best days, my right foot tended to turn in a bit, and I dragged it slightly. I thought that was as good as it would get. That that condition was just normal for me because of my condition.

    Then, one faithful day more than two years ago my newly acquired GSD chewed my favorite Gravis pink, brown, and avocado hounds-tooth wool slip-ons past wearing. Gasp! I tried to find a replacement in the interwebs but was rebuffed at every turn. But in my meanderings I spied something strange, and read about it... they were Vibram Fivefingers. I was intrigued. I thought, why not?

    Off I went to the closest local place that could fit me in these strange things, tried some on (yes they felt weird at first), and walked out with a pair of brown kangaroo suede "bear paws" on my feet. I came home and the husband looked down and said "What the hell...", to which I replied "Don't worry, I know they look odd. I'll only wear them when I'm going to school or running errands without you". Two weeks later I looked him straight in the eye and said "I don't care. I'm not wearing 'shoes' anymore". And since that day I haven't. I threw away an obscene number of conventional shoes.

    It took a little while to adjust fully to the Vibram Fivefingers. As I wore them and walked in them I could feel my feet, especially my right foot, become sore in a whole new way but my nerves were not aggravated. Muscles in my feet, weak from years of support and disuse, became sore. Tendons too stretched and ached; ohhh those tendons in the right foot! But little by little the benefits of making that change to VFFs became apparent. I walked with my foot a little straighter, with a little less limp, and with a little less pain until finally my foot is always straight, my limp only shows up on the worst of my days, and while I will always have a nerve disease which affects that right foot/leg etc. I now know that living with the intense daily aggravation of that disease is not necessary.

    Vibram Fivefingers have truly changed my life.
    Last edited by cori93437; 06-10-2012 at 10:12 PM.
    “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
    ~Friedrich Nietzsche
    And that's why I'm here eating HFLC Primal/Paleo.


  3. #123
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    Primal Feet First: Part III... the Primal Part: Part I

    The 'Primal' part does not start with 'Primal'.
    The 'Primal' part starts with "Stupid Brain: Part Deux!"

    As noted in Part I... Some Background, my brain has a long history of malfunctioning. You'd think that a single rare disease would be enough for a body, but evidently not mine.

    In late July of last year I suddenly became very tired. When I stood up to do things I would feel off balance, a bit muddled, and as if it just needed to sit. Using a knife to prep dinner seemed like a very bad idea as I was unsteady and things were a bit out of focus. After a week of this I went to see my GP. She took some blood to check me fore anemia again and check me out for other possible issues. Another week went by and the tiredness and other symptoms weren't letting up. In addition, twice my son had driven me to the grocery store and while walking around my speech became slurred/difficult and I had a hard time connecting my thoughts to speech. For instance, I could look at a bottle of mustard and read the word mustard, but it was almost impossible to get myself to SAY mustard. So, I went back to the GP. She was of the opinion that I had somehow gotten an ugly case of Epstein-Barr, but was concerned about the random occurrences of slurred speech and was going to schedule me for a brain scan just to be safe.

    I didn't need to schedule that appointment. The next day, August 9th 2011, son drove me grocery shopping again, and this time things got much worse. I staggered a bit, my words were slurred, I couldn't think, I just felt generally out of control. When I got home I was telling husband that I was going to go lay down, but when I lay down it seemed wrong and I got back up. I told husband that I thought maybe I should go to the hospital, then went to sit down. I started to feel extremely nauseous but I was having trouble talking, I asked for a bowl. Husband walked away to get dressed leaving me with son. My head was hurting, the world seemed disordered and a bit surreal, and then suddenly I couldn't speak at all. At best I could pucker my mouth and make a stutter-y "MmmmMmm Mmm" sound. I was scared, so were husband and son. Husband drove me to the ER.

    Time got very strange. There are parts I remember and parts I don't. I was in and out of consciousness, there was sternum rubbing (which is exceedingly annoying when you are comfortably unconscious BTW), there were tests. I remember them taking my clothes off of me and being naked in front of about ten people and thinking vaguely that I should have some sort of reaction to that, and then things are fuzzy again. I could not move my legs nor my arms, my hands only very weakly, and I could not speak except for the tremulous "Mmmms", or maybe "Nnnnnns" for "no" if I tried really hard, and yet they asked me question after question. They held me for observation, my CT scans were clean, they sent me home the next day with no answers only hours after I had gained some ability to bear weight and stand very shakily with assistance.

