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Being alive, not just 'living' (Hippychick)

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  • Being alive, not just 'living' (Hippychick)

    Hello,

    I've been a good ole lurker since the new year really and have attempted primal/paleo since then with a few hiccups along the way.

    My story is I'm sick and it's bad, at the age of 25 I was diagnosed with a severe and incredibly active form of rheumatoid arthritis. I couldn't stand walk, lift my arm above my head, I tried a heap of anti arthritis diets including drinking vinegar but could never stick to them, they always seemed to cut out everything I eat, simply as I also lacked imagination I'd give up and try the next cocktail of drugs being offered to me.

    5 years ago my husband and I decided we'd like a family, pregnancy could send my RA into remission, financially I'm able to stay at home and the medications had improved my quality of life somewhat so my drs agreed and put me on a wonderful (not) new drug for me called prednisone, a steroid, I failed to grasp the potential side effects that it could make me diabetic and yep you guessed it, I got diabetes.

    Nearly 2 years ago we were fortunate enough to have my daughter and following her birth I was almost ram railed into the drs office to try yet another medication to bring my disease under control. It didn't work so September last year I was switched into a new medication, fresh onto the market and available to me thanks to our good old NHS. It worked within 2 weeks my inflammation was normal, my blood work good and I could start to think about being alive again and not just rotting away, so I began researching exercises I could do and then followed diet and I stumbled upon MDA and have been an avid reader since.

    I first started paleo/primal in January and lost 18lbs, the mouth ulcers and urine infections that were a side effect of my medicine disappeared, i also was able to switch from insulin to metformin as my sugars were so well controlled, I was stoked, then doom the damage had been done to one of my hips and pain unbearable so it was decided I'd need a total hip replacement at the age of 33

    The pain then began to get unbearable, so much so that I couldn't stand and cook so I had to order in for us or have convenience food available for us to eat (husband works hard and long hours so not feasible for him to cook)

    Fast forward to April and I had my surgery, the 6 weeks after were tough and I was reliant on family to help cook for us. I'd well and truly lost my way, I gained a few lbs but fortunately not masses. Then I watched a tv show the other week, fat sick and nearly dead. I'm not mad enough to want to try a juice fast but it reminded me how well I'd done before so a week ago I resumed my primal ways and am starting to feel great again.

    So in a nutshell I'm now weaning myself off of my prednisone, I've stopped the anti inflam meds and codeine. I'm hoping once I'm off the pred that the diabetes will go away and I can stop metformin. Ultimate goal is to be off all medication completely.

    I'm now trying to plan activities and to live a full life not just exist day to day, a small step but on Friday I managed to get into the floor and back up again on my own, a minor event for most but I've not managed this in 7 years

    So yeah looking forward to our slow roasted pork tonight.

  • #2
    Hello and welcome! I am a fellow RA patient and can sympathize with your agony - although I haven't had any joints replaced - that sounds brutal

    I completely hear you about trying to do more than just survive. It's my goal all the time too. I started taking actemra a couple of years ago and that combined with the autoimmune paleo diet has really given me my life back, but now I feel so upset about all the years I lost. I think it is wonderful that you have a husband and a child, I missed out on that and really regret it. And your victory is not minor!! Getting up and down from the floor is a tough task. There were years where that would take me a hour to do if I dared try it.

    Take that prednisone taper very slow. It's tempting to try to get off fast, but I really got burned doing that. Have you had any issues with your withdrawal?

    I don't think I live like other people yet. But I am soooo much better than I was I still plan my activities around my energy level and am very careful not to overschedule. A couple of days of overscheduling can leave me exhausted for weeks. Do you struggle with fatigue too or mostly pain?

    Congrats on finding primal - and welcome!!
    Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

    http://www.krispin.com/lectin.html

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    • #3
      Thank you jammies

      I'm currently on 4mg daily of prednisone, and was told to reduce it by 1mg a month so that's what I'm doing, it's frustrating because I just want to stop it tomorrow! Oh well 4 months is nothing really. I'm so pleased your medication and primal has worked for you.

      I'm not too bad with fatigue and pain at the moment its just morning stiffness more than anything and a hot shower normally sorts that. RA is such a wicked disease isn't it hardly anyone understands how awful it can be and how it literally can ravage you to pieces. I'm very glad to have come across you and your success it's not often!

      I've just seen you take actemra, I think that's the same medication I'm on now but in the UK we call it tocilizumab. It's truly the only thing that's worked thank heavens for modern medicine too, I know most primal fans dismiss cw but this drug has truly changed my life to a point that I can focus my diet now to try and recover as naturally as possible.
      Last edited by Hippychick; 08-04-2013, 10:01 AM.

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      • #4
        I highly recommend including bone broth and probiotics, prednisone does a number on your gut. Bone broth is so healing it will benefit your overall health. My son was on high dose of prednisone for months so I'm familiar with it's effects, it takes awhile for your body to heal from it.
        Life is death. We all take turns. It's sacred to eat during our turn and be eaten when our turn is over. RichMahogany.

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        • #5
          Hey hippychick, I too have RA and other auto immune disorders. Like Jammie's, I cut the nightshades from my diet and am low lectin also. Amazing difference this has made. I'm off all meds except for thyroid replacement and doing so much better! Best of luck to you and your journey to wellness!

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          • #6
            Thank you both, it's so inspiring hearing about RA success stories, I don't think I've come across a community where there are so many.

            Will definitely look into bone broth, I've mostly cut nightshades but probably should focus on doing that 100%

            Well just woke up after a full day of no diclofenac or co codamol yesterday, I'm actually not feeling too bad, I made it to the bathroom and back in one piece. I'm sure stopping anti inflammatories will invoke a temporary inflammatory response, must ride through it.

