Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 7, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi, everyone. i have been gone a long time from this board but i am checking in and just wanted to say 'hi' to everyone.

  2. znewby

    znewby Member

    So glad you are back on the board. We missed you. Hope you are feeling better. You will make our Saturday night! Love Znewby
  3. spacee

    spacee Member

    Glad to have you back...hope you are doing better!

  4. ladybugmandy

    ladybugmandy Member

    hi all. thanks for the good wishes. i am actually bedbound now and in constant agony. i hate to admit this, especially since many people are excited about the new discovery, but i think it has come too late for me.

  5. gapsych

    gapsych New Member

    Welcome back. How are things going with you?

  6. znewby

    znewby Member

    I recall you were improving for a while, but your health was going south before you left the board. Prayers that something will happen to turn things around for you. You didn't have pain before. Hope you found a doctor in Toronto for some support.
  7. isiselixir

    isiselixir New Member

    Glad to see you are back! The last we heard was about the assisted suicide and I was worried. I am sorry to hear you are bedbound and in constant agony. Are there people are to support you? Best wishes...

    ~ Rachel ~
  8. misskoji

    misskoji Member

    I am happy to see you back, many of us were concerned for you and you were missed.

    I'm so very sorry about your health declining. While i won't force it on you, I still think there is hope for you.

    When you say agony, are you having pain now, or is it neuro stuff or? I can only imagine how much you are suffering but it seems we're on such a cusp of a breakthrough and change now, please give it a little while longer.

    You are cared about by many here.

    Gentle hugs, and my prayers for you Sue.
  9. ladybugmandy

    ladybugmandy Member

    hi. thanks again. i actually left the board because i gave up. i paid some money to Dignitas, signed up, and sent my medical records to them. now, they are asking for $3000 just to show my papers to the doctors to see if i can be approved. i was going to send the money on monday but am having second thoughts because i do not think it fair to have to pay so much and not be assured approval.

    another problem is, the gov't there is trying to heavily restrict assisted suicides because they are unhappy about the reputation switzerland is getting. they have introduced a new bill which may pass in i would have to go before that.

    also, i have been trying so hard to prepare my mother and sister and find all the supports i can for them but it isn't working too well. they remain distraught.

    i dont have much pain. the agony is of a different kind. it just feels like my neck and head are saturated and are going to explode all the time. it is unbearable. i always think i cannot stand another day but somehow, i do.

    i just lay in bed or sleep and feel like i am lost in a tiny hole in my head. it is so awful.

    i just want to leave but i am so tormented about my mom and especially my sister and what will happen to them once i am gone.

    it will take a long time for them to see which drugs work. velcade alone is $45 000 a year.

    i just ..can't take anymore. but am so afraid.

    i heard about the piggy back theory and feel 100% that that is what is happening. it's a brilliant evolutionary development - a retrovirus with the ability to spread easily like a herpes virus. scary.

    [This Message was Edited on 11/07/2009]
  10. AuntTammie

    AuntTammie New Member

    I have been so worried about you....had heard about the assisted suicide plans and really hoped and prayed that you wouldn't go thru with it....but at the same time I can so totally understand why you would want to, and I hate knowing that you are having such a hard time....I am glad to see that you are back here, though....wish I could do more to help.....sending lots of gentle hugs your way
  11. jasminetee

    jasminetee Member

    Sorry to hear you're doing so badly. I understand how you feel.

  12. chrissy12

    chrissy12 New Member

    I am so glad you are back. You are so loved and cared for on this board.

    Please know we will all keep you in thought and prayer.

    There is hope!!!!
  13. ladybugmandy

    ladybugmandy Member

    sometimes its too much. sometimes you are too tired
  14. ladybugmandy

    ladybugmandy Member

    thank you. i am high on benzos right now lol...i will take your advice and cut down on valcyte ...maybe 1 pill a day...and see what happens. i am terrifed. what if the HHV6 are in my CNS and replicating and the initial relief i had from the drugs years ago means something? what if the viruses are all strong and resistant now and they start spreading out of control? i will just jump out the window and not wait for switzerland.

    you know its just a matter of time ..i have to go everntually. i am not in a position to wait years for effective drugs...and no one is going to give me velcade in canada.

    besides my liver is probably shot by now from the valcyte. i dont even get bloodwork anymore.

    those companies that want to test new compounds on XMRV...that will take trials forever...mice..then animals..then humans..then phase 1, 2, 3, ETC ETC aaaaaaaaargh

    its almost hursing home time...
  15. LonelyHearts

    LonelyHearts New Member

  16. znewby

    znewby Member

    Cort posted this today. Someone emailed him this message. He is referring to Dr. Klimas lecture a couple days ago

    She gave a fantastic lecture to a full house in Miami on Saturday (Nov. 7th) about XMRV and what it means to CFS patients as well as those with other neuroimmune disorders. I don't think I've seen her this excited about anything like this in 20 years. She truly believes this is a turning point and a time for us to offer encouragement to everyone suffering with this illness. She really stressed that we should be encouraging everyone we know and not let them give up hope now because we're just too close to solving this puzzle. Dan Moricoli made a video of the lecture so it should be up on his site before too long. It was excellent and very informative. She really knows her stuff and knows how to get the information across in a manner even I can understand! You'll be interested in watching the video when it's up and running.
    I am just wondering if Valcyte is a drug a person should taper off. Wish there were a place for you to go to get the right care. Ladybug I fear you are suffering from a toxic drug rather than the virus. If it were me, I might consider going to emergency to have them help you with the pain. But I don't know what action you have taken. God bless.
    [This Message was Edited on 11/09/2009]
  17. Elisa

    Elisa Member

    I am in tears for you right sad. I will pray really hard. I know discouragement too. I am battling and it is so hard. I need to try to hold on and ask you to do the same. You have many caring and loving friends here and they want to support you and help you through this.

    So hang on please. God will find a way - even in bed - He will find a way. He knows, we all know.

    God Bless,

  18. Spinetti

    Spinetti New Member

    Good to hear from you!

    Hang on please. I think there is new hope now.

  19. gasolo

    gasolo New Member

    Hi Sue,

    I feel very sorry concerning your present suffering, but don't give up yet. As it turns out, the normal approval process for clinical drug trials does take a long time. This is probalbly not true concerning the XMRV retrovirus. Since many anti-retroviral drugs are already approved for HIV infection, the apporval process should be short and clinical trials can begin immediately. The same was true concerning Valcyte.

  20. hensue

    hensue New Member

    Only one person called me that and he was my Dad. I know you are suffering very bad but can I share this with you? My Dad suffered over 8 to 9 years with colon and rectal cancer. I am not saying his suffering was greater than yours. I did not want to lose him for anything in this world! I am thinking about your Mother? God Forbid and your daughter? You are not suppose to go before your Mother. It is not the order of life.

    As you can tell I have a lot of empathy for you, I am crying and praying that my lord will end your suffering.

    I think you are back on this board for a reason we are your lifeline! We will be with you and our prayers. This is an exciting time! We are having huge breakthroughs, it is not a time to give up! Hang on we have HOPE and along with the hope we have action.

    Drugs will do wild things to you, I know I just came off valuim, after your post I will probably have to go back on it. (warped humor) Please talked to us, by the minute exciting news is breaking and it will for you too.
    I think Gary is right this all happening really fast. It will not be like the aids. The trials are going right now.

    PLEASE do not give up!

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