    And thus it was. My speech improved some, but only back to a state of constant slurring/impairment. Standing or activity made me walk like a drunk. I became intensely affected by noise so that any noise at all seemed to be crashing in one me. There was simply no such thing as background noise anymore, my 'filter' no longer worked and all noises came at me and made me want to degenerate into a fit. I eventually solved this problem on my own by purchasing and wearing a set of Bose QC15 noise canceling headphones at all times except sleeping and showering. Lights and busy/fast visual action did the same to me, I simply could not look at it. Even my own talking would cause my head to get worse, speech would slowly degrade, and I'd have one of my special moments where my brain would just sort of turn itself off for a few minutes. No speech, no movement, no ability to connect my thoughts meaningfully to the outside world. The best thing to do when this "zoning out" happened was to put me to bed as soon as possible so that I could then sleep for about 15 hours. This went on for months. I had more tests. Several doctors were openly baffled. Another told me that there was nothing wrong with me, I simply had a psychological problem. Husband called our insurance and got approval for us to go to the Mayo Clinic in Jacksonville.

    I went to the Mayo the week before Christmas, December 19th to 23rd 2011. Yes you have to go and make yourself available to them for a whole week. At the Mayo no one looked at me like they were baffled, and no one said I was crazy. The poked and prodded and did some new tests. And lo and behold they found the answer! One simple lumbar puncture was all it took... Wow... That pressure isn't supposed to be THAT high! So, there it was. I was diagnosed with Intracranial Hypertension and immediately prescribed a medication to start controlling the CSF (cerebro-spinal fluid) pressure problem... which is that my body either produces too much CSF, or does not recycle CSF correctly, or both. When CSF pressure is too high is squashes in on your brain like a tumor causing all sorts of issues.

    I was diagnosed, I was given meds, I was rosy cheeked at the prospect of everything being "fine". I was ready to go home and get my life back under control. If only things were ever that simple.
    Last edited by cori93437; 06-10-2012 at 10:17 PM.
    “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
    ~Friedrich Nietzsche
    And that's why I'm here eating HFLC Primal/Paleo.


  4. #124
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    Primal Feet First: Part IV... Finally, the Primal Part

    During the time I was very sick, between July and December 2011, I ate badly. A simple truth. I did not eat a lot, but I did not eat well. I could not drive, in fact I still cannot, and was most often so sick that other people provided food. Husband or son would go out and pick up easy things; Marie Calandar's pot pies, fried chicken from the deli, pizza would be ordered. There were some days that I would manage to take control and demand grilled chicken and a salad, but the 'other' days were more frequent. I was sick. I didn't have the energy to care. And I had bigger fish to fry than whether or not my diet was ideal.

    Then, when I got my Dx, and the accompanying Rx, I had some new rules to live by. IH means consuming no salt and no sodium in the diet other than that found naturally in foods. No sodium means no quick leavening (baking soda or baking powder). None. The lack of salt and leavening makes all things grain based distinctly unpalatable. This is good!

    But, for anyone who has never tried a salt/sodium free diet I can tell you that this is a rather rude awakening! There is pretty much nothing in a box, can, or bottle in a grocery store that is acceptable. But, lucky me, in my perusal of the internet I had bumped into "The Primal Blueprint" a few months earlier for $1.99 for my Nook and bought it, and had already been reading it. Also, I had run into the MDA site a few times and had been reading some in the forums. To be perfectly honest, it was the up close picture of Mark's feet in VFF's that sold me. I figured if he had enough sense in his head to 'get' those, maybe he was onto something with the diet too. It didn't hurt that I had eaten/lived as he describes in his book for about the first 20 years of my life having grown up in a rural farming community with an emphasis on growing your own crops/meat and barter.

    I liked the idea that cutting out those foods might lead to weight loss as well. Though I am not a typical IH patient, as I am not greatly obese, I am a good deal overweight. I have read the most recent studies enough to know that even if I were extremely obese there is only a 15-20% chance of remission due to weight loss. But still I am not immune to the lure of that possibility. perhaps I would be a lucky one. Or perhaps being thinner would just make living with my two diseases a little easier. At the very least I would be a prettier sick person, and no doctor would ever look at me and say "Maybe if you lost a few pounds..."