            I'm off to take little lady up to see family today for a couple of days, my Mum knows what I'm trying to do but she's a bit clueless really, think i will be giving her my copy of PB to read.

            I really need to investigate low lectin too but I think it cuts out eggs, what on earth do you eat, I think I'd get very bored of just steak and leafy greens.

            I think I'm going to need to be patient I've had RA for 8 years it's not going to get better overnight!

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            • #7
              Welcome hippychick. You are doing so well in being proactive about your own health and I wish you well. It's so good that you have a positive strategy to follow and I'm glad you are finding improvements already. I admire your attitude. (and the other posters with similar histories - Grok on people). Best wishes.
              Annie Ups the Ante
              http://www.marksdailyapple.com/forum/thread117711.html

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              • #8
                Thank you Annieh

                I'm feeling good today I had my first weigh in and I'm down 3lbs, not bad for a week, I'm also experiencing an increase in inflammation but that's because I've gone cold turkey with the diclofenac, I imagine my bodies response is to produce more inflammation to account for tge lack of chemicals, hopefully it'll settle soon into a slightly more natural equilibrium if that makes sense?

                I also invested in a crock pot today and have found somewhere that sells organic bones for virtually nothing so once I'm up and running I'm going to try bone broth, a quick google explained the benefits and I am sold

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                • #9
                  Today was good apart from I had zero sleep last night, visiting family and little lady decided to play merry hell about going to sleep.

                  Ho hum, we made it out to the park and I played with DD outside in the sunshine for 3 hours (well she toddled around) so plenty of vit d soaked up today and I'm hoping she sleeps better tonight.

                  I've placed an order with Abel and cole for seasonal organic veggies, organic meat and a few organic bones plus some lovely looking grass fed butter, yum.

                  My inflammation is calming down I'm certainly not as stiff today or in as much pain.

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                  • #10
                    Good to hear the inflammation is calming down. I raise my own chickens for meat and eggs as well as my own turkeys. I have cut out eggs before with no huge difference, so now I just try to limit them. Try drinking lots of water with lemon added to flush out the toxins. I also have begun skip breakfast most days or eat wild caught salmon to reduce my inflammation. I cut out alcohol recently and that has really helped too. Many days I only eat 1 meal lately as I am often swimming at dinner time (the best thing of all) and get out of the pool too late to eat. Just keep taking it one day at a time and focus on being happy and well!

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                    • #11
                      Thank you, I enjoy lemon in water as a drink so might drink it more often maybe with a spoonful of Manuka honey in too.

                      Yesterday I had a slight fail and had a few gulps of diet coke, I used to guzzle the stuff but recently cut it out, my word it tasted awful. I'm not even going to look at the list of chemicals in it, moving on...

                      My organic bones are arriving today, along with lots of meat, fruit and veg I just need amazon to get a shift on and deliver my crock pot so that I can make bone broth.

                      I forgot to mention in my original post that last week I saw my surgeon in a post op appointment for my hip. My hip is now great, no concerns there but I mentioned to him my opposite knee is causing me trouble, basically I can't straighten it, I'm attempting to with exercise but its not really happening, anyway he took a look, wasn't happy and sent me for some x rays. Turns out the joint is shot, no cartilage left and needs replacing. However I'm not in pain so he's left it up to me to decide what to do. I can go on the waiting list today (on the nhs here you can wait up to 18 weeks for surgery) or I can hold off until I feel I need it then if I'm in a lot of pain he will bump me up the list as emergency.

                      I'm inclined to wait it out because once the knees been replaced it'll need doing every 15-20 years, I'm 33 so that's a lot of surgeries potentially. My physiotherapist seems to think I can straighten the knee eventually through continued exercise. I'm also wondering if bone broth will help me regenerate the joint slightly? I've got nothing to lose really have I!

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                      • #12
                        My bone broth is cooking away, it smells lovely a bit like beef casserole. It should be finished this afternoon so I will try a cup then and save the rest for this week.

                        I have high hopes for this stuff!

                        Last night we ate organic pork belly slices cooked straight on the BBQ my word they were delicious. I definitely think my taste buds are coming back.

                        Hubby is out for a massive cycle ride this am so I'm thinking of taking little lady out for a walk in her stroller.

                        I think plan for dinner tonight is salmon steaks, probably brushed in olive oil and thrown on the BBQ again

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                        • #13
                          Hi, just to say cutting out nightshades also cured knee inflammation I'd suffered from since a boy - I know there are different types of RA, but its always worth trying, the chances are it will do some good
                          Healthy is the new wealthy.

                          http://www.facebook.com/groups/ances...handnutrition/

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                          • #14
                            Thanks Owen, I'm going to cut down on things gradually I think, my problem is if I go all out and chop out everything 'bad' at once I end up failing after a day or two.

                            I'm going to cut out dairy from tomorrow for a week or two then I'm going to cut nightshades altogether and see if I feel better.

                            I know this is going to be a slow process for me but I have a feeling it'll be worth it.

                            I've just planned my meals for the week, trying to get a little more creative than simple steaks and veggies.

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                            • #15
                              You can use those same bones for a second round of bone broth. Make sure to add a little ACV to the water and let it go again. It won't be as rich as the first round, but still really good for you.
                              Also, when you do cut out the nightshades, be sure to use lots of black pepper for the hot pepper spicy flavor. If you don't use turmeric, try it. It is also a great for inflammation. You can also take curcumin which is the active ingredient in turmeric.

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