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What a Long, Strange Trip It's Been -- Robin's Road

Discussion in 'My Optimal Journal' started by sweetsoprano, Feb 6, 2014.

  1. sweetsoprano

    sweetsoprano New Member

    I've been putting of starting a story/journal because it is hard to know where to begin and what order to say things in. But I intend to do it.

    But not today. Today I have an elevated temperature (only 100.5, but my Normal is 97.5) and chills. My apartment manager was coming to inspect my apartment today, so I put off CT until after that, and, of course, she didn't come until quite late, by which time I am wondering, as I am already chilled and shivering, if CT is a good idea.

    Promise I will start a journal about my journey as soon as I can.
     
  2. caroline

    caroline Moderator

    I am so happy to see you here and making a start! Maybe try C/T for a bit and see how you go? Nothing is written in stone - do what you can. Some days rock and other days .... well you know....it is called real life.... :D

    Can I call you Robin? just start simply - but don't worry..... the more detail the more context Dr. kruse has!
     
  3. sweetsoprano

    sweetsoprano New Member

    Hello and thank you. As it turned out, I barely had the energy to get to my bed. Slept for 14 hours, woke up a lot better.

    Yes, you can call me Robin. "Start simply" sounds so simple -- but, as I am sure with everyone, you know how our lives seem to loop back to previous events. "Start at the beginning" is hard because just when you think you know when it all started, you find a link to something prior to that. Even starting at where you are is hard, as it is so complex. I was born in 1950, so am 63+ years old. I found Jack's site because of something he posted on one of the Paleo sites I loosely follow (very loosely -- I check in on some of them once in a while). I came to Paleo from low carb and Dr Richard Bernstein (I studied diabetes in a few Intro to Medicine type classes at Stanford Medical School). I read Sugar Blues in 1976 and greatly reduced sugar in my life, cut refined and reduced but did not eliminate honey, maple syrup, agave. I was pregnant at that time and found it hard to lose the weight afterwards. By 2000 I was 150 lb overweight, despite assiduous Calorie counting, avoidance of junk foods, etc.

    In 2000 I had to have emergency surgery and my life afterward was never the same. I knew as soon as I woke up that something was wrong -- I said, more than once, "I've lived in my head for 50 years, and this is not it." Doctors pooh-poohed this, said any anesthesia effects would go away, etc. Instead of going away, things got worse and worse. I was referred to several different therapists, but finally found an answer in Dr Bill Dement's The Promise of Sleep. It took over a year, but when I finally got into Sleep Medicine I was diagnosed with three sleep disorders -- sleep apnea, periodic limb movement disorder (related to, but different from, RLS), and narcolepsy. I was put on CPAP, modafinil (an alerting agent), and pramipexole (a dopamine agonist). I have long suspected that the general anesthesia during the surgery damaged or harmed my hypothalamus. Over the years the sleep docs have debated whether I have "true narcolepsy" or not. By the time I saw them I had been severely sleep deprived for over a year, so I would like to believe I still have hypocretin neurons that could be salvaged and nurtured.

    So, meanwhile, my mother died shortly after my surgery; my recovery was hampered by the sleep issues and my weight, and I decided I had to lose weight no matter what. I lost over a hundred pounds over about a year by what I liked to call "steely determination." I restricted Calories, I exercised my brains out, I eliminated all sweeteners, all grains except rice and (ugh) most fats. Eventually I took a break, or burned out, or whatever, and the weight began to come back despite eating very little. I got pneumonia somewhere in there and could not get rid of the chronic bronchitis afterwards. I was followed at the Lung Clinic for as long as I had health insurance, and the steroids they had me taking every day had a major effect on the weight gain. Even when I went a year without pneumonia or bronchitis, they insisted I had to take the steroids every day. And, of course, if I did get any kind of cold it went to my chest and became a drawn-out bronchitis event lasting months.

    I lost my jobs and health insurance in 2008, and a month later got pneumonia. I had no health insurance and no hope but that time would heal. By September I was so weak I couldn't leave my chair. Despite extremely little food (but no exercise) I did not lose weight. A kind friend brought food by twice (most of which was stuff I would never eat) and started to urge me to get medical help. She located a free clinic and begged me to go. They gave me antibiotics and I got rid of the infection, got a consulting job, still no health insurance, and worked from home. I got through one winter, but in 2010 got pneumonia again and once again spent months too weak to go out or do anything at all. I finally went back to the free clinic and was treated with zithromax, but it didn't work. They tried something else, and it didn't work, and again a third antibiotic, and it didn't work. Finally I saw a different doc, who said he was going to have me try zithromax again, but twice as much and for twice as long, and that finally worked. On a follow-up the first doc yelled at me about losing weight (eat less, exercise more) and would just not believe that I could probably not possibly eat any less (all fat people lie about what they eat, or are kidding themselves, right?). Admittedly I could exercise more, but not while I'd been ill.