    So, in the end Primal was a very easy choice.
    Really, I don't have a lot of choice at all.
    I'm Primal by default almost.
    My dietary restrictions against salt/sodium make it so that grains and legumes tastes bland and awful, whereas meats and vegetables taste much better with just some creative seasoning and butter even without the salt added. Also, I have to be very careful of my kidneys. My medication does weird things to my body, and it can cause horrible side effects and I need to be strict to control that. Sugar is the only outlier. And I admit to having a bit on occasion, but those occasions are so infrequent that it takes very little to push me over the edge from "Oh, Nom!" and into "BLEH, Enough!"
    In addition my meds make anything with even the barest hint of carbonation taste like licking batteries, metallic and BAD. So no sodas, and no beers. Also, I cannot drink alcohol at all, though at times I'd really, really, like to. It certainly simplifies my "choices".

    Due to these reasons I'm just not tempted to binge on forbidden foods or have an "off day" because I truly suffer if I do. Salt consumption from non-primal food sources raises my intracranial pressure and it's likely I won't even make it out of bed for a day or two after the event. I do, however, get a little to friendly with the raw nuts on occasion, but that isn't quite the same and doesn't induce any sort of food cravings.

    My medical history does provide me with one good thing. An excuse. When people offer me things I put on a sad face and say "No. I really wish I could, but I can't because..."
    Then they feel bad, and guilty, and apologize to me for offering the offending item.
    It works for me.

    My biggest complaint... weight loss. So SLOW.
    The IH is attributed in some newer studies to messed up hormones, which they say also causes the weight of the persons diagnosed with IH (not the other way around). So I should have suspected that my hormones would try and block any fat loss. Not that there is NONE, just that it is excruciatingly slow. I worry that my doctors will think I'm not even trying, or will think I'm lying about how little I eat (meds cause nausea and disinterest in food), and I don't know how to fix it so that I can suddenly shuck some pounds before I see them again.
    This week I tried walking on my treadmill a little more and after two days of walking I have had 3 days now of slurred speech... which I haven't had in ages.

    And thus, very slowly, my Primal journey will continue.
    Last edited by cori93437; 06-10-2012 at 11:42 PM.
    “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
    ~Friedrich Nietzsche
    And that's why I'm here eating HFLC Primal/Paleo.


  5. #125
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    Today:

    Husband rolled my motorcycle out of the garage
    and fixed something small that needed fixing for a while.
    She is being fixed to be sold.
    She was terribly dusty when he rolled her out.
    He washed her up and started her.
    I heard her purr and roar, and I stood at the door and cried.
    She was still beautiful and begging for a piece if road,
    And I cannot ride.


    Now he's out looking at the wiring on my '71 Ghia that I haven't driven in over a year.
    I'm starting to think that even driving again is a hopeless pipe-dream.
    How much of myself, of the things I love, must I let go?
    “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
    ~Friedrich Nietzsche
    And that's why I'm here eating HFLC Primal/Paleo.


  6. #126
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    Again, thank you for sharing your stories with us Cori! I am really interested in obtaining VFF's, but my self-confidence may not allow for it yet. I don't think I could handle the inevitable questions and teasing that would ensue from anyone and everyone right now. I'm still getting used to the stares that come with having pink hair again.

    What kind of bike is that? I like the look of it.
    Journal on depression/anxiety
    Currently trying to figure out WTF to eat (for IBS-C).

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    You have a pretty upbeat outlook on life, considering all you've been through. You're also one cool chick.
    If I just said LOL, I lied. Do or do not. There is no try.

  8. #128
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    *HUG!* (In a totally non-lingering, non-annoying way)

    Thank you for telling us about yourself! You have a lot of story to tell- and here I thought you were just fun. Turns out you're also tough as hell.

    And- I need to review this journal at home when I have access to YouTube
    http://cattaillady.com/ My blog exploring the beginning stages of learning how to homestead. With the occasional rant.

    Originally Posted by TheFastCat: Less is more more or less

    And now I have an Etsy store: CattailsandCalendula

  9. #129
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    Quote Originally Posted by justyouraveragecavemen View Post
    You have a pretty upbeat outlook on life, considering all you've been through. You're also one cool chick.

