Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Look what I have been up to !

Discussion in 'Rituximab: News and Research' started by Rebecca2z, Oct 1, 2015.

  1. Rebecca2z

    Rebecca2z Paradise, Ca

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    This is related to Rituxan news !! At least to me it is.
    Attached is a sad and funny photo- it's a before and after RTX - the photo on left is the damage of
    Epstein... oops I mean CFS ! Photo on the right is the result of Rituxan.
    TRUE STORY !

    This is how it is going in my entire house, just amazing !! Not showing off - but truly want you to all not give
    up !
     

    Attached Files:

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  2. Mary

    Mary Senior Member

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    @Rebecca2z - my entire house looks like photo 1 (even worse! :eek:) (although afraid it looked like that before I got sick .....)

    Am very happy for you!
     
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  3. Sushi

    Sushi Senior Member Albuquerque

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    Golly gosh! Are you for hire! :lol:
     
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  4. Rebecca2z

    Rebecca2z Paradise, Ca

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    LOL @Mary too funny ! Before I got sick I used to be very very organized. So this is actually embarrassing !

    I am not wasting a minute of this good health I have no idea how long it will last. I did the whole office space by myself except for putting the heavy glass down, hubby did that for me.

    @Sushi I may have to come shape your place up I am running out of stuff to organize !!
     
    Last edited: Oct 1, 2015
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  5. whodathunkit

    whodathunkit Senior Member

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    O...M...G. Rebecca, that's fabulous!

    I was much better at cleaning and organization before I got energy problems but even on my best days I don't think I was THAT good.

    And I'm much better these days thanks to methylation and gut therapy but I still ain't as good as that after pic. It's so shiny it hurts my eyes. ;) :lol:

    I second @Sushi. If you lived out East I'd definitely try to hire you. I suspect if you wanted you could find a pretty lucrative new career being a non-judgmental, empathetic/sympathetic organizer for people with energy problems and psych problems like hoarding (which I suspect are in large measure energy problems at their foundation, anyway).

    You are my new hero. You go, GF! I hope the effects of Ritux last permanently for you!

    Yeppers. I'm there, Sister. :meh: :rofl: :rofl:

    Edited to add: @Rebecca2z: where do you like to go for containers/organizing supplies? Any tips in that regard? I've been having some moderate success with my house lately thanks to energy uptick (like you, I say NEVER GIVE UP!) , but am kind of reaching the point where I'm getting a little overwhelmed again, in part because I don't have good supplies for consolidating space efficiently. I'm not going to let myself stop but being able to find some decent boxes and some movable partitions that make shelves and stuff like that will help keep the momentum going.
     
    Last edited: Oct 1, 2015
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  6. Martial

    Martial Senior Member

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    My home/ work environment looks like your before even when healthy lol
     
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  7. Sushi

    Sushi Senior Member Albuquerque

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    I am NOT going to post a photo of my closet.:jaw-drop: The bedside table thread last week was shaming enough!:nervous:
     
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  8. Hip

    Hip Senior Member

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    What a great illustration of the nature of ME/CFS!

    I definitely recognize the beautifully-organized desk on the right as me prior to developing ME/CFS; and the more messy desk on the left as representing the decline in my organizational and tidying skills after being hit with ME/CFS.
     
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  9. Rebecca2z

    Rebecca2z Paradise, Ca

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    Aww you guys are so sweet, thanks ! Seriously I was always organizing and I loved decorating but it has been many years since I have been able to do these things. This kind of activity in my new Rituxan life really confirmed it wasn't all in my head.

    You know I often have wondered over the last 30 years, "am I just lazy, is there something mental with me" So many years of not getting doctors to hear me, tests showing nothing, you begin to question yourself. You almost forget what normal is. But now I remember and this is the
    old me.
    @whodathunkit, ( love your forum name ! ) your comments are so sweet, thank you. I am really thrilled to hear you are also having a "uptick" I was wondering what kind of gut therapy you had ?

    You know I have a friend in Oregon who is a professional organizer for hoarders and I sent her the pic and she wants to use that on her site. ( she won't because it isn't her work) but I thought that was a pretty big compliment coming from her. I actually would love to help people who have that issue.

    I bought all the containers on line, a place called The Container Store. They have everything you need to organize any area of the home. Everything in that 1st pic except for a few books is still in that desk area. I hardly threw anything out. Having the right containers sure helps. I know you can do this !! http://www.containerstore.com/welcome.htm

    @Martial, This is probably not your strong suit as they say, I bet you can cook though ? I can't cook at all ! :)

    @Sushi, Well I wouldn't have posted this if I didn't have a decent after ! I mucked out my closet back when I was flying high on decadron and solumedrol, remember that whole thread ! lol I thought it was Rituxan. Jeez I was begging my husband to get me a hammer, I was ready to build a house on that stuff !
    Man my closet looked amazing after that and I have been able to keep it up since the Rituxan. But it was so bad I would never show the before of it, so I hear you !

    @Hip, that is exactly right, I used to be this organized too and I enjoyed being so. (Before I had that taken from me in the 80's) I never ever thought I would become this well. I really feel I am back.

    We have to keep the pressure on the powers 'that be' to get Rituxan or something out to people like us and ASAP !
    People's lives are seriously compromised from ME/CFS, simple things like cleaning, shopping and chatting with friends shouldn't be the struggle they are.
     
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  10. taniaaust1

    taniaaust1

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    Wow.. Im so in awe of this that I tried to send the link to a friend but as it seems to be in a member only section (why is this?) he couldn't open it.