    I had cut all grains, dairy, soy, and eggs for four months, and gradually brought back dairy and eggs. As I got stronger I exercised more -- a lot, even, because I began to be thirsty a lot and worried about T2DM, plus worried my legs looked yellow (my mom died of liver cancer). I got pneumonia again and went back to the free clinic, where they gave me antibiotics but this time ordered some blood tests. They called me to come right back when the results came back. My liver enzymes were sky high, as was FBG and HbA1c. They started me on insulin injections and ordered a bunch of liver scans. One of the docs told me I probably had liver cancer and maybe 3 months to live, and to make peace with my family and put my affairs in order. At that point I really got into paleo, Dr Bernstein's site, and scoured the web daily for info and help. I got my A1c and average blood sugars down to normal in less than 6 months. It took that long to get in to see the Endo, who was angry that I was sent to her. After a couple of visits and two 2-week CGMs she told me my blood sugar was completely normal and not to come back. I disagree about my BG being completely normal -- I can usually keep it in normal range by carb avoidance, but if I get sick at all it goes up dramatically. I have the diagnosis on my health history, so a diabetes nurse will prescribe me insulin, and I do still use it. I am concerned about it -- the idea that giving T2 diabetics more insulin is pouring fuel on a fire, etc., concerns me, and I try to use as little as possible while still keeping my blood glucose low. Despite taking insulin I was able to lose about 60 pounds, but then hit a bump and regained almost 20 of it, and now trying to lose again, but having a difficult time. I eat extremely low carb, don't limit fat (MCT, coconut oil, and butter, mostly), target adequate protein, and only keep track of Calories so I can record things in my spreadsheet. CT seems to help, but I only found Jack's site a couple of weeks ago, so haven't had enough time to see huge results.

    I love exercise, but when I've been "off" it for a while because of illness, or fatigue, or burnout, I find it hard to get back to it. I love CT, too, but have to say that looking at that cold tub of water I find it hard to make myself get in. I know I will be glad I did, I know I actually like it when I do it, but does anyone else find that feeling?

    Again, it is hard to tell one's story in a linear fashion. I have gut issues. I have had chronic diarrhea for so long I can't remember when it started. I've taken every kind of probiotic and prebiotic and am seriously considering FMT. I know this limits my nutrient absorption (I take Metformin, for example, and often see the tablets in the toilet). How can one eat so little and clearly not absorb even all of that, and not lose, or even gain, weight? I try to eat the best, most nutrient dense foods I can, buy organic, grass-fed, etc. I fast intermittently, not necessarily by choice, but because not eating helps not having diarrhea. After a day or two of just water or bone broth the gut gets better and I can eat, but soon after the diarrhea starts again.

    I am sure I have mitochondrial issues, but continue to hope they are not gone and can be improved. Three times I've been told by doctors that I was about to die, and once I (actually, my then-fiance) was told I was dead (I can tell that story, too), but I am not dead yet. My body was designed to heal, and I will do whatever I can to help it do that. The hard part is knowing what that is. It is not eating less and exercising more; it is not taking more drugs; it is not eating whole grains. Sleep has something to do with it, but my sleep is still messed up. My docs will not prescribe Cycloset. I am learning that EMFs have a lot to do with it. I live in Silicon Valley, next door to Stanford, on a limited income. Buying water is hard, buying good food is hard, buying Magentico is at the moment out of reach. Many of my problems "seem" to have gotten worse since I moved to a first-floor apartment from a house; but I had problems before that -- many issues "seem" to have started after a car accident when I was 19. While it is satisfying to track down what started things, it is far more important to me to find, standing where I am, what will fix or improve things.

    I forgot to say that when I finally got in for the liver scans, they never did find a tumor.

    I am sure there is more to be said, but have typed about as much as I can for today.
     
  4. nicld

    nicld Gold

    Oh Robin, you sound so broken. But there is hope, there is always hope. You can get yourself fixed but it will take time. You have come to a great place and just take it one day at a time.

    Nicole
     
  5. Lahelada

    Lahelada New Member

    Welcome. I so understand what you mean about limited means . I don't have much money either and if I did. whatever I need probably does not exist in Argentina . DO what you can where you are with what you have. Just having come to the realisation that you need to heed your inner doctor cannot be paid in gold.
     