    ^this and more of this. You rock. Nice looking bike as well. As for slow, well, yeah, hopefully you are a better person than I and stick with slow. I get impatient, try something else and f*ck it all up.
    somehow I manage to leave my intelligence and decorum at the door wherever I go. I doubt your journal will be an exception to that - not on the rug

    What the F&#* is a decorum? - Mr. Anthony

  10. #130
    cori93437's Avatar
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    My bike is a 2001 Triumph Sprint RS. A Three cylinder 958cc fuel injection street bomb of torque! I like that. I doesn't have the high end of the R-class bikes, but she rides like a dream. No problem hitting the ton with a flick of the wrist, nimble and quick in the corners, and never had any difficulty getting that front wheel off the ground during a little play either.

    Summer of 2009 husband and I rode them (he has the same bike, but red and full fairings) on a little 2000 mile vacation loop up out of FL, through Alabama, GA, TN, NC (rode the dragon, Cherohola skyway, and all that goodness), then back down through GA (stopped in Atl for a Yankees game), and back home.
    We've also ridden them to the Keys on vacation a couple of times... and used to hop on and ride a few hundred miles for a day on any of husbands weekends off.
    Since about 2010 I have been having too much pain when riding to make it an acceptable activity though. My right arm gets really angry, right leg doesn't play nice either, and pain distraction when in operation of a motorcycle is a VERY bad idea.
    So it's time I suck it up and let her go.
    It's letting go of that freedom and ability inside me.
    Yes "her".
    I have formed close personal relationships with a few of my cars/bikes and she is one of them.
    (Her name is Betty, after the song Black Betty by Ram Jam. Feel free to laugh)
    It's going to suck to sell her, my "bad girl Betty" side. I'll probably let my husband do it since I'm not reliable for even forming words correctly these days.

    My car is also Bettie, but for Bettie Page, and also Bete Noire (both because she needs so much work, and all my "American muscle car" loving friends make fun of her. I simply love her. She has a little bit of bad girl in her, but is mostly a good girl at heart.
    I'm not giving up my car yet. I'm really hoping to drive again even if it means they have to drill holes in my head or something. Even if all I'm able to do is have her bumble and purr me to the grocery store independently instead of having to have husband drive me everywhere ALL the time it will be nice.


    As far as being tough or upbeat. I dunno.
    But I'm glad that someone can see me that way.
    I think that we are all as tough as we have to be.
    And I have been having some pretty DOWN days lately because my brain is not cooperating as it should and I have started administering my daily test again, and failing again.
    The first time this "test" happened was completely random. It was before my Dx and Rx.Husband and I were actually AT the Mayo Clinic waiting for my first appointment to see a neurologist and to kill time he was reading a sports magazine. I was nervous. To take my mind off of things husband started having me say words from what he was reading. Some were pretty entertaining.
    You have to remember that when my intracranial pressure is high my tongue does not function properly, the base of it feels strange and tight, and it actually moves slower than it is supposed to (they shoved a camera up my nose and have a video tape proving this!). This does not exactly cause slurring, that's just the easiest way to describe the impairment, but instead affects the pronunciation of certain letters. 'R' is the worst. It rounds it off an flattens it. It sounds weird.
    So, husband came to a spot in the magazine and looks right at me all serious and says "Ben Roethlisburger"... and I seriously gave it a try. And we both fell into fits of giggles that basically disturbed the entire waiting room.
    When I tell other people about it it's still pretty funny.
    But the longer I say it and fail at it alone in my shower... the less funny it gets.
    Today I failed again.
    Day 4 of things not working right, and I don't know why.

    I did see a new low on the scale this morning though.
    But "Ben Roethlisberger" made me not feel like celebrating at all.
    A new low that amounts to 3 lbs lost in 6 WEEKS I think... It's a bit maddening.
    Fortunately for me... medical restrictions win.
    Or I would have been off the reservation for some FINE binges, at least, by now.
    Even if I throw my hands in the air and say "I give up" I'll still be eating the same diet... minus pastured meats I guess. So what difference does it really make! There are simply so many things I can't eat for the sake of my head that no matter what it's going to be fresh vegetables, meat, a few fruits, some raw milk and cultured milk, and a few tubers.

    Of course I used to also have those awful blood sugar crashes and haven't had one in forever! That there is worth it... especially since my meds make me eschew food for the most part. I eat once a day. One regular meal a day, and I often feel like I'm forcing myself to finish that. If it wasn't for liquid calories from raw milk and cream in the morning I'd be chronically very LOW, which is a problem in itself.
    Last edited by cori93437; 06-11-2012 at 12:09 PM.
    “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
    ~Friedrich Nietzsche
    And that's why I'm here eating HFLC Primal/Paleo.


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