    Thanks for showing us. This is really a great way to get across to people what ME/CFS does to us. People who see my house sometimes just assume Im messy when in fact though I are messy before getting sick, I also was able to clean up that mess so things at times were very clean.. something impossible to do now so mess builds and builds
     
    Last edited: Oct 1, 2015
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  11. taniaaust1

    taniaaust1

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    Another way of doing things like this is with ordinary strong boxes... which can be covered in decorative wrapping paper.

    My old friend has a great home made set of shelves in his old home going right across a wall. He just used some very old pieces of wood and some bricks to do it (no building skill required). It looks so great I'd do the same if I had room for another shelves. (I'll try to remember to get a photo of it whenever I next get to go there).
     
  12. whodathunkit

    whodathunkit Senior Member

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    @Rebecca2z: Ah, the Container Store. We have one here in but have never gone because I heard it was overpriced. Looking around at the website, however, I realize it's not too bad, especially for it being a one-stop shop. Irrational prejudice based on hearsay strikes again. Which really sucks when it puts contrived obstacles in the way of progress. When will I learn? :rolleyes:

    Anyway, I'm-a go there tomorrow. Please pray for me that I do not buy the farm. ;)

    It's a good idea but not doable at the present. I wish I had the energy for doing stuff like that, but right now I don't. Doing that is like extra stuff I have to do before I do the stuff I need to do (that is, I have to find boxes and make them pretty before I use them for organization), and I can't afford that. I'm doing good energy-wise but still fighting off being overwhelmed with the details of cleaning up over a decade of mess, so won't add more details to the mix. I honestly don't want to go shopping for containers either (because decisions and choices have to be made, measurements taken for fit, etc.), but I need a solution and I really need to put most of my energy into cleaning and organizing, not making stuff before I use it. I actually used to do a lot of things like that and let the things get tatty and wound up throwing them away. I have a lot of stairs, too, so dragging bricks and boards around at this point is out of the question. I actually had some brick/cinderblock/board shelves back in the day that I also threw away some years ago because they were bulky and heavy to move, and the bricks and cinderblocks flaked.

    Sorry for being such a nattering nabob of negativism. :) they are good ideas and something I may circle back around to in the future.
     
    Last edited: Oct 1, 2015
  13. panckage

    panckage Senior Member

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  14. Rebecca2z

    Rebecca2z Paradise, Ca

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    LOL @panckage , that is pretty good. Did you see right in the middle of article was an ad for Hoarding Clean Up
    services ! What's the meaning there ? No win on this one !
     
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  15. Rebecca2z

    Rebecca2z Paradise, Ca

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    @taniaaust1 I love that idea of covering boxes with paper, now that I have a functioning brain ! If these boxes get dirty that is what I am going to do !
     
  16. whodathunkit

    whodathunkit Senior Member

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    Automated ad targeting there. I think there is no meaning except the algorithm the HuffPo/ad company works on what you've searched or typed into your browser lately, as expected. I got an ad for natural hormone replacement. ;) In this case it was testosterone, but IMO the operative word in the ad was "natural".

    I had a bumper sticker on my first car that said "A clean car is a sign of a sick mind". I'm still trying to figure out if I was psychic or just had an odd sense of humor as a young 'un. And ironically (or perhaps not), my car has been much neater and cleaner than my house for some long number of years now. :lol:
     
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  17. Hip

    Hip Senior Member

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    Those two "before and after" rituximab pictures are wonderful; they tell you a lot about how ME/CFS affects the mind and one's cognitive abilities.

    It is so clear that your desk area in the "BEFORE RITUXAN" picture is covered in bits of paper displaying all the things you are working on; all the things that you need to do, and all the things you need to remember.

    These sorts of mnemonic "to do" notes are frequently necessary in ME/CFS, because with the brain fog, your ability to remember what you were doing earlier (even 5 minutes ago) is badly compromised. So you need to be surrounded by memory joggers, just to try to keep on track.

    Whereas once your ME/CFS brain fog was fixed by the rituximab, as is so nicely illustrated in your "AFTER RITUXAN" picture of your desk, it is apparent that your own mind and memory are now back in command of all the facts and details in your life, and so you no longer need to cover your environment with various memory joggers.


    Much of my stuff around my desk and shelves (and entire room in fact) is, of necessity, messily placed out in front of me, rather than filed away, just in order to remind me of what I should be doing, and to keep me focused on my current tasks.

    I used to be a very tidy and organized person, and loved all sorts of tidying paraphernalia like boxes, files, folders, filing systems, pen holders, etc. But now with ME/CFS, not only do I not have the mental energy and mental organizational clarity to file or tidy things; but moreover, I find once I file something away, I will unfortunately totally forget about it for months or years, which is not good if you need to keep focused on that particular thing.

    So I find the messiness of my environment arises from the lack of mental energy to tidy things, but also from the need to be surrounded by things that jog your memory, whether it is "to do" notes, or strategically-placed jars of vitamins or drug packets to remind you to take your medications.


    Those two "before and after" rituximab pictures say it all!
     
    Last edited: Oct 2, 2015
  18. drob31

    drob31 Senior Member

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    Photo #1 looks 10x better than my house, lol.
     
  19. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Hip you are so right, I don't have to have notes all over the place, not anymore stuck to the coffee pot either !
    It's actually very Notable.... lol
     
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  20. Sushi

    Sushi Senior Member Albuquerque

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    It isn't in a Members Only section, rather a public one.
     

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