  6. sweetsoprano

    sweetsoprano New Member

    Oh, don't say that! "My head is bloodied, but unbowed." But, really, when I say I am not dead yet, I mean I am a victor. I have a lot more things to conquer, but I will not let them get me down. I admit to having times when I almost didn't want to go on, but I am not there now, and I don't want to be. I have great hope for CT and Epi-Paleo and the power of mind. Laugh if you will but I have healed many sick and one dying dog(s). I gave them my energy and their bodies knew what to do with it. I know my body can heal, but not (yet) how to give it the energy it needs.
     
  7. nicld

    nicld Gold

    I didn't mean to offend but we are all broken in some way, that is why we are here, me included. The great thing is that you are here and can get better.

    Do you have someone that you can share energy with? CT will do wonders, maybe not what one can see, but it will.
     
  8. JanSz

    JanSz Gold

    You must have minimal gastric acid. Try this or similar product, up to 10 tabs with each meal.
    Start with five tablets.
    Possibly you may need little more.
    Have with you something additional to eat. Eat that if you would feel hotness in stomach.
    That may be few tablespoons of butter or piece of meat.

    There are also digestive enzymes, probiotics and bile acids that you may consider when trying to improve digestion.

    [​IMG]
     
  9. sweetsoprano

    sweetsoprano New Member

    Thank you. I have taken that in the past, have meant to get more. I do take some digestive enzymes, but I agree I probably need more stomach acid. Oddly enough (or not) I was prescribed a proton pump inhibitor, Aciphex, which I do not take.
     
  10. sweetsoprano

    sweetsoprano New Member

    Oh, no offense taken. I just meant to be clear that I don't want to take the "I'm so broken I can't do anything about it feel sorry for me" attitude. We are all broken, truly. Thanks for your thoughts. I have s l o w l y been introducing things to my family and friends, but it is a delicate matter. When I bring up a new thing my family generally reacts badly against me, then a few months later "discover" it for themselves. It can't come from me.* BUT they are now gluten free, relatively low carb, and avoid sugar. EMF is a tough sell, as my son-in-law is a software engineer who sometimes works from home and their server is up 24/7. I usually visit them once a week but lately feel like I need a tin foil hat.

    *When my grandson was born he had terrible colic from early on. My daughter had taken antibiotics for a breast infection. I said they needed to give him some acidophilus, that there were some available safe for babies. They said they would ask their doctor. They forgot. I nagged a few times, they always forgot. I stopped saying anything (poor babu). Eventually they asked the doc and got the OK and gave him acidophilus and voila! he was cured. When they tell the story, they say "... Then we got the idea to try acidophilus and ..." One time I stopped my daughter and said, you know, I was the one who kept telling you to give him acidophilus, and she said, "I don't remember that." It really can't come from me, or they have to convince themselves it didn't.
     
  11. sweetsoprano

    sweetsoprano New Member

    Oh, no offense taken. I just meant to be clear that I don't want to take the "I'm so broken I can't do anything about it feel sorry for me" attitude. We are all broken, truly. Thanks for your thoughts. I have s l o w l y been introducing things to my family and friends, but it is a delicate matter. When I bring up a new thing my family generally reacts badly against me, then a few months later "discover" it for themselves. It can't come from me.* BUT they are now gluten free, relatively low carb, and avoid sugar. EMF is a tough sell, as my son-in-law is a software engineer who sometimes works from home and their server is up 24/7. I usually visit them once a week but lately feel like I need a tin foil hat.
    *When my grandson was born he had terrible colic from early on. My daughter had taken antibiotics for a breast infection. I said they needed to give him some acidophilus, that there were some available safe for babies. They said they would ask their doctor. They forgot. I nagged a few times, they always forgot. I stopped saying anything (poor babu). Eventually they asked the doc and got the OK and gave him acidophilus and voila! he was cured. When they tell the story, they say "... Then we got the idea to try acidophilus and ..." One time I stopped my daughter and said, you know, I was the one who kept telling you to give him acidophilus, and she said, "I don't remember that." It really can't come from me, or they have to convince themselves it didn't.
     
