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for only we who have MDS

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Viewing 3 posts - 31 through 33 (of 33 total)
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  • #22288
    Mary4Mike
    Participant

    I figured out the email that I received. It was from the MDS foundation informing me that a patient forum being held September 29th in Wisconsin has been cancelled. Sorry about the confusion.

    #22289
    Zoe
    Member

    Cathie,

    Do you mean the title at the top of a post? I think Mary changed the topic within this topic. On the main board does it still say "for only we who have MDS"? Mine does. I haven’t heard anything about the forum closing.

    Zoe

    #22299
    katydid
    Member

    thanks Zoe – I get it now – I didn’t know people could arbitrarily change the name of the forum
    But will take this opportunity to say goodbye as I don’t think this is the place for me – us kiwis ( from New Zealand ) have a culture of being very upfront and leading with our emotions and I know this has annoyed some people on here. I guess I just say what I feel and it ain’t always nice – or perhaps appropriate. So sorry to those of tou I have offended – my only real wish ever is to have ‘real conversations’ – I have lots of trouble with all the appeals to the almighty and other god references and with all the numbers that you’all produce. But I don’t wish to denigrate your faith – I just want to be in the moment – sad, angry, placid, inconsolable, happy, silly, – beyond help I am sure some of you think. But I have to laugh – I have free health care but no insurance , no mony and no future job prospects – my husband is not earing and I am nearly too sick to earn – I have a grandcild on the way – 3 daughters and a beautiful 13 yr old grandson – and wonderful parents who rely on us and whom I can no longer guarantee a future for – life is [censored] – and my faith is only in what I see touch hear and feel – which means – we will be fine – we will get through this and we will know that if death claims me it will be because that is the way of nature and the universe – but you see – I am not very good at remaining unemotional and reciting the numbers – I do know them all by the way – I just can’t be bothered reciting them . But one thing before I go – Eve – I did learn – I finally got what you said about keeping clean and avoiding crowds and using lots of disinfectant – that is when you have a low white blood cell count ( or, sorry is that platelet count ) you have to be careful – I don’t – I have a low red blood cell count which results in aneamia – symptons of which are fatigue – utter tiredness physically and emotionally, loss of memory, anxiety , confused thinking, lack of appetite and weight loss, depression,all of which I have – and I still have to work 6 days a week as the only breadwinner in my family. So again – sorry if I have upset or offended you – I won’t do it again – take care have faith and aybe I will see you in the next life.
    Lots of love – Cathie ( ps I am – contrary to some reports, actually a good person with a goodsoul – sorry I couldn’t show that in this environment )
    pps thanks Laurie, Zoe et al for you lovely support and sharing

    c xx

Viewing 3 posts - 31 through 33 (of 33 total)

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