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No Longer Naive in the Ways of The Beast
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GOOD things happening!! Am I a responder???

Discussion in 'Rituximab: News and Research' started by Jacque, Aug 27, 2012.

  1. Jacque

    Jacque Senior Member

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    So Dr. K is pretty impressive right Sherlock? Yet humble and down to earth and CARES.... And yes Tia it is good stuff... it is giving me my life back...day by day... I am so excited... BIG changes... I will write about them soon.
    ThatBloke likes this.
  2. Jacque

    Jacque Senior Member

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    Ohhh and BTW the Melt Downs are done for now... Just a few regular power surges but nothing to write home about.... soooo interesting!!
  3. Jacque

    Jacque Senior Member

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    Well I hesitate posting cuz last time I posted how well I was doing I crashed the next day:mad:.. But .. I just have to write about what is goin ON!!!

    I am no longer havin the major sweats... just a few warm flashes now and then...

    But amazing things are happening... I just browsed through the last two weeks of my notes and holy moly... I only spent 2 of those days on the couch...!!!

    Prior to starting Rituxan - I could not drive myself, was on the couch 80% of of the time, SEVERE flu like symptoms, "out of body" feeling, dizzy and lightheaded, severe muscle and joint pain, entire spine burns, and severe weakness.

    I am now driving everywhere I want to go and don't even think about it...I am BACK in my body, no longer dizzy and weak... Muscle and joint pain have decreased... but still there along with spine pain... but I would say pain is down ummm 25%... GET THIS... I was watchin TV the other night (I am still up till 3am:confused: and I saw this neat exercise machine...and I bought the damn thing!!!!!!!!!!!!!!!!!!!!!!!!! WTH??? I just wish you knew how HUGE that is for me... I could barely get dressed and cook dinner ... let alone think about possibly being able to exercise... I hope I am able to do it... Stay tuned on that one.. But so what.. It is HUGE that I even picked up the phone and purchased it!!!

    I am still having to take 4-6 Norco a day for pain and am hoping that I am someday able to decrease it...

    In the last week I shampooed my rugs, mopped the floor, groomed both of my Shitzus - ugh, detailed the inside of my jeep, doing outside tomorrow, house is clean, dinners cooked, sold my motorhome and cleaned the whole thing out, been on a few outings, meals out, and today after detailing my jeep and being UP all day and working...I decided i wanted to take Sugar n Spice for a walk on the beach..........................

    Ok............Sumthin GREAT goin on around here....and like I said I may crash this week but I am soaking up this new found "life force" like a sponge...and not taking one minute for granted!

    I am obviously a "responder" ... so we will see what the future holds... Maybe after 35 years of suffering it is my turn to LIVE now...(where is the happy face with tears flowing)? Most people would just laugh at how excited I am to be mopping my floors, and walking on a beach...

    But.............. you ALL.... GET IT!!! There is hope for all of us.... They are on to something... Is it the cure? No one knows at this point but my body says they are ON to something!!!

    Stay Strong My Friends!!!
    RL_sparky, jimmy86, camas and 7 others like this.
  4. alex3619

    alex3619 Senior Member

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    Something going on around here ... wonder and joy, wonder and joy. I am so happy for you Jacque, and you give us all hope. I am hoping things only get better from here, Alex.
    merylg likes this.
  5. Jacque

    Jacque Senior Member

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    : .... ) I am crying happy tears after writing that... It was as If putting it into words made it REAL... you know how the days flow together and you don't even realize what you are really doing??? I just re read it...so may mistakes and typos...got excited writing it I guess.. lol WONDER AND JOY!!! I do get that FEAR crap sneak in saying "how long is this gonna last etc" and I quickly go back to being in GRATITUDE mode for the moment!!!
    merylg and alex3619 like this.
  6. Hanna

    Hanna Senior Member

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    I am so happy for you Jacque! Please, continue to report your Rituximab journey,it gives us some hope!
    Jacque likes this.
  7. GracieJ

    GracieJ Senior Member

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    I wore out just reading! Um, what else are they slipping you?? lol Keep it going! Wonderful news.

    Any way you'd come detail my little beater car now? It just isn't happening.
    Jacque likes this.
  8. peggy-sue

    peggy-sue

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    :hug:
    I'm crying happy tears for you!
    Jacque likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    Im happy for you :balloons: but also scared for you and how much you are chosing to "suddenly do" while your body STILL has a lot of healing to do.....