  12. sweetsoprano

    sweetsoprano New Member

    I went "mostly" sugar-free over 35 years ago. I went "mostly" grain-free over 10 years ago. I've eaten "mostly" organic for at least 40 years. I went super low carb 3 years ago, and paleo about the same. Occasionally I've had "backslide" days where I ate "a lot of carbs," but understand that when I say a lot of carbs I mean 50 grams instead of less than 10. I get SO tired of the current crop of gurus saying that people are 0bese and diabetic because they ate HFCS or sugared soda or donuts or cookies or fast food or crap. While I have eaten each of those things at some time or other in my life, I have never eaten a lot of them and certainly not on any regular basis and not for many years. I don't get some brain reward from bingeing on sweet or starchy foods, because I don't EAT sweet or starchy foods. I am really, really tired of doctors who assume I am lying about what I eat or I am too stupid to know how to weigh things. While I did not relish the idea that my mitochondria may be broken beyond repair, I was glad to hear there was some explanation I could accept. I hope there is hope for my mitochondria, I really do. Whatever I have done to them, it was not by voluntary dietary abuse by ingesting sugary or starchy crap or additives. The one thing I did for far too long was drink artifically sweetened iced tea. I would give it up for a while, and then drink it for a while, so it wasn't constant, but when I really knew how bad it was I did stop. But don't go telling me I wouldn't be obese if I just didn't eat donuts to get some kind of high, because despite what those gurus think I do not and never have. Of course those of you here know about this, but I was looking at some other sites and it just irritates me SO much. I have sought for help from doctors and books and later websites, because I KNEW something in me was broken for this to be happening to me, but instead of trying to help they assumed I was lying and stupid. Thank you, Dr Kruse, for not being one of them.
     
  13. margor_j

    margor_j New Member

    oh i hear you @sweetsoprano! boy do i hear you! im exactly the same - apparently, i should be healthy from years of racing as a cyclist and being scared of fat and vegetarian. i was never 'idle' or lazy, but did i exercise a lot? yes, i know now WAY too much.. i was alway eating CHO and living on coffee.. and in these past few years when iv swelled up and dont recognise myself, ppl have the audacity to suggest i need to 'train more' or have smaller portions - well listen up f*ckers, if it was that easy, then i wouldnt be in this situation! (dont wanna offend anyone by dropping the F bomb, but.. really, iv even been poked and prodded by work colleages in one place i was at) he was poking at my arms, which used to be so puffed up - hey, today i was really patting myself on the back for having my wrists back! and, iv noticed, my veins are back in my feet! the ones that stand out when youve been out walking and then take your shoes off.. yeah those, they had been gone for ages!
    oh, and according to 'experts' i only got cellulite because OBVIOUSLY i smoked, ate too much processed food, didnt exercise and drank wayy to much alcohol - and i was around 13 when i first noticed cellulite, lol. iv never done any of those 'cellulite getters'. drink more water,, lol, like thats gonna change jack..

    anyway, its been a huge lesson for me to - everyone has a story, and you dont always know it, so dont comment.. im with you on that one! :)
     
  14. caroline

    caroline Moderator

    Hi Robin ....I am glad you got that out of the way.... and you probably feel at least a little better.
    What Margo said .... everyone has a story - but that was yesterday.....

    This is a journey to Optimal health.... It is a very personal journey so yours will be different from mine - just as mine is different from everyone else's.

    Dr. Kruse started His journey to wellness 10 years ago and so he is way ahead of us - but he is shining his flashlight for all of is. You do have to do a lot of reading and asking questions - but please be 100% committed and all in.
    You will have to do the work - make no mistake about it .....but we are all here working on our masterpiece together and supporting each other. Is it easy - hell no ..... but it is one heck of a ride!

    Always ask questions if you aren't clear about something. Dr. Kruse has said many times that there are no stupid questions if you don't know something. He doesn't know what we don't know unless we ask. If we don't ask he has to assume that we know!

    Start slowly - baby steps!

    Have you seen the easy start guides on the home page? there are quite a few podcasts that Dr. K. has done there too. They are great for quick and easy to understand info - alot on non native EMF.
    There is also a free webinar by Dr. Tim Jackson on hormones
    Dr. K's book - The Epi-Paleo RX is available from amazon ...in kindle and paper. It is a great introduction to all of this and gives you insight into Dr. Kruse and why he is doing all of this.

    I also like a book by Suzzane Somers - Breakthrough. She goes thru all the hormones and she is easy to understand.

    What else do you want to know?

    C/T is massively important to reduce inflammation in your body - just go slowly ....For some it was a piece of cake and others - definitely not. Every one is very different. Start with the water a little cooler than you would like - or - go for gold ..... your call!

    Non native EMF is huge ..... listen to Jack's podcasts..........

    Have you joined the free 90 day reset?
     
  15. Jack Kruse

    Jack Kruse Administrator

    Welcome........but I can not comment. You have no pic. LOL
     
  16. nicld

    nicld Gold

    I can so relate to the family stuff. My oldest is going in to nursing and has issues with sleeping and her weight a bit. I try to give her tips but she wont listen. The same with the hubby and that just frustrates me to no end. He just is not getting it that sugar is killing him. I just share little bits and pieces with people if I think they will get what I am saying.

