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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Week 16 :(

Discussion in 'Rituximab: News and Research' started by Jacque, Nov 2, 2012.

  1. Jacque

    Jacque Senior Member

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    This is my update for the last 2 weeks.... I am at week 16, just had my 3rd infusion a few weeks ago. Feeling HORRIBLE... that little window of more energy has now closed again. Pain level is a good 8-9 daily from head to toe- neck the worst, OI issues bad, constant dull headache.

    Boyfriend came home from work today and pulled up his pant legs to show me his socks.. One black-One white - to ask with a grin on his face if I could manage to do some laundry soon... We both cracked up - but I really wanted to cry. Been doin lots of that lately too...:cry: I have been patient for ANOTHER 4 months trying this new route with the Rituxan. Have been on many routes and all I ever felt was "broke"... Hard to keep the faith but I am tryin. Doc K says patients usually respond around 22 wks, if they are going to.

    I used to be able to look around and see someone who had it much worse than I do...in regard to health... that is getting very difficult to do... Lately I have been trying to imagine something worse than this CRUEL illness...and I guess a burn victim in a burn unit would be horrific - but at least they would eventually heal and get out. At least they know there will be an END to their state of suffering...

    This wicked disease feels so terminal in spite of how absolutely determined I am...:mad: Wish I had something more positive to say... but just keepin it REAL!!
     
    MishMash and vli like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    odd coloured socks is the trend.
    hope things get better for u soon.

    cheers!!
     
    HTree likes this.
  3. taniaaust1

    taniaaust1

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    sorry to hear that you are feeling this way, I so hope you do improve by that 22 week mark.

    ohhh you too.. I posted earlier about doing exactly the same thing in the joke thread.. the joke was on me.. I'd been trying to find the missing socks for the odd ones in my drawer.. not realising their partners were on my feet (one blue sock and one white sock). I must of gone out to the post office wearing these odd socks today.

    lol as heapsreal said.. definately a trend today. Lets all have "Odd Socks Day" :) .. ahh that could be a new ME symbol. I actually just decided right now that I may purposely wear odd socks for once (rather then accidental) when I go to the city for the ME protest.
     
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  4. nanonug

    nanonug Senior Member

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    Jacque, I am so sorry you are feeling this bad. Have you considered that your trial of Rituximab is having nothing but a bad effect on you?

    Regarding the dull headaches, have you tried some Benadryl?

    I don't know if you have stumbled on one my posts yet, but I am of the opinion that ME/CFS is just undiagnosed Mast Cell Activation Disorder. If you feel capable, have a look at this post and count how many symptoms you have on that list. If it is more than a couple, it is quite possible that you may have MCAS.

    Good luck and get well!
     
  5. Jacque

    Jacque Senior Member

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    Wish we had some protests around here... but then again I wouldn't have the energy to go..... Love the sock idea...;)
     
  6. Timaca

    Timaca Senior Member

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    Jacque~ I appreciate your honest post. And I feel for you and totally understand your assessment of this blasted illness. If I ever win the lottery, believe me, the funds will go to solving CFS and those who suffer from it.

    All I can offer you is my online support, an online hug and the wish to hang in there and stay as positive as you can. For a brief diversion consider reading Dave Barry books (he's a humorist) or watching funny videos (I like Anita Renfroe, a comedian).

    Best, Timaca
     
    Jacque likes this.
  7. taniaaust1

    taniaaust1

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    Im arranging to do my own protest as I havent found anyone to physically join me in it. I'll be doing some of it laying (rest sitting) as Im not well enough to be upright for long periods. All it takes is one person to protest about something.
     
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  8. Jacque

    Jacque Senior Member

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    Can't read but love watching funniest home videos... or playin with my 2 Shihtzus Sugar n Spice!!! They make me smile... Hope I didn't sound too "dark" in my last post... I am just getting more and more DESPERATE the older I get... Just feel like my time is runnin out in so many ways... But always try to stay focused on my many blessings!!
     
    MishMash likes this.
  9. Jacque

    Jacque Senior Member

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    and THANK YOU!!
     
  10. MishMash

    MishMash *****

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    Jacque,
    Keep on keepin' it real! I don't think sugar coating things is a good idea. If a drug isn't working, don't cover it up with some superficial placebo feedback to the doctor. Many drugs aren't going to work. But, hopefully, RTX will be one eventually for you. And you are being an excellent test subject.