    I hope you dont do to much and crash and loose this opportunately to just keep on healing... Make sure you are still staying within the new limits. Sometimes it can be wise to be testing out new limits slowly.

    best luck.
    Jacque and jeffrez like this.
  10. CJB

    CJB Senior Member

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    Happy tears, Jacque. Just let someone else re-roof the house 'kay?:hug:
    GracieJ and peggy-sue like this.
  11. dsdmom

    dsdmom Senior Member

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    yeah Jacque! How many weeks are you out now? When is your next round?
  12. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Wow, Jac, you are the champ. If the Norwegians had you in their pilot study, I think they'd have come up with a different theory than the one that they did.

    I hope that you're getting extra rest to help you get over the extra activity.

    What exercise machine did you buy? :D
  13. Scavo86

    Scavo86 Senior Member

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    Congrats Jacque, when was your first infusion and how many have you had thus far?
  14. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    It's funny to me when you say detective, because without insurance the only avenues that I have are the observing and logical deductions. :)

    It's surprising to me that you're even doing better with the OI. I remember you'd said that you gained some weight - maybe if a lot of that was water weight that'd explain being better able to stand - you know, the increased blood volume.

    My OI and dizziness was never really bad - at my worst I would have to sit my way down the stairs for fear of pitching headfirst down the steps, but that wasn't usual.

    Exercise? I do everything now. Run, jump, lift, play.
    I took a quick look at the Access Bars - with CLA - but I've never had to lose weight - I think most high-histamine people are probably that way.

    Less anxious? That's another unexpected thing, AFAIK. It seems the immune system can affect anything and everything - maybe one day the pain will get better, too. Best wishes for you.
  15. richvank

    richvank Senior Member

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    This is just wonderful, Jacque! Keep on keepin' on!

    Best regards,

    Rich
  16. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Interesting is right! :)

    After having studied the immune system for some time, here's how I see it all: imagine a huge cage, with lots and lots of chimpanzees and monkeys of all kinds inside. Some have big mallets, used for bashing invaders that come in the cage - but sometimes they hit their own or each others' toes. Besides that, they spend all day writing down messages on paper, then folding the messages into paper airplanes and shooting them at each other across the cage. The messages can tend to get each other all stirred up, and the all-around bashing increases.

    It seems that Rituxan has managed to really cut down on the paper airplane traffic and with everything being calmer, normal existence can go on.

    Anyway, that's that's the most scientific view that I've come up with :D:D
    Little Bluestem, Jacque and Sushi like this.
  17. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    yep, he seems to be innately likeable
  18. Tammy

    Tammy Senior Member

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    I am also crying happy tears for you..............it must be such a HUGE relief after feeling like death warmed over for so long. I am so happy for you! This calls for a group hug! Reaching out over the air-waves and giving you one.
    Jacque likes this.
  19. Jacque

    Jacque Senior Member

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    Friggin LOVE it!!!
  20. Jacque

    Jacque Senior Member

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    You know not that you say it ... I do feel very fluid retentionish.... :) I love makin up my own words... My legs feel swollen and I just feel FAT...and have only gained 5 lbs... the 5 that I lost when I thought I was on my way out of this world... hmmm I think it is water... My pants are tight and I just feel blumpy... with actually it about 6-7 lbs... I tend to carry a lot of fluid in my legs anyway but lately I just feel uncomfortable... Been thinkin about maybe tryin that drug that is mentioned for this...fluid balancing problem... Starts with an F... obviously my cognitive is not all that great huh...
    And in re to the Access bars yes they are used by peeps to lose wt... but mainly by athletic types and competitive ahtletes for that extra edge... He with the most glucose and least lactic acid wins...I guess.... There is also an Access drink and that is what I will be using bf my exercise sessions with my new fang dangled xrcise thingey I bought on TV... I think it is called Access Blast? I get the chocolate and it is nummmmy. Please don't think I am trying ot sell you sumthin... I am not even workin my biz right now...and am soooo BLESSED that is what pays my bills bc thank GOD I built residual... I have not worked in 2 stinkin years...:( You could order it from someone else... I would not be offended... So please don't think that I am trying to SELL to you... I just know you would LOVE the stuff...if you tried it... EVERYONE I have ever turned on to it does... And I cannnoot believe you can RUN, JUMP, PLAY... why are you even on here??? Sounds like you are doin awesome... If I jumped...I would land on the ground...for a LONG time... lol
    Little Bluestem likes this.

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