    Oh and NEVER give up on yourself. Someday's may be hard to keep your chin up but you can do it.
     
  17. sooperb

    sooperb New Member

    You have my utmost sympathy and along with the others here, my unstinted support in any way that it will help. We've all faced adversity in some ways, my life hasn't been that hard despite losing my father at four, becoming a single parent at 21 and losing my unborn child at 6 months. I don't want any sympathy, these events are long past and I've moved on. Which is what you're doing too, we're about the same age so we're going to have history, some bad, some good but there's also a future in front of us and I'm going to do my best to make mine the best it can be within whatever limits I might encounter. Just reading Jack's book (finished it today, hurray) has provoked me into believing that I can be better than I am healthwise but it's up to me, my journey, my efforts and if no one wants to join me, their loss.

    My OH is somewhat supportive, my oldest daughter is on the same wavelength, in fact she's been telling me this stuff for years and it's all been just instinct with her, she never compromised on butter, best food available even when broke, believed cold bedrooms were best, the list is endless. She's lived through some terrible life events that nearly killed her but she's come through and together we'll go forward :)

    I wish this for you and any of the forum members who have faced such awful health issues, we'll go forward together.
     
  18. sweetsoprano

    sweetsoprano New Member

    Let's see, where to start? I do a LOT of reading. That is how I found Dr Kruse's site. I probably read more medical journal articles per week than many doctors I have known. I spend far too many hours at the computer reading and researching. I found Dr K's site only a couple of weeks ago, so I have been reading assiduously since then (with breaks, plus always following links and checking the original research -- it's amazing how often original research gets thrown around on blogs as saying things it had no such intention of saying). I'm not through all of the series, but am making headway.

    Asking questions will be hard for me, as is writing in this forum at all. Usually I read everything in forums but don't post -- I'm a major lurker. When I have questions I go out and do my own research, try to find the best information on all sides of an issue. But asking questions is good too, if one trusts the people one is asking. Without getting into details, I have a lot of years of education (from both sides) and have most of my life been in the position of answering questions rather than asking. lol

    I have never been one to start slow, and it is probably already too late for baby steps. If I believe something is right, I am all in. If I am hesitant or half way or baby stepping, it is because I am not convinced and hence not fully committed.

    Have I seen the easy start guides? Hmm, I have read so many pages now. If I read an easy start guide, it was immediately followed by the rest of the in-depth guide. I watched a couple of the podcasts that seemed important to me, but not all as some seemed farther afield or less directed. Eventually I may get to all of them. I did listen to the Jackson webinar. I'd love to see Dr K's webinars, but Gold membership is out of reach at this time.

    Dr K's book is on my Amazon Wish List. I haven't got it yet, as money is tight. As mentioned above, I lost my income a few years back and had to live on what I had, and when that ran out I had to live on General Assistance and Food Stamps. Some of his recommended supplements are on my list, too, as well as EMF testing and Magnetico and so on. Some months I can't even buy food by the last week of the month, so acquiring things that require money is slower than acquiring knowledge and doing things that are free. My Wish List has gotten quite long.

    I haven't read the Somers book, but have read a few of her books in the past. I may add it to my list, but priority will have to be down.

    I love CT and I believe it will work wonders. I knew as soon as I read about it that it was key. I started with half an hour in very cold water, so too late for baby steps. As I said earlier in this thread, I love being in the cold water and I love how it affects my body afterward, but I still put off actually stepping in. A love-hate thing?

    Non-native EMF IS huge. That has been the big eye opener for me on this site, as I was already familiar with a lot of the other stuff. I can't afford to move at this time, so I don't (yet) know how to engineer a long-term solution. I will be aiming at testing and shielding for now.

    Yes, I have joined the Optimal Reset.

    Thanks for your input and please continue to make suggestions!
     
  19. sweetsoprano

    sweetsoprano New Member

    Thank you, and you are right, I have no pic. But do tell why you "cannot" comment.

    I don't think I have any recent pics of myself -- does my forum avatar have to be me, or current? I never use my own pic on facebook, as I wish to protect some privacy. ;)

    I am enjoying reading your many blog posts, and thank you for being willing to share them openly. Many in your field will tell me privately that they disagree with some long-held medical powers-that-be position, but would never admit it in public or buck the system.
     
  20. nonchalant

    nonchalant Silver

    Dr Kruse, in another thread, commented about how he likes all the new avatars. The previous forum software discouraged avatars.
     

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