    I know what you mean about the poor folks who seem worse off then us. There's a gal in my office who has been in a wheelchair since she was 12 because of cancer in her spine. Here I am on this web site asking for sympathy because of CFS. She told me she never complains because she wants to keep a positive attitude. Even though she is constantly missing days because of infections and complications of her paralysis. I try to expression admiration for her courage, and she's like "whatever."

    The difference is I think some of these people are able to "get on with their lives." Even as severe as their diseases and conditions are, they are able to assume some level of normalcy. I don't know why, but that seems so impossible for people of our condition. It's an entire body impairment. I guess I don't have to lecture you. Keep us posted though!
     
    Jacque likes this.
  11. dsdmom

    dsdmom Senior Member

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    Hang in there jacque. I'm pulling for you!!!
     
    Jacque likes this.
  12. GracieJ

    GracieJ Senior Member

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    I think the word "normalcy" hits the entire management issue right on the head. Even cancer patients get to feel normal for a while in between treatments. If I had to name my biggest ME/CFS "side effect," it is LACK OF NORMALCY, compounded by weeks, months, years of the same. I've heard many people in active cancer treatment who talk about what they will do on their "good" week they KNOW is coming. I have absolutely no idea if tomorrow is going to be a good day or not... I may not sleep well, or I may have a round of IBS for two hours out of the blue, living next to the bathroom and canceling everything. I've improved functionally overall (activity level is 7 by the scale on here) and there still is no pattern to predict. I enjoy the good days and endure the bad, and that's as much as we can do at times.

    The good news... we are such strong, strong people, we learn to laugh and enjoy life in ten-minute increments as we can, even if it's odd socks!

    I'm finding also that I am very surprised at what "normal" people complain about. To me, they are non-issues, so I guess we REALLY are having totally different life experiences refining us as people.
     
  13. Jacque

    Jacque Senior Member

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    Yep after 35 years I don't sugar coat anything.... either I am feelin better or I AIN'T... And your "entire body impairment" is so correct and what people don't understand! In addition to riding a zig zag shaped roller coaster... I remember once I was being encouraged to go to a conference... I told they I absolutely could not...sit in hard chairs and walk long distances... But the reason they all really wanted me to go was the key note speaker was a guy who was born with no arms or legs and has managed to do all kinds of things with his life and they thought he could "INSPIRE ME" to move past this illness... Are you F'n kidding me???? And they all wonder why I have become a recluse!!!

    My reply was... Well.... If had been born with no arms or legs but still felt normal every day and not like I have the drop dead flu...with a brain that doesn't function half the time... I would have probably been PRESIDENT!! Shut them right up!! I'd like to think I am more evolved than to wish this on anyone but there are a few in my life who deserve it for being so downright MEAN and judgemental!

    I am grateful for all of you here... I hate it that you all suffer also... but grateful to know I not in this ALONE! We all wallow throught the umteen theories together and hopefully eventually crawl out of the abyss together... for many years I have visualized myself forging up a mountain with a flag in my hand saying HEALTHY and then finally getting to the top of the mountain and stabbing my flag into the ground... Time for a new visual! I think DANCING, since I don't get to do that anymore... ;(
     
  14. nanonug

    nanonug Senior Member

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    Yeap, misery sure does love company! :)
     
  15. Jacque

    Jacque Senior Member

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    All that I can hope is that there is POWER in numbers....:(
     
    ukxmrv likes this.
  16. ukxmrv

    ukxmrv Senior Member

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    It's not misery enjoying company, it's about sharing experiences warts and all.
     
    Jacque likes this.
  17. Snow Leopard

    Snow Leopard Senior Member

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    Me too, there is time yet!
     
  18. Jacque

    Jacque Senior Member

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    Yah...I don't regard any of you as being "misery"... I have the utmost respect for every ONE of you...as I know what you deal with on a daily basis... And this illness ain't for sissies!! I am in AWE of all of your collective strength and "wisdom"

    I'd rather have a diag of Cancer, or AIDS, or....? With those illnesses you either LIVE or you DIE... and when you get diagnosed people don't judge you and think it is all in your head...and you might even get a casserole or two with compassion - if you're lucky! Not JUDGEMENT - saying you are just looking for an excuse not to WORK!! If they only knew....

    I appreciate ALL of you!!!
     
    ukxmrv likes this.
  19. nanonug

    nanonug Senior Member

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    Well, you haven't met me yet! :)

    I hate to repeat myself but, well, you haven't met me yet! :)
     
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  20. lnester7

    lnester7 Seven

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    I am so sorry Jaque, I know what your saying. All I can say I hope you get better! Misery indeed.
     
    ukxmrv likes this.

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